Trying to keep this from being too long. Initially diagnosed with Enthesitis and given 20mg of Pred. to reduce to 15mg after 2 weeks, then 10mg, then 5mg. The reduction from 15g to 10mg was too much and all symptoms came back. That was 2 years ago - I have been up and down between 5mg and 12mg for about 18 months. A different Rhuemy later diagnosed PolyM. My normal Rhuemy seems desperate for me to get off of Pred and we tried Salphsalazine and then Azathioprine, both of which sent my Liver Functions way off the scale. I was started on Methx at the end of Dec - so now 15 weeks in and I haven't noticed any benefit. Liver functions are fine, but dropping my Pred from 5mg to 4mg (I usually only drop by .5mg over 3-4 weeks - and split the dose) has put me back in much discomfort. I was lead to believe the Methx would help wean me off the Pred. Anytime I take a higher dose of Pred (say 6 or 7mg) I notice an immediate improvement. Why is my Rhuemy so desperate to get me off Pred when it is keeping me comfortable? I am thinking of stopping Methx as I just can't see that it is doing anything other than lowering my immune system, which, working in a school, isn't ideal! Am I being too impatient? Should I give it longer? Any thoughts and advice most welcome. (For info, I am in the UK) Thank you.
When will Methotrexate work for me?: Trying to keep... - NRAS
When will Methotrexate work for me?
I’m sorry that you haven’t seen any improvement yet from mtx, it’s one of those drugs that can take 3 months or more to start to work. I don’t know anything about Polym or enthesitis so I can’t be much help but there is a HealthUnlocked group for PMR where you might find more answers to your questions, I can’t put a link but if you search in communities it’s PMRGCAuk. I hope you get some relief soon 🤗
Sorry to hear you’re having problems. I can’t comment much on PMR beyond saying I know steroids are the mainstay of treatment, but I do know a bit about corticosteroids generally due to my daughter having a life-limiting lung condition where they’re used quite often, including long term, particularly prior to transplant. I’ve also taken them as part of my RD treatment.
Although prolonged steroid treatment is the norm for PMR, the main reason your doctor will be pushing to get you off the steroids is most likely that even when required, the risks associated with long term steroid use can be serious and the incidence of problems is quite high even at relatively low doses of 10mg or less. Long term use is usually defined as 3 months or more, and the kinds of problems potentially caused by corticosteroids include serious adrenal problems and physiological steroid dependence, (which is why tapering down is required for courses lasting more than 3 weeks), steroid induced diabetes that can sometimes turn into permanent type 2 diabetes even with steroid cessation, glaucoma, cataracts, osteoporosis, and all the other relatively minor things like weight gain, and mood changes. The other major risk with prolonged steroid use is that the risk of severe infection is much higher: my understanding is that long term steroids even at low doses have a much more significant impact on the immune system than drugs like mtx do. For example, use of any single, traditional DMARD on its own, like mtx, wouldn’t make you CEV in relation to covid, but taking any dose of steroids for more than 3 weeks immediately puts you on the shielding list due to the resultant degree of immunosuppression. Where you’ve been on them for a long time, people can also suffer both physical and psychological withdrawals in trying to wean down and come off, which makes it all the more tricky, particularly if there’s overlap between recognised withdrawal symptoms and those of the underlying disease the steroids are being used to treat.
The overriding premise for steroids, even where very long term use is appropriate, is to always give the smallest dose that’s effective to manage disease, for the shortest period of time you possibly can. For all pred is a brilliant drug, how powerful it is is also what makes it quite a risky one for long term use. Which is why every doctor will try and get their patients off steroids wherever they possibly can, as quickly as they reasonably can.
Thank you for taking the time to write such a comprehensive and informative reply. I was reading a feed yesterday when so many were in praise of Pred and saying they would stay on a low dose forever, I began to wonder why I was putting myself through such discomfort trying to get off of it - but you have really helped me to understand this more. I know COVID has screwed up so much in the NHS, but I do feel cross that I was put on Methx 15 weeks ago and no-one has made contact to follow up how I am doing. I will start the arduous task of trying to contract them after the Easter Break - but last time I left a message, no-one called me back. Thanks again. Best Wishes.
Oh, it’s an amazing drug when you’re really suffering. There’s no denying it’s worth its weight in gold, and I doubt you’d find many people here that would argue with that, particularly if it doesn’t effect their sleep or give them other side effects. I took it for 4 months straight whilst waiting for mtx to kick in for my arthritis (it never actually did, and although it’s quite often probably different for PMR, they added in a second med which is ultimately what got me off the pred in the end), but it always has to be balanced: the benefits of taking it have to outweigh the possible, quite serious consequences. I don’t really get any side effects from pred, but I don’t like how it makes me feel, so even though it helps massively when flaring, for me it’s a necessary evil that I can’t wait to stop as soon as humanly possible. If all someone gets is benefit from it, I can easily see why a doctor trying to get them off it would be annoying, but it really is for all the right reasons. It is necessary.
Covid has a lot to answer for, but not everything. It can become a convenient excuse. Have you got an email address for a rheum nurse or anything similar? I find phoning the team I’m under to often be an exercise in frustration, but email tends to work a bit better (the cynic in me says probably because there’s a paper trail if a patient complains!). If you still don’t get any joy, the other option would be to phone the secretary of the consultant you’re under. When all else fails, going down that route has often got me results with a variety of specialties. Just explain what’s happened, that you aren’t getting responses, and ask them to either speak to the consultant on your behalf, or for them to phone you.
Thank you again Charlie - such great wisdom and advice.
You’ve given it 15 weeks already, that’s pretty much the threshold when you’re supposed to know by (although they like to get you to 6 months on MTX in my experience). MTX certainly doesn’t work for everyone.
Please do not stop the MTX without consulting with your rheumy, though. Get in touch with your team and explain where you’re at. They might suggest tweaks to the dosage or add something alongside the MTX.
Your rheumy has your long term interests at heart by getting you off the pred - for all the reasons Charlie has listed. It’s a short term sticking plaster really.
Hope you find a long term solution that works for you soon x
Thank you for taking the time to reply LoneEra - I will try to make contact with my Rhuemy Team after Easter. They are NOT easy to get hold of. I know COVID has screwed up so much in the NHS, but I do feel cross that they haven't contacted me to follow up on this new (to me) drug, even through my last blood test showed raised inflammation markers again. Best Wishes.
If you have no luck getting through to your rheumatology team do give NRAS a call as we may have a different way of contacting them on your behalf. (can't promise) but we can see if we know any of the health professionals at your unit. After 15 weeks on mtx you'd really would have expected to see an improvement but of course that is very dependent on the dosage? Also is it oral or injectable MTX that too can make a significant difference. Our helpline is 0800 298 7650.
That you so much Clare. I have sent an email today to my team with a blood result attached showing elevated inflammation markers as soon as I dropped from 5mg Pred to 4mg Pred. If I haven't heard from them in a couple of days I will take you up on your lovely offer - thank you.
I am on 10mg tablets, obviously once a week. (the Rheumy Nurse says Monday for Methotrexate and Friday for Folic Acid - a good way to remember).
Entirely agree with CharlieG about steroids, devilish things and can be really bad news long term. And much more of an issue re your immunity than Methotrexate. So all sensible doctors will want to try to find alternatives if they can. What dose of Methotrexate are you on?
How has your diagnosis of PMR been confirmed? As seems to me that the doctors need to be sure what you have to be able to guide your treatment properly. If it is PMR then few alternatives to steroids.
Thank you for replying. In a letter from the 'visiting' Rhuemy to my GP, she put PMR? - so I am not sure if the question mark means it is a positive diagnosis or not!
Probably not 100% certain then... you need to keep pushing to get some certainty so I hope you manage to get hold of your rheumy team soon.
I don’t know much about the conditions you have,I have RA and was on prednisolone for 2 years started at 15mg then tapered down i kept going up and down with dosage then i was on 5 mg for about a year then slowly reduced until off of them in 2016 .I was on methotrexate injections also started on 15mg then increased to 20mg gradually reduced to 12.5 . I have just been reduced further to 10mg as touch wood all is fine.10mg which I understand you are on is according to my rheumy a very low dose,maybe you could suggestupping doseage of methotrexate to enable to come off the prednisolone which I agree is not the best re long term.I personally had no real side effects with either drug apart from the occasional blah feeling withthe methotrexate which for me has been brilliant.good luck hope you get it sorted
Thank you for replying. After 2 years of suffering and feeling rather alone in all this, it is so wonderful to have found this forum and find other people that have gone through, and are going through, similar experiences. I did wonder if the Methotrexate dose may be a bit low. I have emailed the Rhuemy today, so I hope I don't have to wait too long for a response.
Well Done for getting off of Pred. I have been slavishly following my Rhuemy's advice to reduce my dose every 3 weeks, but it is now clear to me that I need to listen to my body more and only reduce when I am totally comfortable with a dose - and, only reduce by .5, gradually over at least a week, on alternate days. Thanks again and best wishes.
Hi Prof99
I wish you the best of luck with your meds and finding something anything that will ease your pain. I was on 10mg Mtx for a year and found it didn’t really help maybe the dose wasn’t high enough .
At the moment iam taking prednisone 10mg tried to cut down but no luck as the pain just came flooding back .
As the years have come and gone iam now on 10mg prednisone ,sulfasalazine, plaquenil,went onto Arava but the side effects weren’t good now on Rinvoq which is helping quite a bit .
Wishing you well and hope you find something to help.
Thank you for taking the time to reply. You certainly are on a Cocktail of drugs, you poor thing. I am glad that Rinvoq is working for you - that is not one that has ever been mentioned to me.I have found splitting my daily dose and reducing Pred by just .5mg over 1-2 weeks smooths the reduction. So when I was on 10mg I would have taken one day of 9.5 then 2 of 10mg and do that for a week, then do a second week of alternating 9.5mg and 10g. Of course .5mg of 10mg and .5mg of 5mg is a bigger % drop, so I find it gets harder with each drop as I get lower and lower. As I said to 'Gladjack' in an earlier message, I had been slavishly following my Rhuemy's advice to reduce my dose every 3 weeks, but it is now clear to me that I need to listen to my body more and only reduce when I am totally comfortable with a dose.
It sounds as though you may well have tried many tactics like that. Best Wishes
Methotrexate not working
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Methotrexate Increase
3 weeks into Methotrexate 
Methotrexate split dosage 
