I am having a rheumatology specialist nurse video appointment this Wednesday to discuss me starting methotrexate .
My symptoms are improved , I am currently on 13.75mg prednisolone ( having reduced from 15mg on 1st November) and my exercise tolerance has increased since initial diagnosis , when I could hardly move . Why would they want to start methotrexate if there are no reasons to do so? I am obviously quite reluctant to start on a drug with so many side effects.
Could I just stay on prednisolone and see how the taper goes ?
All advice gratefully welcomed , thank you
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Bluepin
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Would have thought introducing MTX is a bit premature ….If I were you I’d be saying I’d prefer to stay on Pred for the time being see how things go. And maybe consider MTX in future if you have difficulty in reducing on Pred alone.
I’d want them to tell me why Methotrexate is right in MY case rather than it generally a good idea or “that’s the way we like to do it” or a vague, “there might be problems from Pred”. I never understand why Metho seems to be seen as relatively benign compared to the evil Pred. They have their own problems. It appears that it isn’t is if you have been struggling to get the dose down and keep having to go up for relapses so a steroid sparer is needed. They may have a good reason but they need to tell you so you can make the decision, which I think sometimes doctors forget. You may also want to be wary of the same size reduction as you go lower. If you have a rigid schedule that you don’t want to question you might want to ask if you can say, instead of dropping 2mg 4 weeks later that you do 1mg after two weeks and another 1mg for the next two weeks. I found it smoothed out withdrawal at the very least and it can take two weeks to show if the dose is too low.
Most of us do stay on just pred and many are able to taper it off without severe problems. Others get stuck above 10mg (some rheumies get worried when people get stuck at 5mg).
However, some rheumies are fixated on the concept that pred is bad and methotrexate is a far better drug although there is not yet any definitive evidence that it works for PMR, it is a drug used mainly in inflammatory arthritis which is a totally different disease. Even Prof Sarah Mackie, who does support its use and is just starting a clinical trial, admits it works brilliantly for some patients but not by any means all. The trouble is, you have to try to find out and there is absolutely no point struggling with it if it doesn't suit you - a lot of patients have severe or unpleasant adverse effects.
If it were me I would want to continue as I was - and see if I could manage without. I tried MTX and within a month couldn't function for the fatigue it caused - and my hair was falling out in clumps! Had I stuck with it longer it might have let me reduce pred - but I couldn't face living like that, feeling worse than I had with untreated PMR! That isn't the point.
A personal story is the best I can offer .. I have read DorsetLady often & respect her. Here's my tale. I have been up & down the Pred dosage ladder for 3 yrs and I resisted the Methotrexate for one yr. Then as I pared down Pred for 4th time to below 3mg/da, my pain was excruciating. I asked for MTX. I wanted off Pred & MTX facilitates that. Big difference, less pain. Now 5mg Pred & 17mg MTX, no pain .. NO PAIN. Besides, MTX is non steroidal. It's highly effective for rheumatoid arthritis too. (but of course, I'd like to be off it all)
There is no guarantee it will get you off pred - and you will not necessarily get under 3mg - I hope you do.
The reason you were flaring at 3mg was because that was the dose you were aiming for: the lowest effective dose. You aren't aiming relentlessly for zero - you will get there eventually but how long is a piece of string ...
When tapering you are aiming for lowest dose that controls your symptoms -and not reducing come what may. In other words ignoring any symptoms you may have.
Unfortunately some patients are given a tapering plan which doesn’t allow for any deviation -because the doctor doesn’t understand the vagaries of our illnesses.
Hopefully you will reach zero eventually, but only when your illness has gone remission. .
Ok DorsetLady I get that. I understand it. So 5mg appears to be my favoured dosage, that is, with the help of MTX ... And yes I am concerned that my Dr.Rheumy will decreased Pred, and the customary thing to do ... they're concerned about damage to organs etc etc ... I appreciate it... but I in my 81st year .. let me be pain free
There are doctors (and patients) who think you take a dose of pred that cures the inflammation and you taper off to zero, irrespective of return of symptoms. You are looking for a lower dose that is just enough to manage the daily batch of inflammation that is created ongoing until the underlying autoimmune disorder that causes it has burned out and gone into remission. There is no fixed time for that it may be a year, two years - or 10. You can't predict how long - so you cannot have a fixed reduction regimen.
I read and hear what you are saying. Blood test results say my inflammation is gone, so it would make sense to reduce Pred ... I have simply had bad results from paring down on 4 occasions, serious lasting flares ... hence the MTX was prescribed to help. All I can say, is so far so good, but I'm still on 5mg Pred ... worried what will happen when Rheumy wants me to decrease.
The inflammation markers SHOULD be in normal range IF you are on enough pred to manage it. And yes, then you taper the dose slowly to find the lowest effective dose. But there comes a point where the pred is no longer enough to manage the daily amount of new inflammation - and symptoms return. However - the markers frequently lag behind that and so symptoms should always be king, they aren't infallible, just guides if you are lucky. We talk about flares of symptoms - not the same as flares in disease activity which can be long lasting, but when it coincides with a reduction in dose it is almost always because the dose is too low, not that the activity is greater. It was always there ongoing but before there was enough pred to mop it up, now there isn't.
I was offered Methotrexate when i was first diagnised 18 months ago, along with Pred (starting dose of 20 mg). Then they found I had a low platelet count and possible bone marrow problems, so I never started the Methotrexate. I'm doing fine on 5 mg Pred, no pain or other symptoms. I'm planning to reduce down to 4.5 mg Pred when my cataract ops are over (one eye done so far, all well). and then by slow taper .5 mg every couple of months. I still have a low platelet count, but it doesn't seem to be causing any problems that I'm aware of.
I have never been on methotrexate but have been taking prednisone for a very long time! I reduced slowly as advised over the years and eventually got down to 2mg daily. Recently I’ve had other issues and my consultant is keen for me to come off steroids altogether. I’ve managed to reduce to 1mg daily and so my aim is nearly reached. It is a long , tedious and at times frustrating journey but I wish you good luck in the time ahead . I see you have had correspondence with Dorset Lady, she has helped and given me sound advice over the years.
My consultant wanted to start me on Methotrexate (and at a high dosage) but I declined because she couldn’t reassure me that I wouldn’t end up taking both Methotrexate and Prednisolone at the same time and I hadn’t yet had any problems with tapering. I decided to see how far I got with tapering. Disturbingly, both she and the rheumatology nurse talked about me flaring twice. I don’t know where they got this information from because as far as I am concerned I haven’t had any flares (yet).
Methotrexate is a tough drug with risks and potential unpleasant and severe side effects and it would involve changes to my lifestyle which I’m not prepared to adopt unless there’s no other reasonable option. These all seem to be rather downplayed by the doctors, and the pharmacist at my surgery.
I won’t say that I will never take Methotrexate but the suggestion that I do so - within weeks of starting Prednisolone and having a very good response - felt very premature. If I struggle to get to an appropriately low dose of Prednisolone then I’ll reconsider.
The adrenal insufficiency problem will kick in whether or not I am on Methotrexate but the rheumatologists conveniently seem to ignore this.
I’ve just tapered down to 6mg of Prednisolone today. I’m feeling quite nervous because I’m into or approaching adrenal insufficiency territory. I’ve had a busy day today and will try to have a quiet few days from tomorrow.
PMR pain hit me in the typical spots, shoulders, hips, thighs, knees thru first 2 years, then last yr I develop swollen hands and so much pain I could not make a first. X-rays and scans of hands resulted in the RA diagnosis, telling me it was bone on bone. It wasn't until my was on MTX & it was increased from 12mg to 17mg per wk that suddenly pain and and swelling lessened and disappeared. So yes, still on 5mg Pred/da and 17mg MTX wkly ... but Rheumatology app't later this month ... I will see what the next plan is.
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