About Methotrexate

[Rachelle_Labelle]

About Methotrexate: I was diagnosed and treated for MPA from 2007 to 2009. I was declared in remission in 2008 and weaned off the meds in 2010. Now, since February 2020 the odd faint symptoms have come and gone. Over the last week, I have been seeing a rheumatologist who ordered several test, and yes, I am on the verge of a relapse. The MPA is smoldering in the background, with signs likes "waking up in bare feet feeling I'm wearing tight boots" or the odd faint muscle calf cramp. We caught it before it could flair up, that's great. I thought the rheumatologist would prescribe what worked in the past, azathiaprine and prednisone. She definitely started the prednisone but instead of asathiaprine she prescribed Methotrexate (low doze, twice a week). I have researched this medication and it is scary, especially since I do have a bone marrow deficiency. Have any of you taken this medication? If so, did it work for you? Did you have any problems?

[Hidden]

I take 3 MTX tablets once a week. I have Rheumatoid Arthritis and Rheumatoid Vasculitis. So I also take 5mg Pred and 20mg Leflunomide. I have been on higher doses of MTX for RA, 21mg a week. I always take Folic Acid every day except for the day I take MTX. Regular blood tests to keep tabs on your liver function are paramount,

[Rachelle_Labelle in reply to Hidden]

Yes, my rheumatologist is checking my liver function. Because of the stay at home COVID19 issue, a clinician from the lab comes to my home early in the morning when it's time.

[Rachelle_Labelle in reply to Rachelle_Labelle]

Thanks for your reply.

[philtw]

I had PAN when I was 21 years and went into complete remission after 5 years. In 2013 I was diagnosed with GPA, 30 years later. I relapsed again in 2016 and struggled to get it back under control. 7 months later I am now back under control, but I think it may have attacked my lungs again. I go for annual lung (CAT) scan and bone density checks. I also had a liver ultrasound later in 2017.

I'm currently on Prednisolone, Methotrexat with no issues....., also Crestor, Folic Acid, Vit D and Calcium.

I've had rituximab x4 which helped to reduce my steroids. Symptoms for both PAN and GPA were similar, but the only difference is that PAN affected my kidneys and GPA my lungs.

[Rachelle_Labelle in reply to philtw]

My MTX was prescribed with folic acid as well. The rheumatologist recently reduced my prednisone dose. I was happy with the higher dose but she's the boss.

[Ping62]

Hello Rachelle, I've been on Methotrexate since December , started on 10mg, then up to 15mg, and tomorrow go up to 20mg. Taking in in conjunction with Prednisolone, for which the dosage has been reducing from 20mg to 5mg. I've been fine with it, no side effects at all thankfully. The doctors are happy with my blood tests. Good luck.

[Rachelle_Labelle in reply to Ping62]

Thanks for your reply and observations.

[amms43]

I also have MPA and I too suffer from the foot and lower leg neuropathies. I am pretty much in remission but I am often woken up by the pain in my toes simply from the weight of my summer weight duvet. I too have the "tight sock" symptoms especially in bed or on waking together with muscle weakness in my legs. I have seen three neurologists who each did the same tests and each told me there was nothing wrong .... Not their feet, not their legs!!!! This was a topic for discussion at the last Cambridge Support Group meeting as it seems a lot of anca-vasculitis patients suffer from these symptoms but unfortunately it had to be cancelled due to the Covid-19 lockdown.

[Rachelle_Labelle in reply to amms43]

I can related to absolutely everything you wrote here. Glad I'm not alone but fully sympathize with you. MPA is truly the illness that doesn't show and medical specialists are often fooled by it. I do feel better with the combination of MTX, and folic acid and prednisone which has been reduced to a small dose now.

Yes, we are all quarantined these days.

Thank you for your reply.

[lenwlod]

I have been on MTX for over 7 years now. I have EGPA. I started out on prednisone and MTX, weaned off of prednisone over about 18 months. I was lucky, caught it early and never got really bad and other than some nasty ear infections been ok. As far as side effects, prednisone affected me with osteoporosis and cataracts. No side effects from MTX that I can tell, other than some fatigue when I first started taking it the day and day after I took it. That is gone now, I take 20 mg weekly and I take 4 pills in the morning and 4 in the evening the day I take it. It helped with the fatigue. I get blood work done every 3 months. My liver enzymes have never spiked. Just my story with MTX, I know everyone is different.

[Rachelle_Labelle in reply to lenwlod]

Seven years seems like a long time to be on a powerful medication. I find it comforting that it has not produced any liver toxicity. Great! Thanks for your reply.

[PaddyPop]

Hi

I’m assuming the consultant knows that you have a bone marrow deficiency?

I’ve been on Mtx for over 18 mths and I’ve been fine in it. Slight nausea when I first started taking it and a bit light headed but nothing more that and those issues resolved themselves pretty quick.

My dose has been reduced twice with slightly dodgy liver function results and currently on 10 mg per week. I have been tapering Pred and am down to my last 0.5 mg daily so may be free of it by end of the month. I take folic acid only once a week but have also been on Alondronic Acid which I really want to come off (lots of precautions have to be taken if go to dentist etc).

I have found that with the decrease in Pred, the day after I take Mtx I feel like crap???? Again this passes.

The important things to remember with Mtx are monthly blood tests (although I will not be having my next test a month after the last this time) and cut right down on the alcohol consumption. Mtx and Pred are both immunosuppressants so be extremely careful with the current environment.

My Liver function tests have been slightly off again so my next test may mean another reduction?

I have read that the side effects are less with the injections but I don’t like needles.

It is a scary medicine but aren’t they all when to read the side effects.

Best wishes and stat safe

[Rachelle_Labelle in reply to PaddyPop]

Yes, my rheumatologist bone marrow deficiency. I asked her to talk to my hematologist about my history and her drug therapy. He seems okay with it. My dosage is not very high and it's combined with folic acid. I was on prednisone but she has reduced the dosage for that. Personally I like prednisone. I feel good and energetic when I take it and my MPA symptoms disappear, but doctors tell me it's bad for me in the long run.

And she checks my liver function at times.

Thank you for your input.

[jofrable]

I took Methotrexate upon the advice of a rheumatologist., At first I was taking a low daily dose. It wrecked havoc with my bowels and general abdominal pain. The side effects did not abate.

We then switched to a once a week injection So I traded a lost weekend thru Monday. I finally quit taking it.

The side effects and general effects were not worth it . A doctor I saw in Cleveland as a consultant. Felt there was not enough evidence to support it , and it is/was an off-label use.

I went back to 10 prednisone. Had weaned that down, but annoying recurrence has taken me back to that. Im willing to accept its effects on osteoporosis and osteopenia. Feel I'm no worse off than any other 76 yo white female . I did a number of Prolia shots but didn't see any worthy results for the price.

[Rachelle_Labelle in reply to jofrable]

Interesting. Initially in 2007 I was on high doses of prednisone, along with azithiaprine. I felt great, looked younger had a voracious appetite, but if I caught a cold, it took me up to six weeks to shake it. The dosage was tapered back and I was on about 10 mg for two years. Doctors weaned me off it because of its long term effect on our bones.

This time I was started off with about 10 mg and my MPA and osteoarthritis symptoms disappeared. Now the rheumatologist has me down to 2.5 mg. No fun.

Thanks for your reply.

[Vik1975]

hello sorry to hear about your relapse. it took 5 years to diagnose my vasculutis with IgA nephritis. discharged from 3 rheumatologist. finally was diagnosed oct 2019. I had been on steroids of and on for 2years. not sure what dose of methotextrate you are on but I'm on 20 mg. it has helped. the one problem that it hasnt resolved is the peripheral neuropathy. it does make me tired, but other than that I'm ok on it. wish you well

[Rachelle_Labelle in reply to Vik1975]

I find the same thing. MTX does not relieve the vasculitis symptoms. That's why the rheumatologist added prednisone which relieved all MPA symptoms. I was disappointed when she reduced the dose after a few weeks, but it's for the benefit of my bones. Thanks for your input.

[Hadley1234]

Hi I have P.M.R. G.C.A and Large vessel vastulitis...I was put on Prednisolone and Methotrexate I was sick felt dizzy my toes went numb ….ended up with pneumonia in hospital for a week ….. didn't suit me at all !!! im on Tocilizumab now ..I was injecting in my stomach once a week, but I had a rash so now I have IV every 4 weeks and have felt much better … I am weaning off the steroids now .

[Rachelle_Labelle in reply to Hadley1234]

Hi Hadley,

Thank you for input. Sorry to read you had a rough time but it sounds like you now have what works for you.