Methotrexate or not?: I have been on prednisone for... - PMRGCAuk

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Methotrexate or not?

Dubler profile image
21 Replies

I have been on prednisone for 7 months for gca. I was down to 8 mg and my labs showed my crp to be 2.60 and my sed rate at 27. My rheumy wants to put me on metho. I’ve read about it and it sounds more frightening than the pred. I’ve recently been diagnosed with CIDP. It’s an antibody attacking the myelin coating of my nerves causing my numb feet. The neurologist wants to start gamaglobulin infusions. He said it would probably help my arteritis. My rheumy put me up to 10mg (I was at 8), until I see her in 2 weeks and we will talk about metho then. I’m hoping I’ll have some of these infusions done before then. I DONT want to take metho. How many of you are on it? It sounds very dangerous to me. I have a 40% blockage in one artery, an irregular heartbeat. I was hospitalized in oct for multiple blood clots in both lungs. I’m diabetic. I have hashimotos. Right now I have no symptoms of gca other than a weakness in my legs when I get up and some painful steps when I walk. But I Feel like walking. I’m doing a mile at the park. I’ve been on an anti inflammation diet for 10 days. I want to give my body a little more time. I know I can handle preds. Metho can cause loose teeth, mouth ulcers, tumors, it’s horrendous. Any advice? I’m 66

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Dubler
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21 Replies
PMRpro profile image
PMRproAmbassador

If I had got from a GCA starting dose (whatever it was) to 7mg in 7 months there is no way I would agree to taking mtx. Even 10mg is not dramatic at this stage. That is what is called a physiological dose, similar to that the body makes naturally and what is necessary for life. Pred is the drug for GCA - mtx is to try to reduce the pred dose if you get stuck at a higher dose. And you aren't.

Since your neuro is starting other stuff I would discuss it with him and get HIS view - but I wouldn't want to be on more drugs unless they were necessary. Lots of people are fine on mtx- but some don't do well with the adverse effects and my view is if you don't REALLY need it, don't add another complication to the mix.

Dubler profile image
Dubler in reply toPMRpro

Thank you. I feel the same way. I started at 40mg.

miss-philosopher profile image
miss-philosopher

I agree with Pro. there is no way I would take mtx at 8 or 10 mg. Actually I would newer take it.

Dubler profile image
Dubler in reply tomiss-philosopher

Thank you. I feel that way too

jinasc profile image
jinasc

Somewhere on here, there is a copy of a paper delivered by Prof Bhaskhar, in it he says, MTX does nothing for GCA. I have tried the 'search' box but zilch.

Here is part of the list of a talk he gave to a PMR GCA Support group last year.

"In my experience Methotrexate is not as effective in treating PMR or GCA as it is for rheumatoid arthritis although some trials have shown a small beneficial effect".

BTW It took me 4 years to get down to 10mg.................box but zilch

in reply tojinasc

I have search (using dasgupta), gca and mxt and can only find the overview if the paper you mentioned which was posted by you last I think. It is point 10... I have linked to your message in the interim... I am sure someone may have it. Have Googled the same combination but it doesn't seem to appear on my phone in a form I can seen...

healthunlocked.com/pmrgcauk...

And all the papers he has been involved in..... At some point... Saving this lot to read at some point...🤔😉

researchgate.net/profile/Bh...

jinasc profile image
jinasc in reply to

Bingo and thanks.................I have now bookmarked it...........it is part of a larger set.

Ta muchly

Marijo1951 profile image
Marijo1951

I've been taking MTX since December 2017. I started because I couldn't get below 25 mg of pred without GCA flaring. I had started on 60 mg the previous July. As PMRpro says, maybe your pred dosage has been reduced too quickly and you'd be better off increasing it rather than starting MTX.

I haven't had any bad side effects from MTX. However I had to take several courses of strong antibiotics between August and December last year because of a slow healing flesh wound that led to cellulitis. I realise now that I should probably have stopped taking the MTX while on antibiotics, but nobody advised me to do so.

Musiclady18 profile image
Musiclady18

I am by no means an expert on Metho but I am currently on it. I too was worried about the side effects, but to date, feels like acid reflux is what I've noticed to be different, an addition. I was on the prednisone got down to 4 mg had a flare and my rheumy has me trying metho in the thought of reducing the prednisone. Since being on Metho I have been feeling better but remember I am currently on prednisone 5 mg per day and Metho 20 mgs one time per week. My rheumy has suggested and I hope that when the metho kicks in around 6 weeks which should be within the next week or so, I could start to try to reduce my prednisone. I will be trying that soon in great hope. The reason for the switch to metho is that she felt my PMR was under control until my recent flare, metho can be reduced with no weaning prednisone needs to be weaned. I hope my message helps. It seems that you have other conditions that may certainly influence your treatment.

PMRpro profile image
PMRproAmbassador in reply toMusiclady18

Except at this stage it is the adrenal function which is in charge - and mtx doesn't help that return. That still requires slow and patient reduction of the pred dose.

Musiclady18 profile image
Musiclady18 in reply toPMRpro

Not sure I understand your reply PMR pro...........my stage or Dubler's?? My understanding is if the Metho kicks in then I reduce the prednisone, any suggestion as to reduction perhaps by 1/2 tablet? I am at 5 mg so go down by 1/2 mg ??

PMRpro profile image
PMRproAmbassador in reply toMusiclady18

If you look at the top of the reply box you will see my reply was to you.

I was pointing out that despite the methotrexate, reducing the dose of pred at this stage also requires a return of adrenal function. The only thing that triggers that is a reduction in the pred dose - being on mtx will not speed up the return of adrenal function and that is what governs the rate at which you will be able to cut the pred dose. The smaller the steps and the slower you go about it the less adverse effect it will have on you - the fatigue in particular. The DSNS approach also helps ease your body back to normal service.

Musiclady18 profile image
Musiclady18 in reply toPMRpro

thanks!

The highest levels of CRP (above 30 mg/L) are observed in bacterial infection, such as septic arthritis, meningitis and pneumonia. Do you have an infection... SED Rate high also point to possible infection it doesn't have to mean cancer...

PMRpro profile image
PMRproAmbassador in reply to

Raised CRP and ESR levels are also found in PMR and GCA - and they can be VERY high in some patients, I don't quite understand your point - there is no mention of such high levels of CRP or cancer in the post.

in reply to

There have been pmr/gca patients in to 100s without immediate or subsequent dx of cancer. I saw one at the weekend that was 500s and reduced to "normal range" with pred.

Dubler profile image
Dubler

Not that I know of. I just assumed it was a gca flare.

izzyart profile image
izzyart

I started on metho last fall when I had trouble reducing from 12 mg (diagnosed pmr in june '18, began 20mg pred)...each time I had a flare my rheumy advised it, finally I gave in...taking in 2 doses 1xweek 6mg, I think it has helped as I was at 6mg pred in Jan. and plan to get back to that after my 6 weeks of travel (I had most flares when traveling so I upped my pred dose to 8mg). use one month per 1/2 mg reduction and go on keto or plant paradox diet (Dr. Gundryto reduce inflammation and get rid of Hashimotos and Diabetes.

pszak72 profile image
pszak72

Dubler: I also had a spike in sed rate, mine at 29. My doc says he wouldn't consider going back to prednisone until sed was over 40. Have been off Pred for about a year and a half. From what I read about Meth, I would not consider taking it either! I had been on Pred for about a year in 2017. I have been taking a curcumin extract for about 3 years, makes CIDP bearable! Most important in GCA is how it affects the eyes, go see an Opthomologist to check blood supply to them. If normal, I would not go to Meth.

Dubler profile image
Dubler in reply topszak72

Thank you. I see my ophthalmologist every 3 months. So far so good. I am not doing the mtx. It’s not worth it. I take enough crap as it is.

Dubler profile image
Dubler

Thank you so much

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