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Increased pain when reducing steroid dosage

  1. I must agree that your reduction in doesage seems very rapid When I had PMR before I took over 2 years to get from 20mg to nothing and in that time had no flare ups This time I started on 20mg in October and am now down to 7.5 I did have a few hot flushes palpitations on 20mg I am also now feeling more tired since the reduction in doseage and if I have any poor nights sleep I do ache a bit so I am now trying to rest more I am having monthly blood tests and check ups with my Doctor and feel grateful that I have a Doctor who is so switched on and caring

  2. Hi again, (and talking of doctors...)

    I’ve been meaning to get around to sharing my experience of visiting the doctor on Monday (16th Feb) after a whole year’s absence. Here is a list of the things I asked and/or learnt.

    (a) Despite thinking ahead and making a list of questions, I found it wasn’t easy to keep the session under control and get the answers I wanted. The doctor had his own way of running the session and his use of the computer was a distraction. I had to struggle to ask my questions and got the feeling I’d need to meet him several times to get more practice.

    (b) Details of another medicine I’d been prescribed by another doctor (Alenat/Aledronet, from over a year ago when they tested my bones and said there was slight osteoporosis due to the Prednisolone) were not visible on this doctor’s computer system. This he said was due to their “privacy/secrecy” obligation when treating patients. He assured me it was the same in England; (remember I’m in Sweden). It meant that full details of my treatment are not collected into one place, which I found really odd not to mention inconvenient.

    (c) Why hadn’t they called me for a whole year to check how I was getting on? They don’t do that, they rely on people calling in and asking for advice, blood tests etc. He even commented that it would be too much extra work sending out reminders to thousands of patients. He recommended that I call for an ESR once a month from now on, and if it looks ok then drop back to every 2nd month.

    (d) They took 2 blood samples there and then, one for ESR and one for Calcium (I think). I haven’t heard any result yet.

    (e) Advice on how to adjust my dose? I showed him a graph I had prepared showing my day by day dose for the past 20 months, and how I had reduced from 25mg to about 5mg with several ups and downs on the way. He said I had done well and should continue in he same manner. Ie. Nothing new!

    (f) Tablets. After a while searching he found that there are some 1mg Prednisolone tablets available here but their price was much much higher than the higher dose ones. He prescribed be some 2.5mg instead to go with the 10mg and 5mg I already have. They all cost about £5 for 100 tablets; and having already paid over £160 this current year I only get charged about 20%. (The Alenat, is really expensive though at about £26 for 12 tablets, of which I only pay about £5 &#61514wink.

    (g) I mentioned the risk for osteoporosis and he booked for a bone check (this time an x-ray of the heel) for some time in the future when the equipment comes on its rounds to this neck of the woods.

    (h) Next an awkward subject; I’d always been confused by what I read about Prednisolone. On the one hand it is said to dampen down the immune response (hence reduce inflammation) and so unfortunately increase the risk of getting an infection. But then I also read that if you get an infection you need more cortisone in the body so you need to temporarily increase the dose. He didn’t even seem to understand why I saw that as contradiction so failed to explain it away. The only part that makes sense is that when you take Prednisolone the body’s own production shuts off; so when you do need more (eg when you have an infection) the body doesn’t create the extra. Then it’s necessary to increase your dose temporarily until the infection is over.

    (i) I’ve been struggling with this infection question for about 3 weeks now (before seeing the doctor); having had a cold/flu and finding that although the cold seems to have cleared up I’m still left shivering a lot of the time. To test out what I’d read I gave up my attempts at living with between 5mg and 2.5mg and went back up to 7.5mg. The PMR symptoms (neck and shoulders) responded quickly by disappearing; and after 6 days I think the shivering is easing off gradually, so I’ll give it another week at least.

    (j) Another question concerning the fact that the body’s production of Cortisol (via adrenal glands I th

  3. Your medical care seems to be DIY compared to mine !!! I would have monthly blood tests if these dont cost you anything as you see a much better trend on your blood results comparing them with how you feel I think The other blood test you had would have been CRP which is someting like Creativ Protein I cant remember !! I have that every month and the first time I had PMR this was the most elevated of my blood results all the time and my Dr montiored my doesage in accordance with that result I did read on old posts that in Canada they are doing research in to this as possibly being the most important result as an indicator as how your illness is going Good Luck and keep investigating !!

  4. Now I’ve learnt something new. Thanks Mrs G.

    From a quick search on the web for CRP…

    - “C-reactive protein (CRP) is a protein found in the blood in response to inflammation”

    - “CRP rises up to 50,000-fold in acute inflammation, such as infection”

    - “Measuring and charting C-reactive protein values can prove useful in determining disease progress or the effectiveness of treatments”

    Now why couldn’t the doctor explain that?

    I’ll be sure to check whether they did that test and ask for it in future.

    All the best; davblo

  5. Hello Davblo

    I have similar experiences with my doctor when it comes to computers. I too go armed with a list of questions, but there always seems to be some problem with the machine that distracts the doctor and constantly interupts my flow.

    I'm also on my own with the reduction of my Pred dose and monitoring of my condition - I get no regular blood tests. I happened to see my doc about something unrelated recently and he asked how I was managing the PMR and seemed happy that I was alright, but it was just a passing interest.

    I read somewhere quite recently that the body starts producing corticosteroid once the dose of pred gets down to 4mg. That's why so many people find it such a difficult step.

    Jak

  6. Thanks Jak; glad I'm not the only one struggling with control during visits to the doctor.

    Interesting you read another view concerning the dose level at which the body's production of cortisol should try to resume.

    I tried searching on google and with key words \"long term corticosteroid withdrawal\" I found a response in \"Google Answers\" where some kind person lists a large number of links to reports and discussions on that subject. I intend to follow them up when I get the time and try to learn a bit more.

    All the best; davblo

  7. I just wanted to add quickly that those leads I mentioned are over 5 years old and so many links don't work any more. Also caution is needed when following links, to be wary of \"nasty\" sites which try to mislead or take over your internet browser. At any hint of danger I close the browser as quickly as I can.

    Anyway, there does seem to be a whole subject of corticosteroid withdrawal. So as well as dealing with unwanted PMR symptoms during final tapering down, we also seem to be stuck in a withdrawal struggle with the very drug which has been helping us.

    One report claimed that full recover of our natural production of cortisol can take a long time; even many months after stopping the dose completely. So any infections or \"stress\" during that period can require that we help the body by taking (a little) prednisolone again; which of course drags out the recover period even longer.

    If I'd known this at the start I'd definitely have kept my dose lower and put up with more stiff necks.

    All the best; davblo

  8. I have been following this thread with interest.

    If you Google - Tayside website, then follow the link for pmrfighters - we can email you some information from a leading Professor who is researching PMR aand GCA.

    A National Organisation PMR-GCA UK is in the process of being set-up and is seeking charity status. This organisation aims are Support, Self-Help and Research.

    I have been given to understand that it can take up to six months for the adrenal glands to go into full production - that is why it is recommended that dropping down from 5 mg to nil - should be a 1 mg drop every three months and then stop after the 1mg three month drop.

    CRP is a better measure than ESR - but both should be taken and read in conjunction. GCA patients need CRP at least three monthly, preferably monthly. GCA is not to be messed around with, it can lead to loss or partial loss of sight.

    mrs k

  9. Hi,

    I have been reducing my steriods gradually and it seems as soon as I get down to 3 and 4 mg. my pain comes back again. Last week I decided to go back to 5 mg which has helped a little. I also take 1 Ibuprofen Tablet 400 mg. most mornings and by mid afternoon I'm almost running around with no pain at all. Like you I have been a suffer for just over 2 years. When I was first diagnosed I was on a very high dose of steriods (40 mg) so am quite pleased that I have got down as low as 5mg. I am due to see my Consultant next week so lets hope my ESR rate is still coming down.

  10. Hi ritahart & all,

    That's interesting, I’ve seen Ibuprofen mentioned several times in posts and it finally brought back something I’d forgotten. When I first began to suffer from PMR symptoms I had tried some “over the counter” Ibuprofen and found it helped a lot. I had tablets from UK first which then ran out, so I bought a packet here in Sweden. After a few days I read the fine print and it says “For short term use, maximum 5 days in succession. Higher doses can involve serious risks”. I had been taking them for 10 days already so I stopped immediately. I then ended up in casualty after a few days with total PMR back.

    Since then I’d never considered taking Ibuprofen again, especially as the Prednisolone notes say that - taking non-steroid anti-inflammatory (NSAID like Ibuprofen) in combination with Prednisolone significantly increase the possibility of stomach problems.

    So now I’m wondering; is long term use of Ibuprofen considered ok?

    Is it ok to mix the drugs or better to stick to one of the other?

    All the best; davblo

  11. I was told not to take Ibrofen with steroids by my Doctor but someone I know was told by her Dr to take them short term only for something that was unconnected with her illness and is now suffering bowel problems !! Another friend has had an ulcer through taking them !! So I wouldnt personally take them with steroids but if need be I would increase my steroid dose slightly on alternate days for about 2 weeks and if you can rest !!

  12. Hello RitaHart

    I personally would not take Ibuprofen with steroids - both can affect the gastro intestinal tract so to take the two together is doubling the risk and I think you may find it says in the leaflet accompanying the Ibuprofen not to take with corticosteroids (ie Prednisolone). It seems that the people Mrs G mentions have borne out this risk. You can, however, take Paracetamol.

    To further elaborate, I was undiagnosed during the first year of my illness and spent 3 months in bed, any movement causing agonising pain all over my body, attending my hospital appointments by ambulance and wheelchair. The rheumatologist I was then under failed to diagnose me, so for 7 months during that year I depended on Ibuprofen and Paracetamol. Coincidentally, the Government introduced a new test that year within all our usual blood tests (you will only hear about this if your test results present a problem, but it's called an eGFR test). After one test, the GP rang to say that it was found that I had Chronic Kidney Disease as the reading was 50 and should be above 60. I panicked as I've had only one kidney since a child. Subsequently a kidney consultant confirmed that all the other tests showed no problems and it was just this new test that showed a low reading. I was then informed by a Pain Management Consultant that I should not have taken Ibuprofen for all those months as that can adversely affect the kidneys. Fortunately, I only took the bare minimum daily as I hate taking tablets, but as you can imagine I am left wondering if the Ibuprofen was to blame for affecting my kidney.

    Like me you have managed to come down from 40mgs in just over 2 years - I've been on 3mgs for the last 4 weeks after 3 months on 4mgs. I have had increased pain in the tops of my legs since reducing.....however, I don't want to speak too soon but the last two days have shown an improvement so if that continues it's taken my body a whole month to catch up on the new dose. I have to stay on this dose for 3 months in all and, if successful, will reduce more slowly next time, ie from 3mgs to 2mgs on perhaps alternate days for the first couple of weeks.

    It may be best for you to stay on increased dose for a couple of weeks and then try decreasing on alternate days for another couple of weeks before trying again wholly on the reduced dose.

    Hope all this is of some help.

    Mrs O

  13. Hi all,

    Thank you so much for your replies. I am very grateful and am very concerned about taking the Ibuprofen tablets now. It may be co-incidental but this morning I have woken with very little discomfort. It maybe that the extra 1mg of steroid is now kicking in, so I'm now going to stop taking Ibuprofen unless it gets unbearable.

    I must admit that my GP suggested that I only take Ibuprofen when I know that I am going to do excessive walking or some other kind of exercise. My Rheumatologist suggested that I take Ibuprofen when I first reduce my steroids if I'm feeling very achy. I am due to see my Rheumatologist week after next and will certainly have discussions with her about taking the Ibuprofen or just increase my steroids.

    By the way it's quite comforting knowing that so may other people are suffering with polymyalgia and I'm not alone. I didn't realise that there were so many sufferers.

    Thanks again!

  14. Everything has been said - but I was told no anti-inflammatory drugs at all, either prescribed or over the counter.

    I have a good working relationship with my Chemist. Anything new that is prescibed, before the prescription is filled out - the Chemist checks the new item for compatibility with all the current tablets I am taking. If I want an over the counter drug - the chemist checks that out as well.

    Trust your Chemist, they know more about drugs than anyone else.

  15. I discovered I had pmr in March 2006 after a visit to Toulouse with my daughter, and after 2 days tramping the streets looking for a room for her I could hardly walk - all the usual symptoms of thighs, shoulders etc then began to worsen, I couldn't bend down to pick up something off the floor, nor turn over in bed, and I thought I was getting VERY old (I was then 60).

    The usual tests weren't conclusive but I suddenly remembered my mother had had pmr - my dr sent me to a rheumatologist but 30 mg steroids did the trick and I was soon rejuventated (after about 2 weeks). Now I am trying to reduce from 5 mg but I was most interested in all the experiences that said how hard it was, and also that perhaps women in particular are keen to get off the prednisolone. I feel fine really apart from occasional stiffness although last time I tried to reduce the dose I did get painful legs again. I run every morning (only 15 minuntes) and that seems to get me going. Incidentally as no one seems to know what causes it, I know I did have a very painful ulcer on my toe plus some sort of flu which perhaps contributed to triggering the condition. Thank you all for fellow feelings!

  16. Dear All, As a \"new\" sufferer ( 2 months) you have all been most helpful but two questions. As I try and reduce the pred. dose I am expecting to get more aches and pains until my body, hopefully, adapts to it. Also if I do too much one day I expect to suffer for it the next day. But it doesn't always work out like that, yesterday for example I had a really bad day for no apparent reason.Is this just something to expect from time to time?

    Also if I have a day coming up when I really want to be as fit as possible, something really important maybe, can I take more prednisolone to make sure I can cope? If so how much in advance and how does it effect the overall regime of lowering the steroids?

    It would be really good morale wise if one could have \"occasions\" to look forward to now and then without having to worry about cancelling!

    So how do you all manage this aspect of things?

    Green Granny

  17. Green Granny

    As someone who has only been diagnosed for 2 months, I am curious.

    How high a dosage did you start on and what I have you reduced to and how?

    Did your GP diagnose you and have you seen a Rheumatologist.

    What information, if any, have you been given on PMR?

    Most people have a basic regime to follow, but it can and does very from person to person as each of us is different and our bodies re-act in different ways.

    Google Tayside pmr support group (there are now seven support groups throughout the UK) - click on Our Stories, go to Story Four - use the email address for more information.

    But keep on coming to this site, the information provided is valuable.

    mrs K

  18. Dear Mrs K. Well I guess it is now nearer to 3 months. My mother had PMR so I wasn't surprised to hear that was, presumably, what I have. No I haven't seen a rheumatologist. My doc. has muttered but no more. He started me on 20mg. pred. and I came down to 15 mg after two weeks with not too much trouble. However after then it has been up and down - Dr is too keen to get me down I feel. He has given me no timetable but left it to my discretion -\"how I feel\". I am not clear whether I should have let my body get used to the new dose and not be showing symptoms before further reducing or what! But thinking ahead to a hoilday at the end of May I just can't see how I could manage it, hence my question about upping the dose to cope with extra situations, although I see that somebody else copes with a situation where there is extra walking, for example, by taking painkillers ( in my case Co-Codamol. This site has been so useful as has talking to one or two other people I know. However I have come acros people who hardly seem to have had any problems at all and have apparently only had PMR for 6 months. Which makes me think am I making a fuss about nothing!!!!!!!

    Everybody here is so helpful and seems to have a real concern for others. Great! So thanks. green Granny

  19. Green Granny - I don't live too far away from you, in Leatherhead, but you are the first fellow-sufferer I've come across locally. Responding to your query about holidays, what kind of a holiday is it? Are you going abroad? If you see other posts, you'll see that I've had PMR for a fairly long time, even so, I do manage to get away for a holiday or a short break two or three times a year. The hardest problem I've had to solve is sleeping - I've been unable to sleep on an ordinary mattress for some years, problem solved at home by using memory foam. If hotel cannot supply pressure mattress (and some will) I take a couple of sheets of foam rubber with me and sleep on those. We do now go to places where we (and my problems) are well known, but I did have some difficulty with this at first. As for the holiday itself, I usually make sure that I have a good supply of prednisolone with me as I've twice had really bad flare-ups while away.

    If you'd like to contact me direct, please do, my email should be visible on this site.

    Nefret

  20. Hello again Green Granny

    I haven't heard about anyone else upping the steroid dose in order to cope with a special event and I have been told only to take paracetamol if in need.

    However, I think the secret is more to come down very slowly on the steroids, preferably if and when symptoms are at bay and when the ESR and CRP blood tests are normal - you don't mention whether you have actually even had these blood tests when reducing.

    I haven't come across anyone who has recovered from PMR or GCA in only 6 months on steroids.........it isn't even enough time to reduce the steroids slowly which is the recommended route. It makes me wonder if such a case may not have been PMR in the first place.

    I am just like you in feeling that I can't go on holiday and with myself I just wonder if it's a loss of confidence due to PMR/GCA as much as the symptoms. However, Nefret appears to cope with holidays and has given us some very good advice as regards taking pieces of foam in case of uncomfortable holiday beds.........I appreciate this would be a problem if travelling by plane and not by car!

    As you say, it's a comfort receiving these tips from others.

    Do hope you manage the holiday - let us know and good luck.

    MrsO

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