Pros and Cons on experiences with Methothrexate.

[Spooky76]

Just wanted to know who has been put on Methothrexate in place of Prednisone and their pros and cons. Thanks

[SheffieldJane]

Methotrexate is offered to PMR/GCA sufferers having difficulty coming off steroids. It is always alongside Prednisalone and is reputed to help you taper your Pred dose. Nothing helps our conditions except Prednisalone, Methotrexate would be supplementary.There have been discussions on Methotrexate if you do a search on here.

Like everything Pred included, there are side effects and some folk can’t abide them. Lots of personal research needed.

[Hidden]

Hi

As Jane says Methotrexate is added as an extra as a Steroid Sparer not instead of. I’ve been on Methotrexate & have posted my experiences before but if you can’t find them, l can forward it to you.

MrsN

[Christophene47]

Dear Spooky, I was on 16mg Prednisone, and to spare me from the effects of Prednisone, I was put on low dose Methotrexate 3X a week. I had been on Azanthopine, but it made me very ill with nausea and vomiting. I was switched to methotrexate which did not bother me too much. However, I changed rheumatologists and he was not at all sure It was appropriate. I just stopped it.

Later, I was referred to a hematologist who also was also. somewhat aghast showing that this drug used to be steroid sparing also causes cancer; he was also aghast. He showed me statistics of % of people who actually got cancer from Methotrexate. Without it, and just Prednisone, I did ok.

Seek another opinion. I stopped it and felt no different. If you could avoid it, I would . Although many people on this site use it. Methotrexate treats cancer and causes it as well. It is in the same category as Azanthopine.

If you notice the studies being done outlined in the first few pages of this site, one is aimed at learning if Azanthopine is necessary in treatment of vasculitis. The same might hold true for Methotrexate as they are in the same category of drug. Let us know your decision.

Best wishes....

,

[Marijo1951]

I've been taking MTX since just after Christmas 2017. Twice I had a serious flare of GCA symptoms when trying to reduce pred to 25 mg per day. The MTX was prescribed after the second flare, firstly at 10 mg per week and increased to 15 mg after a couple of months. I'm fairly certain that the MTX has helped me to reduce the pred (currently at 10 mg per day) and I haven't had any nasty side effects. I go for blood tests at the beginning of each month to make sure my liver is functioning as it should, and so far it has been fine.

[PenelopeVita-Finzi]

I have been on Methotrexate for 3 1/2 years, 15mg once a week plus Folic Acid once a week. I am now down to 1mg Pred a day after 4 1/2 years for GCA. I was very reluctant to go on to Methotrexate but I was persuaded that it would help with reducing the Pred and its undesired side effects. I have no way of telling if that it did! I did not have any nasty side effects from the Metho and will continue on it until I am finally completely off Pred. It is essential to have regular monthly blood tests.

Good luck!

[Suet3942]

Ditto to the above. I’ve been in it for 2 years and recently stopped because I thought it may not be doing anything. Had a major flare and could hardly walk. Back on it now. As long as you have regular blood tests you should be ok. My hair has got thinner though which I hate.

[Visby]

I was told by rheumy to come off pred and he put me on methotrexate 15mg per week unfortunately it did nothing to help pmr tried for8months now off that and back on pred which is so much better and back to my GP which is also so much better than a rheumy that is not at all interested but of course everyone is different it may help you have since been informed that methotrexate is better if it goes with pred

[Marijo1951 in reply to Visby]

As far as I know, the MTX is to help reduce the pred dose, but it isn't expected to deal with the GCA or PMR symptoms.

[PMRpro Ambassador in reply to Visby]

Did he offer a different diagnosis from PMR? If he didn't, there was no call to take you off pred and replace it with mtx. mtx only (maybe) increases the effect of the pred, it cannot replace it in PMR.

[Visby in reply to PMRpro]

No he just said that pred was bad for you and to come off it , I’d already been tapering but was getting flare ups that is why GP referred me to him so I tapered down to 1mg and had 2wks of every other day till I stopped , I had great hopes of the methotrexate helping but it was downhill all the way , it is only since joining this group that I have more understanding of pmr thanks to people like yourself .

[PMRpro Ambassador in reply to Visby]

Not half as bad for you as GCA can be - since untreated PMR is 7 times more likely to progress to GCA. Putting a patient on only mtx means the PMR inflammation is not being managed so that is putting the patient at risk. IMHO that is irresponsible.

If it were me I'd be exploring a complaint - because one day it may lead to someone losing their sight.

[Visby in reply to PMRpro]

I must admit he was the worse medical person I have ever come across and I have great respect for drs etc and can appreciate they have a hard job and too many patients but he was totally uninterested in any thing I had to say the rheumy nurses were very pleasant though .

[PMRpro Ambassador in reply to Visby]

Obviously not a happy bunny - many rheumatolgists seem to be so. I think it is often disappointment in their chosen field. They think it will be a lazy option, no dramatic crises and not much night/weekend emergency cover - but there is also a lack of "Cure!!" related to their management of patients. Too many don't get that their role is to help us live as best we can despite there being no cure for our illness. The good ones really do get that - and work hard with their patients to achieve it.

[Visby in reply to PMRpro]

Yes your right I’m just glad I have a good and caring GP if I ever have to be referred again I shall def ask for a different one trouble is we live out on a limb and he was the nearest ,thank you for your reply’s it helps me a lot .

[GerriMc]

I’ve posted on this before too. I’m one of the people who has benefited from MTX. I had gone from 20mg Pred down to 17.5 but couldn’t get passed that without causing a return of PMR symptoms. I was reluctant to take MTX because of others’ bad experiences. But apart from a small amount of initial hair loss which settled down quite quickly, I have had no adverse effects. I that 15 mgs per week plus 5 mgs Folic Acid a day (not taken on the same day as MTX). I have bloods done every two months to check for any problems.

My Rheumy plots my CRP and ESR readings on a graph and it showed a significant drop in both following the MTX.

If you’re having problems reducing Pred, I’d give it a try. If you feel any symptoms, you can just stop it.

Best of luck.

Gerri

[Paulamac77]

I have GCA and I’ve been taking MTX for over a year without undue side effects except some hair loss although that has eased considerably. I also take Folic acid weekly and I do have monthly blood tests. Using the DSNS tapering method I am now down to 2mg of pred a day without (fingers crossed!) any problems. The moonface has gone but the additional weight gain is slow to come off.

I can only presume the MTX is assisting this process since, prior to taking it, I had several flares when trying to taper the steroids below 15mg.

[dancersize]

I started with MTX in Jan 2019 since I couldn't get below 6mg pred and blood tests showed inflammation still although I felt OK I started with 10mg once a week for two weeks then increased to 20mg a week, I take folic acid the days I don't take MTX. Have slowly tapered to 5.5 and almost at 5mg of pred now. Had the blood test a month after starting MTX. My problem is my rheumy had an emergency trip overseas (to UK and I am in OZ) so I don't know what the results of the blood test were. No side effects that I know about so far.