Methotrexate for GCA

[PenelopeVita-Finzi]

Does anyone have experience of Methotrexate? I am about to start this having been on steroids 20mg a day since September 2014. I have had bad insomnia, weight gain and increasing muscle weakness while on steroids.

[Celtic PMRGCAuk volunteer]

Penelope, am I right in understanding that you have been on 20mg of steroids continuously since last September? If that is the case, then it isn't at all surprising that you have the side effects that you describe.

The usual recommended starting dose in the case of a PMR diagnosis is 15mg, although sometimes a higher dose of 20mg is prescribed especially where a patient is overweight, and even higher when the linked condition, GCA, is suspected.

If you have tried reducing your dose without success, even in very small decrements, then I can understand why a steroid-sparing medication such as Methotrexate is being suggested.

Perhaps if you can give us a little more information we may be able to offer more help.

[PenelopeVita-Finzi in reply to Celtic]

GCA was diagnosed last September and I was put onto 20mg of steroids immediately. A subsequent biopsy was inconclusive. The pains in my head and scalp were reduced but have never completely gone & have recently become worse.

I suffered from severe insomnia but that has been slightly better for the past three months. I have never had a problem with weight until put on to steroids. Muscle weakness has been gradually getting worse. I gave always been a walker and find my slowness and tiredness very distressing. I wonder if moving to Methotrexate will help with all this as my steroid dose is lowered?

[PMRpro Ambassador in reply to PenelopeVita-Finzi]

If it is GCA you have then methotrexate will not replace the pred - it may allow you to reduce it but even that is not certain by any means. Some people find they initially are able to reduce the dose - and then have a flare and have to go back to higher dose.

If your head pains are increasing again then you need further assessment and possibly higher pred, what they have given you is neither one thing nor the other, it is too high for PMR and not enough to control GCA, the usual starting dose being 40mg for patients with no visual symptoms. The biopsy would have confirmed it was GCA had it been positive, being negative tells you nothing, it doesn't mean it isn't GCA however.

If you have PMR then you should be able to reduce that dose slowly. If you have GCA then it isn't high enough and I would be inclined to suggest you ask for a second opinion. Where are you?

[sondya in reply to PenelopeVita-Finzi]

Hi Penelope - I was diagnosed with GCA in December last year after an intensive programme of tests in (Auckland, NZ) hospitals - which took a couple of days! One was a consultation with an eye specialist who concluded while there was no damage to the back of the eye, recommended a biopsy of the right temporal artery. She added if the test was negative, she'd ask for a biopsy of the left temporal artery. Thank goodness the first attempt was conclusive.

[PenelopeVita-Finzi]

I have had a second opinion. The consultant strongly recommended that I move to Methotrexate which eould allow me to reduce the steroids. He agreed the treatment I was being given.

I am in North London.

[Angela123]

Hi Penelope. I have had PMR for 15 months and am at 5mgs Prednisolone. I have taken Methotrexate for 18 months in total (I had a 6 month break due to problems) but I am taking it for Rheumatoid Arthritis which I also have. I don't know if it has helped me to manage with a lower dose of steroids or not. I understand that it works for some people and others not. It has certainly kicked my RA into the long grass, but that's not what you would be taking it for. It's a decision you need to take along with advice from your Rheumatologist. My experience of MTX is that I take 15mgs (6 tablets) once a week in the evening and I take folic acid three days after that which helps with any side effects. Some people get nausea but I don't. I take them after my evening meal. The next day I used to feel a bit spaced out but not now. My hair thinned a bit but it grew back and is now a bit coarser. There are lots of side effects listed but not everyone gets them and hopefully you wouldn't have to take it for long whereas I'm in it for the long haul. Best of luck and let us know how you get on. Angela.

[PenelopeVita-Finzi in reply to Angela123]

Thank you, Angela, for taking the trouble to write such a full and useful reply. I am going to start Methotrexate as both consultants are in agreement that I should do so. Penelope

[trish29 in reply to PenelopeVita-Finzi]

Hello PenelopeVita-Finzi..I would like to say that I wish you well with the Methotrexate..I have been back on Methotrexate since November2014 apart for a 3 week break due to my hospital team losing my renewal prescription. I am on 12.O5 mg self injecting injections and at the moment I am on 14/ 14.O5 mg prednisolone..I allow half a mg leeway on really bad days but earlier in the year after a fall before Xmas I was put up to 17 / 17/05 mg so I have come down a bit on the pred ..I take 5mg of folic acid the day after my injection but I see Angela who answered your post takes hers 3 days after. I'm wondering if I take mine too soon after my injection but that is what the Rheumatology Nurse told me to do .I hope you don't get too many side effects , I seem to lose 2 days feeling nauseous and Dizzy - migraines/ muzzy heads ..on the whole I feel like I am drugged up but a few years ago I took Methotrexate Orally but I wasn't looked after by the Medical Team at the time and had to come off of it ..I personally asked to try again in injection form ..I am 68 and i have had PMR for 11 years and I just want to get back on with my life. Please make sure you get your Blood tests regularly .. I am so pleased we have this Forum to be in touch with other sufferers .. Family and friends can be understanding But I always feel they think I am not as ill as I feel .. I will be watching for your posts with interest . trish 29

[PenelopeVita-Finzi in reply to trish29]

Thank you very much, Trish. It is really kind of you to take the time to answer so fully.

I have just has a flare-up of symptoms of GCA and my dose of steroids doubled to 40mg a day. Keeping a track of what to take when plus all the appointments for blood tests, clinics and GP is not easy. Like you, I want my life back!

I agree the forum is invaluable.

Penelope VF

[Sallyaches]

Hi Penelope , I have only been taking methiotrexate for 6 weeks and prednisilone for 3 months but this has been my experience.

I started on 20 mg of prednisilone for PMR after 15 gave me very little relief and my inflammatory markers were staying very high. The prednisilone at 20mg gave me vivid nightmares, mood swings and hot sweats but did reduce the pain. When I saw the rheumatologist he recommended methiotrexate by injection.

This is a medipen device which is really easy to use and the injection is virtually painless. At present I inject on Monday night have folic acid on Friday and once a fortnight have a blood test on Monday morning. So far no side effects from the methiotrexate and I am down to 12 mg of prednisilone without too many aches and pains. I would like to be able to say I am able to walk as I used to but I am still slower than I would like and standing or walking for more than about 30 minutes is uncomfortable.

I feel that I am probably on the best treatment for me and I was told that the injection being slow release would produce fewer side effects.

Hope this helps

[PenelopeVita-Finzi in reply to Sallyaches]

Thank you. It does help to hear of your, largely, positive experience. I am particularly pleased to hear you have not had any unpleasant side effects from Methotrexate.

Thank you agaon, Penelope VF

[Leeleep in reply to PenelopeVita-Finzi]

You should have been on no lower then 40 mgs of prednisone for a starting dose with uncomplicated GCA. 20 is for PMR.

[Christophene47 in reply to Sallyaches]

It has been 3 years since you wrote of walking slower and standing or. walking for 20 mi.or more was quite out of the question. How are you doing now , was your outcome acceptable. What meds did you finally end up with? Thank you. Feeling lost.