My doc wants me to consider changing meds. Currently I take methotrexate and prednisone. I have three alternatives - Humira, Enbrel and Remicade. I have looked at the information he has given me and none of them sound like fun. The side effects seem similar so I guess my biggest worry is that I don't want anything that will cause weight gain. I can't afford another ounce and prednisone hasn't helped at all. It seems contradictive to take meds to cause weight gain when weight gain doesn't help the joints at all. All advice is welcomed and appreciated.
I'm so glad I found a place where I can ask others for advice and share information. My doc is fine and I'm not knocking text book knowledge and what he has learned from his patients, but unless you experience it yourself it isn't quite the same.
hello cristene! Welcome! I know it can seem so overwhelming trying to figure out what treatment to take. I know exactly what you mean about the pred. I took it for a couple of years and I hate everything about them. Not only did I have extreme weight gain, it also made me so moody, I felt like I was down right pissed all the time.
My advice first off is to see how much our insurance will pay for the different treatments. I know they are all really expensive, so that could be a big part of your decision. I have been on enbrel and even though that gave me much improvement over just the mtx, I was not able to totally get off the pred while taking it. I have heard of so many people here that enbrel works wonders for them....I was just not one of them. I have been on Remicade for the past 3 years (as well as mtx injections). I am prednisone FREE. (yipee) I have currently had to get off both the mtx and the remicade due to increased liver enzymes, but at my last lab work they were normal, so I have resumed the mtx and should be able to resume the remicade in the next two weeks or so. I don't mind getting the infusion at all. In fact, I have met someone there that is on the same schedule as me (every 6 weeks), so her and I make all of our appointments together now and we meet for lunch before we go and then we both get our infusions together. It has actually become a social time for us...we love it. Before I met her though, I had a friend go with me, so I still made it a social time. I am on really good insurance through my work and I only pay a co-pay for my infusion. An extra bonus there is I get my infusion at my rheumy's office, so I can schedule my doctor's appointment with him on the same day (either before or after my infusion), so I only have to pay one co-pay for both.
Know that we are all here for you. There is a wealth of knowledge from everyone here...just because we all go through so much. It is great to have a doctor that gives alot of information to you about different options, but it is AWESOME to actually talk to people who have actually been on the meds. Please keep us posted on how you are doing!
Cristene;
What type of arthritis do you have? Some have found enbrel works better for pa instead of ra which is in my case, I have both. I am now having problems with the mtx, which has elevated my liver enzymes to an unacceptable level, I have to discontinue enbrel too. I pay a co-pay of for my enbrel , which is fantastic when others are paying full price. You do have options is you don't have a co-pay and must pay the full price. The drug companies do have programs to help you out. Check around there is alot of info here and check the websites Lovie put on the posting for Alabama Study, they might be able to help you out. meme
I've been dx'd with RA. I never thought to ask about the co-pay. You are right. My meds seem to fluctuate a lot in price and I've never gone this far before so I'm not sure what they will charge me. I'll check it out. thanks everyone for the advice. I don't have my next appt until June but I think I'll check with him on the weight gain and see what he would suggest as a start. I was hoping to get off the methotrexate as all as the pred. Hi there,I've had JRA now for 6 years and I'm only 17. Its kind of put a damper on swimming and other sports,but I was wondering if anyone knows a website that is for teenagers with RA? and was anyone on Vioxx or Bextra? and how are you Dealing with it? I was on both and my doctor just want me to take Aleve along with Enbrel shots and Methotrexate, its sort of helping but it could be better.Thanks for your timeGood luck.
Cris
Hey There,
Good luck with your discussion on what meds to take. I agree with the first - check your insurance and see what they will cover. I have done Remicade and MTX (loved it and had my best results from this combo and was also able to get of prednisone. But since I wanted to start a family we switched to Embrel a year ago so I could get off the MTX. I am also one of the few that can say did not get a full relief from it and had to go on Plaq. 6 months ago in combo and back on pred. Everyone is different though. I have heard so many people that swear by Embrel some will tell me Remicade did nothing for them.
Plus of Embrel over Remicade is you don't have to go in for the IV you give yourself a shot at home. Reason I picked Embrel over Hum. is only Embrel had been on the market longer so I felt more comfortable but have heard great things about Hum.
Good luck it is always a hard discussion.
Om_Gurl
Thanks wayney. The docs are going by the bloodwork. It always comes back normal. My daughters, one more so than the other, has complained about her knees hurting for at least two years now, and the docs chalk it up to growing pains. One doc even told us that it could have been the residual from a viral infection. She had strep about 6 months earlier, and he said that it could cause joint pains for several months afterward. That was two years ago. She still complains of her knees hurting. My other daughter (her twin) complains of back and neck problems. One day I was watching the two of them play cards, and for some reason I started wondering what it was like to not feel pain. I asked them if either of them have had times when they've felt no pain. Neither of them had.
Cristene,
I agree with the rest who've said that each responds differently to different meds. I was on Mtx and Enbrel before, and together they worked wonders. I only gained weight when I was taking prednisone (which I'm going to try to avoid this round, if at all possible). I didn't have side effects from either the Enbrel or the Mtx. And after the first one or two shots, I became a pro and it didn't bother me anymore.
Good luck. I hope you find something that works for you.
Cris
Cris,
When I was four I started having severe aching in my knees. Because I would cry, my Mother took me to a doctor who told her I had growing pains. Needless to say, I was never tested for anything. By the time I was in my teens, I also had problems in my shoulders. In my twenties, things got a little better but I had been pregnant twice and I think my immune system was very strong. Not long after the birth of my daugher, everything took off. I can't tell you how much of a problem it was to get anyone to listen to me. It's a very long story and involved many docs but finally someone started taking me seriously. I know have pain in almost all my joints and I am 43. I have dealt with this for a long time. I am lucky though - no joint deformaties as of yet. I believe I have had a mild case but it seems to be picking up speed. My cousin's daughter was just diagnosed with JRA and she is a young child.
Good luck with your daughters. It can be a long and hard battle. I know I was beat down and started to actually believe the docs - that it was all in my head. But I was right and they were wrong. It's too bad you can transfer your pain to them so they can get a dose of what you have to go through. Take Care!
Hi Cristene and welcome to the group
I haven't heard of anyone having weight gains with the biological drugs or Methrotrexate. Prednisone is the culprit
Prednisone is a nasty drug for me. I have had Cushings syndrome 2 times and I have a "buffalo hump" that is probably permanent.
Good luck to you on whichever drug you choose to try, I hope it brings you total relief. Barb
Barb
You aren't my mail lady are you by any chance?
Barb Hi there, I am new to the web site but I been on Enbrel and now on Remicade which I think will be changing soon (yet again). I do take MTX and alot of prednisone so I understand the weight gain issue. Either were OK with the weight gain issue, I didn't really notice any amount other then the normal steroid amount. But I would try the Enbrel first, it seemed to work a little better on me, the doctors just feel it might get a lttile better on Remicade (which it has not). Enbrel gave me more freedom and made me feel like I was in control. Hope all goes well on either one. Josie Mailady, I totally agree with Barb. 7.5mg a week isn't that much. I take 22.5mg a week and some here take more than that. I'd advise going ahead with it. It does sound scary...but they'll catch any problem before anything becomes a problem (My doctor promises ;) ) For me; it's been a life saver. I now take Humira too but that's normal. Everything seems to lose it's effect after long term use. That's the nature of this disease. It's important to use the most effective treatment early on to prevent joint damage that can not be reversed later. I wish you luck with what ever you choose. Keep coming back here...this is a great resource of information and friends!! Welcome. I just want to thank everyone here. I am learning a great deal from ya'll. I go back to the doctor May 27 and will make my decision by then about taking the rx. I did read about the about the hair loss, I am already having thinning hair, ha!! Thanks again. I will stay here and learn more from all of you. Barb, unless you are in a small Texas town, I'm not your mailady. In fact, the truth be known, I don't want to be anyone's mailady anymore. Mailady Mailady, I don't know of anyone personally, that has had hair loss at the dosages they give MTX to arthritis patients. Barb
Everyday I am learning something new and very useful, and I must say comforting. How can I thank all of you. I just read some posts about "growing pains". When I was small, I had them too. Pain I could not explain. Now I wonder if my ra and growing pains are connected. I will try the MTX, especially after the nights I have been having. I never realized just what my mother went thru, now I have a very small inkling. Mailady Christene, Ive been on Remicade for over two years. I have never had any side effects. It's keeping me functioning pretty normally. I also take Arava and Relafen. I was also asked to choose between Remicade, Humira and Embrel. Remicade and Humira are very similiar. Humira is given by injection and Remicade is by IV infusion. My original rheumatologist steered me toward Remicade because it is covered my major medical and is usually approved and doesn't cut into prescription plan benefits. And, because it's given by IV, it tends to work faster. Good luck! I've been on all sorts of things. By far my favorite has been Enbrel. I have had some weight gain, about 20 lbs, but it's a small price to pay for feeling so good. MTX worked for me for a long time and then stopped working. I think I was on it for about 8 years. The last few years I had bad headaches and nasuea. I couldn't keep any weight on. I was drastically underweight at times because the MTX would leave me nasueas for days. Then arava came on the market. It did wonders for me. No side effects except for some extra bathroom trips. But then it too stopped working after about 5 years. Now I take it along with the Enbrel and hoping to ween off it soon. I take naprosyn too when needed. I've had RA for nearly my whole life and have lots of joint damage. Lots of surgeries too. Couple of fake joints here and there. Couple of fusions. My x-rays look like somethig off the sci-fi channel! I say be aggressive as possible to stave off joint damage. Good luck.
Lovie is right in saying that you need to prevent joint damage
early. I was dx'ed when they didn't treat children as
aggressively as they do now. Because of this, I have pain that
might have been prevented.
At 2.5 mgs there will probably be less side effects than at a higher dose.
wayney
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