Tray

[pmrdec112014]

This is my current predicament....I was due to get up for work at 6.45 am this morn but have woken, having gone to bed the last few nights by 9 pm due to feeling exhausted, feeling very stiff, my whole body aching and feeling even more exhausted. I have had a bit of a cold and cough ( also asthmatic) and was due to be reducing the pred to 13mgs from 14mgs tomorrow. I was diagnosed with this PMR last December 2014 and was started on 15mgs. So its taken a while to get to 13mgs. Where do I go from here? I have emailed my surgery asking for my gp to contact me. I am still in bed as I just have not got the energy to get up. I feel floored and this is so not me. I am 51!!! And I should be at work!!!

[Celtic PMRGCAuk volunteer]

pmrdec, if your 15mg starting dose improved your symptoms, then your cough and cold virus may have stirred things up again. If you are someone who had raised blood markers at diagnosis, you should get the tests repeated - if the markers have risen then it could point to a flare but, having said that, they can also rise in response to an infection or virus. Whatever the reason, I feel you may need to return to your starting dose. If that didn't get good control over your symptoms in the first place, then perhaps you may be among the few people for whom a 20mg starting dose would have proved more successful, especially in view of the fact that you are still of working age and therefore not able to rest as much as those of us who are no longer in employment. I do hope you feel better soon.

[pmrdec112014 in reply to Celtic]

Thank you Celtic. Yes 15 mgs did trick originally although I ended up staying on that for 8 weeks as a trial at 12.5mgs for 3 days after 4 weeks brought all the symptoms back again. I think probably this virus has triggered everything again. My crp was 24 at diagnosis after a 4 week history. I will see what GP says

[PMRpro Ambassador in reply to pmrdec112014]

I think Celtic has said it all. Trying to work when you have a virus just puts more stress on the body and is likely to make PMR worse. 4 weeks at 15mg originally was almost certainly not long enough and there was some residual inflammation there. Also, having to work with PMR and muscles that are intolerant of exercise (whatever that job is) is likely to require more pred to combat the inflammation so reducing is going to pose a problem. I imagine too that you have had pred before for your asthma - I suspect that may lead to a certain tolerance of the dose. Celtic could be right about maybe needing the 20mg starting dose to get things under proper control. I was on 15mg for much longer than 3 months - and probably because the dose was reduced early on and I had a major flare. In the end it took me 4 years to get below 10mg - and I wasn't having to get up in the middle of the night to get to a "proper" job. I worked from home as a translator - I didn't even have to get dressed properly!

But "this is not me" says it all you know: we become a rather different person when we have a chronic illness and we cannot expect things to run as they did pre-PMR. I too was 51 when it all started and I worked without pred at all at first but it was very difficult and I couldn't have done what you are doing. Possibly you need a major reappraisal for a while so you can rest more until you have things more under control.

[pmrdec112014 in reply to PMRpro]

Thank you PMRpro.

Yes I have had a few courses of steroids for my asthma over the years! I also had a serious allergic reaction to a foxglove plant 3 yrs ago which led me to being on 20mgs steroids for a week and when I stopped I then had a steroid crisis and had to go back on them for another 10 days so not sure if that has any relevance to my tolerance to steroids. My crp had gone down to normal after the first blood test after diagnosis of pmr. I work as a community staff nurse in school health so its quite physical as I visit lots of different schools.