Quitting methotrexate and plaquenil

[crazyolddon]

I originally posted this in the lupus section because they were having a related discussion. I'd really like to hear from RA people:

I got severe RA in 2000, treated it holistically (mainly a strict diet) until I realized I it had quit working in 2005. I went on 15mg methotrexate per week and 400mg plaquenil per day. Within 6 weeks all symptoms were gone, returning only twice when I was having non-related health issues that challenged my immune system. Never had  drug side effects except occasional nausea; my hair has thinned but I'm in my 60's so its to be expected. Oh, I've consumed all the alcohol I wanted, usually about 5 drinks per day. My rheumy didn't seem overly concerned and my quarterly blood tests show no problems. Since I haven't had any symptoms since 2007 I've wanted to cut back on the drugs but my rheumy was against it. He said I'd had a very severe case and its now controlled, so don't mess with success. He's since changed clinics and I'm letting my gp do the treatments and he knows how bullheaded I am and has been reluctantly advising me in this attempt. I've been cutting out one meth per quarter, now down to 7.5mg per week with no ill effects and no symptoms. In July I'll cut the plaquenil in half. Doubt I'll reduce the alcohol. Anybody out there tried this?

[crazyolddon]

Hi (in case you see this) - its been two years and I successfully cut my plaquenil and methotrexate in half with no return of symptoms. One week I forgot to take the meth and got a mild return of symptoms - scared the hell out of me but just resuming the same low dose squashed it. Now I'm trying to decide which is my next target.

[mollyadelaide]

I cheer you on! I'm not a huge fan of taking meds either, but I do see their vital importance at times....I really hope you are in permanent remission and you will have success with weaning the meds. Sounds like you're doing it wisely and in good pace!

[crazyolddon]

The rheumy warned there was definitely a chance we'd lose control and might never regain the total control we have now. Worst case scenario is ending up blind in the egg position begging for a lethal dose of anything. Best case is I'm in permanent remission and will never need the drugs again. Its one of those defining "are you feeling lucky?" moments. My gp carefully said that while its not his advice, just reduce it a pill per quarter, after the quarterly blood test shows no problems, no remergence of RA blood factor or other signs of the disease. I really dislike plaq, have since my Marine days, and looking forward to dropping one of the 200mg daily pills in July. I may chicken out after that, or at least stick with 7.5mg per week and 200mg plaq daily for 6-12 months. From what I can gather, the odds are really that if blood tests or symptoms indicate a return of RA I can just increase the meds and regain control, possibly at a lower than original dosage. Yes, there's the chance I'm really screwing up, but I have a long history of weighing the odds and willing. Well, maybe with a few serious injuries, RA, skin cancer, little stuff like that.    

[mollyadelaide]

Your doctor may be against it but can he/she give you an advisable weaning plan? It sounds like you're doing a good job of it yourself, but I would say go very slowly off of it. Plaquenil takes a long time to build up in your body and therefore also will take awhile to really leave your body as well. So you're not going to get a good picture in one months time what the reduction of the plaquenil has had on you. I did go off of plaq many years ago, but I don't have a severe case in the least. It did make a difference but it works for me to just take otc meds like tylenol and ibuprofen most of the time. Has your doctor told you what they suspect may happen if you go off of the meds? Obviously they think you'll flare. But I'm just wondering if they've talked with you about being concerned that the same meds you're on now just starting them back up might not necessarily get you back to where you are now. If pain and inflammation get out of control, it will take much more to lasso them to bring them back down and they will certainly do damage in the process. I understand your desire to be off the meds. I don't like taking them hence why I'm off. But do understand the risks before you go off. I'm an RN and I think sometimes doctors don't quite explain things thoroughly enough. I hope you do well with your med weaning!