Posted , 13 users are following.
Hi,
I'm a new member of the group so sorry if this has been discussed already. I've been on 15mgs pred for nine days and symptoms are a bit better but nothing dramatic. Is this common or does it mean I may not have polymyalgia, or may need a higher dosage? I'd love to know how text book you all are! Thanks.
0 likes, 32 replies
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amkoffee celia14153
Posted
When I first started with my prednisone my pain got better but only a little bit so my rheumatologist brought me from 15 mg to 20 mg. Right about that same time my endocrinologist called me with my annual results of my thyroid test which I had recently done. He told me I needed to up my dose on my thyroid medicine. I ended up having to up my dose twice before I got to an acceptable level.
I'm telling you this because I realized that it was my thyroid causing my pain not the PMR. It just so happened that it fell at exactly the time I was trying to get my PMR under control. I don't know if you have a thyroid problem already but it is something to consider as well.
celia14153 amkoffee
Posted
That's really interesting and I'll check that out - thank you. I'm so glad you got to a useful diagnosis.
EileenH celia14153
Posted
There are several things that should be ruled out before a diagnosis of "just PMR" is settled on. They include a few sorts of cancer, vit D deficiency, thyroid problems, polymyositis and other forms of vasculitis amongst others.
Hypothyroidism and vit D deficiency are relatively straightforward to rule out - but often not done.
A website called Uptodate from the Wolters Kluwer publishing house has a particularly good article about PMR that may be worth bringing your doctor's attention to.
celia14153 EileenH
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donna25417 celia14153
Posted
I was put on 15mg last August and it took quite awhile for my pain to get better I probably should have been on a higher dose but hung in there and started the taper slow but sure am now down to 6mg a day going to try 5mg July 1st and virtually am pain free fingers crossed for no flare ups but have changed taking my 6mg at night time used to take in the morning but would wake up quite stiff in the mornings so find taking at night I don't have that . I agree this is the best forum ever and have learned so much from Eileen's comments she's the best .
celia14153 donna25417
Posted
Thanks Donna, it's so helpful to get others' experiences while trying to judge what is going on in your own case. My diagnosis is very recent so I'm going for 20mgs to see if it works better. I'm interested that for you too 15mg pred was slow to cut in initially. This group is amazing!
Mrs_Hobbles celia14153
Posted
celia14153 Mrs_Hobbles
Posted
Such good advice, and not the first thing you think of. I so miss my yoga. But I had to stop it because I felt like I'd been in a car crash the day after exercising. That's when I realised this pain was serious and wasn't going to go away. I'll stick to deep breathing!
EileenH celia14153
Posted
I did Iyengha yoga while I had PMR/no pred - first I did an aquafit class in a warm pool and was then able to do adapted Pilates and yoga classes. I couldn't go full out - but I had fantastic instructors who found a way for me to do a lot.
EileenH
Posted
Should have said - it is like EVERYTHING with PMR: you have to find a way round it and then you can live a pretty well normal life. You learn to prioritise - I don't do housework so I can do other things, I take the lift if I need the energy I'd use for the stairs to do something else - but otherwise, stairs every time. Learn to think "if I do this, I won't be able to do that - so I'll not do this today SO I can do that..."
Many people refuse to ask for assistance when travelling because they find it demeaning. I now book airport assistance in larger airports - and get to my destination feeling reasonably human. I don't need one now - but I seriously considered getting a mobility scooter to let me get out and about when I couldn't walk more than a few hundred yards. I persevered with crutches - and got back to walking for a couple of hours. I struggle with hills - if it gets significantly worse, mobility scooter here I come! I'm not going to become housebound again.
celia14153 EileenH
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celia14153
Posted
The good to know was re the yoga before I read your second, equally helpful, reply. You have clearly been through the mill which may be helpful for the rest of us but pretty b awful for you. I don't know whether you have a medical background but you've certainly worked up a huge knowledge base. The thing is we're so lucky to even have the very idea of a mobility scooter. If we have to have these weird conditions thank goodness we live now! Have a lovely sunny weekend.
EileenH celia14153
Posted
I've worked in the healthcare sector most of my life (if you can include translating medical literature of all sorts) but I did also work in the NHS for a fair time too as a technologist. I also have a physiology degree. I've been involved with the PMRGCA Northeast of England charity for the last 8 years and am also a patient research partner with one of the UK groups.
I never think of the last 13 years as being b awful - a pain in the a^*" perhaps. But I have met a lot of wonderful friends all over the world as a result so it wasn't all bad
celia14153 EileenH
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sheila105 celia14153
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Hi Celia, Well l have GCA so started on 60mg of pred in May this year, it's now the end of july and I have 14 days of 20mg to go through. Within 4 days of being on the initial dose of 60mg I started to feel better, but since then I have good days and bad days. If I do too much on one day the next day I am flat out and suffering. I saw a Rheumatologist whilst in hospital 7 weeks ago. I have now asked my GP to find out when I can see him again, the hosp says there are not enough of them so we have to wait. Tho pain does not wait he keeps coming and getting worse, have you seen a Rheumatologist yet?
celia14153 sheila105
Posted
Hi Sheila, thanks for letting me know your experience. I too know it when I do too much. It's not always easy to keep a balance when life makes it's claims on you. I started at 15mg with disappointing results and the doc said I could go up to 25mg. It took several days to get 80/85% relief. Currently on 20mg and will start tapering in a week or so. On the list to see a rheumatologist but goodness know when that will happen...Is it worth seeing your GP again? You sound as though you've come down to 20mg very rapidly and your pain may be due to that rather than PMR. Eileen will be of better help than me!
EileenH sheila105
Posted
"If I do too much on one day the next day I am flat out and suffering"
Everyone has the same experience whatever autoimmune disorder they have - and there is nothing a doctor of any sort can do about that. The pred manages the inflammation - the fatigue and general unwellness you must manage by pacing:
https://patient.info/forums/discuss/pacing-in-chronic-illness-some-useful-links-that-explain-it-and-how-to-do-it-516000
Also google "the spoons theory by chrsitina miseriando" and "a gorilla in the house by batsgirl". Another good article to google is "13 types of sjogren's fatigue" - they wrote if for patients with Sjogren's but it applies to all autoimmune disorders.
When you are able to accept that you have a serious illness and that you have a new normal to work around it become much easier to live with a chronic illness like GCA and PMR. You can't fight it and by rushing at things and doing too much you end up feeling even worse. Learning your limits and sticking to them evens out your life - fewer ups and downs and makes you more reliable.