Correct diagnosis?

I have been on prednisolone for a week and a half and am seeing my gp soon for a review. I have had a rapid response to the drugs so from the information on your wonderful website I think the diagnosis is probably correct. Having read the Quick and Kirwen article I wonder if I should suggest to the GP that I stop the steroids for a short while. If the symptoms return would this confirm the diagnosis? Is it safe to stop the steroids as I guess that after this short space of time my body hasn't yet given up producing its own? I don't want to be locked into long term steroids if the diagnosis could be incorrect.

35 Replies

  • Hi maryWR,

    As you've read up on PMR what makes you think you may not have it? Presumably you had some of the "normal" symptoms beforehand and I guess your GP did tests to arrive at the diagnosis. If your pains disappeared with the steroids then it's most likely PMR. I can understand you not wanting to be on them but they are the only thing that will control your inflammation. Sorry, but that's the way it is! Discuss with GP by all means but I'm sure you know deep down what he'll say. The same as most people on here. None of us want to be on steroids but unfortunately there's not a lot of choice. Good luck, DorsetLady

  • You're quite right of course. It's just that I feel so almost well now that it's hard to believe that all the pain is just a few hours away. It's almost as though I want to reassure myself that the whole thing hasn't been in my imagination. Thank you for your help and advice.

  • Hehe - if you have a couple of days with no pred you will know it wasn't imagination! If you attempt a reduction too fast you will get reminders too! i honestly don't recommend them though ;-)

  • Appreciate your confusion and probable denial at diagnosis. Everything at first seems so alien, it does take a while to get your head around it. But as both PMRPro and I know, you will accept and get to grips with it! Take care and keep in contact. DL

  • Kirwan and co are using that test for patients who are "atypical" - are you? That means young, not entirely typical symptoms, not total relief of symptoms and so on. Yes it is safe to just stop now - but I was given 6 weeks of pred to get me through a trip to the US although the rheumy didn't believe it was PMR. I was jumping for joy after 6 hours of pred - and 8 hours after the first morning without even 5mg of pred I was in bed in tears because of the pain. It was worse than before. He wouldn't listen, luckily a different GP did. It has taken me years to get to 5mg again - I'm convinced if he had kept me on pred and not allowed that flare it wouldn't have been as bad. Maybe I'm wrong.

    As DorsetLady says - that's the way the cookie crumbles. If you want some "proof", there is no reason why not to stop, if you are like me a couple of days will be more than enough. No it won't be dangerous and if you think it will make you more accepting of pred, fair enough. But it is the dramatic response that is being looked for - if you hadn't been the dramatic change there would be more questions to answer.

  • Thank you I feel very reassured. I'm fairly typical I think so I'm sure the diagnosis is correct. Thanks for the help and support.

  • I have been to the doctor today for my blood test results as my doctor was pretty sure I had "classic" pmr symptoms. According to my GP the diagnosis is absolutely confirmed by the rapid response to steroids, if there is not much response then they would query a correct diagnosis of pmr & investigate further. Don't take yourself off the steroids as you might relapse. Apparently regular blood tests will show the response you've had with the steroids & they will reduce your dose accordingly so that you'll be maintained on the smallest dose possible, as long as you take calcium & vitamin D supplements the damage from long term steroids can be averted. Like you I am a beginner in all of this but one dose of steroids has already helped the debilitating pain & stiffness I've suffered the last couple of months so I would rather take them than return to that. I do have a wonderful GP who picked up on my symptoms. Arm yourself with all the information you can & don't stop taking your tablets without discussing it first with your doctor. Good luck

  • Good advice, thank you. Your GP sounds wonderful but I don't have that much faith in mine. However, as you say, arm yourself with the information. Thank you for your help and support.

  • He obviously knew enough to start you on pred - believe me that is far more than some can manage! I had 5 years of pretty classic symptoms except raised blood tests and that happens in about a fifth of patients so isn't that uncommon (even if Kirwan thinks so, I believe he is coming round to the idea having met a few of us but he's retired now so its too late!).

    The next stage is not to reduce too fast. The Kirwan/Quick option is better than average but we believe that slowing it down to 1mg steps is even better - and when you can't manage dropping even 1mg from one week to the next then spreading the 1mg drops over a couple of weeks will often do the trick. It isn't any slower than dropping, failing and having to go back over and over again. And doctors are coming round to THAT idea too.

  • You're right, I've been very lucky. I've gone from first symptoms to effective therapy in something like 2 months. When I read of other people's experiences I am indeed grateful. I think he is trying to reduce my levels too quickly but on the other hand he seemed apprecitave that I had done my homework and he will listen to my input. Sadly he is a locum - I wish he would stay as I think he's better than all the other GPs in the practice.

  • Another post on today's site is talking about chronic fatigue syndrome.

    |The lady said she felt much better when she had to have Steroids for her perforated ear drum.

    Could she have PMR or do steroids help CFS????

  • Not that I have ever seen no. The overlaps between CFS/ME?PMR and a few other syndromes are immense and it is not uncommon for patients to be diagnosed with PMR by accident after having pred for other problems, often a cortisone shot for shoulder bursitis/suspected rotator cuff injury led to improvements in other symptoms.

    It is very common for younger patients to be told they have CFS/fibromyalgia because the received wisdom is that you can't have PMR under age 50 - but I bet at least some of them have PMR. When I was researching to find what it was I had there were a load of overlaps between fibro and PMR. I'd had post viral CFS when I was in my late 20s. It improved but never really went away - I don't think they were unconnected.

    I don't care WHAT the original diagnosis is - if they find a treatment that makes things better, that seems a good way to go in the interim. If you are housebound or whatever and a moderate dose of pred means you aren't - is there a lot wrong with that?

  • Hi MaryWR. To some extent I share your feelings! Have been on preds since beginning of January, and am experiencing hardly any pain now, so I am wondering if I imagined it all. My wife says "definitely not"!

    This forum is so helpful, and I am now decreasing the preds slowly and carefully; just waiting now till I can get down to the lowest dose where the pain (assuming it comes back, and everyone. Indicates that it will) is acceptable.

    Good luck.

  • Hello Charlie1boy. This forum is indeed great. It's so useful to talk to others and share experiences. I'm glad you're pain free too. Let me know how you get on as I shall be following in your footsteps. MaryWR

  • Charlie - just forget your pred for a day or so - you'll soon find out if you imagined it!!!! You're a bloke - you will almost certainly find you have a different journey from us ladies ;-) - if you are lucky that is! And being nice people, we'll hope you are!

  • Hi!

    I appreciate your comment. No danger of me forgetting the preds; having followed this forum for the past 6 weeks or so, there is no way I'm going to ignore all the excellent advice and information I'm getting.

    I have to remember, I'm not yet down to the usual starting dose of 15mg!

    Thank you again.

  • hi Everdean,

    I've no experience of CFS, but as the steroids principle role in PMR/GCA is to control inflammation in the blood vessels, then I guess it controls inflammation full stop. I'm sure someone with more knowledge will confirm or deny that theory. DorsetLady

  • DorsetLady you have had some of the worst experiences ever! But as to the inflammation (and please PMRpro help & critique me) the prednisone impairs at least one antibody so that it stops attacking or attacks less effectively. I think it might be something like Th1. But with these diseases there are more problem antibodies and blood irregularities that are not antibodies. Another antibody that runs amok might be something like Th17. The prednisone does not affect this one. It keeps attacking. Therefore, I think that the prednisone does not "full stop" the diseases in their tracks. And this 2nd antibody attacks a different part of the lining of the artery than does the first antibody. This might be the problem one with the heart arteries. I'm pretty sure that there are other things going on and that even the doctors don't know exactly about all of these "things." Therefore at least with GCA as PMRpro says, the underlying condition remains. The Th17 (or whatever it's called) continues attacking unabated. (I suspect that it's the same for PMR, but the doctors seem to know even less about how PMR does what it does to us than they do about GCA.) I suspect that without the Prednisone, or with too little of it, the first antibody gets powerful again, joins the 2nd and the other blood irregularities to greatly increase the symptoms. I had undiagnosed GCA. When later I got the PMR only 4mg of Prednisolone stopped the PMR in its track--in 24 hours. However, now it can come back when I reduce the prednisone (or even sometimes when I don't reduce), even though I remain (after the reduction) on a much higher dose than 4mg. This might be why it's not a good idea to "test" the symptoms by stopping the prednisone and then re-starting it. It seems as if the first slam of prednisone in the body is the most effective. Stopping and restarting the dose might be less effective.

  • Hi Asbeck,

    My reply to Everdean could have been written more clearly. I didn't mean that Pred controls the inflammation entirely, i.e. eradicates it completely. I meant to convey that it keeps the inflammation under control when used at the correct dosage in PMR/GCA cases. so it is likely that it could used for other illnesses caused by inflammation.

    As I said, I'm certainly no expert, so apologies to anyone I may have misled. DL

  • Thank you DorsetLady.

    I appreciate your comments.

  • No, no, no! I can't tell you how much you have helped me particularly with my eyes. I was not misled. The article which I had read explaining the different antibodies and how they react to Pred shocked me. It also explained to me how we can have the disease hurting us even when we take Pred. I was just trying to share that. And you are more of an expert than I am. You have suffered one of the worst symptoms. This places you in the category of expert. When it happens to us, then we KNOW.

  • 2 of 2 replies. I had thought (incorrectly) that if the Pred disarms the antibodies, then once we take it, we are well except for the side effects of the Pred until we stop the Pred, and the disease builds up again and comes back. (But PMRpro always said that the disease is with us [making us tired, etc.] even after the Pred. PmrPro and you know what you're talking about.) I now think (without scientific basis) that somehow if we stop the Pred, or reduce it too quickly then the disease gets a better leg up on us and is not as responsive to the Pred once we restart it as it had been before the stop or reduction. I base this musing on the fact that if we reduce too quickly, then to feel well we have to get a higher dose than before the reduction. In my personal experience this seems particularly true of the PMR part. But the data say that once we take the Pred we are at a very much less risk of blindness, a GCA part, even if we reduce the Pred dose. All this doesn't make too much sense to me. But my description of the 2nd antibody, maybe called th17 was more or less in response to the dangers of stopping the Pred to see if the disease is really not there. Maybe this would require a higher dose after the experiment and increase the total time controlling the disease with the Pred. I didn't mean it to be in direct response to you. I was just frustrated and trying to wrap my mind around things. Very sorry.

  • hi Asbeck,

    My first attempt to reply seems to have drifted off into the ether so I'll try again!

    Please don't be sorry, apart from having this dashed illness for which we are all sorry.

    My layman's simplistic view is that when we get PMR firstly, its because the cells in the blood vessel walls grow too large (hence Giant cell Arteritis) because our auto-immune system has failed. This leads to the cell walls growing too big and stopping the blood flowing as it should, so we get pain, initially in the large muscles, shoulders etc. If not treated by Pred, then after time it affects the smaller blood vessels, mainly in the head, neck area, ultimately reaching the optic nerve and other tiny vessels surrounding the eyes. Understandably, the smaller the blood vessel, the more difficult it is for blood to flow, and consequently, if the vessel walls become too big, then no blood can get through - hence no blood to the workings of your eye - no sight.

    Obviously as people are diagnosed at different stages through PMR or GCA then the amount of Pred required to stop the cells growth varies. And everybody reacts to that Pred differently. Some good, some bad, some indifferent - but we all need it!

    On diagnosis, my Ophthamologist told me I need to be on Pred for at least 2 years to preserve sight in other eye.

    What I would say to you, and anybody else reading this you do get through it. But it helps if you are bloody-minded and don't give in!

    I've been diagnosed almost 3 years (think I had PMR for at least 18 months prior to that), have reduced from 80mgs to 5.5mg per day, lost 2 stone in weight, flew to New Zealand over Xmas/New Year to see daughter & grandchildren on my own, and feel great at the moment. My only regret - my wonderful husband, who saw me suffer in the early days died last year so is not here to enjoy life with me now, but I know he's by my side every step of the way.

    Sorry to waffle on! DorsetLady

  • Oh my. Your situation is even worse than I had thought. I'm so sorry. And congratulations on losing the weight. It's not easy even on 5.5 mg Pred. And I'm so happy that you had a wonderful trip. Continue to protect that eye. Thank you for the strong words. I'll look up PMRpro's neutrophils (or whatever they are). This might help me try to understand these crazy diseases. I got sick on the 20th of Dec. 2014 while trying to reduce by .75 mg. on PMRpro's method. I was at a less dose, and then 3 or 4 days of old higher dose. Still not sure what it was--flare or virus, but I went to the hospital. My Rheumy said good job for going. And they did put liquid in my veins, short dose of more Pred, 1000 mg of Tylenol, oxygen. Apparently when you're hydrated your vessels get bigger. Seems like something that would help us. So now I just go and get someone to try to take care of me if I get too sick. Better than worrying that the diseases are doing something especially bad. Also I now have a neuro ophthalmologist and a rheumy. I see them often and they seem to check me pretty carefully. So far, they don't worry about the prednisone. I try PMRpro's method, until I have to wait for further lessening of the dose (because I can't stand the symptoms), and the docs agree and are happy and nice to me. I read on here that many people don't have that luxury. So thank goodness for what I have. Thanks to you I get right on eye symptoms. You told us how quickly we lose the sight. Both of my eyes see--not great vision, rather cross-eyed but completely correctible. Thank you again.

  • It will depend what is CAUSING the inflammation - there are various sorts of damage but they all cause inflammation. In some cases pred will interfere in the inflammation cascade as it is called and halt the damage and so the inflammation - in other it won't be as effective.

  • Not sure about the technical bits of your post - need to do some reading. Something they did establish last year is that neutrophils are probably implicated in PMR inflammation - they definitely are in GCA and Takayashu's arteritis and probably some other forms. Pred acts on neutrophils - so that is possibly how it works in PMR.

    But it is commonly accepted that yoyo-ing your dose makes it more difficult to reduce later.

  • I don't think CFS is inflammation - at least as far as they can identify. That's why it is so difficult to do anything about. They haven't identified any specific cause.

  • Is it just me or does everyone else with pmr suffer from chronic fatigue anyway? That was my first symptom about two months ago along with sleepless nights & stiffness in the mornings, I put it all down to menopause at did my doctor. Astounding how quickly the deterioration happens though. I'm only on day 2 of pred & so scared of that pain returning.

  • Don't be scared. I was really exhausted when I first got symptoms but my energy is returning after 2 weeks of Prednisolone. Over the last few days I have had a few twinges, just warning me that the condition is still there, but I have remained functional - I can turn over in bed without yelping and can dress and undress without help. I just find that if I do too much during the day, the twinges get more insistent in the evenings. So take it easy on yourself - remember the PMR is still there but it is manageable if you don't try to do too much. If you have had good pain results after only 2 days then it looks as though the diagnosis might be right. Take care and keep in touch. Good luck

  • Thank you MaryWR.

    I'd never even heard of this condition until my doctor seemed sure that I had it. Like you I had started being unable to dress myself & walking was becoming impossible, I've continued working nights alone as a care assistant & would sit & cry between residents & my husband would have to help me out of the car & into bed when I got home, it's madness what we try & put up with. My GP has put me on sick leave this week whilst the pred gets to work, think I smiled today for the first time in what seems like ages! It's good to talk to those who know how it feels

    Thanks again x

  • All above comments are very helpful, But how do I get diagnosed for PMR when I have all the symptoms, please? Should I ask for some blood tests first?

  • I arrived at my own conclusions having done some research when I went to see the Gp he raised a number of possibilities including rotator cuff injury and PMR. He sent me for blood test which showed inflammation, rapidly resolved when on preds, confirming the diagnosis. Just suggest it to him as a possibility And he's duty bound to investigate it.

  • Thank you so much MaryWr I see the Dr on Friday.

  • Good luck. Let us know how you get on.

  • Thank you MaryWR

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