Does anyone have insights concerning the use of m... - PMRGCAuk

PMRGCAuk
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Does anyone have insights concerning the use of methotrexate along with a 5mg. daily dose of prednisone?

Predfan
Predfan

My doctor prescribed methotrexate in addition to prednisone, but I am not convinced it makes that much difference.

24 Replies
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I am currently taking methotrexate with prednisone. The methotrexate is supposed to lower the infection and your CRP so you can reduce your prednisone faster. When I first started a in April, the methotrexate did lower my CRP to a really good level, over the next 2 months it went back up, so I was switched to injectable methotrexate. I am going for another blood test this week so we will know more at that time. I have fortunately not had any side effects, but I hope someone else can help you with that information. I am currently at 12 mg of prednisone. Hope this information helps you.

PMRpro
PMRproModerator
in reply to Lesyel

That seems to me to be the wrong way round - the CRP is the RESULT of the inflammation that goes on in PMR (it isn't infection as such), it acts as an indicator. What the methotrexate does do is alter the way your body metabolises the pred so that a smaller amount of pred achieves the same result and that is what allows you to get to a lower dose. The studies that have been done in the past gave very variable and inconclusive results and my rheumatologist is absolutely adamant it has no role in PMR. In fact, I understood that the latest thoughts from the British Association of Rheumatologists were that mtx doesn't do what they thought it did. If you get no side effects I suppose it is worth trying - but someone I know with GCA was under pressure from her consultant to take mtx - but by slowing her reduction scheme down to very small steps she got down to under 10mg without it. And I think that is something that really should be tried first before saying you can't reduce. Some people just can't deal with 5 or even 2.5mg drops, 1mg at a time works. I can't do more than 1/2mg - and I can't do that overnight, it takes me a few weeks of alternating old and new doses.

Predfan
Predfan
in reply to PMRpro

Thank you so much for this great explanation of these medications. I hope you are having a comfortable day in spite of our friend, PMR. Smiles

Polywotsit
PolywotsitPMRGCAuk team member
in reply to PMRpro

Well said PMRpro. But honestly I don't know how they can rule MTX out of hand because it has never been properly, systematically tried with PMR. The fact is that there haven't been any real changes in the approach to PMR treatment in the last 50 years, which when you think of the advances that have been made elsewhere, is a bit shocking, don't you think? Some members of the current working party on the diagnosis and management of PMR are quite positive about using MTX in the more recalcitrant cases where patients yo-yo up and down and the overall intake of pred is too high. MTX is now used pretty well routinely in rheumatoid arthritis and the general view is that the risk of side-effects is not too great when compared with the benefits of using it. I've just posted a new poll to see how widespread experience is of MTX on this forum.

PMRpro
PMRproModerator
in reply to Polywotsit

That is possibly true Kate - but there was never any particularly solid evidence SUPPORTING its use in PMR either. There were patients for whom it did (possibly) achieve a reduction in total pred dosage - as well as others for whom the difference was so minimal that the inherent risks of MTX made it all a bit borderline. It is a DMARD - it changes the joint damage in RA, there is solid justification for THAT. It is possible to look at PMR as a form of RA where there is no joint damage - except PMR isn't RA. There are also plenty of RA patients for whom it doesn't work as well the patients for whom it slows/stops the joint damage - but in order to gain that benefit they have to "give up" the best part of 2 days a week to recover from the MTX hangover. There are many who take it on Friday night, have no weekend as a result, so they can return to work on Monday.

That's one thing if you are young and have to work - it is another for elderly patients for whom the longterm risk of pred MAY be some loss in bone density. It is of course anecdotal - but I know of several patients who were pushed to either take MTX or alendronic acid because of that risk. They took neither, reduced their pred VERY slowly and have not only achieved very low or no pred but have also had no bone density problems.

Never mind messing about with adding in other drugs like MTX, azothioprine and such - that is somewhat pointless before they have identified a decent pred reduction scheme in the first place. There are enough opinion leaders who have realised that fast reductions are a problem, leading to flares: the most common cause of a flare is reducing the pred too far or too fast and yo-yoing the dose makes every subsequent attempt at reduction that bit more difficult. And every time there is a flare you put the patient back to a notably higher dose - what does that do to the total load? But in the UK we are still seeing both GPs and rheumys who want to reduce pred they way they do with any other taper - often 5mg at a time. If really enlightened it is 2.5mg at a time. That may work for some - but I would suggest that for a large proportion it leads to problems. Opinion leaders cite a maximum 10% rule - and if your starting dose for PMR is 15mg that means NEVER over 1.5mg at a time - so using 1mg drops from the outset is not unreasonable. Too many think reduction should be aiming for zero from the outset - as opposed to the lowest dose that controls symptoms. There is a subtle difference.

Personally, I would like to see a decent trial where the starting dose is 15mg (which achieves good remission in most patients within a month or so, even 12.5mg was shown to be adequate in 75% of patients in a study in Italy) until the symptoms are well controlled and the reduction is then taken very slowly but steadily, 1mg at a time at the most, down to 10mg and then a resting period there. One group in the UK suggests for a year. Then the reduction could continue at 1mg at a time to 8mg and then the reductions should be in 1/2mg steps. I would lay odds that a majority of patients would get to a dose below 7mg/day for maintenance and quite a few would head straight for zero at such a slow pace. Doing it that way avoids the "pred reduction" discomfort which is so similar to PMR pain but also allows very quick identification of the "lowest dose that controls symptoms" - or perhaps more accurately, the dose that is just too low.

Once that ideal reduction scheme has been identified - then you can try other things for the patients who struggle to get down to lower pred doses.

However, I suspect that the patients for whom MTX and co work are the patients who didn't have plain and simple PMR in the first place, in some cases they may have been mis-dx'd LORA.

And above all Kate: the different groups need to put their egos to one side. If they all got together instead of poo-pooing each other's ideas they would get a lot further - and that would be to our (the patients') benefit. But what do I know - I only have PMR.

Hidden
Hidden
in reply to Polywotsit

MTX is the gold standard treatment for RA as the thinking is it stops any permanent damage to the joints from happening.

MTX and pred are also first line treatment for some variants of vasculitis including takayasu's arterits which many think is a close relative of GCA.

I have been taking MTX for 8 weeks ( I don't have a definitive dagnosis of PMR/GCA although I do have most of the symptoms) along with pred and am starting to feel that I have a bit more energy. Like any drug it has side effects but my bloods are ok and I have no nausea etc. Saying that I have had no pred side effects, it is a very individual thing.

I wonder if part of the problem with developing new treatments for PMR is the way it is managed by mainly GP's. I don't know if RCT double blind trials are done in primary care. The treatment for the vasculitidies have come a long way recently with the advent of biological drugs. They are also increasingly being managed in multi disciplinary specialist clinics in conjunction with local physicians.

Is the way forward to create specialist clinics for the management of PMR and GCA. Creating large cohorts of patients would certainly make researching new treatments easier. Surgeons need to carry out a certain number of operations in a year to maintain competence/ skills, why should medical problems be any different?

Whittlesey
Whittlesey
in reply to Hidden

Agreed.

Hi Kate, copying you on my reply to predfan. am in agreement with your points, here. Believe that anything that may be "steroid sparing" may be a help.

And am in agreement that not much research has been done in the past 50 years and these diseases need to be looked at, especially with the younger aged people, now being diagnosed with them. Thanks for your answer on this. Whittlesey

" I used from (not sure of how the dosage is described, here, ) 10 mgs. down to 3mgs of methetextrate for about 5 - 6 months and for me, it helped the "disease" the inflammation and the faintness and dizziness. It has side effects. I had it by muscular injection once a week. The first day felt very drained, a little dizzy. second day, more ok, third day, etc. I believe it hit the inflammation. We tapered it and I wanted to be off of it. I don't like having strong drugs in my body. Methetextrate is an anti cancer drug. The one people lose their hair with and are very exhausted when they use it. It doesn't work, I understand for all GCA/PMR sufferers. But it did for me. They gave me folic acid and I didn't lose any more hair than a person usually does as they move into their sixties.

Would say, it is worth trying and it may help the overall situation (pred reducing, the disease recurring, and for me the faintness, dizziness - it helped that.)

The research calls it a "steroid sparing agent", which means the pred can be reduced. I believe it worked that way for me. Research also says it doesn't work for everyone.

hope you feel better. all my best, Whittlesey "

Predfan
Predfan
in reply to Lesyel

Thank you so much for your thoughts. I appreciate learning about how other folks are coping with PMR.

I believe methotrexate is now being used for arthritis and there is information being published. How it works with prednisilone I have no idea. You might want to research its current use with arthritis.

Good luck

PMRpro
PMRproModerator
in reply to tourdefrance

Mtx has been used for rheumatoid arthritis since the 1980s - it isn't a new concept and has been used for cancer since the 1950s so is a drug they know a lot about and this makes them confident in using it. In RA it is used in lower doses than for cancer treatment and is usually the first go-to drug when a DMARD is needed (Disease Modifying Anti Rheumatic Drug), in the UK at least it is the standard everything else is measured against.

Celtic
CelticPMRGCAuk volunteer

Hello Predfan

I haven't got any personal experience of taking Methotrexate but am aware that it is commonly prescribed in rheumatoid arthritis. I know people who have have been prescribed it as a steroid-sparing drug alongside Pred for PMR but only one or two have experienced any benefit. I'm assuming that you have reduced from a higher dose of Pred down to 5mg and MTX is being added because you are experiencing difficulties in reducing further? If that is the case, then it's possible that you have either been reducing too fast and/or in too large amounts at a time. If so, then you might find it much easier to return back up the dose slightly for a while and then on return to 5mg stay there for a good few months - my rheumy kept me there for 5-6 months following a flare. It proved successful and I then managed to reduce and eventually get off Pred, BUT my reductions were in just 0.5mg steps, slowly tapering to each new dose over a period of seven weeks by taking the new dose one day of the first week, two days of the second week, etc.

Predfan
Predfan
in reply to Celtic

Thank you so much for your insights. Yes, my doc was trying to get me off of pred, but symptoms returned. Now that I am back on prednisone, I wondered if meth was truly needed. I seem to experience a couple of days of added fatigue after the injection. Thank you again for writing.

PMRpro
PMRproModerator
in reply to Predfan

Many doctors are too enthusiastic to get their patient off pred - it didn't cure the PMR, it allows you to manage the symptoms until the underlying autoimmune process decides to go into remission. That means that the reduction is looking for the lowest dose that controls your symptoms AT THE MOMENT to keep the total pred load over your entire illness as low as possible. If the autoimmune activity hasn't gone - no or too little pred equals return of symptoms. 5mg is well under the amount our bodies produce normally and many doctors are quite relaxed once the patient gets there - but one thing is certain, it is below this you need to go very slowly. Many experts say reductions should be 10% of the current dose at the most - below 5mg that means never more than 1/2mg at a time. By the time you get to 3mg, 1mg would be a 33% drop! Much of the problem at the low doses is also that the body has got used to the pred over years and wonders what has happened when it disappears - and going cold turkey doesn't work!

Hi - a paper on Patient.co aimed at medical people is quite an interesting read and suggests meth is not helpful to pm.

Predfan
Predfan
in reply to soton60p

Thank you for your info on the paper. I will try to find it and read it.

Hi - I was put on Meth when diagonosed with RA four years ago. Changed to injection three years ago. Diagnosed with GCA 16 months ago, put on 70mg steroids and dropped Meth. Down to 20mg steroids was put on 20ml Meth again, which made me feel better. Now down to 14/15 mg steroids - it's a long job, but I wouldn't be without Meth. - I have never identified any side effects from it - perhaps I'm lucky!

Predfan
Predfan
in reply to venezia1

Thank you so much for responding. I am glad meth doesn't seem to have side effects for you. The only thing I notice is a couple days of extra fatigue after my injection. But, not sure the tiredness is caused by methotrexate.

Whittlesey
Whittlesey
in reply to venezia1

Hi, it does seem to help. I had some exhaustion on the first day of the injection (weekly) which lessened with every day. Tapered it and am not taking it now. But believed it helped the inflammation. am in agreement. best, Whittlesey

I'm on Meths to ultimately replace steroid (which I have injected), as the steroid is not good for me because I have some osteoporosis. Meths is supposed to do a similar thing to Steroid, but without the bone issues. However I was OK on 12.5mg of meths, but my Rheumy asked me to go up to 15mg. Three weeks in on the new dose and I'm having awful issues with dizziness and cannot find words or process info well so am rather scared to drive now. I'm going down on the steroid OK,even when on the old dose of meths, - am now down to 60mls jab to last two months if I can do it.

I believe Meths is the drug of choice for Rheumatic conditions such as RA. I find it does give me more ability to move (It's job does not include pain relief which is what steroid was good for) , but the added dose has not improved movement at all. I'm going back to the old dose!!

Having had PMR/GCA for over 2 yrs I have been on Methotrexate since Nov last yr together with prednisolone. Now on 10mg preds with 15mg Methotrexate following a flare in Aug. I haven't had any extra problems using the Metho. & I do feel better this week! Reducing steroids by1mg from last Friday. Hope everyone can have a better week!

Hi Optimist-ok, I am taking 20 mg's of methotextrate by muscular injection every week (one time each week). I have been taking this much for about one year. I believe, in my case, with GCA, when I have a flare, the flare is better controlled and over sooner with the methotextrate. I don't have to take as much of the medrol. The side effects of methotextrate seem to be less. I am taking folic acid everyday. I have read studies that claim that methotextrate does seem to help to keep the medrol low, unless you have a flair. wishing you all the best, Whittlesey

Hi Predfan, I used from (not sure of how the dosage is described, here, ) 10 mgs. down to 3mgs of methetextrate for about 5 - 6 months and for me, it helped the "disease" the inflammation and the faintness and dizziness. It has side effects. I had it by muscular injection once a week. The first day felt very drained, a little dizzy. second day, more ok, third day, etc. I believe it hit the inflammation. We tapered it and I wanted to be off of it. I don't like having strong drugs in my body. Methetextrate is an anti cancer drug. The one people lose their hair with and are very exhausted when they use it. It doesn't work, I understand for all GCA/PMR sufferers. But it did for me. They gave me folic acid and I didn't lose any more hair than a person usually does as they move into their sixties.

Would say, it is worth trying and it may help the overall situation (pred reducing, the disease recurring, and for me the faintness, dizziness - it helped that.)

The research call it a "steroid sparing agent", which means the pred can be reduced. I believe it worked that way for me. Research also says it doesn't work for everyone.

hope you feel better. all my best, Whittlesey NYC U.S.

Hi Predfan, I have biopsy proven GCA (2012) and am now down to 4mgs of medrol a day. For about 4 months, I took weekly injections of methotextrate. The first day I didn't feel too well, weak and nauseous. But every day got better and the inflammation did seem to decrease. Very few headaches and I could see the swelling reduce in my ankles, thigh and eyes. I reduced pred at that time from about 6mgs a day to the 4 mgs. I think the methotextrate helped me to do that. I understand that it is anti cancer drug with serious side effects. With that and the pred, we slowly reduced the metohtextrate in the injections and I have finished with that course of it. I believe it was helpful and would take it again if I have a flare.

Hope you feel better, best, Whittlesey