Opinions on Methotrexate please
Posted , 12 users are following.
Hi all, I have had PMR for about 3 years. I am on Pred and down to 7mg for the second time. Not feeling too bad still pretty tough to get going in the mornings but nothing too horrendous pain wise. I have been referred to a Rheumy team and they have suggested I try Methotrexate. I was given a leaftlet and told to have a think and come back to discuss. My follow up appt was today and I said that I thought I would give it a go but then I got a lot more info about side effects etc and have come away pretty frightened. Also it appears that I will be on both sets of drugs and all the other stuff that goes with it (stomach tabs, bone tabs etc) for a least 3 months in the first instance and then slowly, very slowly reduce the Pred. On the face of it I don't see that I have got anything to gain and a lot more potential misery if I decide to go ahead. I am sat here with the new drugs but I thought I would have a good long think and ask all you lovely people who have helped so much in the past what your experiences have been. Hope to hear from you soon - good or bad. Thanks for being there!!
1 like, 19 replies
Susanne_M_UK shirley40391
Posted
My situation is very different from yours though. I have been on prednisolone for years, first with PMR, on a relatively small dose, and for the last 14 months or so, on a massive dose due to the arrival of GCA at the end of 2015.
I've had several flares and have been up and down on the dose, but never able to go below 20mg. I'm currently on 40mg due to bad flare very recently.
MTX was offered to me earlier in my GCA treatment, but I refused it, as I was also very concerned about the potential side effects. However, I finally agreed to start, as the preds are really playing havoc with my body and I'm desperate to taper down to a lower dose.
I believe 7mg pred is often a sticking point on tapering, so you really need to think hard, as you are obviously doing, about whether you are prepared to take the risk or want to try to slowly taper the preds on their own.
There is a lot of bad press about MTX, and the possible side effects are very scary. I've made the decision, but it wasn't easy.
Susanne_M_UK
Posted
shirley40391 Susanne_M_UK
Posted
Sheilamac_Fife shirley40391
Posted
i can only tell you what I would do. Or in this case wouldn't do.... Judging by others 3 years isn't that long and to be at 7mg is good but as Susanne has said, lots of people have problems tapering at this dose. Have you tried the dead slow, nearly stop method? It's working for me. I'm currently going from 6mg to 5.5mg and I'm ok except for horrendous fatigue. I'm beginning to wonder if my Adrenal system hasn't kicked in yet.
Personally, I wouldn't add any more side effect rich drugs to the mix, but only you can decide what is right for you.
Also my understanding was that Methotrexate hasn't been proven to work with PMR, maybe for RA ??
Please let us know what you decide.
Sheila
shirley40391 Sheilamac_Fife
Posted
Thanks so much for taking the time to reply - I am starting to feel calmer about the whole thing already!
Sheilamac_Fife shirley40391
Posted
Good Luck with your tapering. 0.5mg over 4-6 weeks with DSNS method and I'm sure you will be fine. If not, come back on here and have a moan at me about it!...
😉☺️
jo42444 shirley40391
Posted
Joanne
shirley40391 jo42444
Posted
linda17563 shirley40391
Posted
My sister tried MTX (only 2 tabs) for RA, it affected her liver badly (she`s teetotal) took weeks for readings to become "normal". again...
Good luck in your decision....
linda17563 jo42444
Posted
Dave-California shirley40391
Posted
I believe from detailed research and my rheumatologist that methotrexate reduces the activity of your immune system which typically is overactive in PMR conditions. These drugs (DMARD), such as methotrexate, ‘dampen’ down the underlying disease process rather than simply treating symptoms.
My rheumatologist identified that some of my symptoms developed from my preliminary long term steroid use and that methotrexate would assist me in maintaining a long taper, hopefully to zero or close to zero with less pain, but definitely could not replace prednisone.
I have just started to try a MTX taper - down to 20mg per week - no problem so far.
As we all know PMR cannot be cured - it can go into remission and maybe that occurs if you actually reduce Prednisone to a low level or potentially zero, but some have to remain on very low doses of prednisone forever.
Anyway, enough from me for the time being.
Dave
PS - one other thing about Methotrexate - no more alcohol is recommended - I took this advice - a struggle but I guess it's worth it !!
shirley40391 Dave-California
Posted
Dave-California shirley40391
Posted
I think that the few things like skin thinning, and various other typical PMR things are the result of PMR and Pred, not MTX.
From the time I started MTX, the PMR flares that I have had during the Prednisone tapering over the last year or so have been much less extreme than before I started the MTX. But also I am very careful about tapering prednisone VERY slowly and making small prednisone adjustments when any evidence of a flare occurs. I am working on a 0.5mg increment taper for about three months and sometimes doing a daily 0.5mg increase/decrease for a period of time to make the taper even slower. Like I said, it seems to be working OK for me.
Hope all goes well for you.
Dave
shirley40391 Dave-California
Posted
LayneTX shirley40391
Posted
I'm on two DMARDS. Plaquinel and Sulfasalazine. I drink wine occasionally (more before these drugs) so Rheumy put me on the Sulfasalazine instead of the methotrexate.
The Plaquinel at first caused some dizziness and nausea, but not much really. Some ear ringing, but it stopped soon. The Plaquinel upsets my stomach as does the Pred.
The Sulfasalazine just makes me very thirsty and pee turns yellow
So....I don't know, I fear stopping the DMARDS if it means I'm less likely to have a flare and if I can get off Pred, then perhaps I'll keep going.
not sure if affected hair and skin, Pred did for sure!