1. Community
  2. Bones, joints and muscles
  3. Polymyalgia Rheumatica and GCA

Newly diagnosed

Posted , 17 users are following.

vickiPMR
vickiPMR

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

52 Replies

Next
  • tavidu
    tavidu vickiPMR

    Posted

    Welcome vicki to our exclusive club. I am so sorry to hear that you have had to become a member but it is so refreshing to hear from someone new with such a positive attitude. I am sure that if we all tried to see our illness in that way we would all be better for it. There is no point rushing to come off preds only to suffer more pain so to control it and reduce slowly is the only way. Good luck and keep us informed of your progress over the coming months. Dave (tavidu)
  • ptolemy
    ptolemy vickiPMR

    Posted

    My gosh Vicki, you are much more aware of PMR than when I was first diagnosed and that will definitely stand you in good stead.  PMR is life changing but it definitely has pluses as well as minuses. I am much more aware of nutrition and I tend to exercise in a more irganised way. I am more relaxed and I have long, strong fingernails I think due to the vit D and calcium I am taking to counteract the pred side effects. Have you been prescribed vit D and calcium? You should be.  You should also have a Dexascan. The pred also seems to have given me curly hair which I have always wanted. 
    • EileenH
      EileenH ptolemy

      Posted

      The nails are a pred side effect! Many comment about it who never have taken vit D and calcium - and my nails deteriorated as the dose fell despite still taking the vit D/calcium. A return to ahigher dose with a flare has returned the nice nails...
    • faye______00403
      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
    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
    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
      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
      vickiPMR ptolemy

      Posted

      That's really helpful, ptolemy. Thank you ... now added to the list!

    • ptolemy
      ptolemy vickiPMR

      Posted

      I am looking forward to your blog. I wish I had done something when diagnosed. 
    • louisa85653
      louisa85653 ptolemy

      Posted

      Thanks for mentioning getting a printout of your results. I will ask for that particularly as I am now on fortnightly blood tests due to being put on methotrexate with the aim of reducing pred (currently at 7mg)

    • ptolemy
      ptolemy louisa85653

      Posted

      I hate to admit it but I get a cheap thrill checking my blood test results. It must be the nerd in me!
    • louisa85653
      louisa85653 ptolemy

      Posted

      To be honest it sounds like a great idea. Keeps you feeling in some kind of control. I noticed my rheumatologist was looking at a chart on his computer so I am sure I could have access to this - it is my own data after all!
  • diana21296
    diana21296 vickiPMR

    Posted

    If you want to avoid the sterid bloat, cut down hard on carbs and also cut out sugar unless it is found naturally in fruit for example.  You can research the steroid diet for the info and there are plenty of healthy cakes and cookies which avoid sugar using overipe bananas as the sweetner. Also take a small bowl of good organic natural yoghurt before taking the prednisolone to protect the stomach.      Good luck!         A positive attitude really helps.
    • vickiPMR
      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
    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
      vickiPMR faye______00403

      Posted

      Thank you Faye. I feel so lucky to have found this forum and I plan to discuss the reducing methods here with my doctor too. 
Back to top
Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.