Newly diagnosed
Posted , 17 users are following.
I'm 62 years old and newly diagnosed with PMR. It was tough to hear that it wasn't something that could be fixed by a swift course of antibiotics and I think I was in denial for the first few days. But after researching and looking into alternatives to prednisone, I've come around. Armed with more knowledge, this morning I took my first dose of 15mgs. The doc had originally prescribed 20mg and we settled on 15mgs after discussion. I plan to up it to 20mg right away if the aches don't cease and I'll let you know how I get on.
On my learning curve, I have found this forum immensely helpful. Thank you all so much for sharing your experiences and good advice. From you, I've learnt to think of this as a chronic condition that could go into remission in two or three years if I'm lucky. I've learnt to be vigilant for temporal artemis and GCA. I've learnt reducing the prednisone will need to be done very, very gradually. I've learnt I'm going to need to take steps to combat the negative side effects of prednisone so I have some lifestyle changes to make. And very importantly, I've learnt I'm not alone.
I'm a writer and video maker by trade. I've never been very physically active but I've always been busy and worked hard and the impact this might have on my work is a big concern for me. The last couple of months of aches and fatigue have been very difficult.
But I'm starting today with a positive frame of mind and it's largely down to this forum. I've found the stories you've been willing to share so helpful and if I can get my energy levels up, I plan to vlog about my experiences with PMR. I'd just like to pay forward in case my story can help someone else, as you've all helped me. Thank you so much.
1 like, 52 replies
tavidu vickiPMR
Posted
ptolemy vickiPMR
Posted
EileenH ptolemy
Posted
faye______00403 ptolemy
Posted
My hair didn't get curly but grows lot faster....I have to get a haircut
a lot sooner than before.....
louisa85653 vickiPMR
Posted
Good to read your post. I am 53 and was diagnosed 2 1/2 years ago and took a while to come to terms with the 'new' normal of reduced more paced activity. I still do as much as I can though am getting better at saying 'no' when necessary and being more up front to friends and family when I need to slow down - not always easy. I just try to focus on what I can do which is a fair amount. I am trying to complete a postgraduate thesis having stopped full time work and am also having to cut back on some voluntary work I was doing as I have parents who need care in different parts of the country. Overall no different from anyone else though learning all the time about handling my energy resources.
I too have learned huge amounts from this site and wish I had found it when I was first diagnosed - I only found it a couple of months ago and find it hugely helpful - thankyou.
vickiPMR
Posted
Thank you so much for your warm welcome.
Coming to terms with the diagnosis has been tough but I was able to learn a lot on the web which helped with that. This forum and its links has undoubtedly been my most valuable source of information though. I have had a Dexascan and I already have some osteoparosis. My doctor's away next week, but Vitamin D and calcium is top of the agenda when he gets back. Other concerns are blood pressure, sugar levels, weight control... I have a long list.
But hey - I might have curly hair to look forward to. That'll be fun! This forum really rocks!
ptolemy vickiPMR
Posted
Hi Vicki, you should have regular blood tests to check various things particularly inflammation markers ESR and CRP. I also have others every so often such as glucose, U&E, thyroid, vit D, calcium, full blood count, liver function. Probably others I have forgotten. I get a printout of the results which I find really useful.
vickiPMR ptolemy
Posted
That's really helpful, ptolemy. Thank you ... now added to the list!
ptolemy vickiPMR
Posted
louisa85653 ptolemy
Posted
ptolemy louisa85653
Posted
louisa85653 ptolemy
Posted
diana21296 vickiPMR
Posted
vickiPMR diana21296
Posted
I DO want to avoid the steroid bloat so this advice is much appreciated. I'll certainly check the diet info.
faye______00403 vickiPMR
Posted
You are lucky to have found this forum as soon as you did. I bumbled around for
about two years with PMR and not much info on the disease until I somehow
stumbled onto this site.....don't remember how I found it.
Yes, you get the most info and help right here. I've even told my doctor I
will follow the reducing methods listed here and he agrees with me. Mainly
because i don't think he knows a lot about PMR. So.....ask all and any
questions you might have and someone with be along to help you
understand.
vickiPMR faye______00403
Posted