Hi, I have been on Prednisolone for the past two years for PMR and after various flares, ups and downs, am currently tapering and am at 9.5 mg daily, decreasing 0.5 mg every two weeks.
At a routine drug review at the surgery this week the pharmacist said she was surprised I had not been put on Methotrexate. She said if I was put on this it would be instead of the steroids. With all the trouble of tapering the Pred I can’t imagine just dropping it completely. She seemed to think I have been on steroids too long and should come off them.
I would be grateful to hear other people’s experience with Methotrexate and any advice you may have.
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Sukian
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Hello there, the pharmacist isn’t quite correct. With PMR you don’t just swap in the Methotrexate and swap out the Pred. You reduce the Pred hopefully a bit more quickly with Methotrexate IF it works for you and it covers your particular inflammation. It doesn’t work for everyone. However, once you get under 8mg you start to encounter another issue that is nothing to do with PMR. That is trying to get a return of your adrenal function that has been turned off whilst Pred has been so high the adrenals don’t have to work. If yours are slow to come back, and they often are, the only answer is patience and a very slow taper. The pharmacist should know that just stopping Pred could cause an adrenal crisis, so perhaps they didn’t mean just dropping the Pred suddenly.
I read through your old posts and it does look like you have tried to reduce faster than your PMR is ready throughout. You’ve had to keep going back up and then dropping down quite quickly again. Even now 0.5mg every 2 weeks is not allowing your body to say whether it is enough right now. It can take a couple of weeks for inflammation to start building up again, but you’re already off on the next 0.5mg reduction. If you overshoot, you are faced with bumping the dose up yet again but possibly to higher than need to.
As SnazzyD has said you seem to have struggled over the last 9 months around to 10mg/ 9mg dose…. And would agree with her that maybe you have tried to reduce too quickly - have you had a particularly stressful time during that period which has made it all too difficult?
As said, you won’t drop Pred for MTX, but the idea is that the latter should help you reduce the former more easily… but it’s not a cure all for everyone, but you won’t know until you try.
But everyone needs to remember you have had PMR less than 2 years, so maybe your is the stubborn kind!
0.5mg every fortnight seems a bit hasty. Perhaps if you try 0.5mg reduction every month things may go better. It is really up to your doctor if you have Methotrexate or not.
I’ve been on MTX for 2 years now , currently on 12.5mg injection once a week , it hasn’t helped me reduce pred even half a mg , I believe my adrenal glands aren’t able to function currently anymore , on 4.5mg of pred 9 years in . I also have a form of RA so need the MTX now to look after my joints .
I have taken 15mg of mtx orally on a weekly basis over a period of 1y in the past, and have just restarted it. I have mild-moderate brain fog and sleep issues for around 48hrs after taking, but then back to normal. However my 80yr old father in law has been taking 15mg mtx along side steroids for over 10yrs now and has had no side effects from the mtx at all, including clean blood monitoring results every month. It seems to be quite random how it impacts people, but 15mg is typically reasonably well tolerated by the majority of people. I'm sure they would monitor you very closely in the first several weeks if you were to take it.
"She said if I was put on this it would be instead of the steroids"
She needs to brush up on the use of MTX and stop providing incorrect information.
MTX works very well to reduce the dose of pred for a small proportion of PMR patients - in a very few it gets them off pred altogether and for more it seems to prevent flares. But that does NOT apply to all patients and you certainly don't take MTX and stop the pred. You take the MTX and then continue tapering the pred as before and hope it works better. As I say, for a small proportion of patients it works brilliantly, the only way to find out if you are one is to try. However, you must be under a rheumatologist - if you aren't already, the GP can't initiate it and you will have to wait for a specialist referral.
If you are repeatedly struggling at a similar dose that is your body telling you that is what you need at present. You seem to have got into a yoyo pattern with the pred dose and once that happens you get into a difficult situation with it becoming ever more difficult to manage the inflammation. Down to 10mg 1mg per month is reasonably slow, below it may be too fast for some. Since you are struggling, you need to slow down further,
As for having been on pred "too long" - you need pred for as long as you need it. If the underlying cause of the PMR symptoms is still active, you will need pred. MTX might help you reduce the dose but it has its own adverse effects - nausea, hair loss which can be heavy, fatigue and a load of others. After a month on it I could barely function due to the fatigue and I stopped. But I had also lost a load of hair, gained weight as I was ravenously hungry which I had never been with pred alone, and I'm pretty sure my atrial fibrillation was worse - the brady/tachy syndrome that led to me needing a pacemaker started then.
But the pharmacist needs to learn where their responsibility ends and their opinions are out of place. She spent a long time learning a lot about drugs - but she didn't study medicine. PMR does NOT just last 2 years, whatever a lot of doctors think, so it is not very likely you would be off pred by now - maybe a third to a half manage that. That leaves a lot who need pred much longer.
Thank you for your comprehensive reply to me. You have always given me such good advice. I will definitely avoid MTX particularly as you mention hair loss. I have already lost so much of mine since being on Pred.
I’m on Methotrexate for GCA. I started on 20mg but my liver function went haywire so I’ve had to drop to 7.5mg. My liver function is stable at this dose. My rheumatologist put me on this to try to enable me to come off Prednisolone as I had awful side effects to higher doses. That’s the only side effect I’ve had.
I’ve been on MTX for 2 years, but only because I was stuck at 9mg pred for almost 2 years. It was never the intent for me to simply stop pred altogether and take MTX as a replacement. Rather it is meant to help me lower my pred dose (which it has). I haven’t had any side effects (except minor hair shedding), but I was sick for 4 months last winter I suspect from being so immunosuppressed from being on both pred and MTX. This stalled my tapering efforts so I lowered my MTX dose.
When I was stuck at 9mg pred I tried 5 times to taper .5mg over 6 weeks….a 2-week taper would not have worked. Additionally I had never got stuck in a yo-yo pattern either.
It would likely be advantageous for you to settle in at a dose that addresses your inflammation. Then begin to lower .5mg over a longer tapering time.
Hi Sukian, I was on pred for over 3 years and only managed to get off it with the help of MTX. It still took me nearly a year of slow tapering of 1mg a month to finally quit pred but I am so glad to be off it.
I have been fine on MTX, it does have its side effects too like anything else, but mine have been mild, and you do need regular blood tests to check everything is ok.
You will need to be seen by a rheumatologist and they may recommend a different DMARD, I was originally prescribed sulfasalazine but it turned out I was allergic, so was put on MTX.
You can only try and see how it goes, if it gets you off the pred it’s well worth it imo. Good luck!
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