Anybody get breathing/chest problems when you reduce the dose?

[tangocharlie]

I've tried tapering my dose from 7.5 to 7 using the recommended methods on here eg 'Dead slow and stop' but after 2 consecutive days on 7 I get breathing problems, chest pains, like a twitching feeling in my chest, palpitations etc. I struggle to walk up a hill I can normally do quite easily. When I go back up to 7.5 these symptoms disappear. Could this be something other than PMR being 'masked' by the steroids or does anyone else have this problem?

I had the same problems about a year ago when I tried to get from 5 to 4.5 and it made things worse so I ended up back at 9 then 8 then 7.5 where I've been for 6 months now. Just over 3 years on steroids now, and a year before that until being diagnosed.

I've tried several times now to follow the slow withdrawal method. Any other ideas? I'm trying alternate days on 7.5 and 7 but feeling very achey all over especially in shoulders, which I think is some kind of relapse.

If anybody has similar problems please share. Thanks TC

[PMRpro Ambassador]

I think your body is telling you that you have got to the right dose for you at the moment. Don't try to force things or you may end up with a proper flare. You aren't heading relentlessly for zero but to find the right dose for your PMR as it is now.

I have had PMR for well over 10 years, nearly 5 years undiagnosed and just 6 years on pred. I'm down to 4mg - but it can take a long time. Be patient.

[Celtic PMRGCAuk volunteer]

Hello tangocharlie, you could be right in thinking that you may be having a bit of a relapse if you have started feeling achy all over, especially as you are around the dose where the adrenal glands will be trying to start getting up to speed again after having been suppressed by the long term higher dose steroids. However, if the returning achiness is only very recent, it is also possible that you might be harbouring some virus or infection.

I can understand how frustrating it is, especially as you say you have been on the 7.5mg dose for 6 months now, but, as PMRpro has said, don't push your present reduction whilst you feel like this. In fact, better to increase back to where you previously felt comfortable if you feel you may be on the point of a flare.

However, with the "breathing problems, chest pains" that you describe, if you haven't already mentioned these symptoms to your GP, then I think you would be wise to do so just to rule out anything untoward going on.

[Rose54]

Hi

Yes I Have the same problems very breathless when walking and avoid hills at all cost even small ones feel like walking up Kilimanjaro not that I have ever done that.

Breathlessness went away for a few weeks now back again ,at present on11 a day, slight pain in chest goes after resting for a while .Spoke to GP and had a ECG all was ok.

GP puts it down to sinus problems I have found that steaming helps but I do have to breath through my mouth most of the time .