High dosage again

Posted , 9 users are following.

Hi have been back to the Drs again today as still in pain, left shoulder, neck & arm. Also getting tingling and pins & needles in left arm and hand. Was on 7 5 preds for the last 6 weeks went down to that from 10. He's now said go back up to 20 for a week then 15 for the week after, then go back to Drs. Am feeling very down at the moment and sooo tired.

2 likes, 23 replies

23 Replies

  • Posted

    Hi Jo, what a bummer! I just recently saw my rheumatologist and his suggestion for dealing with a flare was to up the dose of preds to 20mgs for 10 days then reduce it to the dose I was on prior to the reduction dose that caused the flare.

    however, why did you make such a huge reduction from 10mgs to 7.5 mgs? If you had taken the reduction in a smaller amount you might have been ok but because of the giant reduction you won't know if you would have been ok at 9.5.

    i say slowly but surely. I follow Eileen's dead slow and almost stop regime but only ever reduce by .5.

    of course you're feeling very down at the present, but get the flare under control and try again more slowly. Good luck, christina 

  • Posted

    I did say to him once I ge to 10 again I shall go down even more slowly as drop to 9 instead of the 7.5 drop, he said was good idea.
    • Posted

      Good! As I say get over this flare and then go slowly but surely. You mention 9mgs, well I go even slower than that, from 10mgs I have gone to 9.5 to 9 to 8.5 to now I'm on my second day into my 8mg reduction. But I spend one month on my old plus now dose, then a month to six weeks at the new low dose. My rheumatologist endorses the very slow method. Good luck, Christina 
  • Posted

    It always worries most of us if we have to up our pred.  I'm surprised he said to go back up to 20mgs though.  That is some jump.  I worry if I have to go up 2 or 3 mgs.!!  The tiredness is a beast, isn't it?  I can often cope with the pain, but the tiredness!!!😔😔😔
  • Posted

    Thankyou  ladies. Have started the 20mg today hopefully it will kick in quickly. Will keep u posted. Hope u all have a good day.💐 🌞
    • Posted

      I too have a flare up for last 3 weeks was off Pred altogether but now on 2mgs daily Was trying to keep to that but Doc says blood test and bag to 5 possibly if not improving.I am very still legs and shoulders first as I get up in morning but by lunch time all stiffness gone.A bit reluctant to up Pred but weary of pain and stiffness in morning. Seeing a Rheumy today over hand problems. Blood test to morrow .Will decide then I think .
    • Posted

      Hi I always feel better about lunchtime. But can feel the pain coming back during eve so difficult to egg comfortable and very stiff and painful in mornings. I didn't want to up theorise bug ja suppose it's better to get some pain free time if it works this time. Hope u get on ok Beatrice.
  • Posted

    Jo,

    I might not be doing this right, but here's how I'm handling the reductions.

    I do follow Elaine's dead-slow method.

    At doses below 20 mg, I have never been pain-free. I'd say I'm 50% pain free in the AM, and by evening I'm 80% pain fee.

    I've just gone from 10 mg to 9 mg, and I do have more pain in my neck, shoulders, upper legs, and also have tingling on my right shoulder blade.  But my inflammatory markers from blood tests are all within normal range, so even though I am in more pain I am not going to go back up in my dosage.

    Although I am very,very grateful for the existance of prednisone, I am also leery of its known side-effects, many of which I am experiencing.  My goal is to get off the prednisone as soon as I can, although I realizet that might not be for years.

    All the best!

    • Posted

      Hi Bob I do hope one day to be pain free.again.  I have been pain free, it was last Sept, it took me 2 years to come off them, started at 20 mg. but by Nov  of last year my psr had gone up again so had to start back on 10mg, which obversely was not high enough. 2 months off the pred and pain free. Was short lived but wonderful, best wishes 
    • Posted

      Hello Bob, I understand your worry absolutely regarding the side effects of prednisolone but all the same, recovery from PMR is not a race. As Eileen says, it came when it wanted and it'll go when it wants to!

      many patients are never entirely pain free whilst on preds. I am very lucky in that I am so identifying flares is easy, but for those of you who are never totally pain free you must learn to recognise when the everyday pain of PMR turns into a flare. For example, if whilst you are on one dose you suffer 50% PMR pain, if you reduce to your next pred dose and the 50% pain level after a couple if days increases to 60% then 70% etc then that tells me you are beginning to experience a flare and as much as none of us like to increase our dose of preds you may have to and quickly in order that the flare is kept under control.

      remember that blood tests are not 100% accurate, so just because they say they are within normal range it doesn't always mean that. Eileen for example has had PMR for over 10 years and not once has her inflamatory markers ever been raised. 

      Please bob, just be careful and if at any point you really do feel as if the PMR background pain is getting worse do consider upping your preds to get the inflamation back under control. Also I sort of follow Eileen's dead slow and almost stop method but I only ever reduce by .5 and not 1mgs. All the best, christina 

    • Posted

      Hi Christina,

      Yes, I understand what you are saying and do appreciate your advice.  

      In the end, we are all on a very personal journey aren't we.  We take in as much info as we can and then do whatever we think is the right thing for US.  

      As so many of us say, thank goodness for the people on this forum.

       

    • Posted

      But the catch there is that by being set on reducing and not increasing by a small amount when really it is needed you always run the risk of a full-on flare and return to the top dose and starting over again. So saving 1mg now may mean being back to 15mg or even higher to control a flare. - exactly what you didn't want to do and the doses at which you are more likely to develop problems.
  • Posted

    Hi Jo, please don't lose heart, but it does get better, not cured but managed.  The tiredness is always there, it too can be managed.  Pace yourself when you can, manage what you can do, forget about the things you can't do.  Rest, rest and more rest if you can.  Regards Pat

     

  • Posted

    Have been back to Drs today as no better. When I first started 20mg Preds over 2 years ago that dose started working with 10 days, but not this time. So Dr thinks I might now not have Polymyalgia and it's something else. I have to have a neck X-ray & the prob an MRI scan. How can the Preds suddenly stop working. I'm urge I've got it still. I'm now very confused, still have the pins & needles in my arm and hand several times a day. Dr says must get u off high does of Preds quickly now as not working, so 15 then 10 for a week then to 5. What is going to happen to me 😪
    • Posted

      Often the pred doesn't work the same with a flare but takes a bit longer. And not everything is PMR - there are a few things that cause very similar symptoms and don't respond to jsut oral pred - sometimes an injection is better to get it in the place it is needed at a higher dose.

      However - your complaint of pins and needles isn't typical of PMR but more in line with something called myofascial pain syndrome which causes back muscles to go into spasm and pinch nerves causing referred pain and so on. It is often found alongside PMR but responds far better to targetted local treatment rather than oral pred - cortisone injections into the trigger points which are in the shoulders. mid back and lower back, in each case alongside the spine about 2-3 inches away.

      I have always found Bowen therapy helps a lot too - non-invasive and you don't need a doctor to prescribe it, just you have to pay the sessions of course. You know within 3 sessions at most if it is going to help although you may need a few more for best results. Often just one session will make a difference. It may not get rid of all the pain but getting rid of a fair bit makes such a difference. Quite a few people on the 3 forums have tried it and found it has helped.

    • Posted

      Oh Jo, as Eileen says often flares are much harder to pull back and control, I know because when I had my flare in December last and I went back up to 10mgs it definately took at least 6 weeks to get all the inflamation back under control. Also as Eileen says many of us suffer from multiple medical problems, and some of those problems may not respond to preds because they are unrelated to inflamation, so although you are worried that the preds have suddenly stopped working, perhaps they haven't are are happily controlling the inflamation that's causing some of your pain but as I said are doing nothing for the unrelated medical problems.

      however, I would be worried too if my Dr wanted me off preds as quickly as he now wants you off them, after all 2 years to be treated for PMR isn't that long and you only had to up the preds following a reduction from 10 to 7.5 which as I said at the time was too great a drop and I think it was that drop that caused the flare not the fact that you don't have PMR and or the preds no longer work. Eileen, what do you suggest re the weaning off of preds? Regards, Christina 

    • Posted

      In terms of stopping pred altogether after a relatively short course he's using a perfectly normal scheme. I'd hope he might slow down when he gets back to 5mg though because it is such a short time since Jo finished pred the first time round and has been back on pred for a while. Most experts reckon it takes at least a year to get things back to normal after stopping pred. 

      And of course - this is effectively a relapse so could behave totally differently from the first lot. It does happen. If things get a lot worse as you reduce the pred dose I'd also hope he would change his mind.

      Is this a GP Jo or is it a rheumatologist?

    • Posted

      Before I was diagnosed with PMr

       I was given 6 lots of cortisone injections and that didn't work either. Also I paid out nearly £300 for massages and that made it worse.

    • Posted

      In PMR massage would make it feel worse. Bowen is very different and won't release the cytokines into the system which is what massage tends to do. Did you have no improvement at all with cortisone injections? That is often how PMR is diagnosed - a random cortisone injection for shoulder pain and all the others aches and pains improve.

      That aside - you need a specialist now, your GP is out of his depth. So might a rheumatologist I suppose but there is a chance they may have a broader view.

    • Posted

      No improvement at all with cortisone.. I was diagnosed with PMR as I was unable to move my arms up or down or move my neck. Was as stiff as a board in soo much pain and never stopped crying
    • Posted

      In that case it is unlikely to be the PMR we talk about here. But PMR is only the symptom of an underlying disorder and there are several things to rule out and that should be done before deciding it is PMR, especially if corticosteroids don't get a good result. One is vit D deficiency - has your GP checked that? Or it could be purely mechanical. 

      I do hope you get an answer soon.

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