Methotrexate GCA not effective unless started early

[gtate1914]

Can anyone tell me where Dr. Baskhar Dasgupta, gives his opinion on this subject that methotrexate is not effective for GCA unless started in first month? Am searching for it but have not found it yet. Thanks.

[HeronNS]

I can't find it either, but he suggests early introduction of mtx to enable a faster reduction from the very high dose of pred GCA requires. Found that opinion in a number of places.

rheumatology.org/Portals/0/...

[gtate1914 in reply to HeronNS]

I stopped because of numerous side effects, don't want to go back on it. Rheumy is not happy, wants me back on it. I think I would rather take my chances without it.

I was trying to find where Dr. Baskhar Dasgupta felt it was not useful for gca unless started early.

[HeronNS in reply to gtate1914]

What's your pred dose now? I got the impression from what I did find the reason for the early introduction was to try to avoid staying too long at the very high doses because the pred side effects are quite serious at that level. I expect the experts will know.

[gtate1914 in reply to HeronNS]

45mg. Been too long at high dose because I did not understand how to tell difference between withdrawal symptoms and flare symptoms. Pred has taken hard toll on me. But I’m still not convinced mtx is for me. Hard decisions.

[Sallyaches in reply to gtate1914]

I took methotrexate for about 18 months asa steroid sparer. I am now taking Azothiopine which for me is a better drug as it has fewer side effects and is in tablet form. Do you feel able to suggest that it’s not the steroid sparer you are opposed to but Methotrexate? You could say you had heard of someone taking Azathiopine instead. I am now down to 3mg but it has been a long struggle, also I have PMR and not GCA.

Best wishes

[bunnymom in reply to gtate1914]

I don't think medical community does a good job educating about steroid withdraw.

[PMRpro Ambassador in reply to bunnymom]

It's because they don't know about it - they can't tell the difference and tell the patient to go back up unnecessarily...

[Mstiles in reply to gtate1914]

Hi gtate,

That was my experience too, (too long on the high dose because of not being able to tell the difference and a rheumy that didn’t listen). It’s so disheartening to have to struggle with your doctor.

Hope things get better for you soon!

[gtate1914 in reply to Mstiles]

I agree. And also I think another drug added is not always a good idea, especially if its value is questionable and not to mention the horrid side effects. Maybe they work ok for some, but I try to find a more natural way .... example, instead of PPIs I drink kefir, homemade, protects my stomach. And has calcium and vitamins to boot.

[PMRpro Ambassador in reply to HeronNS]

I don't think that there is significant evidence that methotrexate actually makes much difference in the early days in particular - it can take months to start to take effect so it isn't going to make a difference at the point you would want to reduce high doses. But it does seem to work better (and all things are relative after all) when it is introduced right from the start - and no, I can't find the reference either!

[gtate1914 in reply to PMRpro]

That’s the same conclusion I’ve come to.

[Telian in reply to PMRpro]

Professor says he prefers Leflunomide to mtx as, in his opinion, mtx doesn't always work. He does use both as it works for some but whichever he uses he says it has to be started early in the illness.

[PMRpro Ambassador in reply to Telian]

I wish I could find where Prof D says that - there is a video somewhere on the forum where it is quoted but I have no idea where. He used leflunomide in a study and it looked really promising. My rheumy sees it the other way round, says he has had good experiences with mtx...

[gtate1914 in reply to PMRpro]

So much conflicting information. I will continue to look for the video also. I'm 5 1/2 months into my treatment for GCA and PMR, had it a couple months without knowing. Tapering has been so difficult. Did not know how to do so in the beginning and it was too fast. Still learning. Currently day 5 AGAIN at 45mg. and going down by 2.5mg. Feels like I'm having some pred withdrawals last couple of days. So discouraging. I did not feel MTX was helping, only giving more side effects.

Thanks

[Telian in reply to PMRpro]

I haven't seen a video, he told us at the Rettondon Meet earlier this year. I'll see if I can find it...

[PMRpro Ambassador]

If mtx causes side effects for you - then it isn't for you.

The current evidence is that mtx has only modest benefits - so if it makes you feel worse, what is the point?

[gtate1914 in reply to PMRpro]

Agree. I'm glad it works for some.

[Linny3 in reply to gtate1914]

I am not sure if the Methotrexate worked for me. I was able to get down to 6mg pred. from 20mg in about a 1yr. time. I started the methotrexate from the day I was diagnosed. Unfortunately, I had a major flare and have been struggling ever since, that was in 2017. This year I took myself off of the methotrexate. I decided enough was enough. When I finally told my dr. she said ok but wanted to put me on another drug, Plaquenil. Not sure I am going on that as it can cause problem with the eyes. I decided to try taking my meds differently and try to taper the pred. myself with the help of all the info on this site. Thank God for this site. I have learned so much. I am going to give myself 6 months and see how it goes. If I can't seem to get anywhere with tapering, I might go on the other drug. This is the best I have felt since being diagnosed in 2016. So that gives me hope.

Take Care

Lin