Pmr hit just about three years ago. I am now reporting one month at zero pred, down from thirty originally. Fingers crossed that that is the end of it. If not then pred is my friend.
If I had the opportunity to live my life over and not get Pmr I don't think I would take it. It has taught me a lot of valuable lessons, and because I followed the low carb advice I found here I am two stones lighter too. Thanks to all of you who have supported me on the journey either by comments or replies or being just part of our community.
Written by
Harbel
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Well done Harbel. 👏 It's always lovely to hear positive news like that.I completely agree about the condition teaching us new lessons. I've definitely re-evaluated many areas of my life as a result of PMR and know that I've learnt much about myself, my relationships, my attitude to life and what's really important in life. I also have learnt that I've many blessings I took for granted previously!....but definitely don't anymore!
Without PMR I would have missed out on some of the new friendships I've made here too.....all of which I value very highly.
I'm genuinely happy for you and so pleased you told our community. We regularly share our battles but it's nice to share and celebrate people's triumphs too.
Do not go overboard, remember it can take up to 1 year for those adrenal glands to get up to speed and carry your Blue Steroid warning card for the next year.
A few weeks ago I was sent an NHS 'steroid emergency card' - It is very different from the blue Steroid Treatment Card. It concentrates on the circumstance of the bearer suffering an adrenal crisis. And it assumes, I think, that the bearer is conscious and able to communicate what their current dose is. It gives a detailed 'recipe' for treatment of an adrenal crisis . It is of no use, it seems to me, if I'm involved in some kind of accident - knocked unconscious, found in a dazed state etc etc. I do hope the Blue cards still exist.
Afterthought.Thinking about it now, I think I may have received this new one because, a couple of months ago, the Practice Pharmacist (I'd no idea we had one) rang me to check through my repeat prescription with me.*
Thinking back on it now, I don't think she was terribly familiar with PMR, and was, possibly literally, going by the book - the one on steroids - and as a result I was sent one of the new cards.
*Dammit, I lost the flexibility with 'supplies' that I had enjoyed till then and which has helped enormously in the slow taper.
There is an article in the FAQs about the steroid card - and the new one is really more information of healthcare professionals than the old one. It is to raise awareness of the risk of an adrenal crisis - and that is particularly likely if you were to have an accident and be dazed and unable to communicate well.
Thank you PMRpro. Should I stop being annoyed that it doesn't give me the opportunity to say what dose I am on - with a date? I guess anybody who would know to look for that information would be able to get it on the NHS 'system'.
This lifts your spirits just reading it ! Well done , gives hope for the people who still have so far to go on this roller coaster of a journey !! Thanks and good luck x🌸🌼🌷
Do emergency services search through your wallet/purse for any medical emergency cards. I made my steroid card the lock screen for my phone, but again, would it be looked at???
👍 One thing I learn from this forum is not to taper down quickly. Listen to our body - even you have to stay at a dose 6 weeks to feel stable. I am now at 1.5 mg but I hope to be in the zero club. 😘
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It's good and bad news.
Down to 2 mg PRED but now have numb tingling toes
PMR now totally confused!!
Not PMR but now diagnosed with Polymyositis?
