I developed PMR at New Year 2020. I was put on 15 mg Pred and I have 'stuck to the script' since then. I was warned that I was border line diabetes when I started on the Pred and sure enough, I soon became diabetic, probably because of the steroids. I also had AF (Atrial Fibrillation) and a liver imbalance.
I went to see a diabetic consultant who advised me to see a diabetic dietician. I was then 12 stone 1 lb. and 5'7" but I was beginning to look large. She advised me to go on an 800 calories a day diet and to cut out all carbs and sugar asap. In |April this year, my husband died of Covid, following a long illness. Besides my grief, I did find it easier to diet living on my own and I am pleased to say that I now weight 11stone.
I am pleased to tell you that my diabetes has now gone, my liver imbalance has been corrected, and my AF has been cured by having a cardio version (stopping and starting the heart.) I am also down to 1 mg every other day with no problems and I can see that it will be exactly two years almost to the day that I have been hopefully cured as predicted.
I hope this gives encouragement to others that given time you will all get better. I am approaching 80 now and have never felt better or younger.
So thank you Dorset Lady and all the other contributors who have helped me on my PMR journey. I do appreciate your wise advice very much indeed. I hope this letter gives encouragement to other sufferers too.
'Silver Babe'
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Silver-Babe
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I am so sorry about your loss , you have done incredibly well in the circumstances, you must be such a strong soul.That's such an uplifting story and I am sure it will fill people with hope and more optimism as they begin or struggle on their PMR journey.
Please take care , rest , lots of fluids , paracetamol, and use sick Day rules for increasing your dose if you can and need too. So sorry it's so close to Christmas.Are you still at home?
Well done you. I'm exactly into my third year of PMR/GCA and wish I was as lucky as yourself managing to get down to 1mg every other day. So very sorry to read of your loss. Must say, you look amazing for eighty !
I wish you a Happy Christmas and Healthy New Year.
Condolences for your loss ❤️ - good to hear you are much better in lots of ways.
Please go slowly with your tapering -and don’t get fixated on the 2year mark -sometimes the last hurdle is the most difficult -as many have found out even 0.5mg really does make a big difference.
Plus this Christmas will be the first since your husband died, so it will be stressful, so don’t attempt to reduce your dose until the new year.
That is such good news - and hope the rest of the journey is as good. I need to follow your example - despite being alone since my husband died I have rather lapsed on diet. No excuse now.
Thanks so much for your encouraging story, Silver-Babe and my commiserations for your loss. Continue looking after yourself so well; you are an example to us all.
Firstly, I am sorry that your husband died. I applaud you for your efforts to get well yourself, under extremely difficult circumstance. You are a strong brave woman, clearly. To find it in your heart to be grateful, is humbling. Thank you. 🌼
Thank you Sheffield Jane. I remember writing to you several times before and I thank you for your kind replies. It's just good I imagine for you and all the others to hear that if they wait two years, which I think, is often regarded as the prescribed 'time', one can get better from Poly neuralgia . I was worried writing this good news letter, because I dreaded getting it again like 'tomorrow'. Well I was right in a way, because yesterday I went down with shingles!! Never a dull moment is there?!
Yes dear Dorset Lady! That will teach me to be smug won't it? But at least it's nothing to do with PMR. Thank you again for your kind words and two years of help not only for me but for thousands of others - you are the Queen of PMR!
Viking Queen , Goddess of GCA , Deserving Mistress of all she surveys is you full title isn't it?At least it should be , now send your warriors to go and fetch you a cup of tea and a cupcake🍰👸🧚
Do you know what caused your AF? Was it unrelated to the PMR?
I was diagnosed with PMR in October and put on Prednisolone. I then developed AF which lasted for about a month. It stopped as suddenly as it started. No one seems to be able to tell why!
if you had AF in October, it is a bit early to conclude it has stopped. I just read an article about diagnosing it which said that out-patient diagnosis of paroxysmal AF may require wearing a monitor for 80 days to get a record.
The arrhythmia expert cardiologist is confident that my AF was caused by the autoimmune part of PMR having damaged the sinus node, the group of electrical cells that governs heart rate. It was well-managed with medication for the last 6 or 7 years but since having the bivalent Covid jab it has been quite persistent. This also coincided with me having lowered my pred dose a lot, down to 7mg, thanks to Actemra. Previously, the AF was always related to inflammation - being worse when I was flaring with the PMR and part of the need for the level of pred was management of the AF. Maybe your pred has removed a component of the cause of the AF.
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