Moving to MTX after 9 years of prednisolone?

[SQQQ]

I would appreciate the expertise of the forum on my situation.

I was diagnosed with PMR 9 years ago and have been on prednisolone since then. With a few flares, I’ve never been able to taper to below 4mg, usually taking between 5 - 7.5mg.

The last year has been very stressful (bereavements, sepsis, house move) and I have had 3 episodes of joint pain - trochanteric bursitis x 1 and two episodes of tendonitis/ psoriatic arthropathy in my hand/ finger joints.

My rheumatologist is thinking that my PMR might have burnt out but that I now have psoriatic arthropathy and is suggesting that I start methotrexate. I would love to be able to eventually come off prednisolone after 9 years but I am concerned about the side effects of methotrexate.

Any advice or thoughts would be gratefully received.

[benhemp]

I have been on a stiff dose of methotrexate (25 mg once a week; 15 mg is more typical for rheumatoid disease, I'm told) for two months now to treat seropositive RA (but I have no RA symptoms), Sjogrens (with symptoms), and psoriatic arthritis (with symptoms, not in joints but in muscles).

MTX does come with side effects, at least for me. Mine are: 1) I had 3 mouth sores in the first month, but that seems to have gone away; 2) I am very fatigued for a day and a half starting the day of my weekly dose; 3) My appetite is suppressed on those days, but at least I have not had nauseau.

I'm told that one's body will often acclimate to the MTX side effects over time. I think mine have to some extent; I hope that my MTX side effects continue to lessen.

I haven't seen any benefit from taking MTX yet, but they say that you have to give it 2 or 3 months to know whether it is helping.

[DorsetLady PMRGCAuk volunteer]

There’s a lot of information on MTX in the FAQs-

healthunlocked.com/pmrgcauk...

.. and also related posts

[PMRpro Ambassador]

You can have both so the PMR could well still be there. However, if there are signs of PsA then MTX is more appropriate. Have you actually had episodes of psoriasis? Tendinitis and hand pain are not unusual in PMR - especially the versions that last a long time.

MTX is often used in PMR too, for a small cohort of patients it works brilliantly to get them off pred but for many others it doesn't make much difference. However, the only way to find out if YOU will have bad side effects is to try it,

Many are able to take it without any trouble at all. You are also given folic acid to be take on the other days, not MTX day and that should mitigate the adverse effects to a great extent, Some doctors are a bit reticent to hand out the folate, instructing patients to take it on only one day, others take it on all other 6 days. The injections are also supposed to reduce the nausea.

My rheumatologist splits the dose, half before bed, the other half the next morning and finds that reduces the nausea - I certainly didn't have any nausea with it but I did find it exaggerated effects that are usually blamed on pred. I was constantly hungry (has never happened with pred for me, only with methylprednisolone), I gained weight and my hair was coming out in chunks. And I was SO fatigued, I could barely function. It started as just for a day, after a month I felt OK for the day before the next dose! I stopped after a month - my rheumy was fine about it, I had tried. I think I was unusual in finding it so hard.

It may take up to 6 months to really see a benefit from MTX in inflammatory arthitis but often it can be seen sooner. There are other DMARDs but MTX has been the first line for inflammatory arthritides worldwide for well over 30 years. At least if it is intolerable you can just stop so it is definitely worth a try. Starting with a low dose and increasing slowly is also said to help.

[Rozzyt]

I have been on MXT for the past 4 weeks, 15mgs once a week and still on 5mgs of pred. I have carpal tunnel to my discomfort but I am not as painful as I was before Christmas. I have had 1 blood test but I don't know the results. They do keep u closely monitored when on MTX, so I have been OK. Still knee pain but I am told it can take upto 12 weeks to really help. All the side effects are the worse scenario that's why they keep u closely monitored to start with. Rheumatologist thinks I have inflammatory arthritis rather than pmr. Hope this gives u hope.

[alansouthworth42]

I can only say that I have been on prednisolone for 15 years for PMR and I have tried tapering a number of times, I have resigned myself to the fact that a 5mg dose is now my standard maintenance dose, hope this helps. Kind regards, Alan

[Westley]

Hi SQQQ , I WAS ON Methotrexate tablets for some years but still had flare ups. But my consultant put me on injections of methotrexate and its been fine I don't have any problems with it, I still don't like injecting myself but it's only once a week. My advice would be do whatever your consultant says they really do know best. Hope it goes well with you

[PMRCanada]

I’ve been on MTX for 2 years (injected once weekly). Started out at 25mg (usually patients start at a lower dose and then increase). Last March I lowered it to 15mg and am having a much healthier winter.

I’ve had no side effects to speak of but I was sick for four months the first winter I suspect due to my immune system being compromised from being on both pred and MTX.

I did manage to get my pred down from 9mg to 5.5mg, but after 5 weeks at the lower dose my legs (quads, hamstrings, knees) started aching even through the night. I did a pred burst and landed back at 6mg.

Next week I will be discussing the benefits of continuing MTX as although I’ve tapered a few mgs of pred, it’s taken two years. I’d be ok staying at say 5mg pred (if I get there), but that would mean being on both medications. I will say that when I stopped MTX for 3 weeks once painful symptoms (that felt like PMR, and some new ones in neck and hands) emerged so I do believe it’s doing something (I may have another inflammatory condition going on).

As others have mentioned, you really won’t know how your body responds until you try it.

[kiteekat]

Hi, I have been on Methotrexate for about 3yrs, initially alongside Predisolone for GCA, then came off Pred. I am actually not aware of any side effects from Methotrexate. I managed a 3mth holiday to Australia recently & felt I was given a new lease of life to achieve my trip of a lifetime. I am grateful to Methotrexate for enabling that. I am currently on bedrest for recurrent back problem which I feel is unrelated. I hope my story gives you hope! Defo worth a try as you can stop it, unlike Prednisolone.