Hello All It has been 6 weeks from my last Riba.Started to feel a little better each week.After 3 weeks I could tell the anemia was better not as winded. Just returned from a whirlwind adventure in Italy and the only sides I still notice is not having the confidence to explore the unknown I seem to worry more about things. I think normal will be different now.
I know if I ever see normal again it will be much different. The things we use to do the little trips I dreaded I sure wish I could take them now. I'm afraid to get off routine because I might mess up the doctors work ha! I can relate! Dale
Hey ,congrats Snowav..and cheers for jumpin back into life..did yu 'do' Sicily?.....wish i was bumping around in an unexplored corner of the world right now,instead of getting ready to take my daily dose of yeeech.....
snowave -- Were you at the Olympics? Wish I could do that some day. I am glad you rebounded quickly. You kept up your excercise all thru tx and made yourself be physical. That must have helped. I agree that we change with tx and normal becomes different
Tator - yes, I do think I will be more compassionate when this is over. Never having been really sick before, this is so different -- backing out of things, staying home or indoors -- I guess I really never understood it before (being sick).
Glad to hear you are feeling better. You seem to be following me. I'm 7 weeks post-tx and I started to return from the dead after 3 weeks. It's nice to know zombism can be reversed.
P.S. I will get my CBC and liver panel results tomorrow.
yep we went to the big olympic contest in Bardoneccia then beautiful Florence for great food coffee and wine. I had a deadline for starting TX because this trip was so important for us and things kept delaying me starting TX so I started much later than I wanted too.I knew I had to rebound very quickly ,no other option. Before TX I was not really sleeping good had numbness in my left arm and pains in my legs and arm plus brain fog.A week or so after starting TX those things vanished and yes replaced by TX sides but still overall felt better.Now I feel so much better than before TX The last few weeks only been sleeping 4 to 6 hours a day but it is because I am just so busy not because I can't sleep.Life right now is like riding a charging bull It is wild ride, I should have plenty of time to rest when Im dead,woulden't have it any other way.
thanks for posting - i've got two shots to go and 3wks of the riba and so darn curious about how quickly i'll be feeling better....the doctor says every day should be a little better, but it's good to hear from someone who's lived it....so happy to hear you're feeling better and what a great way to celebrate the end of tx - the olympics in italy! wow!
It must be wonderful. I'm almost up to week 34 now. I'll do 49 weeks altogether. My doctor is going to let me do one extra week because I had to skip the shot on week 7 when I had low WBC, before I went on Neupogen.
It must be nice not to think about tx, or about how many weeks of tx to go, etc. Get on with life, but do write to the forum occasionally so we'll have you for inspiration.
In response to many of the posts above, first let me say thanks. It is nice to have some place to come and vent our frustrations and give our opinions.
The only that I had before tx was bouts of severe joint pain on and off for years. Ther were other illnesses but they came and went. I still have hypertension too. Like many people, I had several different symptoms that would appear at various points in my life, like migraines, that went away. I was genotype 1a, and I can guarantee that individual who is so into everyone doing there homework and slamming them if the person thinks they don't, I did the research completely. I haven't read a disclosure since the completion of tx, but there was not anything about neuropathy in there. I was in the group of heppers that first used combo within a few months of it being released from trials.
All the doctors told me to do was go read up on tx. They did say it could be difficult for some people, but they had never seen anyone who could not carry on a normal life including to continue to work. They also refused to address any problems I experienced during tx with "we'll see how you are after tx is over." They would have done the same thing with my anemia, but I was all over them about tha. I was on 60,000 units of Procrit a week and had a blood transfusion. I never allowed them to let me go below 22 because I had done my research and knew the danger of long-term anemia.
I am simply miffed that people go into tx without true regard of the consequences and without full disclosure from doctors. I had an MRI, liver function tests and a biopsy prior to tx, and there was nothing abnormal. Now I have degenerative spinal disease which wasn't there before tx. I was in early stage cirrohis and the doctors told me if I didn't do tx right away, then I would not qualify because my health had worsened.
I was 1a and a very active person until the day I drove home from work and found myself asleep in the car on the side of the freeway with the engine running, luckily in park, and the doors unlocked. I don't even remember leaving work or the 45 minute drive home. I was only 10 minutes from home. I quit driving and working. It wasn't worth the risk to innocent lives on the road. I am just a small cog in the circle of life. Each of us is, but if we share we grow, as long as we treat others with differing opinions with respect.
You had a bad trip so now your hope is that everyone would be devinely lead to your post to read your story and not do TX.Hey life is a gamble all the way around.Never know when you might be struck by lighting better crawl into a hole and wait to die.Not sure if people will be divinely lead or satan lead to your post.It's all a big circle that go's round and round. Jump on the merry go round of life and enjoy your ride it's the only one you are going to get.
I hope that the same intervention that leads people to read the above post, leads them to read the posts of folks that do not suffer severe, debilitating conditions post tx. In my case, after 74 wks on interferon, and 72 on riba, I have basically the same stuff I had prior to tx, nothing new, nothing incapacitating. Life is the same, except that HCV is no longer part of me, so I guess that part is different.
cuteus says.....I hope that the same intervention that leads people to read the above post, leads them to read the posts of folks that do not suffer severe, debilitating conditions post tx.
I agree with yeah, plus no one knows what might happen when we treat anything in this life.
As for your life being the same, you did seem to have the desire to take up, uh uh uh kickboxing yeah thats it kickboxing. :) :)
Just for the record -- a bunch of us heppers "won" because we beat Hep C with tx, but we actually "lost" because what we got as a result of tx left us worse off than with the Hep C. It is 2 yrs 5 mns since I completed tx, and I have been completely virus free since week 15 of tx. I was extremely ill all through tx with severe anemia among other things.
10 days after completing tx I was curled up in a wheelchair crying like a baby in excruciating pain -- I have axonal polyperipheral neuropathy which was NOT caused by my diabetes, but by tx. The doctors say the cause is "undetermined". My diabetes is more than likely caused by the Hep C since studies are showing that more than 50% of heppers have diabetes.
Something else I learned from my rheumatologist -- almost all heppers have a positive RA factor in their blood BUT THAT DOES NOT MEAN THAT YOU HAVE RA! All it says is there is some kind of auto-immune problem going on. Usually the test number is above normal, but much, much lower than a person who has RA. I wish I had known that back in the 1980's-1990's when I was stuffing prescription Motrin down my face like candy. (Remember, Hep C didn't even have a name until 1989 and a good blood supply protection test until 1992; I was diagnosed in 1997 and probably was infected back in the 1970's.)
I also have another condition that has continued to worsen steadily. It has been diagnosed as unspecified connective tissue disease. This is the family in which lupus and RA reside. My body made up its very own personal version of the disease collecting this symptom and that symptom from the different diseases in the class. I am still continuing to decline despite the fact that I am on a drug, Imuran, that is trying to keep the out of control inflammation in my body in check. Imuran's main side effect is cancer within 5+ years, but they don't know who or when someone will get it UNTIL AFTER THEY HAVE IT! The minute I reduce my dose, my sed rate goes through the roof. The standard anti-inflammatory drug, Prednisone, that most people take in high doses and I are not happy together.
Now there is something else going on in my body that is causing severe pain throughout every part of my body, and once again I have extreme fatigue like I had with the Hep C. The fatigue where you cannot stay awake even if you try to stay busy. The doctors are now barking up the tree of fibromyalgia.
Talk about brain fog and looking forward to txt being over? Well I still can't take care of my own financial and legal matter let alone try to work because of the loss of cognitive ability which was one of greatest assests in the working world. I could keep 10 balls all going at one time. Now I am lucky if I can remember my phone number.
There were never any post-tx studies done following trials because of the urgency of getting a drug on the market. The FDA just let combo fly through. According to SP they can't do a post-tx study because there is not a standard test base to use since everyone with Hep C has a different series of symptoms and the virus mutates into some similar but individually different strains. If that is the case, how did they manage to do a trial to get combo realeased to begin with?
SP knew that neuropathy was a known side effect of combo because they told me it was when I called and asked because I couldn't find it in the disclosure. They were not required to disclose it because there were not enough recorded cases. Some how more people need to come forward and tell their story like I do every few months. It's hard just getting out of bed and getting dressed let alone keeping up with the latest in medical news. I keep praying that one day somebody on one of these boards will read my comments and go, "Wait a minute! We need to investigate this!"
My life is now constant, unrelenting pain and total disability. Though life was declining with Hep C as my liver started to fail, I still had a better quality of life that I have now. I can no longer work. I can no longer drive a car because I am a legal junkie on pain meds. I sleep 12+ hours a day, and I am never rested. Doctors and monitoring tests are my life now.
Going to the grocery is a major Olympic sport. I walk at the pace of a snail and make an 80 year old grandma look like Lance Armstrong. I use a cane (if I am not havng an ego problem that day), sometimes a walker with a seat if I am going to do something like a museum (that is a real ego buster). Soon I will be in a wheelchair. I am not quite 55 years old!
I am house bound, and I can barely do the dishes let alone clean. I can't live on my own so my daughter lives with me. At least physically I can still bathe and dress myself. That will be quite a blow when I loose that last bit of dignity. I am lucky compared to many because I have the Lord in my life, and I know one day I will be completely healed and restored. I also have fairly good insurance which is another gift from God.
Recently I have developed degenerative disc problems pressing on my spinal cord in my neck and impingement on other nerves in the neck and in the lower back. None of this deterioration was apparent prior to Hep C tx. They are saying it is due to aging and has nothing to do with Hep C tx. Right, and the sky is not over my head!
I have to decided if I want to do very risky surgery to release the pressure on the spinal cord or take my chances. Right now the last EMG (electrocution torture test) says that the impingement is not damaging the spinal cord. Which is worse - operating and maybe waking up paralyzed or walking around and taking a chance on a fall or a car accident that could paralyze me? The doctors are split about 50/50 on whether to do the surgery or not. The pill guys say no and the slice and dice guys say yes. Who am I supposed to believe?
What is my reason for writing this giant message that few will read? High pressure steam release! But my dream is that everybody will be divinely lead here and read this before they do tx. They need to be very clear that tx is as dangerous, if not more so, than the Hep C. TX SHOULD BE THE LAST AND ONLY TX OPTION FOR HEP C!!!!!!!!
I listened to the doctors telling me how wonderful it would be when I was cured, and I read everything I could find about tx before doing it, but my research didn't begin to tell me of the potential risks.
BEWARE OF FAST TALKING DOCTORS AND DRUG COMPANIES!!!!!!!
I think there are more of us with bad results than they are talking about because they don't want to let the world know that we have another plague on our hands bigger than AIDS, bird flu, or any other pandemic out there.
With much sincerety,
God Bless All of You! I hope this perspective makes you stop and pray about your decision!
i've almost done as my post above states and very curious about post tx.....i jumped into this with both feet, before i even learned about med help and making decisions....i was recently widowed, and just followed the advice of my family doctor and hep doctor...as of my appt just a few days ago, my doctor still say i should just be feeling better and better.....who knows....
i am so sorry for your pain; and as you say at 55 you are still young and it must work on your dignity...thank god for your daughter and i will keep you in my thoughts and prayers for some relief of your symptoms....
it sure sounds like your qol has gone tumbling down a long dark tunnel! can you tell us you what your liver damage was prior to tx? were you able to have a neurological and rheumatological eval prior to starting the meds? I think it is important that people who might have the propensity to develop certain conditions like thyroidism, cardiovascular, neurological, etc to have a baseline consult with MRI and the like to see where you stand before tx starts. To send people into tx blindly, without alerting them of conditions that can be aggravated or triggered, is irresponsible. Also, if anemia is allowed to linger below 11, like many drs do, the damage to the organs due to the lack of adequate oxygen might be irreversible. We have to be aware, and drs should monitor us closely during tx. Neuropathy is a possibility of diabetes, HCV and interferon, that is why the dr can not agree with you that it was caused solely by interferon. No one can. Autoimmune conditions are a posibility also, with HCV and tx, diabetes itself is an autoimmune condition, so your body seemed to have been on the path to develop or exarcebate other autoimmune problems.
Your state of health is distressing, and you feel the need to assign blame and responsibility, it is always a defense mechanism of the human species, but it does not make it a fact. I do believe that tx made pre existing conditions worse in your case, and you will blame everything you get from now on, on the tx, but again, it does not make it a fact. Herniated discs are normal occurences in the general population, an association bt that condition and tx can not be made, anymore than the assoc bt it and HCV can be made. I had at least one prior to tx, my sister(same age as me) had 6, and she does not have hep c or treated with INF. I was dx with another one while on tx. I can not say it happened because of the meds, no one can.
You are in so much pain, day in and out, that is your reality, a very depressing one for you, and you have to be angry that you are forced to live this daily. I wish someone could offer you answers and relief. Have you ever been tested for HLA antigens? There seem to be an association bt the positive presence of some of them and debilitating conditions like arthritis,
read some of the associations made here: http://rheumatology.oxfordjournals.org/cgi/content/full/38/8/697
it might not help with a cure, or treatment, but it might give you some answers.
was the MRI of your spine? how long after tx did you have the MRI that disclosed your herniation? I had x rays of my back that showed nothing, only when the MRI was done did they see the small herniation. Way before tx, but possibly during HCV infection. If you had an MRI of the spine shortly before tx and another one shortly after tx that showed the herniations, that would be a big indication that something got triggered by tx. Otherwise, the connection is too vague. My sis is quite in pain from her condition, and the extra pounds she carries don't help, but it hurts to do any exercise, so the cycle continues.
I do remember reading some articles about INF and neuropathy while I was on tx, but it did not stop me from continuing with my decission to tx. I read those inserts almost everytime I took a shot, the first few months. And the articles on neurological conditions and INF, still, I wanted an HCV free life. Recently, there were some articles on HCV and nervous system involvement, including cognitive problems. So hcv can contribute to the mix, and the meds might pick up where hcv left, then, your overactive immune system (either due to genetics or HCv), continues the attack on its own tissue way after the meds and hcv are done. Someone needs to be researching autoimmune conditions fully. See what your genetics present, mention the HLA antigen testing, to see what your body predisposed you at the molecular level.
I am sorry your QOL did not improve. I guess, given that you also had diabetes, they should have paid more attention to the neuropathy issue.
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