Post Triple Therapy Side Effects: Joint Pain/Stiffness
Finished triple therapy Jan 28, 13. (early) due to side effects and now I am experiencing joint pain, stiffnes that
started a couple months after treatment.
When I sit for any period of time, my hips are so stiff and my feet are stiff too. My feet feel like they can't hold me up. Ambulation is not so easy. After a few moments of being up on my feet and walking the discomfort and stiffness goes away. I am also experiencing wrist pain, carpel tunnel type symptoms in one hand that I dont use much for writing or anything. Wakes me up at night. I am not over weight and I am very active. I don't understand what is going on. I was checked for autoimmun diseases and that was negative. My hep doctor denies any knowledge of such side effects post treatment and tells me this is what happens when we age. No way. No Way! I have worked out my whole life and am very active, before treatment I did kick boxing, zumba, weight lifting, pilates and yoga. No I can't do those things yet to the degree that I was before, but I am working on getting my strength and endurance back. I understand it take time, but...
Is any one else experiencing joint problems after treatment? What have you done to treat and did you get back to normal? I started taking supplemts: glucosamine, chrondroitin and msm to try and help but not so far. Triple therapy turned my body inside out and although I am feeling much better then I did when I was on treatment, these side effects are new to my body. I feel like an 80 year old instead of an active 50 something.. Thank you for any advice or sharing of your post treatment new side effects.
hi my hubby just finished triple tx but about 3yrs before he suffered pain in joints tingling in hands and feet pain in wrists just like carpel tunnel which i myself have had 2 ops for. Anyway they ran some tests and it turned out to be peripheral neuropathy. A furtur blood test told us he also had hepc geno type 1a. His liver was in good condition and the hep doc told us that the triple tx can actually cause peripheral but in hubbys case it can stop it from getting any worse and that is why he agreed to go ahead with hep tx since finishing tx the sx of perpheral seems to have lessoned, so it might be worth having a blood test to see if it could be neuropathy. Good luck and please lets us know. Jules
Thank you for the information. If this doesn't get better, I will ask for this test. I think chemo can tear our bodies apart and allow anything to occur new. I am hoping it isn't. My symptoms occured after triple therapy, so I am thinking chemo was a variable that led to or caused these symptoms. My muscle fibers ache sometimes too. Thank you for responding!
I'm so sorry to hear of this new problem for you. My own joint pain came up way before tx and seemed to be autoimmune triggered by the virus. Yours is quite a different story, but it is one that we hear occasionally on this forum. It does seem that a very small number of people have joint problems that are triggered by the interferon use. It is controversial, and many doctors do not "believe in it", but it does come up often enough that it seems to be in the category of uncommon side effects.
As for treatments I would suggest trying to find a good rheumatologist (there aren't that many good ones), and seeing what they can recommend. If it is a couple of joints, then steroid shots might help, but that's not helpful if it is more diffuse or widespread. The autoimmune diseases are notoriously hard to diagnose and the tests for them are not very good. As my internist recently explained to me - there are no straightforward tests to confirm or deny autoimmune disorders. The diagnosis always depends on a complex interpretation of multiple tests and physical exam results. Many cases require a very knowledgeable and perceptive specialist, and frequently different doctors will arrive at different conclusions for the diagnosis. Occasionally the diagnosis is so difficult that it is made after observing responses to different trials of medications. There are a large range of meds available for different autoimmune disorders, and some of them are innocuous enough to try even if you don't know what the problem is. One such drug is "Limbrel", which is technically not a drug at all but a medical food, tested to FDA standards and patented for its anti- inflammatory properties. I find it helpful and have taken it for the last six years, although I wish it was about 8 times more effective. Another fairly mild drug I use is Plaquenil. Anything you take for the joint problems should be approved by your hepatologist first. The primary arsenals of rheumatologists are all in the category of NSAIDs, and people with liver problems have to avoid all of those, so we are immediately frustrating to the rheumatologists, but they do have some other things left to turn to. Good luck!
In my case as far as my hands go I just figure all the over training and not stretching and repetitive motion activities snowballed. If you rule out all other causes and you still have some of these problems then you may have to learn how to manage the symptoms.
I wear something on my hand for sleep support when I go to bed
It protects my hands when I get in certain sleep positions.
Here is a video related to certain sleep positions:
Here are the videos that have been helping me
Ulnar nerve flossing:
I learned so many new stretches and exercises that I now do on a daily basis. This may not be what is wrong with you but the point I am trying to make is there is info out there so you do not have to live with pain and discomfort. I have learned a lot since EOT since I was just having TOO many problems. I figured it is timing and age and all the factors together since I felt like a broken doll.
It really does take time and if you were once an active person I am sure you feel impatient.
I believe my joint pain which was severe was a result of HCV. However, I felt so bad during treatment I was barely mobile which I believe worsened my condition.
I have found gentle or restorative yoga to be helpful. My joints had hurt so bad I as afraid to exercise them for a long time. I began to swim and when I found the movement to be pain free, it gave me the confidence to try the yoga moves. It is helping.
Like I have been told countless times, be patient and just stay with it, when you find the that exercises work for you.
I believe in time you will improve.
Ceanothus great to hear from you again. Your responce was the best (very hard to choose between you and Idyllic) but somehow it automatically came up rivll (sorry rivll) and when I tried to change it to you, it confirmed for rivll.. Your advice is sound.
Idyllic great to hear again from you too. I appreciate the sites to check on and am going to look into a wrist support device. I am awake most nights with the tingling and pain in my hand so the sleep positions will come in handy.
rivll thank you. I am noted for impatience in my recovery. It has only been a little over 3 months and I expect more from my body then I probably should. It is not easy. My husband & friends don't understand I am not back full swing although I finally look healthy on the outside again. My forgetfullness is unbelievable and I can't find words at times. Embarassing to say the least.
I am trying to get back into yoga, exercising and swimming.
Thank you all for your wonderful advice and it is a reminder to me how awesome this site is because of all of you!
Wishing you all good health & healing too.
I too finished triple treatment (with Incivik) early (at 24 weeks instead of 48) due to extreme side effects. I too, finished about mid January. My joint stiffness and pain is almost identical to what you described. It did not start with me until about 2 months ago but it sure is not just old age and I believe it is connected to the Interferon.
I have started doing warm water aerobics 3 times a week and it is helping. It is difficult to pinpoint all the body issues during treatment as I felt like death daily BUT this new condition was not part of my world prior to treatment.
Unfortunately my 12 week post treatment labs show the 24 weeks of hellish treatment did not kill off the virus so I will need to try a new cure when my body gets strong enough again. It will need to me much less side effects for this 60 year old gal to even attempt to go there again.
I started having hip pain at around 9 wks into Tx, although I had shoulder and knee pain prior to treatment.
I am about 9 months post Triple Treat, with 24 funs weeks of Victrelis (and the 4 wk leadin with soc)
My hip joints stiffen up if I sit too long, but especially on cement steps, etc.
I also developed kneee jointpain while Treating, but most of that has gone away. Today it is hurting where my inner thigh connects to the hip joint, but the hip joint also seems to pop out all together, only for a couple excruciating seconds, when I first stand up.
I am double jointed, and also turned 50 yrs, so that may also be a reason for someof these problems, plus I was a life-long skater~
I find gentle exercise the best, and a diet high in healthy oils, such as flax-oil, olive oil, and foods like fish, and veggies
Oh Grammy, I am so sorry the triple therapy didn't cure your virus. I will be tested again at the end of June. Thank you for confirming what I feel. I will keep trying different treatment modalities to feel better and you please let me know how you are doing. I would go through hell again to rid my body of this virus, but I wish some one was up front with all the side effects or is it that they really don't know...
Thank you for your responce. That stiffness is the same for me after sitting or riding in the car for a while. The popping out, I have felt in joints n my finges. I sure hope it doesn't go to my hips. I am hinking positive that all ill go away, better sooner then later :)
"My hep doctor denies any knowledge of such side effects post treatment and tells me this is what happens when we age. "
Well, let's just say I do not agree with that statement, LOL. Personally, I think many of the doctors who treat Hep C have are clueless as to the side effects of the treatment drugs (during treatment and long term after treatment) and I think that doctors say things like that when they have no clue what is going on and don't want to deal with it or try to find out what is wrong. So they tell us we are getting old and that is why we have certain symptoms. While I do think we develop some problems as we age, I do not think all problems which are attributed to age are truly due to age, and I do not think the problems you mentioned are necessarily from age, especially since you did not have them before treatment.
First, I would like to mention, that I feel 1000% better since treatment. I had a lot of extrahepatic manifestation prior to treatment (including pretty severe fatigue and no energy, back pain and spasms, hip and knee pain, other joint pain, creeping glucose levels, astham, allergies, and many others. I also had wrist pain, similar to yours but that is gone now. Since Tx I have zero fatigue, tons of energy, no back pain, decreasing glucose levels, no problem with asthma, allergies better, and a lot less joint pain and aches. However, I do have the same type of stiffness and joint pain/aches that you describe in my hips and knees. Now, I had hip and knee pain/aches/stiffness prior to Tx which I have since attributed to the Hep C. It was better towards the end of Tx and for a few months after I stopped Tx. However, I notice it is worse again now. The thing is, it is only stiff and painful when I first get up out of a chair, and stairs are difficult. After a few steps, there is no pain and no stiffness. In fact, if I stayed on my feet all day, I would not even have it (except for stairs). I can be on my feet all day long or walk for miles and my knees and hips do not hurt and are not stiff at all. So in that respect, this is a bit different than prior to Tx.
I do take supplements, but I have taken them for years. I am thinking about looking into curcumin, but I need to research that more before I do that. I know one forum member does use curcumin with good results. (Which is not to say you or I would have good results, LOL ... just depends on what is going on.)
One thing I am going to do is see a rheumatologist. I have an appt. in July at the University Hospital. My ANA is elevated and so I want to first rule out any autoimmune diseases, especially since they run in my family. I have been tested some and the other tests were negative for specific autoimmune disorders. But I need further testing to be sure. Plus, Tx can temporarily cause a positive ANA as well as temporary autoimmune disorders. These usually disappear after Tx. but not always. Once I am thoroughly examined and tested by the rheumatologist, then I will have a better idea of how to proceed.
I tried glucosamine and chondroitin for years prior to Tx, but I don't think it did anything, LOL. How would I know, though. It may have been worse without the pills.
Anyway, my plan is to see the rheumatologist. If he/she finds something, then I will go from there. If he/she finds nothing, then I will probably try curcumin. Either way, I also plan to continue walking and exercising and doing strengthening exercises. Some yoga moves are also helpful and help strengthen. I hope to steer clear of most of the western medicine type pills. I might look into Limbrel (thanks, Ceanothus).
The thing is, I feel pretty good, much better than before Tx, so I am not complaining. However, if I could get rid of this problem, I would feel even better.
Thank you Pooh for your respomce and suggestions. I believe the doctors do not know what all side effects can be. Really who knows how each individualized body will respond to the system wide poison of the therapy that may save our lives. As with everything in life, treatment too brings good & bad. I am so glad you are feeling better! I hope the rheumatologist finds relief for you. I am keeping my fingers crossed all these wierd symptoms I have now will recede. I am so thankful that there was a treastment and possible cure available. I would do it all again for a chance at a cure.
Hello, everyone above has given great advice.
I wanted to add that you are not alone. I don't know if you have seen it but the riba can stay in your system up to six months. I tried to drink more water to help me as I had read that dehydration can cause aching.
I am so sorry that your doctor tried to tell you that the sx that you did not have before tx are old age. I don't buy that any more than you.
I am now 15 months post Insidious (er Incivek) and still feel I am recovering. Saying that, I was diagnosed with cirrhosis so the sx were worse for me than for someone who had less damage.
I assume, because of that, that my recovery will take a little longer than the average bear :)
I can empathize with the thought process. I got so tired of searching for the right word, sentence or even name of a close friend. It was very frustrating. That has improved a lot.
I wish you the best and please don't ever feel alone, as one of my good friends on here has said, "it is very isolating" others do not understand...we do.
Hang in there, every day will be a tad better than the day before. I had times where I regressed but then rallied forth :)
Now, when I wrote that post on May 17th my hips and knees were bothering me and had been for a few days or weeks. Well, today they feel pretty good, very little stiffness and aching today. I can get up and down (from a chair) with no problem. Let's hope this continues, LOL.
I do think this is Hep C and/or Tx related. So I am hoping that as I get further out from Tx, I won't have it anymore. However, now I have some swelling in my ankles, feet, and lower legs, especially the left leg. I had this in Oct. and again in Dec. It eventually just disappeared but not before I went to a cardiologist. It is not cardiac related. Again, I think this is somehow Tx related and I am giving it time to just disappear on its own, but will continue with my above mentioned plan.
I agree with Dee, for some of these things I think they will improve in time. At the same time, the doctors need to get more educated and knowledgeable about Hep C, its extrahepatic manifestations, and Hep C treatment and its sequelae.
Thank you for your kind words, support & encouragement. I am going to keep plugging along. Just got my cotton candy/ Chemo straw hair cut into short and loving it. Will post a pic to my profile. I look forward to the months ahead & continued healing. I also wish doctors would listen better and become more educated/knowledgeable about the possible effects of the medicine they prescribe. I did speak to the nurses for peg & incivic & rib and told them of the symptoms I experienced. I was thanked and asked by the incivic nurse to call back in a year and update her on my recovery.
Wishing all a healthy recovery and if not yet, great new meds with a SVR!!
Hey there, thank you for the note. I have been having these upper arm shoulder pain. I have been looking everywhere to see if I can find out what it could be.
I did a search on MH and found that an imbalance in the body can cause problems. Magnesium is a good supplement to take a look at.
I am wishing you the best
Me again, I wanted to say that I have found Idyllics videos very helpful and intend to try to do as she says and treat each symptom as a separate occurrence. Since most hep docs discard us, for tx related problems, after tx I don't have a lot of choice.
I agree with Rivil, my first instinct was to rest when the shoulder pain happened, I now know that I need to move around in order to get the pain out
I wanted to mention that I recently remembered I had a bookd on trigger points, they are muscles that have knotted up and they provide pain and referred pain. The book is really helpful. There is an index where you can look up what your particular pain is and it will tell you where to start looking.
It is by Clair Davies and called The Trigger Point Therapy Work
I have used it for arm pain/ulnar pain, back pain, etc.
I just looked up the pain in my shoulder, upper arm, elbow down to the hand, the first thing that came up was the scalene muscles, they are in the neck. I originally thought a fall caused this pain in the left arm, when it started in the right arm, I started looking.
I hope we can all find something that works for us.
I have been dealing with much the same since finishing tx 9 mos ago. A rheumatologist offered a dx of Polymyalgia Rheumatica (not to be confused with Fibromyalgia). PMR responds to steroids (Prednisone) in as quickly as 24 hours as a diagnostic tool and then long term use. The Mayo Clinic is just one source of info, you may want to take a look: http://www.mayoclinic.com/health/polymyalgia-rheumatica/DS00441
I have a slightly elevated ana, but arthritis was ruled out and the Prednisone worked like a miracle; however, I won't continue to take it due to its horrible possible side effects. I suggest you avoid inflammatory foods and you may want to search out a Functional Medicine professional if you are not getting any answers from your doctors: http://www.functionalmedicine.org/about/whatisfm/
We've been exposed to a lot and the pros still seem mystified by short/long term side effects of HCV and/or its treatment.
This is a great discussion so I thought I would chime in too. I finished treatment 9 months ago and also experience joint pain, especially in the morning but also after driving in a car. I have not yet been able to get all of my good excercise habits established again and I believe that is a good part of the problem. I think excercise is one of those things you see the benefits you had, after you stop excercising. The anemia really incapacitated me during tx and then came winter and I really got lazy. I am trying to walk at least 3x a week for 2 miles but find myself making any old excuse I can. I never did that before. Anyway, I think stretching excercises are of great benefit for joint pain.
It is good to see all of you here - dee, pooh, idylic, bo girl, rivil, ceanathus and of course, floridan and faith
Yeah, I am still not back in the physical shape I was in, pre-tx. I have this ugly apron of flab, where I put all the Interferon and Procrit.
The exercise does help the joint pain, but walking and especially jogging on the cement, is completely out now, as that makes the joint pain worse,
On the bicycle, I make sure to keep my legs warm, if it is cold when I set out, and warm up in a low gear, for at least 10 minutes, before I start pedaling in a higher gear, which puts more stress on my joints.
I was thinking that when we getout of shape, we atrophy, so on the days where I feel pain-free, and try to pile on the gentle exercise. I also bought one of those exercise balls, which makes stretching easier~
wow!!!! i had to jump on this... i have the same problem. when i get out of bed in the morning i am sooo stiff in the hips and sacrum, i have to hold onto something. i have spasms that make me fall back on the bed. and when i grab my cane and put weight on it, my wrist on 1 hand hurts like hell. and 10 minutes later it subsides. had to share that. barry
Thank you for all of the advise and sharing of your experiences. It amazes me and I am so thankful for this site. I am walking 2 1/2 miles every day. I play petanque twice a week, work in the yard, use my huge yoga ball to stretch, wear a hand splint and proper body positions to sleep.
Hopefully as more months go by I will feel better.
I am noticing tingling sensation on my chin and sometimes on one of my calfs like you feel as something is going numb, but it goes away if I rub it. My memory plays huge games with me and it is so frustrating. I feel like a hypochondriac, but know I am not. Patiently waiting to get back to where I was before.
Wishing all of you the Best of Health. Thank you!
Like you I was very stiff and sore after tx, I felt like I had aged 20 years
I do think that as we get back to our pretx activities it does improve.
I don't feel as stiff as I did.
I am walking again and it has helped me very much both physically and mentally.
I have also read that if we are deficient in magnesium our muscles can not relax and have read that 80% of people in the US are deficient in Vitamin D
I have started taking daily vitamins again, I had stopped on tx as I was afraid of any interaction.
I'm so impressed at how much some of you are walking! Walking has always been my primary form of exercise since I have severe back issues and can't do most other forms of exercise, but I can't manage to get out for a walk more than about 4 days a week, and even then only 1 walk per week is as long as 2-3 miles. The others are about 1 mile – though they are almost always on hills, as I live up a pretty steep hill (first gear in the car). I usually feel like I'm about to collapse when I'm dragging my butt back up, as the steepest part is right near the end! I don't know how to find time for more exercise, as I'm still needing ridiculous amounts of sleep and then I am still very stiff and groggy until between 1-2 pm. Then I try to actually accomplish some things, still working on the backlog that grew while I was on tx! Every time I take time out for a walk I end up having to leave some task that I REALLY wanted to finish. It seems that I don't have enough hours per day of being awake and moveable to keep up with housework, laundry, gardening, shopping, cooking, doing my avocation of photography, and also exercising. I need more hours per day. My internist is trying to figure out why I'm still so tired and still need so much sleep, in the hope that maybe we can do something about it, so I'm hopeful for a solution. (For those who don't know me, I finished a 48-week triple tx in Sept.2012 and I achieved SVR, but I'm also cirrhotic.)
Well besides those accolades and complaints I did want to contribute what I know about magnesium supplements. I have used them for two purposes and they worked well for both. One is as a fairly gentle laxative. A single 400mg capsule a day will work wonders if you are constipated (remember "Milk of Magnesia"?). If you are taking magnesium for a different reason you should still keep this effect in mind. The other time I used it was when I developed restless leg syndrome during the last two months of my triple tx. Someone here suggested magnesium and it worked very well for the last month of my tx (and my bowels did too). The RLS went away by itself after I finished tx.
I hear ya on the struggle back to normalcy and hope this is not the new normal for us. We are on the same timeline (ending tx 9/2012) and having very similar post tx symptoms. As I said, I have a dx for PMR and it's all about inflammation.
When it was not really safe for me to go out walking alone (anemia) I was glad I had a Norditrack Skier. You can usually find them on craigslist for $50 or less, and they usually have been sitting in a garage for months (years), pretty dirty, but operationally like new. They have little, if any, impact on the knees, back, etc., and you don't even have to get dressed or leave the house to use it! LOL They have handle bars so you don't have to do the arm part (as some people find it difficult). You can adjust the tension and level to make it as gentle or strenuous as desired. Even ten minutes a day is beneficial. It's great for stretching and getting things moving (aerobically or not). Just a thought, and my wishes for steady progress to better health!
I was sad to hear about the cirrhosis. But happy about your SVR. I understand the fatigue. I have seemed to experiment with amount of sleep. Feeling exactly like you and not able to get much done. I could never get moving until the afternoon and then time runs out on actually accomplishing anything. Even though I was getting a lot of sleep I still felt fatigue. I decided the 9 - 10 hours I was getting to feel rested may be a cycle I put myself into. Maybe I was thinking wrong and I should try a change. With the daily walking, the supplements, stretching and healthy eating I was willing to try something new. I recently made myself get into a routine of going to bed by 10:30 pm (it takes about 45 minutes to actually fall asleep) and getting up at 7:30 am. I have my coffee and get busy doing things on my list. After a week of this I am getting to sleep a little sooner as my body adjust and I am more tired at night instead of during the day. I will say once every couple weeks I may actually sleep in but am careful not to get back into the same habit. It might be that the schedule I allowed myself to be on could have contributed to my overall & continious fatigue. This may not be helpful for you. Of course this is just one health problem we have to deal with in our health.
You have physical problems you deal with daily too that probably affect how you feel. But I find you to be on top of your health and your own star advocate. Maybe a change would help.
I wish you open health windows to comfort & energy.
I use a magnesium oil spray by a company called "betteryou" and it definately helped-they make 3 types-I used the "goodnight" spray as my sleep is poor-I was tested for magnesium and was shown to be deficient post treatment so would highly recommend supplementing it -you could also try dissolving some epsom salts in the bath for a magnesium boost,remember it works as a laxative if you ingest it so through the skin is more effective.
Thank you so much for the article! I am trying to understand it. Maybe I could get Hrsepower guy to take a look and intrepret for me. He is very good at doing that.
Pooh can you?
I want to understand it.
Thank you for the link. It is an excellant article! I read through. Amazing what damages our bodies can experience secondary to viral infections.
Where was the interferon side effects, oh boy, I couldn't find that.. Did I look over it? Thanks for guidance to it. Can you copy it and post it here?
I have bought the magnesium and started taking it too.
If anyone is taking Magnesium, don't take with calcium as they are chemically similiar and your body will send the calcium out the kidneys. I take my multi & calcium in the am and my magnesium in the pm (you don't have to take it with food, but I take it with supper). I am excited about the benefits and improvements the mag may bring.
Wishing everyone healthy & happiness.
Wow, I'm 21 out of 48 weeks into the Interferon/Riba treatment and I have experienced the same muscle pain in my joints, especially hips, back, and shoulders. I used to sleep 10-12 hours in bed and was fatigued and sore all day. I also found every excuse to not do anything due to the pain. I think I started to atrophy, and my doctor said to at least stretch. Apathy is the word. I've never been lazy, so I try and stretch daily. It hurts but I now can walk around the block. The 8 days have been unbearable, no matter what I did, the pain would not go away. I am taking way too many Advil and Tylenol/Oxycodone. I usually try to grin and bear it, but not in the last week. Today is better, mostly ulnar nerve and shoulder pain, and a wicked headache, but the back pain is gone. I have been following this string of posts and found the videos helpful and the fact that I do have to keep moving no matter what. Thanks and good health to all.
Although I did interferon with riba and not the triple tx, I found medicinal cannabis to be extremely helpful with the muscle pain and tension.
Brownies did the trick for me. I ate one after my shot and it counteracted the pain.
Tylenol did nothing for me.
( I think it's a horribly overprescribed med, that in itself can cause liver damage. Why do they tell us to use it ?)
Cannabis is used for fibromyalgia patients so it seems logical to use it for these pain related problems too.
I used cannabis in the first 8 weeks, but it made my tinnitus worse, and gave me headaches so I had to quit. This after smoking for 30 years. It was like a switch turned off and it made my symptoms worse, go figure. It definitely made sleeping easier, and eating, but not for the pain. I haven't tried brownies, but maybe I will.
I was given medicinal marinol in a capsule for several months due to the severe rash I suffered. My hep doctor told me he has lots of patients who use marijuana for the nausea and to feel better, although he does not prescribe it. The marinol was a miracle drug for relieving my pain and itch. It did give me a total head numbness the first few days as my body got used to it I think. I tried glucosamine/chondraiyin/msm combo as suggested and saw no relief from my muscles or joints. It seems swimming and getting up moving, massages, warm tub soaks helps a little. Now my feet, ankles, shoulders and I'm not sure what other joints all have to pop/crack upon using first time in the morning. I waddle like a duck with stiffness when I get up but keep moving and it gets better. I am going to do more research on connective tissue and joints. I am not sure anyone has a real answer as it probably is a cummulative cause from the virus to the torrential destruction of the chemo we take. But, I believe a positive mind & resolve to get back to normal may get us there, over time, one step at a time. Keep Moving, Keep Positive and be kind to your bodies. Don't over use pain medications. Stay under 1000mg of tylenol a day to prevent liver injury. Never take tylenol and an alcoholic beverage if you do consume such. Hang in there!!!
number of patients treated with IFN have developed lupus or lupus-like syndrome [72–74]. In these reports, many specific manifestations of idiopathic lupus such as malar or discoid rash, oral ulcers, photosensitivity, renal involvement, and anti-Sm and anti-dsDNA antibodies were represented, suggesting that these cases were not “drug-induced” SLE but instead resembled idiopathic SLE . Discontinuation of IFNα typically resulted in remission of SLE symptoms , supporting a causal relationship with IFN-. While only a minority of patients treated with IFNα develop SLE (1% of patients) , these data support the idea that IFNα can be sufficient to induce SLE in some individuals. Many more IFN-treated individuals develop a “lupus-like” syndrome , with some SLE symptoms which are insufficient to meet formal diagnostic criteria for SLE . IFN-induced SLE can be severe, and there are reports of life-threatening multiorgan SLE involvement including glomerulonephritis, serositis, discoid rash, myopericarditis, and vasculitis [77, 78].
Yes, it definately creates a lupus like syndrome. So much so my dermatologist checked me for lupus, it was negative. Wishing you great health & that you feel better soon too. Thank you for your research.
I would say about a month and a half after 12 weeks of triple therapy, the ligaments/tendons in my hands hurt as well as at my elbows. I can't seem to grasp anything without my hands feeling weak. I worked out before treatment with free weights but have a heel of a time doing curls. It is odd because this part of my body didn't hurt before treatment. I've been dealing with this for about a month and it doesn't seem to be letting up. Hope it doesn't spread to other parts. I also noticed that my migraine headaches took a back seat to the therapy. Once I stopped my migraines came back with a vengeance. Sometimes two a day. 2-3 times a week. Auras, lights, squiggly lines and headache. I told my GI doc this and he looks like a deer in headlights. Funny before treatment I asked about long term after effects and I keep asking. I guess we are the test subjects at this point.
I feel your pain, literally. The psychological adjustment is just as painful, too. It's like adjusting to your life being over as you once knew it. You sound just like me pre tx and then post tx. Next week will be one year since EOT, and many of us have experienced your post symptoms, some less and some more. Some resolved their issues entirely and some have not. I don't know if it is dependent on how long we had HCV and what it set in motion prior to tx or if it has to do with the condition of our livers and many other health factors.
My primary physician sent me to a rheumatologist because my ANA (inflammation marker) was slightly elevated along with all of the other symptoms you mention. It's not arthritis, it's not fibromyalgia, it's not exactly/for sure Polymyalgia rheumatica, Lupus, etc, etc., but at least my PP and rheumatologist don't blow it off. I don't even deal with the hepatologist who ran my study so I don't know what his take on it would be, and to some degree it doesn't matter as his job was just to get rid of the damn virus and so far, so good, and for that I am truly grateful! The rheumatologist seemed to be very familiar with the ANA, autoimmune issues, stiffness, joint/muscle pain being associated with not only HCV, but the treatment and put that in writing in the report back to my PP. They think I should apply for a disability and support me in that. I, too, am so debilitated I could not return to work. I can't sit, stand, walk for any length of time, I also cannot reach, lift, etc.so there's not much I can do. Just know that many of us know your pain and we care; I think we all think about each other all of the time. Try to find a good rheumatologist and maybe look into a disability. That would at least alleviate the mental strain of no job, no money and no health insurance. It is definitely a nightmare.
I'm so sorry you are having to go through this, and I too can feel your pain. It sounds much like my own journey except that mine started at the beginning, and the diagnostic labs done for those problems are what led to my HCV diagnosis. They never could definitively diagnose my autoimmune problems in spite of an incredible variety of tests. The results were always a little vague or borderline in some way. I've had these generalized joint problems for decades now, with the initial approach being tons of heavy-duty NSAIDs, which only made my liver sicker, followed by a long period of only minimally effective treatments, but always with the hope that if I could ever eradicate the virus then the auto- immune and inflammatory responses might subside. Initially my rheumatologists were extremely sympathetic and very pro-active in trying to find solutions, but then I was only about 36 years old when it all started. Over the passage of many years (I'm now 59) the symptoms did gradually become somewhat less dramatic, though still quite problematic in terms of the effects on my functions of daily living, but the same doctor's zeal to help me has nearly died out. It now seems that problems which were once seen as in urgent need of some kind of resolution are now more likely to be seen as a normal part of aging, so even if the problem is the same that I had at age 36, at age 59 it no longer is worth troubling the rheumatologist over. And this is supposed to be the best rheumatologist available in the SF Bay Area!
Fortunately, as the years have passed, the ferocity of symptoms has gradually reduced by itself. I'm sure part of that is due to my gradually learning not to push any part of my body too hard, which unfortunately has some negative sx on my general fitness as well as playing havoc on the self-esteem at times, but it beats having the underlying problems snowball into excruciating pain and disability, which they readily do when provoked. I'm learning this all over again right now, as I had joint replacement surgery on my right thumb this last Monday, due to severe osteoarthritis. My right hand is in a cast for three weeks and is unusable, so I have to do everything with my left hand. I'm not trying to do anything extreme, just the necessities of feeding myself, bathing, dressing (try pulling your pants up with just one hand - it is a lot more work than you'd expect!), and a little holding of reading material or one-handed computer work, and I've had lots of help from my hubby on almost everything. Nevertheless, it has sent my left shoulder and arm into a really painful inflammatory response.
My advice to anyone who has a new rheumatologist who is trying hard to help: get as much help as you can as early as possible, because my experience says that over time they will lose interest and you will gradually get more and more of the shrugged shoulders and "you are getting old" response. My HCV was finally eradicated and I was declared SVR about 6 months ago. I've been feeling better a little at a time, especially in the last two months, until this surgery caused a new inflammatory flare. I'm still hoping my autoimmune stuff will subside more with more time free of the virus, but its hard to know whether a post- interferon syndrome will just fill in the vacant spaces. I do really cringe whenever I read of people having these problems come up post-interferon. All I can say is let's keep on trying to get answers and get healing, and thank God we have this forum.
We post therapy are experiencing the same symptoms. I have not heard of any triple therapy/interferon tx doctors acknowledging our symptoms. I am also dissapointed in their sluffing off post treatments to "Old Age". We are the agent orange victims of hep c chemo therapy. It may be years before the doctors or drug companies acknowledge there are many post tx symptoms. I am in the medical field and I know, I don't know everything. I also know that what we are all experiencing is REAL.. period. The chemo we took has taken a measurable toll on our bodies and these side effects can't be impossible. Bottom line the experts do not know of all the damage the medications have caused us. For them to discount and make excuses is really sad/shameful. Take good care of yourselves. Eat right, get enough water & sleep, exercise. Listen to your body. I hope that time and self care will take care of or lesson your pains. It is not in your head, discomfort post treatment is real. Hang in there. Ceonothus you put it well, let's keep on trying to get answers and get healing, thank God for each other. Wishing you all the best.
Thank you so much for all of these articles! I really appreciate, I have been looking for some relation ship between the pain and HCVdamage, liver damage and then interferon.
I am having some bad tendon problems, muscle problems.
I just bought some magnesium oil in the hope that will help, I am also on my way to the doctor now.
Great thread, thank you all for your input
I have severe joint pain that came on aproximately 3 months post triple therapy. I am only 37 years old but I feel like I am 90. I was active and sporty b4 treatment but I can not even run now. My knees are the most affected and it is very painful. :( my doctors also act as if they never see this side effect but without a doubt treatment caused it 100%!!!!!! I am stiff all over now like an old person :( bums me out.
We moved this to the Post Treatment Issues because Floridian7 has been off treatment for 6 months+. Others that have added their comments haven't yet been off that long, and we'd suggest posting in the Hep C Community, as it could still be from the meds that have yet to entirely clear from your body.
Brandi I don't know what the damage or condition is for our post joint & muscle condition. I hope you have improvement and please know that it happens over time. I am almost 9 months post treatment and some days are better then others. I feel my feet painfully collapse like melting putty when I get out of bed and walk first thing in the morning, my spine and shoulders still crunch & grind with any kind of movement but worst in am. My hands and feet don't swell but fingers still do. My knees hurt occasionally. Hip stiffness after sitting for any amount of time. I found yoga first thing out of bed in the am is helping. I take magnesium and I walk every day. I know no one in the medical community is acknowledging this post side effect. I don't know why. I can only say, I am hep c negative at this point thanks to the therapy. I would do it all over again to have my life back. Now my life is not as it was but I am positive and each day post treatment I am blessed. We have to give ourselves the best nutrition, exercise, positive attitude, a strong belief in our bodies that we will heal. Remember we had therapy that was the worst of the worst in chemo and it took a huge toll on us, it had to too kill the virus. Our bodies need a lot of time to heal. 6 months to get the chemo out after therapy and at least a year to heal, for a lot of us longer. I refuse to believe I will not be physically back to what I was..... Stay strong! Sending healthful wishes to all!
Most regular doctors really have no clue when it comes to Hepatitis C, extrahepatic manifestations of Hepatitis C, or post treatment issues related to treatment for Hepatitis C.
Both Hepatitis C and Interferon can trigger autoimmune disorders. Joint pains are frequently symptoms of autoimmune disorders. Have you seen a good Rheumatologist at a large medical facility, such as a university medical center? A competent Rheumatologist should thoroughly examine you and test you for all autoimmune disorders as well as other rheumatological disorders. Perhaps the Rheumatologist would also refer you to other appropriate specialists.
I recently saw a Rheumatologist who examined me and tested me for multiple autoimmune disorders. I was diagnosed with Sjogren's Disease, which I actually had before Hep C treatment but did not know it. I am now on Plaquenil and am already seeing an improvement in my symptoms.
I am glad pooh you found something that is working. Your suggestion of a rheumatologist is excellant! These are deffinately disorders that need to be identified or ruled out if post symptoms persist of this nature.
I was tested for autoimmine disorders and a couple other diseases, none were positive. I believe the medications brought my symptoms on or were a precurser to what ever it is I am experiencing. I am hopeful they will go away in time.
Hope you & all continue to feel better.
Well, back from the docs. Yes, the rheumatologist did run all the tests for autoimmune disorders and nothing came up positive. We've done the thyroid and everything else they can think of. I do find it interesting that I have the elevated marker for inflammation (ANA?), but they can't figure out what is inflammed. So, a lot of it will just be called fibromyalgia, but we're also going to look further into kidney stuff. I have an odd history of kidney stones so we'll see what turns up.
Best wishes for better health to all who are still having issues.
Hang in there. :)
Ok I have a friend on a new experimental triple therapy study at a local vet hospital. He asked the dr'a there about the joint pain issues and they say it is a very common side effect. It's usually caused by a built up of uric acid that build in the joints if untreated and causes problems. They suggested a combo of allopurinol for uric acid and an anti-inflammatory. Unfortunately my doc wouldn't prescribe it for me at my last appt so my friend on the study splits his dose with me. I have tried it 2-3 times now when the pain and inflammation was so bad I could barely walk up stairs. It worked so well for me! It takes about a week but the pain is so much better when I've tried these 2 meds together. His dr's also said that dr's should be testing for this the entire time uR on treatment so that if uric acid levels elivate they can be treated immediately to avoid long term problems. As far as I know I was never tested for this while on treatment.
Some of the other symptoms I've experienced post treatment, are severe stomach pain, bloating, inflammation, a newly squired allergy to milk that causes cystic acne for me, continued hair loss, skin problems on my face, neck, shoulders, and back, and weight gain. Just to name a few.
Luckily it wasn't all for nothing though. You are all in my prayers and I hope u each achieve SVR and have the easiest time on treatment that u possibly can!
Thanks Brandi for the information. I did not experience high Uric acid, but that is a inflamation contributor for some. Your info is right, I think the triple therapy meds cause an ongoing responce of inflamation in our bodies. We should take anti-inflammatory medications and herbs as well as eat anti inflammatory foods. Staying away from sugars and other things we injest that causes inflamation. Even though the doctors do not recognize the long term Inflamation caused by the meds we took can be the culprit that destroys good cells, joint linnings, arteries, organs and other body parts: causing damage that last years: Joint aches, muscle tenderness....We can help ourselves. Here is a site that talks about that.
The site I listed was only for the physical description of inflamation not to plug the supplements. I don't take them.. It is very informational about natural herbs and how they act in our bodies to fight inflammation. As an example only. But we know that all herbs must be taken with caution as they are not regulated..
This is Dr. Weil's anti inflammatory food pyramid.
And I think we need to do yoga, exercise, gentle weights to strengthen our bodies.
Thank you for the site. I will definitely check it out. And I think uR right about the yoga and excersize . . . I am 10 months post treatment and I am able to work out a few days a week now and it is finally helping me start to rebuild muscle. It has been a long recovery road getting to this point though. To everyone who reads this thread be gentle with yourselves, recovery takes time. For me it feels like it's taking forever sometimes but I am so grateful treatment worked. Floridian you are right also about watching the diet in my experience cutting out sugar, breads, and dairy has made a huge difference in the inflammation for me and maybe the food triggers are diff for everyone. Idk. . . . But I'm so grateful for all of you on this site!!! This experience is one that no1 can really understand unless you've been through it.
Also, the Dr's at the research clinic say they are hearing really positive feedback from patients who are using Beneflex. I got some and I'll keep you posted.
No I haven't seen another Dr for the pain yet. I've been kind of resistant to going somewhere new and being told I have some other problem after everything I've been through with the Hep C and treatment. But I'm so glad u got answers and a medication that's helping. If my pain continues despite my current efforts then I will look into it. Thank you for the advice. I'm just being stubborn.
I don't think you are stubborn at all. The treatment produces such a beating to every cell in our bodies that we have to allow our bodies time to heal from the cellular level up. It takes over a year and sometimes longer to restore the damage from the treatment we used to cure hepatitis c . I found the muscle and joints get worse after stopping therapy as the accumulation of medications continue to work or exist in our bodies for 6 months post stopping therapy. That takes it's toll on our bodies. We have to nurture our bodies back to health. Some one who breaks a bone can take months to heal, we injured every cell in our body. That takes time to recover. I don't want to see anyone about these side effects for similiar reasons as you Brandi: #1 treatment side effect so sever they can cause psuedo symptoms of diseases. #2 I don't know how much recovery is possible until I give my body the time it needs to heal #3 I don't know how much time it takes to heal and I think a year or year and a half is warranted before I go looking for something else to be wrong. #4 I had so many doctor appointments and extra specialist to see for so many side effects, I am also tired of paying and extra appointments to go to and don't want to see some one else until I give my body time to heal. If I am not healing and get worse after suffecient efforts I will definately go see someoen.
The journey is different and the same for each of us. Hang in there, think positive and take good care of you everyone! Hugs to all!!!
This is such a good thread. Thank you all so very much
Since I wrote,back in September I have improved dramatically. I am wondering if my frozen shoulder was a blessing in disguise. It got me up early in the morning for physical therapy twice a week plus doing daily PT at home. . I feel so much better now that I am active again. I am out every day now doing something. The last 6 or 7 weeks have been a huge change for me.
It takes time to recover. It has been 21 months since I finished the triple. I am feeling better every day now. It did take a while but the alternative was not pretty :)
I still have an occasional brain twinge :) but I am improving, going forward and it is working.
I wish I had listened to Orphaned Hawk when I finished tx, when she said to do some yoga, gentle stretches, walking just a bit.
I finally understood, I could feel bad sitting around or I could feel bad walking.
My first walk was amazing, I used muscles I had forgotten I had.:)
I am so glad you are feeling better! You are an example of what I was saying above and our light at the other side of the tunnel! 21 months and improvements are still coming.
I wanted to be back to "Normal" with in 6 months after my therapy ended. That was an unattainable goal. I talked to someone who didn't add aerobics until a year after ending triple therapy. Then he was going very slow, only once a week at first and not doing the whole hour.
Recovery is individualized. Some experienced worse side effects then others. Some will recover sooner then others. But, There is so much hope for everyone if we give our bodies the time we need to heal.
Patience is what I have told myself when I get tired of being tired & weak. And I keep going working slowly and softly on getting my strength back.
I went to eat the other day. Crab legs. Never needed utensils, just my hands and I could whip through a few pounds in nothing flat. This time to my surprise I didn't have the strength in my hands to bend & crack the shells. Initially I was overcome with sadness. Then gave myself a break, at 10 months post triple therapy, I am recovering. Now I take a tennis ball on my walks and I pass it back and forth between my hands squeezing tightly, knowing I am strengthening my muscles again and I will soon whip those shells off that crab meat, no problem!
I wish our loved ones could understand just because we look better on the outside, it doesn't mean we are back 100% on the inside. I think that is one of the hardest parts of recovery for me.
I don't talk about it very much with my loved ones because I am busy living life, I know they don't want to hear it and I am doing the best I can, but sometimes I have to remind them.
Like when you are 10 months post triple therapy and 3 grandchildren come for 8 days all under age of 6 and you need to rest a few days when they leave, LOL!
I hope all get out and walk everyday just a little. Nature, fresh air, birds singing, muscles working helps heal our body & mind and refreshens our souls. Find a routine that works for you. Add light exercise, strength training a little at a time. Don't push hard, listen to your bodies. If you are sore, exhausted. Maybe it is too soon. Rest when you need it but do walk everyday. Drink lots of water and eat healthy.
Recovery that's my goal, one month at a time :)
Hips, Ow! My hips!
Had Pegasus and Ribavarin treatment for 4 months that didn't work. My hips hurt after that, but it healed after about a year.
Finished 11 months of triple therapy in July 2012 and was cured! Hooray!However I still have immense pain. In that time I have discovered that once I'm moving I'm ok. It's getting moving from a sedentary position that can be excruciating. I try to sit on kitchen chairs when I have to get up and down. It's easier to push off the table to get up and move.
If I stand or walk for any length of time my spine, lower back, legs and hips feel as if I'm going to collapse into myself. If I can sit for a while it's ok again.
I love walking with long strides. That is sure to punish me now. Invariably the next day my hips are throbbing.
There was a time that I would have attributable this to age, (60), but since the same thing happened right after the first treatment and I saw it happening again with the second I know that it's not my age.
My doctors at University Hospital claim that they've never heard of this and don't see how it would connect, but going on-line and seeing all of you have the very same issues and my seeing it comes on as I was further into therapy shows me the theraphy is the cause.
I keep hoping that it will stop like it did after the first treatment (after a year), but it's been nearly two years... I'm still hoping..
The key is to get moving, but not too much. Getting out of bed, going up stairs or even into the truck can make me want to cry. Once I am moving I feel good, unless it's too mch. Sigh... This is not easy.
I have started my vitamins again and Glucosamine joint juice. It may be actually helping or a placebo, but it does seem to help...
Once it's a little warmer I'll use the hot tub too - that's wonderful, floating pain free. No pressure on my hips.. However getting in the tub hurts and even getting dressed does..
I try to hide this from others. Hate to be thought of as 'that person' who is showing off her pain.. - which can make it worse, since people ask me to do little tasks for them, ie: run upstairs and grab this or that, etc.. OW!
If I say anything it's, "Oh my bones have locked again." I won't say, " Damn - This hurts like Hell and I want to Scream!!!", (like I'd like too:)
That's it. Guess I just needed to vent. Keep moving guys, and let me know if anything new comes up to help - thanks and Good luck!
Merrybe you are so right, autoimmune stuff! Our bodies have autoimmune symptoms due to the severe chemical trauma we experienced during triple therapy. It is a polymyalgia, inflammation, pain and stiffness in joints especially hips. Also a arthropathy (unspecified injury to our joints causing inflammation).
I am one year three months post treatment. I see improvements each month. My WBC & Iron levels are good.
My spine does not slip around much (weird how one vertibrae or another could slip out from baskic movement or turning over in bed), nor do my fingers joints slip in and out anymore. My body joints felt like bag of bones that can fall disconnected in a clump onto the floor too. Sometimes still but not everyday, the joints in my feet feel pain, and loose bones feel like they can disconnect but are now falling into place upon reaching the floor each morning with some short lived soreness. My hips still hurt everyday. Stretching them does wonders to ease that. I still have much discomfort, throbbing and pain after sitting or after walking to much. I do yoga/stretching: that helps so much! Walking and swimming does to. Even though pain and discomfort is here, the severity/degree is waning. I hold hope that someday it will disappear completely. As my fingers joints healed my strength returns. Hepcatlover I know exactly how you feel. I don't like to be a whiner either, suffering in silence is hard.
Keep the fight. Keep the positive attitude. Keep Moving. It takes time to heal from a cellular level as our bodies were traumatized to the cellular level. Our bodies need to re-build nuclei on up. I believe time will bring comfort and healing. I won't stop believing because the alternative is to be miserable. Eat healthy, exercise, strenght train.
I am also SVR. For me it was worth it. I Will be thinking of you both and everyone who suffers from non-acknowledged physical symptoms that are indeed real. Hugs to all!! With Healing thoughts shared & sent!
Floridian 7, Your symptoms following treatment sound like me -
Excellent health all adult life, exercised – ran, tennis, walked, light weight lifting and ate right, except for Hep C which was diagnosed in 1994. No symptoms. Never had raised liver enzymes, no fibrosis, minor inflammation. High viral load. I kept refusing treatment because of the possible severity and side effects and my sensitivity to medication.
Finally decided to do triple treatment, September 2011 – March 2012 age 57 Did treatment six months. (Before treatment my only health issue was plantar fasciitis in left foot.)
After treatment I started experience a lot of joint, bone pain, severe myalgia issues from the back of my neck to the bottom of my feet, GI issues, hair loss, panic attacks, insomnia, by two months after treatment, I had lost 13 pounds and could hardly sweep a floor. I was tested for inflammation and crp, all blood work was fine. No one would acknowledge that the treatment had done this.
My vertebrae in my back were slipping around too Floridian! I'm so glad you mentioned that, I never experienced that before. Finally diagnosed with severe osteoporosis and fibromyalgia.
After two years of working hard with stretching and doing very light work outs, etc. I am some better, but not what I was before treatment. I am HCV free, though, so that is some consolation.
I appreciate all the posts because I don't feel so alone. My gastro PA said "never had this happen with any of my patients." Sigh.
I do thank God for getting better and pray that we all continue to get better day by day.
There are many of us who are not recognized as side effects from treatment, experiencing the same. Maybe we were predisposed to these symptoms and triple therapy wore us down to a point allowing them. My test were negative for autoimmune causes. I am 1 1/2 year post tx, my hips do not hurt, my joints still slip in my hands, feet & spine but it is not an every day occurance. So I feel I am getting better. I have joined a gym. Weights, stretching, zumba... all seem to hel. I hope as I continue to strengthen my tendons, muscles and joints it will go away. I was asked to contact the Interferon & Incivic Pharmacy support RN's after a year for FU, because of the severeity of my symptoms. So I did call and let them know. Not sure if any of the information went any further, never heard.
Hang in there Colleen! You are not alone! I believe we will continue to get better! Congratulations on your SVR status!
my husband completed 6 months of the Triple therapy tx 18 months ago. He is free of the dreaded HCV as it has been undetectable , but he now has aged 50 years, in constant pain especially in his hands and arms. They swell up and he says it feels like his arms under the skin feels like open painful sores. He has tried cymbalta which did no good (although I think it helped his mood) but it tightened up the muscles around his rib cage. Then tried Lyrica which he says is doing no good. Just recently started on allopurinol as his PCP noted elevated uric acid levels. This is not new the rheumie Dr dx him with psuedo gout over a year ago. The pain does not allow him to sleep and he gets crabby. I am so happy to see we are not alone in this and look forward to seeing what works for others. As a nurse i feel helpless as to how to help him the neurologist does not know what is going on, I feel I have to go to his MD visits and request the lab work that I feel he needs, or his PCP would not have checked his Vitamin D or Uric acid level. He is now on cochicine and Allipurinol hoping this combo helps alleviate some of his pain as he does not want to take the recommended anti-inflammatory drugs for fear it will damage his kidneys. This mixture of drugs is the worst wish he could have held out a little longer for the newer drugs on the market that erradicated the HCV virus with fewer after effects. He now feels like he made a mistake and would have been better of letting the HCV take over. I am trying to keep him encouraged but it is hard. Thanks for letting me vent!
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