I've now had my second GCA flare when at 25 mg of Prednisolone per day. The first time in October my dose was increased to 40 mg to be tapered fairly slowly. Last week I again reduced to 25 mg and that strange discomfort in the scalp area came back on Christmas Eve and didn't go away.
Yesterday I went to the hospital where I'm being treated (the Royal Free in north London). They were very thorough and very kind as always. Fortunately, so far I've never had any eye symptoms, which is always my main concern. I've now been put back to 40 mg per day, to be reduced to 35 mg in 4 weeks' time. In addition I've been prescribed Methotrexate to be taken once a week, plus folic acid also to be taken once a week but on a different day.
I can see that Methotrexate might stop an overactive immune system producing the giant cells which would be marvelous, but can't help being concerned about what other - possibly detrimental - effects it might have on my immune system. Still it's so demoralising to keeps stalling at the same point that I've reluctantly started taking it. I have to go to the hospital every 2 weeks for blood tests and I have a rheumy appointment in February, so I'm being well monitored.
I'd be interested to hear from anybody with experience of taking Methotrexate. In your opinion is it effective or do the drawbacks outweigh the benefits?
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Marijo1951
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The GCA guidelines now suggest it be started within the first month of pred treatment and it is felt to reduce the rate of flares. It is also thought to potentiate the effect of a given dose of pred - i.e. you get more bang for your buck. But whether it works for everyone and whether it allows you to get to a lower dose of pred remains controversial. In PMR it was found in a study that while the patients did get to a lower dose and had fewer flares, the rate of pred side effects was exactly the same. My personal opinion is that reducing very slowly (not from 40 to 25 in 2 months, that isn't slow, and not going back to the dose you flared at the previous time) works as well but that if you can take mtx without any side effects it is probably worth trying. If there are unpleasant side effects - that is a different matter.
It is possible that one dose of folic acid a week is not enough - some doctors give it daily except on the day you take the mtx. So if you have problems - don't be afraid to ask for more folic acid.
I was diagnosed with GCA (no never had PMR). It took six months to come down from 60mg to 20 mg and then the first 'flare'. Up to 40mg, but again when down to 20mg another flare.
Back to 40 mg, but this time the Rheumatologist thought about Metho but was unsure about the benefits for GCA. It was not recommended for GCA patients at that time. He used it for people who had PMR and were struggling.
After some discussion and I did some math adding up steroid side effects (83 known) and then Metho side effects and I was not happy. He agreed and jointly we decided not to go down that route, but try the 10% rule. Now remember this was nearly 13 years ago and the 10% at a time was just sort of being spoken about. I must say, I had a brilliant Consultant who listened and worked with his patients.
So 10% of whatever level of pred I was on, pick a day I was going to take a drop and arrange to do very little for the next 4 or 5 days, if the 'withdrawal symptoms' subsided and nothing happened, wait about 2 or three weeks and take another drop.
This worked and I got down to 10mg.................by that time I had encountered Ragnar and subsequently PMRpro devised a reduction plan and I did another. Either one or the other works for most people. Now we have reduction plans, one of which has been taken up by a Researcher and now the medics are interested and on this site, there is a thread where you can take a look at them and decide but always discuss them with your medics.
Dead Slow and Nearly Stop (DSNS) and Tortoise and Hare (TAH) can both be obtained free of charge by sending an email to pmrgcafightersne@gmail.com.
So I had rocky 18 months then 3 and a half steady years and then remission.
1 Jan 2017 the start the 7th in remission and we know so much more now than we did way back then and there is so much more research taking place.
There is a light at the end of the Tunnel, we just do not know how long our particular tunnel.
Great post jinasc - I am totally lost as to what the best next step is for me!
Hi,
You don't say how long you have had GCA for and have been on fairly high dose prednisolone.
I am on Methotrexate for another auto immune disease along with Infliximab, I have taken Methotrexate with prednisolone in the past. I have had no side effects apart from a little hair loss ( noticed only by me ). I have been on both the oral tablets and injections.
Although I don't have GCA I do have some large vessel involvement ( aorta ) and have had jaw claudication along with hip and shoulder pain. I have found Methotrexate beneficial for all my symptoms.
Hi Marino - I was diagnosed with GCA in August 2016, started on 60mg and after a pretty rocky ride got to 22 and a half by Christmas, got stuck at that level and was given methotrexate by my Consultant. Took it for 4 months and then stopped as felt increasing unwell on it, but did manage to reduce to 16mg by mid June, so possibly helped.
However also consulted Prof. Dasgupta the leading expert in GCA, based at Southend, who said Methotrexate was only effective when given right at the start of treatment for GCA.
Totally agree with the other replies to your question, the key is reducing very slowly and waiting at each level until you feel stabilised. From 40mg I was advised to drop in 2 and a half doses as I got bad side effects. And then 1mg a month from 15 to 10 and now only half a mg a month. So far I have not experienced a flare, fingers crossed, definitely not complacement as have found getting to 10 a real struggle.
Thank you for your well informed responses. I'm pretty confused about all this to be frank. In view of what Professor Dasgupta told Sho-Sho, I wonder why Methotrexate isn't prescribed initially for every patient with GCA. Is there any point in introducing it after 5 months of treatment? I think for the time being I'll take it as prescribed and have a discussion with my rheumy about slow pred tapering when I see her in February.
Because it is a relatively new concept in the UK. It is used from the start in other countries I think. Past experience in PMR hasn't shown significant benefit - and since it is known that pred is the mainstay in GCA to reduce risk of loss of vision they do tend to stick to the safe side. But new ideas do take a long time to be disseminated in rheumatology - unless it is a big new drug that is going to make a lot of difference to a drug company in which case they will be shouting it from the rooftops. Methotrexate is an old drug and won't make anyone any money so there is no support there. It is also quite difficult to do controlled studies in GCA - it is rare and getting together large numbers of results, however you do it, is difficult.
I'm interested to know that there's no money in researching Methotrexate as I suspected that it wasn't used immediately because it was considered too expensive - that teaches me not to jump to cynical conclusions about the NHS. If I was asked to take part in a controlled study of GCA, I'd jump at the chance to help in some way. I started a nasty cold on Christmas Eve. The worst is over now but having that on top of everything else, especially at a time of year that's meant to be cheerful, has rather knocked me out and left me feeling a bit depressed. I catnapped most of this morning but I'm now (at 2.15 pm) going to struggle into my coat and shoes and catch the bus a few stops and have a slow walk back home. I absolutely don't want to do it but (in theory at least) I know it will do me good. I'm determined to feel more positive as 2018 begins. Happy New Year to everybody.
Methotrexate is actually even older than pred - which was developed in the early 1950s whereas methotrexate was made in 1947. As such they cost what it costs to make and they are both pretty cheap. It is the first line approach for rheumatoid arthritis and some other inflammatory arthritides as well as a few other autoimmune disorders so is widely used. If there is good evidence it does make a significant difference then you would really expect it to be used - but as far as I can tell it seems to be something that has come up since the most recent discussions about the new Guidelines which we are waiting to have published so it is still not public knowledge.
The NHS has refused to approve the use of tocilizumab - but that IS on the basis of cost (or rather value for money in terms of QWALYS): about £12K per year.
This forum is a godsend for those like me who never had any serious illness before and know next to nothing about pharmaceuticals and NHS funding. Thanks for all the useful information. I'm going to make my tiny contribution regarding Tocilizumab by requesting NICE to reconsider their decision. It's hard knowing that there is something that could alleviate the condition to some extent and we can't get hold of it. By the way the slow walk was well worth the effort, although I spent money I didn't intend to in the Oxfam shop buying next year's Christmas cards and wrapping paper at half price.
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