Having been newly diagnosed with PMR I have tried to bring myself up to speed ASAP. I’ve found the PMRGCA website very helpful and have started reading Kate Gilbert’s book( which I must admit I’m finding a bit scary in places).
I’m very fortunate that my GP does seem “on the ball” regarding PMR and has ordered further blood tests and and a base line bone scan.
I’ve been started on 15mg of Prednisolone which gave almost immediate relief.The NHS website implies the steroids maybe necessary for 18months - 2 years.
I’m sensing however this is rather optimistic ??
Written by
SurreyFlower
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Unless you are one of the very lucky ones, yes it is optimistic! But unfortunately often quoted, by those that should know better (not your GP but specialists).
Have a read of this, again may seem a little scary at first read, but hopefully not too much, and slightly more realistic that some articles you’ll find online - healthunlocked.com/pmrgcauk...
So sorry you got one of those unwanted Christmas presents to unwrap , but at least you have also been given a welcome and unexpected Gift in finding the Forum and a big bunch of New Friends whom can help you with lots of advice , support , reassurance and humour as you travel the PMR Way.
So welcome , post whenever you need , especially in these early days with any question big or small , or ask for others experience of coping with PMR Physically , Mentally and Practically every day. You will soon learn you are not alone and there are plenty of people here ready to hold up the hands and help you with any concerns or emotions you feel as you learn your way .
Sorry to hear of your “present” during the holidays. I remember feeling relieved to get a diagnosis as I was 5.5 months with symptoms before my GP figured it out.
That relief faded when I learned that prednisone was the only medication prescribed, and that I’d likely be on it for years, not weeks. Finding this forum was a key support and these kind, knowledgeable folks have consistently been there for me in the past 1.5 years.
Beyond my concerns about my physical body, it took some time to mentally accept and feel comfortable about my diagnosis of PMR. I went through all the stages of grief...only 55 years old and retired only 18 days prior to symptoms, I was angry I was cheated out of the retirement I dreamed of. I was in denial for awhile and sad that I had a chronic illness. I worried about pred side effects, and found some of my closest support people where actually not supportive at all. Once I accepted my fate, made necessary adjustments and utilized my supports, things got better.
Fast forward 1.5 years later and I’m feeling so much better!! I’ve adopted a healthy lifestyle including a low carb/sugar/salt diet, lost 32 pounds, and got off my medication for high blood pressure. I’m more physically active and feeling more and more “capable” each week. I built up my activity slowly as to avoid DOMS (delayed onset muscle soreness).
I’ve had a few minor pred side effects (skin bruises easily, thinning hair, sweats in early morning hours, and fighting a cold takes longer), however I can live with these quite comfortably. Lots of people will gasp if you tell them you are taking prednisone long term, including doctors who tend to try and rush you off of it by telling patients to taper too quickly. The key is to listen to your body/symptoms and taper slowly. I’ve flared a few times either following a textbook doctors taper, or being stubborn and staying at a dose too low to mop up the inflammation.
I do hope that you get the support you need, if not you must advocate for your help. Make adjustments as need be, be patience with yourself, and post on here whenever you want. We will “get it” better than most who don’t have a lived experience with PMR/GCA. You are not alone!
About 1 in 5 get off pred in a year or so, that rises to1 in 3 by 2 years. So yes - optimism rules on the NHS site, and a lot of other places!!
Not the xmas pressie you wanted - but there are a lot worse things to get and it is perfectly possible to live well with PMR even if you have to make a few adjustments to lifestyle. Acceptance rather than fighting is a good start - don't waste your energy trying to "beat" it, keep it for the battles you can win. There are plenty of them
It would be a great help to us in order to help you if you could add more to your profile page - like where in the UK you are, a bit of history and how the diagnosis came to be made, age and so on. It is all relevant to the advice we offer.
I am so sorry you have been diagnosed with PMR. The good news is that you seem to have a sensible GP, they are like gold dust!! They seem to be doing all the right things. The important thing is when you start to reduce the pred just take it slowly.
Hi, Jan 2018 I was dx'd wi PMR by a really good Rheumie, started on 15 wonderful mgs of Pred, and read everything I could on this site. Following DL's taper plan, and adopting the great recommendations from our contributors, I am on 1.75 mgs. My crystal ball is broken, but right this minute, I am optimistic!!!
I have reduced from 40 mg in Oct 2018 to 5.5 mg and hoping for zero or very low dose by June so 20 months but I think PMR started in Oct 17 and went undiagnosed for a year so 32 months in total if I succeed - GP says it takes as long as it takes
So sorry you have been diagnosed with this. Glad you found this site, it is a life saver.
. My gp told me yesterday it would be gone in a year.
I am now 3years and 3 months diagnosed and back up to 15mg. prednisone. So no confidence there. Luckily I found a good rheumatologist who seems to be pretty up to date on pmr.
Good Luck, you are wise to educate yourself as much as you can.
Welcome NewPMR! I was diagnosed in October 2019 so I am a relative newbie too. I started on 20 mg pred, down to 15 after one week and two months on 15 mg. Just tapered to 12.5 and feel good. You, of course, are in the beginning stage trying to figure out exactly what this means to your day to day activities and what the pred might do to you. I would also encourage a healthy diet (stay off the white flour, sugar and limit salt, lots of green leafy veggies) , get plenty of rest, walk daily if you can and I think you will find PMR is not as awful as it sounds. This forum is a wonderful help.
When I had that happen, it was suggested that I get into the warm tub with epsom salts which really did help my sore muscles. I hope that works for you!
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Recently diagnosed with PMR
Recently diagnosed with PMR
New PMR diagnosed today.
Just been diagnosed with PMR
