Posted , 12 users are following.
Hi all. After lots of visits to GP followed by a series of falls I eventually was referred to Rheumatologist.last Friday. On 2 nd of August 5 days later he has started me on 20 mg PRED a day. He says I'm young as I'm only 55.... got a great Dr.I could have cried because I felt he'd listened to but this is my first post and I dont know much about it?
0 likes, 41 replies
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.
Michdonn Daisy64
Posted
Hi Daisy64, women seem to contract PMR over 50, but a number in their 30s; men over 70, but a number in their 60s. I felt better after 20 mg of Pred, but it took a couple of weeks before I was PMR pain free. Try to stay active, do not over do it, walk or do something just a little bit. Do not hurt yourself, rest and take your time. Try and listen to your body. We are all on this journey, I keep a smile on my face. 🙂 Good Luck!
constance.de Michdonn
Posted
Michdonn constance.de
Posted
Hi Constance.de, diagnosed a little over a year ago. Did okay up until April had a bad flare, was on 7 mg had to jump to 30 mg to get relief, PMR pain free since late May. I walk twice a day one morning, one evening, started very easy and worked my way up a little bit at a time. I try to keep a smile on my face, I think it helps. 🙂
constance.de Michdonn
Posted
Well done. 👍
Michdonn constance.de
Posted
Thanks constance.d I keep trying pushing forward each day with a smile on my face. 🙂
amkoffee Daisy64
Posted
Welcome to the PMR club. I got my diagnosis on my 55 birthday. But no one said I was too young to get it. But I can tell you this, I've aged another 55 years since then. At least that's how I feel. I hope you have a quick and uneventful course and that it goes into remission quickly.
celia14153 Daisy64
Posted
Don't panic! Polymyalgia is treatable, unlike Fibromyalgia. The idea is to reach a dosage of prednisone that controls the symptoms, then slowly taper to the lowest dose that continues to do so. PMG often goes into remission but the whole process can take a couple of years. Fatigue can cut in and it's important to pace activity with rest to give the underlying inflammation a chance to heal. It takes its time but it could be worse, and the Pred is a great support. Hope all goes well with you - this Forum is amazing and very helpful.
EileenH Daisy64
Posted
Well, he may think you are young - but there are an awful lot of us who developed PMR in their 50s. The average age is claimed to be 70+ - but since there are many in their late 70s and 80s, there must equally be many in their 50s and 60s. That's how averages work!
I believe that there would be far more "young" patients if the doctors weren't so blinkered and accepted that it is symptoms that count - and your birth date isn't a symptom. Young patients are told it is "fibromyalgia", "depression", "your age" and a load of other tosh. And once the fibro word has been uttered - you really are struggling to get them to look at anything else.
This is our resources post:
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
with links to web sites and other places you will get reliable information. The NE support site is particularly good with many articles about PMR in their newsletters, they have a DVD and members pack with a booklet which can also be purchased separately.
And ask questions - someone will answer them!
pauline36422 Daisy64
Posted
a very slow reduction of pred, lots of us on this forum help each other out with our information on how we are doing , some have differant things going on , I for one compared to others have had an easy ride tho i am 5/6 years down the road, with no side effects from pred, but a couple of flares. i am now back down to 3 mg
after a flare which took me back up to 5mg the bst help is to keep to the slow slow reduction, keep us all informed of your progress. it helps the new starters like we are hepling you. to understand this painfull problem good luck x
sandy65909 Daisy64
Posted
Welcome to the exclusive PMR club. You will find lots of support and encouragement here. Ask questions. I'm 6 weeks in and feel fortunate to have this forum. Take it easy, adjust to an autoimmune disease. Watch your diet, low carb with some fat. Pred causes hunger so eat the right food. Stay positive and do things you wouldn't normally do. I have a long rest in the afternoon, read more books, enjoy cooking and making interesting salads, take life slow making deliberate and careful choices.
Oregonjohn-UK Daisy64
Posted
Daisy, welcome to the club nobody really wanted to join! Take heart as it all seems rather endless when you start as nobody really knows when the underlining 'problem' will go into remission. I speak from the other end of the journey - you will improve but don't try to rush it, others have said 'listen to your body' and don't overdo anything it's not worth it. I got into the Zero Club in January 2017 having started in July 2015 at 30 mg. and am now enjoying life again. The very best of luck on your journey and don't hesitate to ask any questions on this forum, we have lots of people who can give very practical advice and support. John
Oregonjohn-UK
Posted
Daisy64
Posted
EileenH Daisy64
Posted
Almost all of us probably! Concentration is a problem with almost all autoimmune disorders and can also be a side effect of pred, especially at higher doses and until you get used to it.
Lots of people say they were very clumsy - breaking things because they dropped them or knocked them over - and that it felt as if their legs weren't doing what they wanted to do. GCA can also affect ears - and there is such a narrow line between PMR and GCA sometimes - I'm sure your ears and balance are involved more than we think.
Daisy64 EileenH
Posted
Yes!! At night when I turn over in bed I feel very dizzy. Like the room is spinning. That's been happening for months, so has the concentration thing. Thanks for taking the time to reply.
linda17563 Daisy64
Posted
Yes, along with the "normal " symptoms of PMR I also get the dizzies when I turn over, and ringing in the ears....you will notice like some of us, things appear and then disappear and will wonder is this PMR, but this forum will answer your questions....so don`t be afraid to ask....I have many times.....and got the right answers from them rather than the medical profession....good luck....