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Increased pain when reducing steroid dosage

  1. I am interested to know if any of my fellow PMR/GCA sufferers out there have experienced worsening symptoms when reducing steroid dosage which they have put up with for a couple of weeks rather than increasing again immediately? If so, has anyone found that the discomfort has eventually eased on the decreased dose and how long has that taken, please? Just wondering, as 7 days ago I decreased from 4mgs to 3mgs and the legs have worsened along with a little discomfort in the shoulder area on one side - this is the stage I was at 12 months ago and then continued going up and down between 10mgs and 5mgs for the year, so if I have to increase yet again, I feel I have not improved in the whole 12 months! Have now been on steroids for 2 years. Very depressing and disappointing until I get my head around it again and just accept it! Best wishes to all of you like people out there! The mornings are the worst (can't get my socks on - not good with this Jack Frost around!!)

    MrsO

  2. Hi

    Like yourself, I too feel pain when reduceing the dosages of the steroids . The last two times they were lowered the pain lasted approx 2 weeks but this time dropping to 7.5mg I am on my 4th week and the pain is most definately getting worse. I am lucky in a way that my G.P allows me to control what pain I can withstand because he knows how I feel about the weight gain. lol I know how you feel about your socks, If you had seen me trying to put trousers on this morning, I looked like something from a comedy! Not funny really as you and I know how painful it is. Well good luck and keep smiling smile

  3. I am male and 71. Started on prednisone in June, 2005. To me it seems as if most people - especially women - are too eager to get off pred. Don´t forget that it is the pred that helps us to live a reasonable life! I think that when you have the right dose, you shouldn´t have much pain but when you taper you probably will get pain and need some extra pill for that. I started on 20 mg in June 2005 and when I reached 5 mg it took me a year to get below 5 mg even if I tried 0.5 mg at a time! I am free from pred since the middle of December 2008. It seems that the pain hits in different parts of the body all the time. I took a diclofenac against the pain and it helped. I am glad that the pred has helped me to live a very active life and instead of reducing too fast, I stayed until I felt it is time. I used a regime where I mainly tried to get over to the new dose during a longer period - about two weeks. From 5 mg and below, I tapered 0.5 mg at a time. I took the new dose one day, then the old dose two days and repeated this once more. Then a week with alternating new and old dose. This way I got below 5 mg at last and also further on down. The body has time to adjust to the new dose. If you go from 5 mg to 4 mg, you reduce by 20 % and that´s a lot. To sum it up - take it easy andf go slow and thereby probably avoid a flare-up

    Greetings from Sweden

    Ragnar

  4. I too have been having problems with reducing the steroids. Having started on 15mgs last august, I felt much better(although the pain has never quite gone away), my doctor said to reduce to 10mgs. I got down as far as 7mgs when the pains got so bad I had to go back to 10mgs for a month. :cry:

    Unfortunately, my ESR levels seem to be going up slightly every month instead of going down. I have now gone back to 15mgs..back to where I started!! Has anyone noticed the pain seems to move around? Staying in one place for a while and then moving on?

    You are right about the mornings...just putting on socks can be a very dangerous occupation!! Also jeans and boots!!Sitting on the side of the bed and having to lift one foot up with both hands to put across your knee..sometimes I feel like I'm 82 instead of 52!! :roll:

    Anyway..chin up, hopefully it will get better,sooner rather than later.

  5. Thank you to all you lovely people who have kindly replied to my query - where would we be without such friendship? As for Ragnar in Sweden, your regime sounds very interesting, especially as you have managed to get off the steroids - well done you. I will see how the next week goes and put your advice into practice if needs be - when I read your response to my husband, he said that it was sensible male logic.........enough said!

    Seriously though, I do wish you well and it would be wonderful if you kept in touch on this site in the future to let us know how you are getting on as we so desperately need to hear from people like you who have succeeded in making a recovery and long may it continue.

    Nannypat - I don't know how you manage to put one foot across the other knee for your socks and boots.........I can only do this by standing at the foot of the stairs and using the next step to do this, but where there's a will there's a way, as they say!

    Chisnel - I'm going to keep that thought in my mind of you having trouble getting in your trousers this morning and each morning when I'm struggling I'll think of you and chuckle and that will be a good way to start the day!

    The very best of luck and good wishes to all of you.

  6. Hi, I've been searching the web for more information and just come across this site. I went down (literally) with PMR May 2007 for no obvious reason. Over about 2 weeks it spread from stiff neck to shoulder, back, and finally legs. After responding well to a test does of 15mg prednisolon I was put on 25mg which left me with almost no symptoms at all. I was left to try to reduce the dose myself. I got no clear answer as to whether it was best to remain symptom free all the time or whether I should “push” it by taking some discomfort. The only hint was that it often clears up after about 1 year. So over the first year I came down gradually to 10 / 12.5 mg with the dose always being enough keep the stiff neck (first symptom to appear) at bay. Now after 18 months and no sign of total recovery I’ve started to worry about long term effects of the drug and take the tapering off more seriously. One problem is that I’ve seen no clear account of how slow one should take it. It’s always said that the body’s production will have stopped and need time to recover, but how much time will that take; at what dose level does that occur and how do we know whether it has re-started or not? I did see some advice (like Ragnar’s) which advocated taking the dose on alternate days, and possibly having different doses in a sequence. It was said that each dose lasts one and a half days in the body, so you get an overlap effect from day to day. The doctor’s never mentioned any of this when I started. Anyway I took two weeks on one dose level as being “slow” enough and got down recently to 5mg with a mild stiff neck. (I’d be interested to know how others get their small changes in dose. Ragnar mentioned 0.5mg change. I’ve only got 10mg and 5mg tablets and I get 2.5 by breaking a 5mg in half. I can’t get anywhere near 0.5mg change). Anyway, if I try 2.5mg then the shoulders react after one or two days, so I then take 5mg again and try 2.5mg the day after. Another trick I’m trying is to take 2.5mg in the morning (actually half of a 5mg tablet) then if I feel more symptoms returning by late morning I take the other half (2.5mg) to make up the 5mg. So far I only need the extra every other day; so I’m hoping to get away with more 2.5mg and less 5mg as time goes on. One worry I have is that I developed cold/flu symptoms 2 weeks ago and the “shivers” haven’t gone away. This gave me a push to chase up a doctor and I finally got an appointment for next week. Hopefully I’ve get to learn a bit more then.

    Also in Sweden; davblo

  7. Hi Davblo

    Sorry to hear of yet another person with PMR but welcome to another Swedish sufferer to this site which I'm sure you'll find both helpful and reassuring in exchanging information with others.

    The Prednisolone tablets come in 5mg, 2.5mg and 1mg doses, the first two are obtainable in enteric-coated (better for the tummy). So you don't have to break the tablets in half and hopefully when you see your doctor he will prescribe you the different dose tablets to make it much easier for you when you are reducing. I sympathise with you with the pain usually returning in the neck or shoulder area for that is what happens in my case if the symptoms worsen on the decreased dose. I started on steroids 2 years ago but at a much higher dose of 40mgs as I was diagnosed with both PMR and Giant Cell Arteritis (a related condition). I'm still struggling through the first couple of weeks on my newly reduced dose of 3mgs and hoping my body's natural cortisol catches up soon or I will be going on Ragnar's regime. Good luck with your doctor's appointment.

  8. Hi MrsO,

    The tablets I get here are called “Prednisolon Pfizer” and, according to Pfizer’s web site, come as 10mg, 5mg and 2.5mg. I only got 10 and 5 on my prescription. At one stage I was breaking the 10mg in half (for 5) to save the 5mg which I’ve recently been breaking in half to get 2.5mg! I’ll ask the doctor for some 2.5mg when I see him/her, (guess I’ll be breaking them in half to get 1.25mg!).

    I still find it amazing that there was no “follow up”. After the first session of blood tests they just ignored me and I haven’t seen a doctor for a whole year (mostly it was the district nurse anyway who did the blood tests). I’ve noticed similar comments from others on this site.

    All the best; davblo

  9. Hi again Davblo

    I find it amazing that you have only been checked once in a year for your PMR. It is usually normal here once the Doctor diagnoses PMR or GCA from elevated markers in both ESR and CRP blood tests, he starts you on Prednisolone and refers you to a hospital Consultant who then usually carries out 3/4 monthly blood tests and reduces the dosage accordingly. When you eventually get down to the lower doses, you can then manage the increases and decreases yourself but still continue seeing the consultant 3/4 monthly. The blood tests are a very good marker of how the body is doing. From what you say, you do not appear to be having these tests. Also, I find it difficult to know how you can possibly manage without 1mg tablets as here once you get below 5mgs you then start reducing by 1mg at a time, and then in my case stay on each dose for 3 months At the outset, I was told that it takes 18 months to 2 years to resolve, but obviously as we see from this site it can take considerably longer and we have to remember that everyone is different. You say that you are still suffering the effects of flu after 2 weeks - this is because the immune system is depressed by the steroids..........it took me a month to get over a virus that's been rampant in this country and that was with antibiotics!

    Do hope when you see the Doctor you will be able to question whether there are any steroid tablets available in 1mg and then you can at least do away with trying to cut these already tiny tablets in half!

    Hope this has been a bit helpful and good luck next week!

    Mrs O

  10. Hi, there are 1mg tablets available. I am reducing and my registar prescribed 1 mg tablets yesterday. I am going very slowly reducing 1mg a month but I must admit, I already have pain back as well :evil:

    I would prefer to take painkillers though than go back up - too many side effects

  11. Hi,

    Yesterday, I posted an answer but it has disappeared, so I try to repeat what I had written.

    In June 2005 I started with 20 mg and tapered 2.5 mg every 3-4 weeks. When I came to 10 mg, I tapered 1 mg at a time and stayed on the new dose at least a month. When I reached 5 mg I had to stay there a year as I went up and down when tapering 1 mg. After that year I started tapering 0.5 mg and took two weeks to go over to the new dose. First one day with the new dose, two days with the old dose and after a week I alternated new and old dose for another week before going over completely to the new dose (after 2 weeks). Then I stayed on the dose for at least a month. Often more. I also chose a date when I had nothing important the first week or so after starting the tapering (to avoid problems when tapering). In Sweden, we used to have 5 mg, 2.5 mg and also 1 mg tablets. They all seemed to cost the same per tablet although they had such a different strength. I don´t know if it for cost reason that they don´t have 1 mg any more. We have subsidized medicine and after having paid about £ 150, we have free medicine a year from the start of the new payments. We have a staggered discount and at last we pay only 10 % of the real cost before coming to 0 - when we have paid £ 150.

    I think (however, I am no doctor) that when you reach 5 mg, the dose is so low that there cannot be any bad side effects and you don´t have to worry about taking pred. I also think that leading an almost normal life is more important than trying to get off pred as fast as possible. To me it seems as if especially ladies want to get off too fast and then they have flare-ups and have to start all over. After 3 ½ years, I got off pred some week before Christmas and I am still OK without pain. I never had any hard pain as most of you seem to have, so I guess I have been lucky.

    At the end of January, I spent a week in London together with my wife and two friends. I just had to take it a bit easy when walking, especially in stairs and uphill. But I could participate in all activities. I am male and 71, so when I sometimes feel tired of walking, I really don´t know if it is from pmr or from age - maybe both

    Finally I hope that you all get off pred - but take it easy and don´t push too fast!

    Ragnar

  12. I forgot to mention that we don´t have 1 mg tablets any more. I have used 2.5 mg tablets and split them into four parts of each 0.65 mg. Therefore I really tapered 0.65 mg at a time the last year or so. It seems that many countries don´t have the 1 mg tablets.

    Ragnar

  13. Hi again Ragnar

    I do hope a lot of PMR/GCA sufferers see your latest e-mail which is both so informative and reassuring especially in view of the fact that you have successfully come off the steroids. I particularly hope that Davblo (like you also from Sweden) reads it and finds it helpful.

    I can't imagine that you manage to cut the 3.5mg tablets into 4 - I can only assume that they are a much larger tablet than the Prednisolone we are supplied with in GB.

    I had a very painful day yesterday coping with my 1mg reduction to 3mgs after 3 months on 4mg but happily today has been almost back to normal (or as normal as normal can be with PMR) but if by Sunday (2 weeks on the lower dose) I become more symptomatic again, I will try your regime and will certainly do it when and if I reduce to 2mgs.

    Having just read your e-mail to my husband, he has since called out to me that he is reading a book about ancient England called The Pale Horseman and it keeps mentioning men by the name of Ragnar - how's that for coincidence?

    I have to mention that I am so impressed by both your and Davblo's command of the English language.

    May your good health continue.

    MrsO

  14. I've just been reading Davblos note..I cant believe that there has been no followup either! :shock: I have a blood test every month for my ESR levels taken by the doctors nurse (I dont have to see him unless something drastic happens). I then get a phone call the next day to tell me whether the levels have gone up or down. (lately it has been mostly up). I then get told whether I should stay on the dose I've been on for the last month or if I should go up or down.

    We in the Irish Republic have 5mgs and 1mg tabs. Also our medication is subsidised in a way... We pay up to 100 euros for all medication (if we are on medication) per month...That is to say when the price of my husband and my medications are added up for the month, if the total is 150 euros then we only pay the 100 euros. This may seem like a lot of money(and it is) but when you calculate for my husbands blood pressure tabs and mine for steroids,painkillers,difene,tabs for my stomach, eltroxin for underactive thyroid, folic acid and b12 shots for pernicious anemia etc its really not too bad at all. My husband says that I rattle from all the tabs!!! :roll:

    To Mrs O.. tried standing at the bottom of the stairs to put my socks on...fell over!!! :lol: No balance you see!! The will was there but there was no way!!!

  15. Hi again,

    Re: command of English; thanks MrsO, but I have a confession. I'm actually British, (born in Bristol) but I moved to Sweden over 14 years ago. On the other hand I have been learning Swedish and now I'm pretty fluent; although it's quite a challenge when trying to get to grips with all the medical terms as well.

    The pred tablets here are very small, even when whole. So breaking them into pieces is not that easy. I'll be happy if I can get some 2.5mg.

    Today I got fed up with the shivering I've had for the past two weeks and tried going back up to 7.5mg :cry: It feels a bit better, but I expect it's take a few days to really tell.

    I've got a long list of questions for the doctor on Monday, I'm not going to give him an easy time!

    All the best, davblo

  16. Nannypat - It was interesting to hear how you pay for your medications in Southern Ireland - it sounds a little more expensive than over here but, on the other hand, it does sound as though you are being very well cared for in having appointments every month. When you reach pensionable age, hopefully your prescriptions will be free - I do hope so!

    So sorry to hear what happened to you when you tried to put your socks on at the bottom of the stairs! sad I don't suppose you've tried it again since!!!! But with a will and sense of humour like your's, I am sure you will be able to do it eventually. Your entries make me chuckle, so keep smiling Nannypat.

    Best wishes,

    Mrs O

  17. Davblo - oh well, I still think your English is good!!! smile I remain amazed that you say your Prednisolone tablets are very small but still manage to cut them in half or even into four. Even the pharmacist here has refused to try and do so!

    I expect you've noticed on this site that we have a Professor doing research into PMR/GCA and, who knows, one day there may be a cause and a cure, if not for us then hopefully for the next generation. Meanwhile, we all have to keep positive and keep taking the tablets!!!

    Mrs O.

  18. I have also been taking Pred for 2 years and have come right down to 1 mg. When I saw the doctor before Christmas he said that the ESR was normal and that I could go down to 1 mg (I was taking 2 mg then). He asked me how I felt and I said I was ok apart from this really dreadful pain in the tops of my legs. He told me that the pain I had was nothing to do with PMR!! He said that I should reduce to 1 mg for about 2 to 3 weeks and then stop taking them. I have 2 more tablets left to achieve this but I am having more and more pain..the same pain that he insists is not part of it.

    To say that I am now confused would be an understatment. I'm only wondering if once I finish with the steroids will I be able to find an alternative out there which may help!! What I don't know but perhaps it's time to do some research!!

  19. Mrs P

    I'm not surprised that you are feeling confused. My rheumatologist actually commented on pain which returns at the top of the legs and down the front of the thighs, and that is exactly where my pain has worsened in the last two weeks since reducing from 4 to 3mgs. Also, when I got below 5mgs my rheumatologist is leaving me on each reduced dose for 3 months. Is it possible that if your pain is still worsening that you could have another blood test to see if it now shows an elevated ESR (I also have a CRP blood test which elevates when my symptoms worsen)? If you do continue reducing and you are still in pain, would it be better to reduce on alternate days rather than daily? If you read Ragnar's entries on this page,you will see that he very slowly reduced by very tiny doses (cutting the tablets in half) which enabled him to finally come off the steroids. Good luck with whatever you decide to do and I do hope that symptoms improve for you.

  20. I've just joined this forum, I'm 59 and have had PMR for about 9 months. I was prescribed 35mgs of Pred for the 1st month but I had some terrible side effects - weight gain, mood swings, bad temper (!!) heightened BP, palpitations - the last 2 required other meds fhs! So the dosage was reduced to 20mgs and I have been reducing every 10 days since then.

    A month ago I had another blood test and my GP told me that the ESR levels had gone almost back to normal - whoopeee, I thought I'd get the meds down even quicker. MISTAKE!!! At 3mgs, I started to feel really bad again sad

    My pain is mostly in my neck, shoulders, arms and ribcage.

    But what I wanted to ask is if any of you feel nauseous as well?

    I do and it's almost as bad as the pain. It's really difficult to actually describe how I feel - just washed out, tired, major headaches every day. My poor DH is getting a bit fed up hearing about it and tbh, I'm getting fed up telling him - it's now getting rather boring feeling so damned unwell all the time!

  21. Beethoven

    So sorry to hear of yet another new person to the site who is suffering from PMR.

    You ask if anyone has felt nauseous with PMR - you may get other replies that may help; however, in my experience I suffered nausea and sickness just before being diagnosed in March 2007 with both PMR and GCA (Giant Cell Arteritis which is linked to PMR) the nausea being caused by the GCA. I was put on 40mgs of Prednisolone.

    Also, I note you mention you are suffering from terrible headaches - these also were a major symptom of my GCA diagnosis.

    From my experience, it seems as though you have come down very quickly from 35mgs to 3mgs in only 9 months, hence the flare up. I feel sure you will be advised to increase back up - in my case I have increased up and down between 10 and 5 a couple of times in the second year, but this time have been advised once below 5 to keep on each dose for 3 months.

    Hope this may be of some help and hopefully others will have some useful tips from their experiences. It's no fun but does get easier. Good luck.

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