Relapse after 7 years! Back for your support again.!
Posted , 7 users are following.
Was diagnosed originally back in 2007 - and although I have never managed to get off the steroids completely I was down to 1 mg daily and was definitely living life to the full - but have always listened to my body and have been kind to myself - resting when necessary but taking exercise and eating healthily - my previous skirmish showed me how to manage my fatigue and pain/discomforts and retain a good quality of life. Then suddenly last week- 3 days after a superb family holiday I suddenly can't move again. My GP was wonderful - apart from having to get a taxi to surgery and having to somehow sit in a waiting room for over an hour - she managed to get me booked for a blood test that day, arranged a hip x ray just to make sure she wan't missing anything and then upped my steroids to 25mg plus pain relief. So this time within in 3 days of onset I was having steroids which many of you know is such a relief. Yes my CRP was 129 (but my hip x ray is all good) so now i've to to start all over again!! I am frightened and don't know if i can go through it all again - i hate the affect of prednisolone and the restrictions and frustrstions all again. You were all such as good support system last time - I'd read the forum posts for hours when i couldn't cope with much else, so I hope to gain your support again this time - some of the contributors are still the same I see!! - hope that doesn't mean you have had relapses yourselves.
Any tips on handing relapses - am I likely to get through this episode more quickly and be able to reduce more effectively. My family keep reminding me i did get back to normal last time and i will again but i must admitt i am feeling quite low at the moment. Are there any advances in the research and treatment over the last few years. I shall look forward to any replies.
0 likes, 20 replies
Nefret gillb
Posted
I still feel well in myself and able to cope, so I hope you come through the low mood (I certainly know what that feels like) soon, but if you don't go and tell your doctor how you are feeling - they won't know unless you tell them and I think medical support is essential.
MrsO-UK_Surrey gillb
Posted
f course you will feel "low" at the moment not just from having received the body blow of the return of PMR but also because with a CRP of 129 there has been a lot of inflammation coursing through your body, and pain itself, of course, is depressing. I feel sure that once the steroids have got that inflammation under control and you've got your heard around it again, you will start to feel better.
As you hadn't got completely off steroids altogether and were still on a tiny 1mg dose, I'm wondering if you might be able to get down the doses a little faster this time, at least to a lower maintenance dose. Of course, it will depend on the blood tests and how you feel along the way. Two ladies on another forum have gone through it for the second time and are, once again, in remission and off steroids, but they both had a gap of a few years in between the bouts.
Ensure you have regular blood tests to keep an eye on that CRP. We can't really give you any other tips that you're not already aware of from your past experience, other than to say, depending where you live, there might be a local support group where you can meet up with others for a cuppa and a chat - a problem shared....... I do hope you feel better soon.