Is there anyone on this forum that has had a good result from taking Methotrexate? I am currently taking 8 mg of Pred - second time down to this dose. Last time was in the summer and I was on my knees with pain and exhaustion. Went back up to 10mg. Saw Rheumatologist who did blood tests for adrenal insufficiency which came back with very low adrenal levels. Saw an endocrinologist who siad nothing can be done about adrenals til I come off Pred - and then is adrenals not working will have to go back onto Pred!!!
Rheumatologist suggested I did a very slow reduction back to 8mgs to see what happened and I feel the same as I did last summer. His alternative at this stage is to put me on Methotrexate. I have read some of the horror stories on here of people taking M but has anyone had a successful time with M and reducing their Pred? It is a big decision to make but I am having real problems with Pred - not just in reducing them but also super sensitivity to side effects of them.
I don't know of anyone with PMR being able to get off pred entirely using mtx. I do know several who have been able to get to a LOWER dose of pred though in some cases it was only a couple of mg. For a lot, though, they are started on it, have no mtx problems but can't say whether it got them to a lower dose or not. You have to try to find out.
What side effects are you struggling with? Though I do have to say that I suffered several supposedly pred adverse effects as a result of unmanaged PMR - no pred even on the horizon! And when I tried mtx, rather than making the pred more effective it seemed to introduce adverse effects usually blamed on pred (constant hunger and weight gain, irritability, joint pain, fatigue and others) and which I didn't have with just prednisone. It is acknowledged that mtx can also intensify pred adverse effects in some people.
Dr Mackie is thinking about Leflunomide for me. We discussed Methotrexate but she dismissed it as not for me. Says it can cause water infections. She indicated Leflunomide can also cause infections but wouldn’t give it yet with all that’s going on around us! Plus I have another UTI that isn’t responding to antis.
have a scrip for leflunomide. I tried methotrexate and I think it increased the fatigue overall, difficult to describe, some things improved others things worsened..and that's just that fatigue bit! It did make my muscles in my legs strangely work as I had heard they should..haven't done that for decades.. and it was all of a sudden a breeze to walk uphill? OTOH my brain and overall fight to stay alert and awake was severely worsened? Haven't filled my scrip as yet.. I have had it for a month now
I took MTX for 3 months and as I was worse off at the end of it they switched me to Leflunomideand which I gave up after two months as it nearly wrecked me. Fortunately that was just last February and before COVID arrived here.
Thanks for the info Jan, it is a big decision to make but my Rheumie has only mentioned it and it ‘won’t be yet’ she says. She wants more bloods before going any further and doesn’t want me to continue reducing either.
I suppose I’m a bit reticent when it’s been 7 years in March and can’t stand the thoughts of more ups and downs. At least my Rheumie is on my side - she seems to know how I feel and why and doesn’t force anything on me. Very understanding she is
Hi“ Went back up to 10mg. Saw Rheumatologist who did blood tests for adrenal insufficiency which came back with very low adrenal levels.”
Of course there were low Adrenal levels - once on long term Pred above 7.5mg - your Adrenals switch off temporarily - their function has been taken over by the steroids.
If your Rheumy wasn’t aware of that (would query why) - then the Endo most certainly should be - and should have explained things better!
Just as a matter of interest how did you reduce from 10mg to 8mg this time?
Hopefully not as quickly as previous advised in posts - your Rheumy seems to have some strange views on reducing. ...and what is his view of slowly tapering?
Below 10mg (particularly in view of your previous issues) my view is 0.5mg per month maybe every 2 months and using a slow tapering plan - bet yours wasn’t as slow as that.
Can’t comment on MTX - but it does seem to have mixed reviews - as PMRpro says only way to find out is to try.
Yes - I forgot to mention that glaring error! Of course there is no adrenal function to be identified at above 8mg pred!
And the endo is correct that there is nothing to be done - the only thing that will trigger a return of adrenal function is a long-ish period at below 5mg and even then it may not happen. There isn't any other approach. But you DO have to get below 5mg to get there and there isn't a lot of point worrying about it until then. And from 5mg you need to reduce VERY slowly for safety and success.
I agree with your reduction plan - I have been reducing bt .5 mg since 12 mg and am now at 9.5 for the first time - I spent one month at each dose but I think 2 months is a safer bet as I recently experienced a set back due to faulty 5 mg tabs.
I am just recovering from that episode that lasted 3 days before I saw the pharmacist and got a fresh batch of the 5 mg tabs which is now working properly. Will stay at 9.5 for another month as my monthly ESR and CRP went up slightly due to the bad pills.
Oh dear! Your Rheumatologist is really whizzing you off Pred this second time round again. Or perhaps if he did it last time, you never fully recovered from the first bout. It took me 4.5 years to get to 3 mgs and I still managed a normal Synacthen Test before I was diagnosed with GCA and LVV ( at 5 mgs) and had to return to a high dose of Pred. In my experience there was no alternative to reducing by tiny amounts ie 0.5 after 10 mgs using the dead slow method and stopping at the first twinge of symptoms. I am really not surprised that you feel awful, I know I would. I hope you don’t have anything else lurking, like I did. There is no real documented proof of Methotrexate being useful in our conditions. Our best advocate for it has been Mrs Nails and even she has had issues. I wish they would leave you alone on 10 mgs until the spring comes and just let your PMR burn out painlessly. Do you have adverse effects from Pred - like high blood sugar, eye problems, high blood pressure? You need to be monitoring these things when we are allowed. Also the possibility of GCA/LVV developing. Sometimes, stubborn PMR can point to this. Mine was diagnosed by a specialist Ultrasound Scan and a very diligent Rheumatologist. They are not all very good at our conditions, as your symptoms seem to demonstrate.
Thank you for your replies. I have reduced slowly this time - Sept to Jan for the 2 mgs from 10 to 8mgs.Side effects from Pred - weight gain, muscle weakness, no energy, High Blood Pressure, excessive sweating, general malaise....not to mention the moon face, dry curly hair which used to be straight!
I have 2 friends who have taken MTX. One was weened off Pred and then gradually weaned off MTX. No symptoms now. The other is still taking a combination of the two but is on really low dose of Pred/no side effects and has pretty much got her life back.
I have been so sensitive to Pred. I am allergic to a number of meds and so think I just have super sensitivity to medications - hence my concern about trying MTX.
I can empathise with all that you are going through. Over my period with PMR. I developed raised blood pressure and am now on medication to bring it down, with guess what, fatigue is in the side effects. Fatigue has been the biggest challenge. I found that having a sleep routine really helped, including a nap after lunch, always 90 minutes oddly. Fatigue seems to go hand in hand with all autoimmune diseases, it is not only Pred, although if you follow the fake energy you will feel more tired. I welcomed the curly hair, having always had thin, flat, dead straight hair. It looked thicker and with a curly hair product could scrunch in a way that looked fine. I experimented with products, shampoos and conditioner and found Kevin Murphy - expensive, natural and effective. It has been an adventure for me, particularly in the absence of good haircuts. The weight gain is so depressing but our disciplined members are right, Keto diets, low carb, low sugar do work on the weight and the plump cheeks. Very unforgiving with lapses, as all of us who had a happy Christmas are feeling the remorse for now.My point is, perhaps learn to live with Pred. as the devil you know, rather than adding in more heavy chemicals.
I am on Tocilizumab injections rather than high dose Pred again. Available to GCA patients who meet certain criteria. It is no magic wand though. None of these drugs are. Our aim is to feel as well as we can on the lowest possible dose of Pred.
I hope some of this is useful. It all looms very large, especially at times like these and can make you feel pretty low. Taking little steps helps a lot.
What on earth result did your rheumatologist think they would get testing someone at 10mg on steroids? I really do despair at the level of knowledge of some doctors.
Perhaps a little harsh! The rheumatologist I saw in September was very kind ... got me occupational physio to try to help with the exhaustion and inability to exercise. He originally had written to the Endo team asking for advise following the low function test of adrenals and it was the Endo team's decision to see me. I had an hour long consultation with the Endocrinologist from which he said there was nothing they could do while I am still on steroids. I don't necessary feel it's a lack of knowledge but rather NHS giving me time and attention in recognition of the miserable state I feel in to support me.But thanks for your reply anyway.
I’ve taken MTX & am still on it, this is the third time but l was on 20mg Pred a day when l started it & unable to reduce but that is a lot different to 8mg, l reduced from 20mg->18mg then started the MTX & successfully got to 7.5mg when it had to be stopped for Surgery & l put that reduction down to MTX l was off it for a year but was more than happy to go back on it once my PMR started to flare....
Not withstanding Adrenal Insufficiency l would not consider starting it at 8mg Pred but try a Very Slow Reduction by 0.5mg drops but as Pro likes to say we not relentlessly reducing to Zero but to the lowest dose possible while still keeping the PMR under control, for me at the moment that is 12.5mg plus MTX
If you look on my Profile you’ll find ‘My MTX Story’ my journey is very different to yours & MTX is not without its side effects many of which l’ve experienced but the overall result for me it’s preferable to very high doses of Pred.
Hi. I have had PMR for 6.5 years. For the first 4 I was unable to get below 10 mg. Rheumy suggested a trial of mtx, it is a slow process. I am on 20 mg mtx and on 6.5 mg pred. Twice tried to reduce below 6.5 and flared. At all times reduction of pred been using dead slow method and reducing by 0.5. So a year and a half on mtx and a reduction of 3.5.
Hello Goldfinch,I was in a similar situation to you last summer, I had reduced from 15mg pred to 8mg and stuck there still having some pretty bad days. Since September I have also been taking 20mg MTX weekly, no difference for about 12 weeks then I started seeing a definite improvement, I am now on 7mg pred but feeling much better, I have never seen any side effects at all from the MTX.
Hi. I’ve been on MTX for four months now to try and get pred dose down. I have giant cell arteritis but have been unable to get below 20mgs pred. It doesn’t seem to have helped nor hindered although that is difficult to be sure about. I am still very fatigued and weak really. Not a magic bullet for me but we are all different and have to hope to find the right combo. Good luck 👍
I am always nervous about side effects too. I have GCA. On high dose prednisone since 2018 and unable to taper lower than 8mg without horrendous side effects and complications, In 2019 I was put on tocilizumab for the allowed 1 year for GCA. I had no problems, except It didn’t allow me to taper lower than 8mg pred, so I was no better off.As a replacement I was put on a low dose of 5mg Methotrexate for a few weeks (against my wishes as I’d also heard negatives), with the intention of increasing the dose gradually, but this resulted in nausea and alarmingly elevated liver enzymes. I was told many people tolerate MTX very well, making me feel I’d complained too much. I cynically though that TOLERATE probably meant putting up with horrible nausea without complaint. I certainly complained. Very frustrating.
Now on Cellcept with no apparent problems, though after several months I’m still on 8mg pred. and staying there bit longer before trying to lower to 7mg pred. the aim being to taper to 6mg by the end of this year.
I like the idea of the very slow taper, however If I have to stay on a relatively low maintenance dose of pred. I’d rather do it without any prednisone sparing drugs but my neurologist and immunologist see this differently.
I have been on Methotrexate since last March to help me to reduce the Pred. I was diagnosed with PMR/suspected GCA in April 2017 and started on 40mg Pred, I tapered reasonably successfully down to 15/20mg but had several flares going below 15mg. Since I started n the Methotrexate, I have managed to taper 0.5mg per month to current dose of 7.5mg with no problems or side effects of the MTX. I was also prescribed Folic Acid when I started on MTX as apparently it helps to control any nausea which may occur. I hope this helps you. Regards, Pat
Thank you, Pat. It sounds like a similar experience to a friend of mine who is currently taking both MTX and Pred but has been able to reduce Pred slowly and has basically got her life back - walking, sleeping, losing weight etc. Thank you for your encouragement.
Hi. Yes I have had very good success with methotrexate. Mind you the nausea the day taking it was a problem initially, along with noticeable fatigue. I've been taking it for seven months and was able to discontinue prednisone three months ago. I space out the tablets, 3 with breakfast and 3 with lunch and I take them 10 to 15 minutes apart with food. No further nausea and fatigue has subsided. It took some time, but it is worth it. Blood samples show no inflammation for last 4 months.
I have been on mtx for about 4 years. stopped at one point but after 3 weeks had a massive flare so went back on it. Never had any side effects apart from thinning hair. My rheumatologist nurse suggested taking it every other week because it stays in the system. I'm not advocating you do that though.
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