I've been taking 12.5mg of mtx for 12 weeks now and I've seen no improvements. In fact, my hands and feet have been worse over the last 3-4 weeks and I'm having a lot of trouble sleeping for more than 4hrs at a time (and if I do, I'm paying for it when I wake up). I've also noticed some nodules developing on several of my joints nearest my fingernails on both hands.
I have a follow up appt this afternoon and I was looking for some advice on meds. For anyone who's tried mtx and it didn't work, did you try other DMARD's or go on to biologics? Just wanted to have some kind of idea what others have gone through so I'll know what to say to the dr.
Mentally, it's really getting to me lately. I thought 5-6 months in I would have some kind of relief or feeling it was getting better, but it's not. I'm still having to take ibuprofen daily with the mtx to get any kind of relief :o(
sorry you've been having a tough time on MTX. Some people tolerate it well. Others don't (me included). I failed MTX and moved from that to biologics. I know every situation is different but my insurance requires basic interventions be used first before stepping up to biologics. This is pretty common because of the high cost of biologic meds. So, I failed anti-inflammatory meds and MTX and then started on a biologic. This is a pretty typical experience for many of us.
When you talk to your rheumy please do mention the aches, pains and sleeplessness and how your daily life is affected by your disease. But it is important to also mention your mental state. Depression is really common for those of us with chronic inflammatory illnesses--not just because coping with having a chronic disease is such a blow to our sense of self, but also because the inflammatory process messes with your noggin.
Let us know how your follow up goes! (and never worry about venting here, OK?).
Sorry to hear you’re still in so much pain, it’s the most frustrating illness ever because the treatments can take months to work, and it’s so painful as you’re sitting around waiting for it to work.
I’m in a similar situation to you. I’m on 25mg of metoject, which hasn’t worked at all. Since this is the highest dose of MTX I’m about to get moved onto a biologic. It has taken all year to convince the Rheumy it’s no longer effective. So I move on to Simponi at the start of October.
In the meantime I’m sitting in a lot of pain, with a lot of swelling just counting the days until I start Simponi.
I send you loads of love, and hope you get a workable treatment soon:) xxxx
I am on 8 2.5 Methotrexate one day a week. I have had good days and I have had bad. I use only Tylenol or Tramadol for pain. My doctor is putting me on Stelaria, I also take a lot of other meds for the condition.
It is frustrating rob - the non-stop waiting and trials of drugs but I would assume that your rheumy would want to increase your mtx as a next step! You’re on a low dose and that’s what happened to me. I’m now also on humira but that took 18 months to progress through various other drugs failures. The only advice I can give you is to get more frequent follow-ups so that if something just isn’t helping you’re not hanging around for 3 months at a time! I used to see my rheumy every 2 months. I am now on humira with 25mg of mtx and although I have had a good spell I am now having a bad spell (a flare I hope as have only been on humira since April). Hope you got on well today
it seems like a lose dose of methotrexate to me. Even at my lowest dose I was on 15mg/week but only really saw any real benefit after atlas 8 weeks at 20mg/week. Maybe they'll up your dose at your next appointment
Thank you all for your words of encouragement! Unfortunately, I was even more frustrated after my appt last week. I told my dr all of my symptoms and that the mtx did not seem to be helping any. She told me that my fatigue and trouble sleeping had nothing to do with the PsA, and that the nodules on my fingers were osteoarthritis related and that some of my pains might just be from getting older? Needless to say, I was very frustrated. I feel like she thinks I am giving symptoms to justify the PsA, when in fact I am trying to give her a clear picture of what's going on inside my body so that she can diagnose me correctly, even if it's not PsA.
At that point I asked, so should we be looking for something else? She responded, I don't know, cancer maybe, because we checked for lupus, RA, gout and lots of other things in the beginning. So then I asked do you really think I have PsA? She said she couldn't say 100% yes or no. She said that I have the joint pain, minor psoriasis and HLA-B27 positive that all point to it, but that I have not been responsive to any meds so far and I don't have swelling only pain, but I haven't really had any swelling from the beginning so that hasn't changed.
She initially wanted to give me a prescription of tramadol and continue with the mtx, but by the end she wanted me to stop all meds for the next 4 weeks (until my next appt) and see what happens.
I'm starting to feel like I should seek out a new dr, but I don't know if I'm just being impatient and this is all the normal progression. I did mention again the trigger finger (tendonitis) problems in both hands and she dismissed it as related to any of this, so I am going to try to get an appt with my orthopedic dr and get his opinions before I decide fully to move on. This all started around the same time and I've gone from 1 finger affected to 3 fingers, so it just seems that this is all related or linked in some way. As always, thanks for listening!
GET A SECOND OPINION Rob, your doc has as much info at her fingertips as my rheumy had at his in the diagnosis phase of my disease. I didn't get sausage fingers/toes but have nodules. I don't have lots of wear or damage on x-ray or mri as others do. And I'm seronegative so blood work doesn't give a clear picture, particularly not of inflammation. But I have ENOUGH joints with problems, active psoriasis (albeit in very limited places) and I got a relatively quick and easy diagnosis.
Fatigue IS related to autoimmune and inflammatory illnesses when they are poorly managed. Any of us on here would say that once our disease was better regulated so too was our sleep, our fatigue, our brain fog, etc.
And being off the meds isn't going to do much other than diminish any side effects. Those of us who have had to come off meds know the agony of that gap where you haven't been on them long enough to feel the benefit but you've been off them long enough to miss their benefits.
All this to say that I think you have cause to seek other advice.
xxxx