Thanks so much for the help, much appreciated. I'm actually doing it today for the first time so I'll see how it goes. I work for doctors so I can always go to the injection if this burns too much and do the 25mg. Thanks again!
So how severe is your AS? Is the Enbrel working? Did you get sore throat after the first injection? I have sever pain everyday for 11 months straight now,low back down right leg and ankle also my throat always feels swelled and I wheez alot like my lungs are inflamed. Been on pain and inflamation meds and nothing has seemed to work. How soon could you tell a diff. with Enbrel and are you pain free now?
I took my 3rd injection yesterday and the pain and stiffness in my hands has subsided a lot. In the mornings it takes me almost 2 hours before I can stand up straight, or use my hands. My back and leg pain is still there but now I am being tested for MS and possible Myasthenia Gravis, a neuromuscular disease. All my problems started because of the RA, and as my back pain and leg pain got worse they dx me with the AS as well. Now it's hard to tell what pain is coming from what disease. The Enbrel info says it can take 2 weeks to 3 months to work. It helps 2 out of 3 people. I do not have any side effects at all from it thankfully. I am never not in pain except now my hands don't hurt, but my legs and back are soooooo painful. I will keep u posted on m progress and send u a note with my email address if u want to keep in contact. The Enbrel is my last chance, nothing else worked for me.
Oh no that is not what I want to hear and I pray that doesn't happen to me, my lower back and right leg are bad and keeps me from doing anything. Yes keep me posted on your Injections I have only done 1 so far. These diseases are crazy and why are they attacking us..............
I use the syringe. Like I said in my post, it really helps me to numb the skin with ice and let the medicine come to room temp. It doesn't seem to burn as bad. It has made the difference between existing and living. I had to go off for 6 weeks last summer when I had to have Bladder Sling surgery. I could really tell I was backsliding and couldn't wait to get back on it. I could tell a difference within days.
It's interesting that sometimes no matter what I do, it burns really bad and other times not at all. I wonder if it's what the needle is coming in contact with under the skin.
I hope Enbrel starts working for you all. For me, it's a blessing.
I'm going to start watching this thread to see how you all are doing. Please keep us posted.
I did my third shot Sunday and today I had a sharp pain in my thigh. When I looked at it it was all red and hot, about 4 inches around. The Enbrel nurse line said it can happen within the first month of injections. I'm not sure if I hit a vein this time because it bled more than the last 2 times. I am going to use my stomach this weekend, less nerve endings the nurse said. I feel a difference already, my hands are less stiff and swollen when I wake up and my back and knees are a little better. I always let it sit out for 30 min. and for whatever reason it doesnt burn at all. I'm praying this is my "wonder drug" for the RA/AS and that I dont have the MS or the MG... One disease at a time please! Thanks so much for responding and I hope u keep in touch and continue to feel better and better. Take care.
So far no headaches for me thank goodness. I did call the Enbrel nurses line because of a red, hot 4 inch kind of bruise I got on Monday from the injection on Sunday. You should give them a call and see what they say. Let me know if u need the #.
She said that within the first 4 weeks of using Enbrel it is a reaction some people have. They actually take a report as to record side effects of patients. Because it is a fairly new drug I think they are looking for all types of reactions. It sounded like she was reading from a script. I work for doctors and wasn't too worried about it and could have asked one of them. It lasted about a day and a half. The nurse said to ice it which of course I didnt! I am going to inject into my stomach Sunday instead of my legs. Not sure if this had anyting to do with it but the first 2 times I did it there was no blood and this last time it bled a lot so maybe I hit a vein and that's why it got so swollen and red. I will tell you however that last night and all day today I had a very bad flare up. You've been on it for 3 years right? Would you remember if you felt better at first and then had a flare up, I guess it's still early and I need to give it more time. Thanks so much for talking with me about this, it really helps. How are you feeling these days?
I can honestly say I haven't had a flare while being on Enbrel. However, I had to go off for 6 weeks last summer when I had bladder sling surgery. I sure could tell after 3 weeks that I was off of it. When the urologist cleared me to start taking it, my rheumy had me do 2 50mg injections for 1 month. That got me back on track.
The only real problems I've had is upper respiratory infections turning into pneumonia. That's happened 2x in 3 years. I've been really sick with upper resp. infection twice this winter. Doc said if it happened one more time this winter, I'd have to go off the shots. Thank god it didn't.
I actually feel really good now. The massages I've been getting have really helped with stiffness in my neck. I know I'm very lucky.
How long were you on it beofre you had the URI's? When I lived in Fla I was never sick but growing up in NY and now that I'm back I suffer from bronchitis alot, mostly in the winters, I've only been back in NY 10 months now and have been sick 3 times! Of course being in Internal Medicine and around sick people all day hasn't helped! Just curious how long you were on it before the URI's started. You brought up something I thought about yesterday, massage! I have such bad pain in my lower back and quads, and was wondering if a massage woud help me.
Oh boy, I'm trying to think. I was diagnosed in June 2003. My first URI was probably winter 2004 and I had pneumonia January of 2006 and 2007. I seem to get at least one URI a year with it developing into pneumonia those 2 times. This winter was twice though.
I love spa treatments but had to give up regular massages because it seems the mt's would only hurt me. My dd gave me a gift card to a place called Massage Envy near where I live. I was really hesitant to go, but I lucked out finding a MT that actually eased the stiffness in my neck and back. I was amazed. It was the best massage I've ever had. I became a member and have been 3 times. My rheumy actuall gave me a prescription for the massages so I can write them off as a medical expense. I go once a month and can't wait for the next one. It's all in finding the right MT. I can't believe how lucky I was.
I can't imagine working in Internal Medicine is good for your compromised immune system. You really need to be careful.
Funny you should bring that up! I just said to someone today that after the second shot I noticed a difference in my hands, they weren't as stiff and painful. Yesterday was my 4th shot and I feel worse again, hands are swollen and painful in the a.m. as always. Not sure if it's a normal thing to experience. I thought about calling the Enbrel nurses line again but they seem to just read from a script and really want to record the side effects, kind of made me feel like a guninea pig. The literature on it says it can take months to feel the full effects and lets face it, there is the possiblity that it won't help some of us at all.
As much as I've said the the Enbrel has been a lifesaver for me. There are days where my hands ache more than others. Not near as bad as before starting the shots. I think the worse you are when starting, the longer it takes to start feeling the effects. I think I was probably a milder case then you ladies, so I felt it sooner.
MsFergie, how are you? Have you asked your doctor about double dosing? I've been thinking about you.
I work 7 days a week so I havent had any time at all for a massage. I need to plan a day off and get one though. The pain in my back and legs is really bad the last few days. I have an appt with my rheumy on Fri. evening. Because I have the arthrits and am being tested for MS it's hard to tell what pains are comimg from what disease. I have to write Fergy back too, I think she said she had a sore throat when she started taking the Enbrel. I woke up this morning with one but have no other symptoms. What you said makes perfect sense, I have a really severe case of ReA so it probably will take longer, this drug is my last hope so I pray it works! Thanks for great words of wisdom, much appreciated.
Well today Iwent to pain managment and he said my leg pain is prolly coming from the L5 hitting a nerve as he looked at my last MRI, well I was sent there for a steroid injection in the sacriolic joint I just hope he is right and he said he doesnt agree with the AS thing, but the L5 wouldnt cause all the pain and swelling in my hands as I did to much last night and this AM i was so bad and my hands were swollen all day, if I dont have the AS thing then taking this Enbrel is just a hazard to me ewww so confused also how were you all diagnosed? I was Diagnosed with inflamation in the SAC Joint and inflamation on the bloodtest also showed RA in right hip and spine, not sure what else. Also Sue I called the DOCS Office and asked them about hurting worse before getting better and she never heard of that but I dunno, I was told today Lyrica is the best thing to take for the pain.
Forgive me but I dont remember if you told me you had the HLA B27 gene or not. I have it and had a UTI and that is what triggered the ReA. Severe swelling of both feet, both knees, both hands and severe back pain. I was in a wheelchair for 4 months. This all happened 4 years ago. The last MRI's were done 1 and 2 months ago. Shows stenosis of C6-C7 both sides and C4-C5 same thing. L4-L5 disk bulge, annular tear. L5-S1 severe disc space narrowing, heavy calcification of right illolumbar ligament. Sac joints show sclerosis and bony ankylosis. Also have straightening of the lordoctic curve. My back is a MESS!!!! So all that and being tested for MS, go figure, I always knew I was an ove achiever but this is ridiculous! I'll let you know what the rheumy says about the worse then better thing. So sorry you hurt so much.
Hello, he has not tested me for the gene but I am going to request it, my back has alot going on also and I might of had a UTI as I have had them in the past, I know I had scianitis previous to this so that may be my issue also. So how is the Enbrel? Any remarkable results yet? I am in worse pain this past week and the SI Injection my doc ordered I am getting Tuesday, I still cannot believe what that pain doc did, when you are sent to get something done you dont just change it around that makes me mad as that L% nerve block hasnt done nothing for me yet he said something about bulging disk there and the nerve and he thinks thats my problem grrrrrr i dont think that would cause all this.
Hi there, yesterday I felt horrible and today when I got home from work I took the pup down to the beach and we walked fast for an hour. I have had a sore throat the last two mornings that comes and goes. I have a 5:30 appt Friday with the rheumy. I also need to touch base with the neuro to find out is take on all of this. Right now I feel the most "normal" I have felt in 4 years so maybe the Enbrel is kicking in. We'll see what the morning brings, that is the worse most painful part of my day. I dont get these doctors at all, keep me posted ok
Well I hope it is working for you and i hope it kicks in for me, i am tempted to do my injection today a day early, another lady on here just told me about some medicine she got that is helping her pain and she has been through alot so if my pain dont go away soon i think i am gonna ask for it, in the mean time i am waiting for Tuesday for a SI injection. Keep me updated and God Bless You...........
Hello, it is called Meloxicam, it is a NSAID. So how long have you been suffering before being put on Enbrel? Also have you had allergies that you didnt use to have? It seems like I am having allergic reactions to my meds or something and I have to keep taking Benadryl, my throat really bugs me it just feels swollen all the time and my tounge. Tina
4 years, NSAID's dont help me at all, have tried every drug they make. Steroids did help but I hated the way they made me feel and look, plus I couldn't stay on them long term. Methotrexate made me very depressed. So I'm really praying the Enbrel works for me. I have a appt with the rheumy tomorrow evening. I have had a sore throat for the last 3 days though, no other symptoms like it's a cold or something just hurts when I swallow. I have no allergies at all. I will see what the doc has to say about it and let you know. I walked for an hour last night with the pup and felt great, today I felt like I was 90..... go figure..
How long were you on the steroids and why couldnt you be on them long term? I been on them a yr next month and they are actually for my adrenal gland, I have had more inflamation and pain since I been on them and sometimes I wonder if that is the reason for all this and I feel like I am allergic to them and I keep trying to tell the Doc, It just feels like my throat is swelling and tounge and throat wanting to close, doesnt that sound like a allergic reaction? It does to me.
Yes it does sound like an allergic reaction. Prednisone makes your bones brittle, if I was 70 or older it wouldnt matter, but being 50 I could not be on them long term. I also gained weight from them which really made me feel horrible, I was a runner and triathlete before all this happened. Based on what you told me I would tell your doctor you no longer want to be on them, it sounds like they are not helping you at all anyway. When I was first dx I did take an anti inflammatory called Ketoprophen aka Oruvail, that reduced the swelling and pain very well for me. I took 200 mg a day. Can't hurt and it may just help you. If u want to be off a medication tell your doc, you know your body better than anyone. When I told my first rheumy that the methotrexate made me depressed and even suicidal ( sooooo not me, always happy) he made me feel like I was crazy. Dropped him and a doc at the Mayo Clinic and now my neuro doc said it is certainly a side effect for some people. Dont let him push you around, remember he works for you. Sorry if this was too long. Stay in touch with me, I work for some really great doctors and may be able to help you with some answers etc...
Well I am on the Cortef Steroid because my adrenal glands went insuff. and they said I have to take them the rest of my life to replace the steroid hormone, I was very ill in the beginning and running a very low BP that went on for 6 months before the adrenal gland was diagnosed, 7 trips to the ER for it, after that I was put on them steroids and 2 weeks later the leg pain came on and I have just blowed up ever since and not to mention the 40 lbs I have gained. Tomorrow I think I am gonna call them again and request a allergy shot and also I wonder if it is Lupus that I really have as I had a episode 14 yrs ago that came and went in 2 weeks and the ER back then thought it was Lupus but I never followed up on it because I had no insur., I may have been in remission all these yrs and also Lupus causes reactions to meds and high antibodies which I have had in the past, my recors showed antibodies in the 2 thousands in 2006/2007 not sure where they are now. Also are you suppose to be on Enbrel if you have Lupus?
NO!!! I researched the heck out of it before I agreed to take it. Some studies showed that some patients developed symptoms of Lupus from it. It can also bring on MS which is something I am also being tested for. My neuro felt the risk out weighed the benefits, since I have such severe ReA. It is used to treat RA, psoriatic arthritis, juvenile RA and Ankoylosing Spondylitis. So if you think you have Lupus I would not take it. Do you have any redness in your face or rashes anywhere on your body?
No rashes or redness but I have had that in the past, I know I am uneasy about being on it but I feel like it is my last resort as there are no nsaids working for me, I think I am going to request a allergy shot to see if I am having a reaction to the steroids, I have had every symptom of lupus though but this stuff is so confusing everything sounds alike.
Friday was my third injection and I been feeling strange feelings down my spine like inflamation is trying to release or something, have any of you expierenced that? Been using some ice on it some also to help, also my injection sights are red. I still feel crushed like my head and neck I cant hardley explain that but my hands feel better.
So far I cannot tell a difference but I can tell you I have been very tired and drained every since I started them, also I stopped taking my steroid about a week and half ago to so maybe that is why I feel that way so this morning I decided to take a steroid and maybe I will try that every other day also you know reading about AS I really dont think that is my case, I beleive my problem is all my back so I am going back to the orthapedic next week.
Sorry I haven't been around, starting a new job soon and have been really stressed. I have been on the Enbrel 8 weeks now and it has not helped one bit. They want me to try the Remicade now which I did not realize was the infusion med, thought it was the same as the Humira which is injectable like the Enbrel. I have had it with this doctor anyway and need to call someone new next week. Now my fingers are turning white and numb which sounds like Raynaud's to me, yet another auto immune disease! How is the pain factor for the two of you lately? Thanks so much for thinking of me.
My pain is the same and I do beleive it is my spine issues, sorry to hear about your case. I have been very tired since Enbrel so this week I am not doing it because I just don't think thats what I need.
Nancy is right on the $ when it comes to ortho advice. AS as I'm sure you already know is an auto immune disease so a rheumatologist is exactly who you should be seeing for that. Now it is entirely possible that you have something else going on with your back other than the AS. Nancy I have checked out the AS forum, just need to spend more time on it. I did join the ASA and have received some great literature from them, thanks for the info you gave me a few weeks ago about it. It is a beautiful day here on the Island and the pup and I just came back from a nice long walk on the beach and now it's "couch" time! I did get another shipment of the Enbrel yesterday and will continue to take it until I can get the Humira. Fergy it just so happens my new job is managing an orthopedic surgeons office, I start June 2 so keep me posted on your situation ok, I'll see what I can find out for you from my doc. When u are up to it tell me what exactly is going on with your back and why u think it is not related to the AS. Nancy, so happy for you that the Enbrel works. It' s always great to hear from you. Be well and enjoy the day.
I have DDD,Facet Joint Disease an minimal Spinal stenosis plus some degeneration on the SI Joint All that is in the Lower back, my C Spine MRI showed Herniated Disc from L3 to L5 and said something about minimal nerve inpigment, I have a apt next week with the Lumbar surgeon and the week after that with the neural surgeon so maybe they can help me out here. My biggest issues are pain that radiates down the right leg chronic for a year now and my neck always feels swollen but strange the front also does plus my hands go numb when the are a certain way and my legs also if I sit close to the floor a certain way may I have both, and the pain doc told me last week I have fibromyalgia and nothing is wrong with my back and said he looked at my MRI films well I dont think a radioligist would put all that on there for no reason and he said he doesnt think I have AS either so I am just LOST. I have been really tired since I started that enbrel, have you?
Well went back to Ortho today, said my bonescan shows a fracture on the joint my right hip goes in so he sent me down for a MRI of both hips and now i go back next wed., he said this is rare for the joint to be fractured not the hip so i dunno what they will do.
MIRACLE!!!! Had my 9th shot Sunday and started taking the ketoprofen again with it. I have had 5 straight days of no pain, no stiffness for the first time in 4 years! I am sooooo happy! The doc wanted to switch me to Remicade but I am sticking with the Enbrel. Fergy, so sorry you are still going through so much, Nancy, how is life treating you? Thanks so much for thinking of us. I start my dream job next week and can't wait. Taking my bike to the shop today to get it tuned up, going to try and start riding again.
Well sounds like I am gonna keep trying it, what is ketoprofen? I have done 7 shots so maybe it does tak time. My Bone Scan does show RA in my spine so this enbrel would still be good for that even if I don't have the AS, I am still confused as in how my Doc diagnosed me with that, my bloodtest show no inflamation but there is inflamation in the bonescan also in the Sac Joints, he is comparing me to another patient of his so maybe he is doing the right thing, i am just scared it might be Lupus but he said noooooo I dont look like a Lupus patient but you don't have to have visible signs but however if it was lupus wouldn't the bloodtest show inflamation? Grrrrrr Fergy is going crazy! KIP Ladies I need yer help here.
I have been suffering from RA for 10 years that i know of for sure. Tried several drugs, meth., plaquenil, etc.. A year ago i went on the Enbrel, and also still taking the arava, i also have found i am feeling like a new person. I went from needing a lift chair or help getting up and down too being able to do almost anything. But with the Enbrel it took a while for it to start working. Now i can tell when it is time for the next injection. I am not pain free, but i am far better then i was. I also have the throat issue. I choke on alot of things, because my throat doesn't allow much to go down. Never really thought it could be a side affect from the enbrel, but willing to live with that over the pain. With my RA i also have got nodules from head to toe, have any of you got the same thing? I have 23 in my lungs alone, having surgery to remove a few off my arm on the 19th of sept. One more thing i would like to tell you about the enbrel, I have only had one severe flareup where couldn't do anything, not even walk dress etc.. steroids and morphine cleared that up fast. I have enjoyed reading all your stories so keep in touch and i wish you all well. Sheryl
Well, this is a first for me. I'm having a flare. I woke up one morning and couldnt get my wedding ring on. It happened over night. My hands have been bothering me quite a bit along with my lower back.
So, doc has upped the methotrexate, so we'll see how I do in the coming weeks.
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