Hi, new here. I've had a diagnosis of polymyalgia rheumatica (PMR) for five years and have recently weaned nearly to 0 prednisone. This was going well until I about six weeks ago and then I started to develop symptoms of pain in various joints, starting with a foot that became quite swollen, and a shoulder wich doesn't trouble me unless I lie on that side. Now one knee in particular is extremely painful, I suspect partly as a result of unconsciously favouring that leg because of the bad foot... and so it goes. None of this feels like PMR but the bad knee feels like it's on fire.
Because the pain is in joints I could I suppose put it down to osteoarthritis, which I've had for many years, and which had not really progressed much or troubled me significantly. However I do know that people with PMR sometimes are rediagnosed with RA later on, so I wonder if anyone can help me sort out what symptoms I should look for? I should add the troublesome knee has a swelling, seems to be the bone, the top of the tibia, which in itself is not painful.
All this has been developing during covid lockdown and I do have a phone call scheduled from my doctor on Monday so would like to have as much information as possible so the "visit" can be as productive as can be.
Thanks. And hope all you reading this are keeping well.
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HeronNS
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Hi and welcome to the best community your story is a mirror image of mine hadn’t been feeling well for over 8months countless trips to doctors told it was stress then depression then was my work till one morning started to get very blurry vision trip to doctors straight to hospital told GCA PMR straight on to 12 steroids a day felt like superman slowly started decreasing by 2 every 2weeks week before Xmas hospital appointment with ra department thinking was about to be told final pattern to got off steroids bombshell told you have ra what they told me that day didn’t even register but after it sunk in let’s deal with it so on to mtx and off steroids it’s been tough mtx takes around 12 weeks to get full benefits I’ve also been put on to hydro something in the last 3 weeks because I was getting quite bad bouts of pain so my advice is don’t go to ra appointment s yourself take partner with you and tell friends and family how your feeling I’m lucky I have a wife that’s been there asking all sorts about diet improvements exercise etc so good luck stay strong and don’t hate what we have it will get better cheers
Thanks for your comment. What I'm hoping is if my GP thinks symptoms match up with possible RA she'll allow me to go back to a low dose of pred. I'd been down to 2 mg for a couple of years before being able to taper off, and all that time whatever this is seems to have been under control. My feeling is if 2 mg pred works it's a lot less problematic than any other medication they can offer for RA. I would not take long term pred at a higher dose, however.
Yes, I am aware of the problems with pred. I also know that a person I'm close to who has RA had to stop taking mtx because of liver problems. I did read recently that research shows that even low dose pred can help prevent bone erosion in LO-RA and I'm hoping this is true. Sadly none of the drugs are without their own nice little suite of potential side effects.... At 2 mg pred the side effects I'd had faded into history but pain was still effectively controlled. I'd been tapering very slowly, taking three months to taper by .5 mg, and all was well until I was halfway through tapering from one half mg to zero.
I'll be on the phone with my doctor as I will not be seeing her in person unless she feels it necessary at this time, but all the more reason for me to have things written down, thanks for the reminder. They are gradually opening things up where I live so it should be possible for me to have bloodwork done but it seems to me some imaging could be a good idea and no idea when that could happen. Everything was backed up before the pandemic so unless it's an emergency (this isn't) I foresee at least a year's wait. All I know is I can't creep around like this much longer, something has to give!
Yes, it is a bad time. But if the disease is getting a grip on you to the extent of limiting ability to carry out simple tasks essential to looking after basic needs, it is urgent that something is done.
I have never read anything that says corticosteroids contribute to slowing disease activity although they certainly decrease swelling and inflammation considerably.
I had no trouble weaning off them myself but had been taking them for only about ten months, and had got down to 5mg before tapering down by 1mg each week; stopped after last one last Sunday.
We are all very different in how the body reacts or responds to any drug though.
I've been on pred since 2015 for PMR, for nearly four of those years at a dose well below 5 mg, having started at 15. In early days I had increased blood sugar, increased ocular pressure and possibly bone thinning (but as I never had a baseline DXA scan before pred I don't know for sure). But these were no longer issues once my dose was down below 3 mg.
For your interest, here is the abstract where I read the positive comments about prednisone in treating RA:
Interesting metadata analysis (last key point - there is little danger in taking very low doses of pred): Glucocorticoids in rheumatoid arthritis: current status and future studies - rmdopen.bmj.com/content/6/1...
I'm only fairly new to this "game", 6 months in and what was initially suspected to be PMR turned out to be RA instead but what I've noticed from reading up on both (at least here on these boards) are the slightly different attitudes towards sterioids (possibly with some good reason).
As far as I am aware, and you'll obviously know better than me on this one(!), pred is pretty much the only thing that works for PMR... whereas with RA there are a lot of different options (starting with DMARDS such as methotrexate and moving on to biologics if/when necessary) which may be why steroids are more usually considered to be a short term fix if/until other medications start taking effect.
I can only imagine how frustrating it must be to feel you have your PMR/symptoms under control only to be hit with a new set of issues/potential medications to consider, and can well understand why you might feel you want to stick to what you know (especially if it seems the pred may have been keeping your RA symptoms at bay, at least at a slightly higher dose than you're taking now) but, at least from my own experience so far, if you do have a diagnosis of RA confirmed, I'd be quite surprised if your rheumy doesn't suggest at least considering an alternative such as methotrexate which may well be a better/lasting solution in the longer term...
Unfortunately, methotrexate does tend to get a very bad press, and it's certainly not for everyone (nor alas, an "instant fix", like pred), but with careful monitoring, many people find they do very well on it with little to no side effects.
Of course, ultimately it will be up to you/your rheumy to decide what's best for you, I guess all I'm saying is that it's maybe worth keeping an open mind at this stage
Good luck with the appointment and really hope you find something that helps you get on top of things as quickly as possible.
It seems the problem with pred is it has been used at too high a dosage and this does lead to serious problems. I'm only speculating about using pred at a minimum dose. Here is an interesting article:
When I started pred for PMR I was naturally very upset and thought surely there must be some other treatment (there isn't) but once I was through the initial few months at dosage tapering from 15 to 3 within a year I was okay with pred and certainly its benefits over the subsequent four years have far outweighed any minor residual side effects from a very small dose.
Thank you for sharing that article, and the other with regard to the use of low dose pred in the management of RA which I found particularly interesting.
(I am not a doctor but) my understanding is that pred works on suppressing the inflammation caused by RA/RD whereas other medications (such as DMARDS/biologics) act on modifying/reducing the activity of the disease itself.
I'm certainly not going to argue which is better (I'll leave that to the medics!) and if it turns out you do have RA, and it can be controlled with a low dose of pred, then I can well understand why you might choose to stick with that option...
All I would add, is that I too struggled to get my head around taking pred initially (when PMR was the suggested diagnosis) and even more so, when having started to get used to the idea, RA was confirmed and my rheumy insisted that DMARDs were the way to go instead... but 4 months after having started the Mtx, I'm actually very happy that I chose to follow his advice.
I guess what I am saying is that if/when you find the pred is not enough, the alternatives may not be so bad either but hey... I really hope you find it's not RA and/or you don't reach that point at all
Hi
Are you stiff in the morning but lessens as the day goes on? How long does the stiffness last?
If you squeeze your joints are they tender/ painful?
Are joints hot as well as swollen?
Are you fatigued or have flu like symptoms?
These are just some of the more common symptoms.
I would write everything down and take photos of any swelling that you can show or send your doctor. I hope it isn’t RA. Good luck hope this helps
Thanks. The shoulder hurts when I squeeze it, but otherwise I don't notice anything wrong with it. My foot has been painful with pressure, but better since I dug out the old orthotics and started using them again. My knee doesn't hurt with pressure, but it can become painful when I've been sitting for a while, and also excruciating when walking (this is what triggered me to finally start asking for help), and it's almost like it's not lined up properly, not exactly dislocated, but it doesn't feel as stable as it should. I've been using my nordic walking poles in order to manage any kind of walk. This seems to have come on fairly suddenly, although I can look at recent history and see how it was building up.
Good idea about writing everything down. It's hard to know where to start. I'm only used to face to face appointments
Probably I need some good sessions with my physiotherapist. Hopefully she'll be allowed to see patients again soon.
Hi, I attempted to wean off Pred over 4 months from 5mg per day. Meth being maintained at 15mg per week. The impact was dreadful. Muscle pain and joints previously affected by osteo arthritis. The joints affected by RA were okay. Got so bad could barely shuffle across the room. Back on 5mg Pred and steadily recovering strength. Coming off Pred not to be taken lightly. Hope your situation improves.
My feelings about the pred exactly. Issues with pred come with doses over 5 mg and I was only above 5 for about ten months, then four years at gradually decreasing dose, nearly all of that time at about 2 mg. Pred has a bad press because too often and for too long it's been used at a higher level than necessary. I don't have a rheumatologist and with the situation here unlikely I would be able to see one for at least a year and probably longer so I want to converse with my GP armed with all the info I can get!
Do you think that possibly the original diagnosis of PMR could have been wrong? My own rheumatoligist told me he wasnt really sure whether I had PMR or RA but he's treating me for RA with mtx and 5mg pred (which I am also finding hard to come off because it works so well). How do doctors differentiate when symptoms are so similar?
To be honest I had very classic PMR symptoms - dismissed by a former rather young doctor who assumed, as I did at the time, that it was "only" my pre-existing osteoarthritis getting worse. I was diagnosed by another doctor who saw me when I could barely move for pain who recognized PMR right away, although she ran all the tests again to make sure (the same ones useless doc had run and ignored the results). I had complete relief from all pain within three days, including the longstanding OA, which gradually returned as the dose was tapered, but those other issues were dealt with by a miracle physiotherapist. I had been very well until the last little while attempting to taper to zero. I think there's been a bit of a confluence of bad events. I'm tapering to zero very slowly, but we are also in partial lockdown, so I would go out for a long walk early in the day and then basically be sedentary the rest of the time. Normally I would be a bit active all day long, and have two shorter walks as well. I think this pattern must be very bad for my aging joints, particularly feet and knees. Similarly, it could be changes in other activity patterns since the new year and especially since the pandemic, which have led to problems with my wrists and thumbs - doing needlepoint which I had set aside for years, and reading an e-book. It was the mounting pile of symptoms all of which look suspiciously like they could be RA, and don't feel like PMR, which led to my question.
Unfortunately you could very well be right with the RA. I was on pred for 2.5 years for PMR, but the final six weeks had a further diagnosis of RA, with the knee, hips and shoulder beginning to play up again. Increasing pred helped the pain, but it doesn’t stop the progression of the disease. Rheumatologist had suspected it and organised a Doppler ultrasound of my hands and wrists because my blood tests had no inflammation markers or RA factor. It’s called seronegative RA. I thought this rather odd as I had no pain or discomfort in those areas but a little bit of swelling which I put down to OA. Nope, already had bone erosion. Given these were areas with NO pain, imagine what was going on in the joints WITH pain. That was last October and I’ve been on MTX since, with “bursts” of no more than 10mg pred for the pain that is reduced over a month. The MTX isn’t working, and my previous non-painful areas are now, in this short time, so painful and so swollen that I’m about to start Plaquenil.
Don’t be like me and think that pred will be the solution. It isn’t. If you have RA you must stop or at least slow the disease and pred is only good for the pain. You’ll need something else specific for RA and that can take months to find the right medication for you. Meanwhile the disease is causing the damage that can’t be reversed.
Yes, between Donald in the US and Clive here in Aus we are already struggling to get our hydroxy. The pain came and went, until it came and never went. I was never really pain free unless I was on high dose pred, I started on 50mg for GCA and I’ve found my body needs at least 7.5 -10 if I want to move somewhat freely. That’s why I doubted the RA diagnosis until I had the proof. Even with RA you can have really good days, I still dance, but as the disease progresses... and with me it’s rampaging at the moment... you will just get worse unless you find the right drug for you. And there are many out there. Most of them can take anyway between 6-12 weeks to take full effect so it can be a painful experiment till you find the right one.
Ah yes! Well hi there, you’ve been very helpful to me in the past I have to say! Shame we have to catch up again here though. I meant to say my PMR still has a part to play as well, it never entirely disappeared so it can be hard to distinguish what is actually happening. As I said I was convinced it was my PMR still hovering around because increasing pred took away the pain and if I hadn’t had the ultrasound that showed the bone erosion I wouldn’t have agreed to the MTX. And now the Plaquenil. And if that doesn’t work it’s Humira. 😥
I'll take your words to heart. Thing is I suspect it will be so long a wait to have imaging done we'll have to decide on some sort of treatment before then anyway, depending how my symptoms develop and are interpreted. I'll see what the doctor has to say.
As we know there are different forms of PMR and perhaps one of them is simply that PMR is the early manifestation of whatever it is which becomes RA later. I have had both doctors and physiotherapists say to me, out of the blue really as I never asked or considered it, that they didn't think I had RA which means it did pass through their minds!
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