Reducing again.😟

Feel so upset, started to reduce from 15 down to 12.5 on Sunday as directed by my consultant and today it looks like I'm having a massive flare up. In loads of pain, stiff hips, legs, and arms and feel exhausted. I've been to see the doctor and having a blood test tomorrow. She was saying I will need to go back up if my results show high markers. I can't seem to reduce without pain and feel really ill. Has anyone els had this and how do I cope with the pain? She game me 30g X 4 per day if needed of codine but not working. I can't stand the pain. 😟

12 Replies

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  • You shouldn't have to wait for the blood test results. They may not be conclusive anyway. The only way is to increase the pred to a level at which you begin to feel comfortable again. How long were you on 15 and was that your initial dose?

  • Three weeks as he said.

  • Oh dear, Zellamze, you seem to have got into a bit of a roller coaster ride with the steroids, and I wouldn't be surprised if it all stems back to that initial reduction routine when you went from the 15mg starting dose to 5mg in just 3 months. I believe at the same time you were also doing a lot of exercise, including at the gym - that much exercise at the outset of treatment doesn't really give the best chance for the steroids to get control over the initial inflammation and keep it there.

    When you returned to 15mg on this last occasion, did you have a good resolution in your pain - at least around 70%? If so, then you might be wise to return to 15mg to see if the pain resolves again, in which case, you may find reducing by just 1mg at a time in future helps to keep the inflammation under control. This has proved successful for others in the past and it will hopefully prove more successful for you, too.

    You sound in really severe pain and it is important that the inflammation causing that pain is brought under control to avoid the risk of other illnesses creeping in through the back door, not least the linked condition, GCA with its risk to eyesight. As Annodimini has already said, you shouldn't have to wait for blood test results - not necessary to endure such pain when it can be avoided at the right dose of steroids.

    As for how to cope with the pain, I'm afraid there is nothing other than steroids at the right dose - codeine and the like rarely have any effect on the pain of PMR. I do hope that if you increase your dose tomorrow, you will have a much better day with more to follow.

  • I will increase today as I'm still in pain. And yes, codeine had no effect yesterday. Thank you.

  • My doctor twice reduced me from 15 to 12.5 and both times I had a flare. After that I started reducing by 1 mg and so far have avoided flares. I've been on pred now for a year and am just between 12 and 11 using dsns reducing. Each time I went back up to 15 I stayed there for 6 weeks.

    Hope you can get the pain back under control with 15.

  • Thank you.

  • Horrible isn't it?

    I printed out the the dead slow reduction that PMRPRO put on this site and gave it to my consultant to look at. She agreed at the lower dose it was a good idea.

    For me at the higher dose she recommended reducing this way, 12.5 and 12 on alternate days for one month, then 12 and 11.5 for the next month continue in this vein until I see her in 6 months time. But, if I feel a flare, I'm to increase a little, for just a while. Of course see my GP in between for check ups.

    15 to 12.5 would have effected me in a bad way for sure.

    I hope you feel better soon.

  • Thank you. I'm going to increase today.

  • I have gca pmr I've been on steroids 18 month I started 60 mg steroids I slowly came down depending what levels esr crp blood was. I'm down to 15 mg when it flares up it usually means more steroids. There's some good books on this living with gca pmr very helpful Oscar 212

  • I am so sorry you have had a flare. Some people can reduce that amount in one go and some cannot, I am also one of the ones who cannot, although my rheumie seemed to think everyone can, in the hell for leather reduction to below 10mg. If anyone offersyou pain relief for PMR other than pred the chances are it will NOT work and doctors should know that. Of course painkillers may work if it is something else, which of course it could be, but in your case unlikely. My rheumie only gave me 5mg tablets and did not tell me I could get smaller ones. My first reduction I was ready to go to A&E I felt so bad.

  • Gosh, I know how you feel as its so painful. Do you find stress brings it on too? Every time I have a stressful situation my hips, groin and shoulders hurt.

  • Stress and PMR make poor bedfellows, yes! In some cases it seems to have been the final straw that triggers the PMR developing.

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