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  3. Polymyalgia Rheumatica and GCA

New Member of the PMR Club

Posted , 3 users are following.

ET_Phone_Home
ET_Phone_Home

I just wanted to say thanks to all who have posted on this site for the valuable advice and insight into this debilitating condition. I am 6 weeks on from my initial diagnosis which took 3 months before that to finally nail it down as PMR. I am 55 years old and an active netball player so other things had to be ruled out before we got there. I started on 15mg of pred and tomorrow will be reducing to 9mg for a month. So far each reduction of 2.5mg has gone smoothly so I am hopeful that this 1mg drop will be ok. I am also taking the weekly Alendronic acid, 2 daily calceos tablets, 2 spoonfuls of manuka honey 12+ active and a daily mini bottle of Yakult light. So far I have not had any serious stomach upsets so have not needed the Omeprazole.

I also have underactive thyroid and take 100mg Levothyroxine daily and need a B12 injection every 3 months. I consider myself very fortunate that the drugs are working well enough that I have been able to continue with netball. I am taking it easy and as I play GS there is no need for me to race about all over the place I can be fairly static.

I am also continuing to take my daily cod liver oil, glucosamine, omega 3 fish oil and odourless garlic capsules all to keep me creak free!

I realise that there is no quick fix and I'm in it for the long haul but considering how bad I was 2 or 3 months ago unable to get out of bed or the bath, creeping downstairs 1 step at a time, unable to dress or undress myself , I'm amazed at the improvement in a short space of time.

I will keep checking the posts for more useful stuff smile

Elaine

0 likes, 4 replies

4 Replies

  • EileenH
    EileenH

    Posted

    Welcome Elaine, from Eileen!

    Looking forward to hearing more

    Eileen

  • MrsO-UK_Surrey
    MrsO-UK_Surrey

    Posted

    Hello Elaine and Snap! with the Manuka honey - so good for us. Also during my years with PMR/GCA, I swore by 'live' yoghurt each day as a stomach liner, and, like you, managed successfully without the stomach protectors (Omeprazole, Lansoprazole) - in fact, I was taken off them within a few days because of a bad reaction with my bowel. Although Yakult isn't an actual yoghurt, it does contain all the beneficial good bacteria for the gut so hopefully your stomach will continue to do well on that.

    Have you had a DEXA scan that has shown you to be suffering from thinning bones (osteoporosis or osteopenia)? If not then it may be a good idea to ask for one as you may not need the Alendronic Acid with its potential side effects. The calceos should be sufficient.

    Also, a Vitamin D blood test should be carried out and any deficiency corrected with a supplement. If needed, the supplement will ensure that more calcium from your diet is absorbed into your bones. A deficiency in Vitamin D can cause pain in similar areas as PMR and the supplement, if needed, can also protect you from many other 'nasties'. I had a reading of 36 whereas normal is between 70 and 150/200, depending on which health trust you come under. A 3-month course raised my levels to 89.

    I hope you continue successfully with your reductions.

  • ET_Phone_Home
    ET_Phone_Home

    Posted

    Hi Mrs O, no I haven't had a dexa scan yet and I'm not sure about the Vit D blood test. I will be having a phone call appointment with the doctor who has set me on this path fairly soon so will mention both. I also want to ask her if I should be having a flu jab if my immune system is compromised by this condition. I will let you know how I get on.

    Elaine

  • ET_Phone_Home
    ET_Phone_Home

    Posted

    I know it is a long while since I posted on here but I have been reading the posts on a regular basis from other contributors and taking in the valuable advice and content.

    I did have a Dexa scan in November 13 which showed my spine to be normal but my hips to be slightly below average so the advice given to my GP was for me to continue taking the Alendronic Acid.

    I have continued reducing the Pred by 1mg a month and am now at 5mg, I should be dropping down to 4mg today but having read some of the posts I asked my GP if I could stay on 5mg for a further month before attempting the drop to 4mg, she agreed that it might be a good idea. So far I have had no return of any of the original symptoms and feel extremely lucky that it has been going so well for me. I have continued with my netball and my general day to day life pain free.

    I am under no illusions though and am very aware that there could be a point in the coming months where I hit the wall and may have to increase again.

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