RA drugs/how far to go? | Arthritis Information

HI all,

I'm 90% back to 'normal', my fingers are still stiff (having trouble typing right now!) and my feet feel weird, like the bottoms are walking on the bones! But, I don't know how much of these super meds I'm willing to take to go that 10%. Right now I'm on nearly 900cc's of Remicade every 4 weeks, with all of it's negative aspects, and 20 mgs. of mtx. I can go 8 weeks , if I want before the next Remicade treatment or 6 is a choice. I can cut my mtx in 1/2 from 20 mgs to 10!!.

This appeals to me as I hate taking too much medication. My doctor has given me the option of reducing? does anyone have any experience with this? If I am patient and wait on the reduced dose will my fingers/feet eventually work better, or do I need to carry on with what I believe is a HUGE amount of medication to be 'rid' of the stiffness?

I can't remember what my fingers were like before my big 'flare' in December after the heart operation! they have been stiff ever since, but I am a whole lot better.

this is complicated I know, but maybe one of you has experienced this before? Thanks, Lynda

I'm taking Humira instead of Remicade, but my experience is similar to yours. When I started Humira, I decided to stop MTX to see if I really needed it. I couldn't tell any difference so I'm only on Humira now. Remicade may be different though...I've heard others say it's more important to take MTX with Remicade. I get x-rays once per year and they show no continued bone erosion since the "early" years so I feel confident the Humira is sufficient to protect me from long term damage. But, like you, it's not 100% effective...in my case, I would say something like 75%...the three days before the shot (...every two weeks) are typically the worst in terms of joint pain, stiffness, and fatigue. My RD has suggested adding Arava, but I'm resisting. Instead, for a few months to see if it helps, I'm changing my diet to add foods that reduce inflammation, along with the exercise I'm already doing maybe that will be enough to "fill-in" the gaps left by Humira. My doctor's approach has always been to add meds until there's clearly a positive effect then reduce the dosage to the minimum that is effective. It requires some experimentation but since we're stuck with these meds for a lifetime, I think it's important to try to find the minimum combination that will protect you from long term damage and provides the best compromise between symptom relief and side effects.

Good luck, Alan

Hi alan, that was sorta my thinking....Lynda (I'm glad you are doing well) I'm terrible at dieting and diet. I eat what I want except the nightshade family (tomatoes, potatoes, bell peppers! oh I hate giving them all up they are low cal and so yummy). I think I eat pretty well just not perfectly. I thought I had an infection from some dumb salve my dermitologist gave me to put on an open sore, but not , so I took 4 (10mgs) of mtx today. (MY husband said take 6 (15, ), but I think I'll wait as MY EARS ARE RINGING!!

Thanks for understanding and writing about this, only people on this board could possibly understand what the heck I'm talking about!!

Lynda

Hi Lynda, I'm about 75% better because of Remicade and MXT. I never hope to be 90 or 100% because of damage. I'm shocked that I'm 75% better. I'm at 500 mg. Remicade and was on 20 mg. Mxt. and have reduced Mxt to 17.5 and hope to reduce it another 2.5 mg next month. Have to wait and see how I do after my knee replacement. My plan is to reduce Mxt as much as possible. If all is well and I don't backslide then reduce Remicade by 100mg. I want to do it slowly and with my RD's blessing. Like Alan I want to take only the minimal amount of meds. LindyLynda
im only about 75% sure of this, but i thought with MTX the important thing was to keep taking it, so if you reduced your dosage to 10mg, your liver would still be processing the drug.... and if you started getting symptoms back you would be able to go back to the high dosage as necessary.
but... I think if it was me I would get the rheumy to agree, and from experience i think i would tell you never, ever, ever, stop the methotrexate because i did this and ended up in big big trouble.

anna
When I begin taking Humira this week, I am now on MTX which is doing nothing, doctor said he would taper me off MTX. I would hope this is the route. I would hate to think that I would be taking Humira, MTX and it still would not help me. Today was a very exhausting day. Fatigue was great. Another thing I had two years ago was, of all things, atrial fibrillation, heart racing, went to hospital was there for first time in my life three days and they found it was an overactive thyroid and possibly because of this rheumatoid arthritis disease. Now I take a thyroid drug to keep me from having another atrial fibrillation attack. It appears it is not the RA that gets you in the end, it is all the things it brings on. Anyway, women should really get their thyroid checked. It is responsible for a lot of changes in the body and underactive thyroid can also bring on great fatigue and weight gain. More things to think about!

Never heard before...about not stopping MTX. I have been off it a year now without any problems. My doctor did say if the Humira needed a boost she wouldn't recommend starting MTX again but would try Arava. I assumed the reason was because of the thrush problem I had with MTX. For now, I'm happy to stick with Humira only; it's working very well.

Alan

It sounds like you have a great Dr Alan. I am in total agreement of using the minimal amount of meds that gets the best results. I wish you continued success!

Lynda

Well, I guess I don't have anything valuable to say as far as your med situation goes. I just wanted to say that I'm really glad you're feeling better. 90% is pretty darn good =)

Linda