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Is my pain caused by the return of PMR or can it be the medication I am taking?

I am 12 months into my diagnosis of PMR and down from 15mgs Prednisolone to 7mgs. After 3months without pain and down to 11mgs I began again to suffer the symptoms of PMR, however a blood test revealed the PMR had gone and my doctor advised me to continue reducing the Prednisolone.

Now I can hardly walk, I have suffered severe back pain for the last 10 weeks for which I am taking Ibuprofren and pain killers (which don’t do anything only allow me to sleep for perhaps a couple of hours). My right arm is back to its pre-diagnosis uselessness and my knees have started causing pain.

I know that PMR can return and for all I am told it has not, and incidentally being refused another blood test , my question is.....can prednisolone or/and Ibuprofen prolong and heighten pain in areas such as my back? If this is the case – has anyone the answer to get me back on my feet, please?

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  • carolk

    boy is this query for eilleen i am sure she will put you right but i offer my humble knowledge gathered more from this site than any dr or nhs site first anyone experiencing return of pain with the reduction of steroids has to presume the pmr is causing the problem not the steroids or pain killers. although a blood test will reveal inflammatory markers going up or down its your symptoms ie increased pain that tell the story ,it seems mandatory for drs to get you off steroids these days but in this condition this is the only realistic treatment , so to suffer 10weeks of pain is more than enough reasons to return to your gp for a rapid review of the situation .eilleen will tell you few people see pmr disappear in a year but its a myth that professionals cling on to ,so good luck with your gp carolk ps i am sure lots of people will answer this ?? because its something that happens often to pmr sufferers

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  • DaisyBee

    Thank you so much Carolk - very interesting to hear what a blood test will reveal, surely this could be any number of other conditiions? I dread the thought of going back to fomer doses of steroid because of the side effects, but the pain in my back is so crippling, if that is the answer then I will certainly speak to my doctor a.s.a.p. Will post her reply.Thanks, DaisyBee

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  • Mrs G

    Hello Sorry to hear of your pain

    I wouldnt assume that your PMR has returned just because you have back pain so would think a trip to the Dr is called for so he understands how little quality of life you have between painkillers

    I have had PMR twice The first time was easy 20mg to 1mg in a year no pain Second time has been much more of a problem I got to 4mg from 20mg in about 14 months bout quite often had a bit of background pain and uineven blood results but then had a major flare and all the shoulder pelvic typical PMR pains came back had muscle pains and stiffness quite generally as well and had to go back to 15mg 2 years later I have had an up and down ride to 2.5 mg My bloods do tend to tell the story so Im lucky but not everyones does

    A lot of people have high bloods to start with and this comes down but as the Drs consider a wide range of ESR is OK its difficult to fine tune it to you individually

    Your back could be unrelated ( I have many friends with long term back problems ) and quite often because you arent walking properly you cause problems with knees hips and ankles So persist with your Dr for an answer Steroids might cause problems but so do other painkillers and I personally feel far worse on Ibuprofen than steroids

    Hope you feel better soon

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  • carolk

    totally agree with other writer perhaps i am been pessimistic saying its possibly pmr what i think is the most important thing is having persistant pain for a prolonged time so what ever it is you need to visit gp .inflammatory markers can signify other conditions and unfortunately there is not a definative test that says yes you have pmr but more a considered accumulation of symptoms raised crp pv or esr plus significant improvement when given steroids .usually other possibilities are eliminated at the beginning eg i was tested for ra and others .as the previous writer said back pain may be something else so good luck with the dr and lets hope its something they can deal with quickly for your sake carolk

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  • DaisyBee

    Thank you so much. Your replies have been very useful in helping me to understand more of what is going on with the PMR – for instance my doctor tells me the PMR has gone so why am I in so much pain? If my understanding now is correct - that the blood test for PMR is not specific, then it probably is still with me, or could it be something else?. I have booked an appointment with my doctor for Tuesday and will see what she suggests, meanwhile it would be useful to know how your return to larger doses of steroids was managed. Thank you again. Daisy. p.s. I was also given Actonel (Risedronate) but as my bone scan was normal and it made me feel very sick, I have not taken it, although my doctor is still concerned that I should.

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  • carolk

    hi again re med you mentioned they are notorious for been dificult to tolerate the one i had was alendronic acid it made me so ill gave up and reading the posts here they have a very poor opinion of them i just take adcal two a day .re adjusting doses etc eileen wrote a very informative piece for me look back to( more info requested )way back in dec eileens answer to me dated 7th dec was very informative .i am no expert on this disease but have picked so much info from all the contributors they are a great support ,good luck again for monday let us know how you get on fingers cross you are pmr free carolk

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  • MrsO

    Hello DaisyBee

    Do hope I've got your name right as I had difficulty signing in and now, of course, I can't see your post - aaargghh!

    It sounds very much as though you are experiencing a flare in the PMR as such flares are very common during the first 12-18 months of treatment. Your last reduction might just have tipped you over into the dose at which the inflammation was no longer being controlled.

    Whilst in the absence of a specific test for PMR, GPs tend to use the blood test markers ESR and CRP as a diagnostic tool together with a trial of steroids, some sufferers of PMR never have raised markers which leads them very often to suffer long-term pain until a diagnosis is eventually made. Therefore, if you didn't have raised markers at the outset, then it is unlikely they will be raised now. If you did have raised markers at the outset, that may even have been due to another infection lurking at the time, hence no increased markers now.

    Perhaps an increase back to the dose at which you felt comfortable might help. On the other hand if you find you have to increase back to 15 to get control of the inflammation and pain again, then you may find it quite easy to decrease back down more quickly afterwards at least to, say, 12, if that is where you still felt comfortable previously and then perhaps remain there for a little longer next time.

    Do hope this helps.

    MrsO

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  • MrsO

    DaisyBee

    Be careful with Ibuprofen - not a good idea to take anti-inflammatories at the same time as steroids even though a few people do. Plus it was my experience that nothing but steroids touch the pain of PMR, and my feeling was that I didn't want to risk any more toxins in my body than necessary.

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  • DaisyBee

    Thank you Mrs O for your advice, it all sounds reasonable and although I thought I may feel upset at the thought of going back to the original (or similar) dose, I now feel relieved that there may be a solution. Running down the steroid in order to get off them altogether seemed to me to be the best option, but the disruption to my life is horrendous. If I can get back to a time when my life was not controlled by pain then I and my dog will be very greatful. It's also good to know that going back is not a life sentence of steroid control, but more of a yo-yo effect, I can cope with that.

    Thank you also Carolk - I will do as you say.

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  • EileenH

    Hi DaisyBee and welcome!!

    And exactly what test did your GP claim showed that the PMR was gone? There is no test of any form that can "confirm" that you have PMR or do not have PMR. It is a diagnosis made on the basis of the clinical picture - your symptoms - and possibly a high ESR and/or CRP blood test. In addition, PMR is the only form of rheumatism/arthritis where the symptoms get dramtically better within hours of taking a dose of 15 to 20mg/day of prednisolone. However, both the blood tests can be raised for other reasons and are meaningless on their own. One in six patients with PMR never has a raised blood test at any time and some patients who did have a raised level before prednisolone find it falls to a "normal" level and doesn't go up again even though they have a flare up of the PMR symptoms. In addition, the level taken by the doctors as normal for an ESR is anything up to 35 to 40 - they work it out by taking your age and adding 10 and dividing the answer by 2. So if you are 60, 60+10=70, divided by 2 is 35.

    However, on the other UK PMR forum we have had a long discussion about this - and many find they are well at levels in the teens or even much lower but anything above what you could say is their "personal normal" is likely to be accompanied by pain. My usual level is 4 - and it always has been, even when I couldn't move for PMR pain. One 90 year old gentleman is well at something similar - anything above 15 means he is in for a flare and needs more pred.

    Beware of yo-yoing your pred dose though - it will, in the long term make it more difficult to reduce. That has been seen in medical studies. The main cause of so-called flares is the pred dose being reduced below the level you need to control your disease and the symptoms. PMR is not the disease, PMR is the latin description of the symptoms: many (poly) painful muscles (myalgia) and the symptoms are due to an underlying autoimmune disease that causes your body to attack itself. This leads to inflammation and swelling and that causes the pain. Taking pred reduces the inflammation and, hence, the pain and stiffness. There are other diseases that appear similar, only PMR responds so very quickly to pred.

    You are initially given a dose that is almost bound to be enough to deal with it, 15 or 20mg/day. This relieves, manages the symptoms - IT DOES NOT CURE IT. There is no cure at present, it can only be managed using pred until the underlying disease process burns out - maybe in a 2 to 4 years which is the case for about 50% of patients. About a quarter are able to stop their pred in a year or less - but they are much more likely to have a relapse and have to start all over again from scratch with the pred. The second time round may be nothing like the first time as MrsG has already said. The rest, about a quarter again, need a low dose of pred for a much longer time.

    If your symptoms started to come back at 11mg you should have stopped there for a time to see if they would settle. No reduction should really be more than 10% of the dose you are on - so never more than 2.5mg at a time from the outset and preferably less - but 10mg often poses a problem and below that drops of more than 1mg at a time are fraught with difficulty. Below 7.5mg/day a drop should be 1/2mg at a time. But if the symptoms return - the PMR is probably still there whatever the bloods might suggest. And you need a couple of months between drops to allow your body to settle down. You can have similar pain to PMR from dropping the pred dose - pain that starts quickly after the reduction and then improves over a period of a couple of weeks is probably due to steroid withdrawal, pain that starts more slowly and increases is more likely to be PMR escaping from the pred net. When you are going to reduce the pred, make sure you have as little as possible in your diary and plan lots of rest that first week or so - and the reduction will be much more likely to work.

    As for the

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  • mrs k

    Daisybee

    Eileen has said it all, but the back pain, which you did not have before, could be your adrenal glands are tyring to wake up, as they stop producing natural cortisone once you are on long term steroids. Once you get below either 7.5mg or 5mg, they slowly start to wake up and it can take one year from stopping pred altogether before they are fully functional. That is why you should never stop pred abruptly - just slowly come down. If you stop abruptly it can and dose cause an adrenal crisis.

    It looks to me as though your GP needs some education in PMR.

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  • DaisyBee

    What wonderful advice - have passed some of it on to my doctor!

    Sorry but yet another question. My doctor agreed that I should increase my pred but didn't tell me how. So, you lovely people - please advise. I am on 8mgs at the moment, should I go immediately up to 10/11 which is where the pain started, or should I go up gently and if so by how much and how often?

    I believe that your advice to take half the Pred in the morning and the other half at tea time is very important to me. My pain is considerably worse at around 6.00pm and makes it impossible to be comfortable in the evening and at night. From tomorrow I will take the split dose and see if it helps - it certainly cant make it any worse.

    I will remember of course that it is my responsibility to take or leave the advice you give, but I am looking forward to reporting that I feel healthy again and able to pursue the things that I enjoy.

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  • MrsO

    Hello DaisyBee

    No, you can't creep back up through the doses to find the dose that suits you - I'm afraid it doesn't work that way.

    You found that your inflammation and pain returned on the 11mg dose, so, if it was me, I would go back to 12mgs for at least a couple of weeks and then have a blood test to ensure that the inflammation is under control before trying to reduce back down again.

    I never tried splitting my dose as it is generally recommended to take the whole dose early in the morning with breakfast - our adrenal glands normally produce their natural cortisol (steroid) in the early hours of the morning. Although this natural production is suppressed when taking steroids, I still believe it preferable to continue as closely in line with the body's normal function as possible. Having said that, one or two people have tried splitting the dose and it has worked for them.

    MrsO

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  • EileenH

    If you are on a high enough dose it should keep you going to the next one. MrsO is right: no pussy-footing about (you do that on the way down ;-) ) Go back to the dose you were fine at and stay there until you are feeling stable before thinking of reducing. It does help some people to split the dose - but try the higher single dose first - that is associated with fewer side-effects. Most people who split the dose don't do it 50:50, its more the bulk in the morning and a bit in the evening to help the next MORNING stiffness. If it is evening stiffness that is the problem you just need more.

    Eileen

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  • 2 years and fed up!

    I have now been on Prednisone for two years now. My first rhuematoligist started me on 20 mgs. and I slowly reduced to 1mg. every other day - but the pain came back and got worse so I made an appointment with her again. She told me that I did not have PMR anymore (my blood tests were okay) and that Steriods affect your muscles to I should have physio therapy. Which I did. But the pain by now was excrutiating!

    So I then went back to taking 10 mgs. of Prednisone a day and after a day or two, thankfully the pain disappeared. I was so angry with her for the pain and the money I spent, but especially for the lack of empathy that she showed and her insistence that it was no longer PMR. After that I spent another year going from 10 mgs. to 4 mgs. (but I discovered my lowest level without any pain was 5 mgs.). So I have just met with another rheumatologist who was so helpful and knowledgeable - unfortunately she did say that I might have PMR for life!! I had believed it could last for six weeks to ten years!

    She told me that there was no cure or knowledge as to how it occurs, but did tell me that about 10% of people have positive blood tests, followed by negative blood test, and that was not a secure way to find out if it is still with you or not. Only the pain will tell you when you reduce too much, and that is what you have to go by. Yes, PMR can come and go, but without the relief of steroids when reducing them slowly, you will never be able to know whether this awful infliction has run its course.

    I would be very interested to hear the length of these attacks, as 'for the rest of my life' sounds awful!

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  • mrs k

    Suggest you google PMR&GCAUK North East Support and read up on it and find links to other places.

    It is not uncommon to have PMR for rest of life - there is no known cause or cure, PMR has a mind of its own it comes when it wants and goes when it wants. Find the level you are comfortable at and then try Ragnar's method on the forgoing website. But look also under usefule links.

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  • DaisyBee

    Hello again everyone. Thank you for your replies. I increased the dose of Pred. to 20mgs in an attempt to separate the pain of PMR from the pain of my back. It took about two weeks but now the obvious PMR pain in the rest of my body has gone, leaving me with the chronic back pain which I now know is an injury. So, the exercise was a success, but I am no nearer to identifying the exact problem or recieing treatment for it apart from pain killers. It has been 14/15 weeks and to date no-one has examined my back. I have been put on a waiting list for physio and for now my Doctor advises me to stay on the 20mgs. Obviously I would like to start coming down as soon as possible but will wait until I can strengthen the back as I am sure the PMR was making the pain worse. (I had become unable to dress myself without extreme deifficulty and putting on socks and shoes was out of the question).

    'Two Years and Fed Up' - It's interesting to hear that your pain went when you returned to the lower dose, which would seem to lend weight to my theory that the Prednisolone can cause the pain.

    Thank you Mrs K, again what you say makes sense.

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  • MrsO

    '2 Years and Fed Up'

    5mgs was a sticking point for me so following a flare at that dose my rheumy increased me to 10 with advice to slowly reduce back down to 5 via 2 weeks at 10, 2 weeks at 7.5 and two weeks at 7.5 and 5 on alternate days. He then kept me at that 5mg dose for between 5-6 months - it was where the flare had originally occurred so although I baulked at his suggestion, it made sense and it worked. Like you I thought this meant my dose for life, but I then started tapering the dose in half mg doses by way of 6 days at 5mg and one day at 4.5, 5 days at 5mg followed by 2 days at 4.5, etc. A snail's pace but it has worked and I am hopefully now in remission - I could probably be off steroids but I prefer to hopefully trick my body into not noticing the withdrawal so I am now on zero pred for 4 days followed by one day on half a mg - probably absolutely no therapeutic value to that dose but having taken so long to get here (5 years) I'm not going to rush the final hurdle (especially following an original diagnosis of both PMR and GCA) - well either that or I'm a woos!

    Yes, there are a few people who are on 5mgs for life but the couple of people I know in that situation get impatient with trying to lower the dose as slowly as I have done - they feel good for a few days so reduce again without giving the adrenal glands long enough to kick back in to producing their natural steroid alongside the lowered artificial one. So go slowly and stay positive.

    Be careful with physio - their usual techniques such as manipulating and stretching are contra indicated in PMR but it was my experience in the later stages that phsyio by way of gentle massage with heat to strengthen the steroid weakened muscles was of enormous help.

    It has also been my experience that the back pain from either PMR or spinal injury can be relieved by wearing a support girdle for a few days during such painful bouts.

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  • MrsO

    DaisyBee

    The last two paragraphs of my reply to '2 years and fed up' are really meant for you but I forgot to put your name in front of them!!!! One day, hopefully, we will have an edit button for our posts on this forum!!!

    MrsO

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