Methotrexate
Posted , 11 users are following.
My rheumatologist just told me via telephone that because I am having trouble passing the 10 mg marker of prednisone, that she suspects I may have rheumatoid arthritis and wants me to try methotrexate for 3 months. An alternative medicine is leflunomide. I am apprehensive about methotrexate but I guess I have no choice but to give it a try.
I'm interested in any feedback on this surprising diagnosis after a year and a half on prednisone. Has anyone else been similarly mis-diagnosed?
Also interested in feedback in methotrexate experiences.
Thanks
0 likes, 6 replies
jeanatDB alebeau
Posted
I was prescribed methotrexate right at the start of treatment for GCA 16 months ago and have been on 20mg per week for the entire time. My rheumatologist felt it would enable me to more quickly taper the dose of prednisone. I have also been taking 10mg of folic acid per day (except on the methotrexate day) to mitigate the load on my liver. I am not aware of any particular unpleasant side effects from the methotrexate. But I am not at all sure that it has made a difference to how quickly the pred dose has been reduced. I began pred at 60mg and am now on 7mg which seems pretty average from what I've read on the forums.
BettyE jeanatDB
Posted
I don't know if it's different with GCA ( I just had PMR ) but from 60mgs to 7 in 16 months sounds very fast.
Boone alebeau
Posted
Well, I was misdiagnosed with PMR, but not particularly "similarly." I tapered prednisone to zero after about a year but had to go back to 5 mg. Circumstances brought me to a new GP who suggested I stop taking atorvastatin for 2 weeks and see how my bloodwork was. After two weeks, somehow my cholesterol was fine, so no more atorvastatin. I had stayed on 5 mg prednisone so inflammation markers were fine. After a few days, I tried stopping the prednisone. Nothing! I had been taking atorvastatin for years, but at some point it caused a serious PMR-like flare of my hips, shoulders, thighs, and a misdiagnosis of PMR. I guess now I'm in the wrong forum LOL.
EileenH alebeau
Posted
You possibly HAVEN'T been misdiagnosed. I definitely have no signs of RA but it took me over 4 years to get reliably under 10mg and currently am stuck at 12mg - I have been down as low as 5mg in the meantime but every so often I flare and start over again. Boone's story is also not uncommon - statins cause a form of PMR. It is well known and more people are coming round to the idea.
But the median duration of pred management for PMR is 5.9 years. One in 5 can get off pred in a year, by 2 years it is a third of patients, But only half are off at 6 years. The rest of us take longer. 40% still need some pred at 10 years.
https://www.practicalpainmanagement.com/resources/news-and-research/polymyalgia-rheumatica-steroid-side-effects-new-findings
is a report about the work that found these figures - that match with my experiences on the forums over years. The link to the original is at the bottom of the article.
You aren't in the fast half of the population but needing 10mg after 18 months is perfectly acceptable - half of people are down to 5mg after 18 months. The other very relevant question is how are you reducing now you have got to 10mg? If you go about it the wrong way it will make it very difficult.
Methotrexate alongside pred is used for some people with PMR and it MAY allow some people to get to a slightly lower dose - but unless it is RA it won't replace pred. And I would want rather more evidence that it is RA than that you are one of the tortoise PMR patients rather than running with the hares! One of the very few and small studies on using mtx in PMR found it took a year to see a significant effect on the dose required. And as I understand it, it takes more than 3 months to see if it works in RA too.
alebeau EileenH
Posted
Thanks.
I will tread slowly, I am a little dubious and will wait till they do some blood work and x-rays of my joints.
The doctor seemed to think that taking the higher dose (10 to 12 mg) of prednisone over many years was a higher risk than taking the methotrexate and hopefully reducing down to the 5 range more quickly.
I have to decide the lesser of the two evils. I have strong reservations about taking methotrexate due to the potential nasty side effects.
Thanks again for your input as I will maybe run that scenario by the doc about the fast and slow PMR cases and see her reaction before I make a decision.
EileenH alebeau
Posted
I lasted 4 weeks on mtx - within days my hair was falling out in clumps. I never had any nausea, that was fine (my rheumy says take half the dose before bed, the rest the next morning) but after the second dose the fatigue started. Not just the day after the tablets but it increased until the only good day was the day the next dose was due! After 4 weeks I could barely walk into the village and back, a few hundred yards altogether. I was constantly hungry, gaining 2 lbs in 4 weeks. I bruised for the first time, All it was doing was intensifying so-called pred adverse effects - except I had never had them before!!
The doctors are terrified of pred - but I have friends who have developed either liver problems or lung problems with mtx. I've been on above 10mg pred for much of the last 10+ years - no identifiable adverse effects. I gained weight with PMR and while on Medrol - lost most of it. No sign of diabetes, no osteoporosis, the bone density hadn't changed in over 7 years at the last dexascan. I do bruise - but I am also on anticoagulant therapy. I need mine to help manage the atrial fibrillation I have due to the autoimmune part of PMR. Looking back, I suspect the mtx worsened the atrial fibrillation and I had to have a pacemaker last year but I can't be sure.