Hello everyone! I am 39 year old female diagnosed with Juvenile RA at age 3. I have been on every med known to man. The RA got completely out of control after the birth of my 3rd son 19 months ago. Pain is unbearable, I have been suffering daily. I am on Narcotic pain meds, which I've never needed in my life until now. My life is crazy busy with 3 little ones and a full time job. I began Remicade 2 weeks ago and have my next infusion tomorrow morning. I'd like to hear from people who have had experience with this drug and if successful, how long did it take to notice a difference? I've tried Enbrel, Humira with no success. Currently on: Daypro, Methotrexate, Oxy Contin, Percoset PRN and still hurting!! Any replies would be greatly appreciated!
Thanks!!!
Chris H. :)
I started Remicade in March after 3 months of no relief with Enbrel. After the first infusion I had 3 days where I really noticed a difference, but I haven't had the same experience again. My dose has been upped and I go in every 6 weeks. I'm also on 20mg MTX, 1000 Naproxin, 10mg Prednisone and Vicodin PRN. I'm using OTC Tylenol part of the day which is a great improvement over the 1st, 3 months of 2006, but I think the change is from asking for the Prednisone 4 weeks ago and not the Remicade.I loved the Remicade. I got really good results with it and felt better with each infusion. I could feel it wearing off during that 6 week period. But my insurance changed and I couldn't get any longer. I'm on Enbrel now and don't feel like it is working for me at all. I wish I could go back to the Remicade.
Hopefully, it will work for you. After my first infusion, I didn't feel much different, but my friends said that my color was so much better. I think it was about my third before I really started feeling the difference. It was like a new lease on life for me. I had a lot more energy and was not having the joint detoriation like I seem to be having with Enbrel.
If you are not getting enough rest, highly likely with 3 little ones, your pain isn't going to go down. You need to get some help with that if you can. Consistent sleep is extremely important. If I'm not sleeping good, my pain levels rise quickly. It doesn't matter what I take.
You didn't list prednisone. Are you on that? I know that's the dreaded drug, but it also helps with the pain.
Also have you tried a pain specialist and the time release pain patches? Physical therapy and swimming can also help reduce the pain. Again, hard to do with kids. But maybe you can make it a family exercise project.
Don't know what all you have tried, especially since you are probably more an expert than most of us since you've had it almost all your life. Is your pain from joint damage or other things?
Did you notice any difference with Enbrel or Humira? Hi Chris; I'm going to be receiving my 3rd infusion in 11 days. I had 3 days where I felt pretty decent - good energy, little pain, and a decrease in swelling and inflammation. Unfortunately that ended yesterday. I've had a flare of PA and have really been hit hard. I was on Enbrel prior and it seemed to control the PA but not the RA. My RD wanted to me to try Remic. because of the erosion and damage to some of my joints. Now it seems the Remicade may help the RA but not the PA....can't win. Only time will tell if it helps either one of us. Have you had any reactions to the infusions? So far I've not had any. A little bit of a drop in my BP last infusion but not enough to need care, just observation.Hi everyone!! THanks for all the replies!! I was on 10mg Prednisone but went off it when I started the Remicade. I did try pain patches. The 50 mg knocked me out( couldn't lift my head off the pillow the morning after I took it) so I went down to the 25's with no relief. That is why I switched to Oxy Contin. I had my 2nd infusion yesterday am and today I feel terrible. My left ankle is awful, (this is also the ankle I has fused when I was 30) and the one that gives me the most pain. My rheumy says most of my pain is structural from joint damage but I do have inflammation in my hands...however, they are the least of my problems. My ankles are so bad and painful and it's hard sitting when you have a 6 yr old, 3 1/2 and 1 1/2 year old that need you. I do sleep great , never have woken up from the pain, but waking up in the mornings is brutual. My rheumy says he dosen't think the Remicade will help because it's the same family as Humira & Enbrel which did nothing for me. I am the one that actually suggested Remicade. It's funny because this past week, Monday through Wednesday I started to feel good....Like you, Linda B. had 3 good days, then Thursday was awful. I know, can't win. So far, no reactions at all from it. My next one is in a month. After that if no relief, my rheumy said we'll go on to something else. It's funny because I've always had this joint damage, but never had this pain before the kids were born. Pregnancy was the best ever...no pain!!Too bad I couldn't stay pregnant!!! This disease is truly the worst...I can't believe the levels of pain I am in...I really hope the Remicade does the trick. Thanks again for all replies. Keep 'em coming!!!I also got the pregnancy relief, I wish they could come up with a pill that could replicate whatever it was that knocks out the RA for 9 months. I started on MTX right after the birth of our 2nd DD and then had an unplanned pregnancy a year later, I knew I was PG because the first symptom was the RA went away, but I lost the baby after 3 months, probably because I'd been on MTX for it's 1st month. I really think the prednisone is giving me the relief from this flare, I can see the veins in my hands again and my knees are about half their usual size, friends have actually commented on how much better my hands look, so it must be noticeable.I know..What is it in the hormones that protects us from symptoms? Crazy stuff....So sorry you lost your baby...I also think the Metho had something to do with it. I was on Metho for so long and when I wanted a baby I went off it but didn't get preg so we satrted fertility . I did 3 Artificial Insem's and gave up. Then went on vacation and bang..pregnant on my own...the next two pregnancies came in half the time for my 2nd and only a month for my third. It's like once my body knew what to do, there was no stopping it but i had tubes tied after the 3rd. I could never have anymore given how I've been after this 3rd baby. They are what keeps me going, though!!
I have my third infusion on Tuesday. I have been hoping & praying it does the trick. Had a terrible week and had to resort to the good ol' Prednisone again...Now decreasing to 20 and then I'll remain on 10 for a while like I was before. But even on Pred, I still had pain.Unbelievable. Rheumy upped my Oxy Conyin dose to 40 mg 2x daily ( controlled releasae) then I have the 5mg's for inbetween as a PRN which are immediate release. I cannot believe the level of pain meds I'm on and still I feel like this. Of course, I don't sit as much as I should. My husband is awesome, picking up the slack all the days since I've been not feeling good, but even so, I have 3 active boys who just want to be with me and do stuff with me. I refuse to be a mom who just complains and cries and sits all the time. I don't want them growing up remembering me like that all the time. So I sit here putting all my hope into this Remicade...don't know what I will do if it doesn't work. I'll keep my fingers crossed. Thanks for all the replies!!Chris H. :)
Hi Chris.
You are one strong lady! Stubbornness is a good thing (it keeps us fighting) but maybe you really should try to rest/sit down more. Resting definitely has an effect on my pain levels.
It must be almost impossible to rest with 3 kids, but maybe think of creative ways to reduce time spent on your feet. Eg, sit on a bar-stool when in the kitchen, to rest your legs. I'm 40 and very active when not in a flare, but I've learnt the hard way that rest is crucial. I've given up pretending I could behave as normal and have instead adopted the routines of a very elderly lady! (Albeit one who rides a stationary bike every 2nd day... Elderly ladies probably stay up later than me too! )
All the best,
Hi...Well I had my 3rd Remicade last week and I'm happy to repot it's working!!! Amen for that...I woke up the next day and could tell. I still have pain but it's bearable and I can do my normal routine pretty much. I've felt like myself finally....Thanks for all the responses...I'll keep you updated. Take Care.....~~~~~~~~~
Chris H.:)
Oh thank goodness! I am glad you are finally getting some relief. Don't over do now. Just enjoy. Give those kids a big hug and just sit there and be happy.
Don't use your new, precious energy on cleaning the house. Have a love session with your family. It will make the medicine work much better.
Thanks Deanna. I am still doing good but I can feel it wearing off.I'm due for my next infusion in 2 weeks. I have been on strike with the house...And happy to report it's wonderful!!! There are dishes in the sink, crumbs all over the rug...but I don't really care haha!! Thanks for all the encouragement. I feel like I got my old self back. Also we just put in a new patio and we are getting a hot tub soon for me. I can't wait!! It will definately relieve much of the achiness. I'll keep you posted!!! Thanks again!!
Chris H. :)