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PMRGCAuk
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Methotrexate question

I was diagnosed with PMR & GCA in January this year after experiencing PMR symptoms for almost a year previously. I was initially on 40mg of prednisone.

I started having an issue with my right foot after using a vibration machine at the gym in mid April & the top of my foot over the instep is still sore & inflammed as well as my big toe. My GP thought this may be PMR related & sent me back to the rheumatologist who thinks it may be the start of Rheumatoid Arthritis & that I have RA, GCA and PMR. I know I'm not a doctor, but having consulted Dr Google I'm not convinced of this RA diagnosis & will ask for blood tests etc

I had a PMR flare in mid May when trying to reduce from 16.25 to 15. During this flare I had pain in both calves & knees, & my CRP level increased to 12 (having been 1 or 2 for a long time). My CRP level is now back to 2 which is back in the normal range.

My Rheumotolgist said that methotrexate is used for RA & says it can also help people get off steroids faster, & has suggested that I start taking it.

I have a dilemma here as really don't know what to do re taking the methotrexate and folic acid also prescribed. If I can be convinced about the RA it's probably a no brainer. However if not with PMR & GCA is it better to stay on prednisone for longer or introduce this new drug?

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Some forms of inflammatory arthritis can present looking like PMR - but what were the rheumatologist's grounds for suspecting you also have GCA? Have you had the foot x-rayed to see if there is any sign of damage to the metatarsals (famed for footballer's injuries!).

I have to say I would disagree that mtx can get you off pred sooner - but it has got a fairish track record in allowing some patients to manage on a lower dose of pred. It is routinely used for PMR in other countries, often started at the same time as the pred. Does it make a difference? I don't know - but my attitude now is that it is worth trying for a few months at least. If it doesn't cause unpleasant side effects - and thousands of inflammatory arthritis patients take it daily with no problems at all - you have tried. If it doesn't help you reduce the pred or you have intolerable side effects - you can stop taking it.

The folic acid is to reduce the side effects of the mtx - just a vitamin pill.

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Thank you PMRpro. The foot has been x-rayed & there were no fractures or signs of arthritis.

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That's good then.

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Sorry I didn't answer all of your query. Re the GCA, I went to my GP in early January as unable to eat in the mornings due to jaw & teeth pain. I also had a pain behind my right eye, a tender scalp, very stiff neck and shoulders. The jaw & teeth pain, tender scalp & pain behind my eye were new symptoms. Over the previous 10 months I was undiagnosed & had worsening pain in neck, shoulders, thighs, calfs & was unable to turn over in bed. I was having to use my arms to get up from seats. The GP initially diagnosed PMR & then a day later after blood tests showed ESR of 96 & CRP 68 ordered a temporal artery biopsy. This was negative but a rheumatologist a week later said I had the symptoms of GCA & it had to be treated.

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Good rheumy then - not all realise a negative biopsy doesn't mean a lot.

All the best for your decision about adding mtx - because it should be a shared decision not just the rheumy's call.

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Thank you. I appreciate your advice

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I think from what you are saying, you believe its better to take mtx with the possibility of reducing the prednisone, rather than possibly staying on a higher dose of prednisone?

i.e. prednisone is worse than mtx in terms of side effects? I've tried looking for articles on this subject on the net, but cant find anything. Again thanks for your input

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No - that isn't what I mean really. Personally I don't have a problem with the pred dose in PMR at least - but the doctors often do, especially when you have been on pred a long time or at a high dose as you are. But since your doctor suspects there may be RA involved - methotrexate is the first line approach for RA and it might make sense to TRY it. If side effects make you ill or it doesn't work - then you can stop. There is some evidence that using methotrexate early in GCA (the first month) does help although the effect is less when introduced much later.

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Thanks & your comments do make sense.

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I started on 60 mg per day of pred on 31st July last year, reduced to 40 mg after a few weeks. As I reduced, I twice ( in October and December) had a flare of GCA symptoms when I was trying to get to 25 mg and had to go back to 40 mg. The second time I was prescribed Methotrexate, originally 40 mg per week, later increased to 60 mg, plus folic acid. I have now reduced to 20 mg and, so far after a week, have no flare symptoms. I'm due to reduce to 17.5 mg at the beginning of July, then 15 mg after 4 weeks. We'll see how it goes, but I do think the Methotrexate has helped me to cut the steroids.

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Thank you Marijo. Have you experienced any side effects from the methotrexate?

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I found at first that if I took it in the morning I felt ill for the rest of the day - nothing very specific, just generally unwell and fatigued like the third day of a bout of flu. I now set my alarm to remind me to take it at 10 pm and find I feel okay the next day. I think it did give me a few bouts of diarrhoea but my rheumy raised the dose of folic acid from one day to five days per week which seemed to deal with that. I'm not one for taking unnecessary medication, and I wouldn't have continued with it if I hadn't felt it was doing me some good. It's such a pity that none of these wonderful meds come without potential side effects.

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Thank you

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If one stops taking methotrexate will some or all of the benefit of it be gone and prednisone will probably need to be increased? That is my concern. My rheumy is insistent I take it. It did not instill confidence in me when I asked what the likelihood of benefit to me and answer was "it was only a hope". Such a toxic drug to add to my problems if not of probable benefit and then if I cannot tolerate it have to quit and go back up on the pred. Anyone had experience with quitting mtx and having to increase their pred?

Also, anyone had issues with GERD while on mtx? The next day after my last dose was horrendous, about 10 hrs of GERD, just could not get it under control......

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I have a PMR friend who is active in the Scottish charity who was on methotrexate for some time and found it did help her reduce the pred dose though not get off - but when she tried stopping the mtx she did have a flare. So it was doing something! She switched to leflunomide last year and was able to get off pred in 8 months, she says she felt it "kick in" and felt totally different.

I do remember someone else on the forum who thought the mtx wasn't doing anything - until she tried to stop it! Can't remember who it was though.

If you are finding the side effects untenable - and for me 10 hours of GERD would come under that heading - you need to have a serious discussion with your doctor. How long have you been on mtx?

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I've only taken 4 doses, 10mg/wk. I think the reason I've had so much trouble reducing is because I didn't understand clearly the whole process of what I should have been feeling when reducing. And I do tend to be impatient and anxious. I'm afraid that mtx might be too toxic and add to my problems and I have to quit then if there is any benefit I will just have to go back up on the pred. Anyone else have trouble with gerd after taking mtx?

I'm thinking 2.5mg every 12 days or so, depending on how I'm feeling, if only little niggles, I can reduce. And to be sure of not overdoing!

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Oh no - not that fast!!! I'm sorry to have to disappoint you.

The methotrexate will not replace the pred, at best it will potentiate the effect of the dose you take and mean you get the same effect from a lower dose - so maybe you will be OK at 5mg instead of 7mg (just example figures, impossible to say how it will work for you). You still need to reduce slowly to be sure it is working for you and if you try to go down 2.5mg at a time every 2 weeks you will just end up in trouble with a flare, mtx or not. Another claimed effect of mtx is to reduce the risk of flares while reducing - and some people do experience that benefit.

The studies done with mtx alongside pred suggest that any effect mtx is having will take 2 to 3 months at least to appear and it is only after a year that a significant difference in the amount of pred required can be identified. This is a long term story - from every aspect of PMR. If you reduce slowly, in 1mg steps, sometimes even less, you will often be able to reduce the dose quite low with or without mtx. But you need at least 3 weeks at a new dose to be sure it is still enough. If you rush at things you overshoot what you are looking for, the lowest dose that gives the same result as the starting dose did, and end up with a dose that is too low and allows the inflammation to build up again and you are back where you started.

PMR lasts on average just under 6 years, less than 20% of patients are able to get off pred in under 2 years and it takes an average of about 18 months to get to 5mg. When you rush at it and have a flare - then you have to go to a higher dose and lose all the perceived benefit of that speedy reduction.

If you don't learn anything else with PMR and pred it will be patience. It is an essential component of living well with PMR - and I promise, it is possible.

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I thought 2.5 mg every 2 weeks at a higher dose, 55 mg, would be cautious and slow.... no?

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At that level of dose, yes. But you will fairly quickly get to a level where you'll need to slow down. Never more than 10% of the dose, so 25 mg is the last time you really should use 2.5 as the taper. And eventually you'll find that every two weeks is too often. The lower the slower.....

I reduced from 15 mg to 3 my first year. Then from 3 mg to 1.5 my second. It still astonishes me that it took so long because I seemed to be forever tapering down. Then I had a fairly minor flare and at the end of my third year (think I just passed the "anniversary") I'm at 2.

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Sorry - yes, at that level you probably will get away with it. I hadn't realised you were still at such a high dose. Mea culpa

But as HeronNS says, you will very quickly get to a stage where it is too much. Just be aware - and not in denial if it does happen.

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I've read that folic acid should not be taken on same day as the methotrexate, but my rheumy says to take it everyday, there were various opinions about that. Anyone else taking it everyday?

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In clinical trials they didn't give folic acid on the same day as the mtx to avoid confusion and I imagine that is where most doctors take their lead from. There doesn't appear to be any effect of folic acid on the efficacy of mtx so theoretically taking it every day shouldn't make any difference. But the usual recommended supplementary dose is 5mg, either as a single dose or 5 x 1mg daily, so 7mg is a strange dose to choose! There doesn't seem to be any great value in general for taking more than 5mg per week or one dosing regimen over the other although if someone still has side effects on 5mg it is suggested a single 10mg dose should be tried.

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Just a note of caution when it comes to taking folic acid. If one has a defect in their Mthfr gene it’s imperative to use folate instead of folic acid. Your local lab offers the test. I have the C677t defect but there are actually two and some people get both. It causes many health problems but for me it’s the detox pathway that is not working well. My doc has told me we must avoid folic acid, even when it’s used to enrich flour and bread, etc. I feel that most people that get autoimmune diseases are good candidates for this problem. Just take folate and they also suggest b complex. Check it out .

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Thanks much to all of you for the information. I really appreciate it.

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Still, I wonder if I stop the mtx because of serious side effects after taking it for several weeks, or months, might I experience a flare and the amount of pred need to be increased? That is, IF it was working to help taper my dosage. I am so undecided about methotrexate.

Also my rheumy wants me to start a taper of 2.5 or 5 mg this weekend, but last night and today I began to have several strong niggles and think I need to wait awhile longer. Been at 55 mg for 11 days.

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If you are having niggles you need to speak to your doctor.

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I thought light niggles were ok...... just strong ones you really need to pay attention to. I feel mostly ok, just occasionally will get a strong one, not real painful but definetley gets my attention, just started to happen yesterday...... I have no intention of tapering as long as that happens. Seems to be letting up a bit......

Rheumy went on vacation as of yesterday. I've gotten in touch with her before and was sure she would say "go back up some" when experiencing real aches, but she says "stay put".

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Stay where you are - not reduce. I was assuming you would want to ask/tell her your weren't going to reduce! ;-)

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So far this good day,maybe light niggle earlier, but will wait a couple more days to see how I feel then taper 2.5 mg. Am assuming of course light niggles once in awhile is ok.

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Yes - as long as they don't increase!

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