20 months into my PMR GCA journey now. I saw my rheumy yesterday and she wants me to get lower on the Pred. She suggested Methotrexate before, but I pushed back. I was on Actemra before but it was causing worse headaches so I had to stop it.
This past week, I was on 10.5mg but had a flare so had to go back up to 15mg. The flare head pain was so bad I was fantasizing about being in the hospital on a morphine drip. It was the worst pain I've had so far and I have had A LOT. I've read about the risks and side effects of Methotrexate and really don't want any of those to happen but if they do, they do. I hope it works for me and that I am able to reduce the Pred. My doctor thinks Metho isn't as bad for me as long term Pred. Any thoughts?
Before my flare, I had been feeling pretty hopeful. Now I'm back down, feeling pretty sad about losing my health again. I know you all understand and I'm so grateful for you.
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potterylady
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My Rheumatologist is a great believer in Methotrexate. She said to me” ask any Rheumatologist and they will tell you that they would much rather take Methotrexate than Pred. Like you I am afraid of the side effects and believe that its efficacy in our conditions is a bit hit and miss. I was tempted to try it at one point and reassured by the fact that I could just stop it without tapering if it didn’t suit me. I didn’t in the end and am now at a low dose of Pred.so there is no real reason to take it. I will always wonder whether it would have eased my journey which has now been 8 years. It is a dilemma I think.
Thank you Jane. Hum..... I took an injection yesterday and am still questioning if I should keep doing it. I'm glad to hear that I can stop it if it doesn't help. How low have you managed to get of Pred? I know it's been a long journey for you. I appreciate your good attitude and honesty.
Wow, this disease doesn't give up. It seems like 5 or 3mg would be a lot less harmful than 10mg and up. But I'm sure you were on higher doses for a long time too. I wish you great health. Life is so different like this.
It depends - for some people there are no bad side effects and for a cohort of PMR patients it works brilliantly. For others it doesn't help and for some they find it unpleasant - I did, the fatigue was horrendous. But you can stop it immediately if you can't tolerate it and if it doesn't make you unwell - it doesn't matter does it? You do have to try it to find out if you are one of the lucky ones. And you are always well monitored.
Have never tried it myself but, as others on the forum have said, it can be worth a try as it is helpful for some, and like SheffieldJane says, if it doesn't work you don't have the bother of tapering off, you can just stop. But your description of the extreme head pain concerns me. Have your symptoms been pretty well taken care of at any level of pred, only to recur as you tapered?
Yes, my head pain will go away with Prednisone. I mentioned in my post before this one that I had had dental work done which might have set it off. I took 5mg additional and it improved slowly over 3 days. Thank you for responding
Good that the head pains are under control again but even though Pred seems to sorted them I think I might/would be tempted to see the doc and investigate them further. In the end I guess the Methotrexate do I or don't I comes down to you and as said, at least you can stop it if it's not joint right. I imagine a number of related posts have also come up so probably worth a read of those as well.
It was recommended to me after I’d flared twice at around 5mg pred (no symptoms, just very high blood markers).
I didn’t notice any side effects. I got to zero pred with no other issues about a year later, and came off MTX about a year after that. Whether it was a factor in my journey I’ll never know but something worked for me.
I’ve been on Methotrexate 15mg since November after being stuck at 5mg for most of 2023 and it does seem to be helping as I am now down to 3.5 mg ( tapering 0.5 mg per month after the initial 12 weeks on Methotrexate).
It takes a number of weeks to kick in so you’re unlikely to be able to make a judgement on whether it’s working for a while.
I had nausea the first month but then it settled and do get tired on day 2/3 after taking it but otherwise no other side effects - taking the folate acid is important. They regularly test your blood for liver/ kidney function mainly and so far so good.
Great information Rynn, thank you. I'm doing the injection to avoid the nausea but it wiped me out for 2/3 days afterwards too. Thanks for your feedback!
I have tried it tablet form and injection form, the latter put me in bed for 8 days did not eat, feeling sick and lost a stone in weight. No follow up from reumy now managed to reduce pred to 12.5 and seems to be going well. I hope it works for you.
Why do some rheumatologists love methotrexate and others leflunomide? I know both are DMARDS but from what I’ve read here they suggest one or other. Never a choice or even suggest an option. The only thing rheumatologists seem to have in common is their hatred of prednisolone.
Personal experience maybe? Trouble is, most of their experience comes from RA. And PMR isn't RA - most of the time at least! I know Sarah Mackie has used MTX and had some dramatic results. My impression is that MTX has less nasty adverse effects than leflunomide but it is difficult to assess.
Hi potterylady, my personal experience with methotrexate has been quite positive. I was diagnosed in July 2023, and ended up on 60mg prednisone while being worked up for temporal arteritis (negative). I was successfully tapering until 13mg prednisone, and the usual pain returned in full force. I tried again, with the same result. I was also suffering from glaucoma and hypertension caused by prednisone. I reluctantly started on oral methotrexate in late January (7.5mg/week with folic acid 1mg daily) and had a bit of “blah” feeling for a day, but that has been all of my side effects. I increased methotrexate to 12.5mg/ week after 3 weeks, and also started decreasing my prednisone to 12.5mg - successfully! I’m now on 10mg prednisone without any issues and my moon face is starting to dissipate. I wish I had started methotrexate earlier!
Wow! I love hearing this!! I'm so glad you're doing well and that damn moon face too! I wish mine would go away. I've got turkey gobbler neck and huge eye bags too.
Having taken prednisolone for three years, and getting down to 5mg with some flares, my rheumatologist (Leeds based) suggested trying MTX. He said that it was less harmful to the body than prednisolone, suggesting it was like the effect of 10 units of alcohol per week on the body as opposed to 60 for the prednisolone. I was taught to inject it weekly. I started on January 9th of this year and was told to reduce the prednisolone to 4mg at the same time. I have had no ill effects - just fatigue which might be due to adrenal insufficiency, or having a lot on, or old age - it's difficult to tell! My rheumatologist asked for an early morning cortisol test three weeks ago and the result was 88, so, technically, adrenal insufficiency. But to check this, I had a synacthen test this morning and am awaiting the results. Anyway, I am hoping that the MTX will work for me, and I hope it will work for you, pottery lady, if you decide to try it.
I have no advice or experience for you but am interested and understand your dilemma nonetheless. Timely post, as I have my rheumy appt next Monday and I know he will suggest Methotrexate again. I cannot get below 17.5 mg right now..tried 15 mg last week and the pains came back, but believe it or not 17.5 is good for me..was stuck on 30 and 25 so..
I suppose I need to think about this over the weekend. Last time (4 months ago) he offered it and I pushed back like you said no, just don't want more drugs and possible side effects and no guarantee it'll work, either. That said, after reading a few success stories on here, maybe I should try it.
Oh the joys of PMR The roller coaster of it all is rough.
Hi potterylady, In case this helps ....... I've been taking weekly 10mg MTX tablet now for 2 years and have only had good results from it (so far anyway). The immediate impact of reduced fatigue and reduced stiffness was remarkable. I had no nausea.
Against rheumos advice though, I did NOT taper my pred intake nearly as quickly as they wanted, taking 2 years to taper rather than 8 months. Instead I took the advice of this forum as I've had a number of illnesses during those 2 years (gastritis, diverticulitis, silent reflux, bad cold, (none of it related to the MTX) and some personal stressful times. The wise advice from the knowledgeable folk of this forum is, as you probably know, to NOT reduce during these times, and in fact increase the dosage temporarily.
Since being on very low and now zero dose of Pred, other aches and pains have emerged with osteoarthritis, bursitis etc, etc etc so I'm now having to deal with those, but the MTX certainly changed my life for the better for a long while, until the osteo etc got bad. But that's another story Wishing you all the best.
I taper way slower than the doctor says to as well. They don't know how it is to deal with this and how scary it is. What was your dose of Pred when you started MTX?
I have bursitis too and a shoulder tear. But nothing is as painful as PMR and GCA. Wishing you the best with everything, including the stressors you had to deal with. I hope you have more peace now.
Thanks potterylady. Yes fewer stresses now thanks. Re the pred dose, I was on only on 7mg of pred when MTX was first prescribed in March 2022. Finally tapered to zero in March 2024, so we shall see what happens from here!
Good luck with your decision. There are so many factors to consider when managing multiple life changing ailments and we're all different. If you decide to go ahead, at least you can drop MTX quickly if it doesnt suit. Kind regards.
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The roller coaster of it all is rough.
Any one on Methotrexate?
Methotrexate concern
Methotrexate
Methotrexate not Pred
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