WONDERFUL RELIEF

Fist of all I have had a few replies from people concerned about me taking my Son in Laws preds, I think I am coming across as irresponsible. I will be taking 3 of his tablets before I see my GP and get my own prescription.

Because my blood tests were not conclusive he was hesitant about prescribing them for me. He is a young doctor and said he has not had much experience with PMR. I should have insisted on a trial run. My symptoms are classic except for the blood tests. I just looked at the results and the C reactive protein is 28. Normal range is 0-10 so it is a bit elevated.

Anyway this morning I woke up a different person. After 1 tablet of 25 gr the difference is amazing. I think, from what I have read on here that it seems pretty conclusive it is PMR. For the first time in a few months I look forward to having a shower and get dressed. Very happy.

Now after speaking to my son in law who is 52 yrs old and a very fit marathon running, bike riding health person, his symptoms were shocking pains in his hips, not so bad in his shoulders. His blood results were sky high for inflammation and his GP started him on Pred. Immediate relief and he took them for 3 Mths. He does suffer from stress. .

Anyway it is early days but I feel a lot happier. Thanks to all you lovely people once again.

34 Replies

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  • So so glad you found some relief. And as others have stated here, don't overdo just because you are feeling well.

  • Yes I have tried not to do too much. But I did manage a walk. First time for a few months.pretty happy.

  • This is one rollercoaster ride. I never appreciated good days as much as I do now. :)

  • Im very new to this. May I ask how long you have had pmr? My family think it will be gone very soon. Would be good.

  • Cheshy - it’s great that you’re feeling so much better - 25mg is a bit on the high side for a first PMR dose tho’. I was started on 15mg in April ‘16; had to increase to 20mg (big improvement but took 2-3wks) and have tapered slowly down to 5mg currently.

    SO - it’s not going to be a quick fix, I’m afraid. Getting this across to one’s family (and making them understand what a painful, frustrating business this is) can be one of the most difficult things about this illness!

    Take it easy, don’t rush things and be kind to yourself!

  • Thanks so much.

  • Unfortunately nobody can say how long PMR or GCA will last.

    Many doctors say "about 2 years" and although that may be true for some, it's certainly not as common as they would have you believe. The average seems to be nearer 3 to 4 years.

    Whatever it's not a quick fix.

    My GCA lasted for 5 & half years.

  • Oh God. Thats terrible.

  • No it's not.

    What was terrible was being undiagnosed for eighteen months, and permenantly losing the sight in one eye because of that.

    Once you have got the correct diagnosis, are taking the right level of Pred to control the symptoms, and got your head around the fact you're in it for the long haul, you'll be okay.

    It may be life changing, but it's not life threatening. There are lots of worse illnesses to have.

    You may not like it, but acceptance is the key. The sooner you do that, the better you will get through it.

  • I was undiagnosed for 5 years - and am still on pred after 8 years more. I am one of the approximately 5% who has very long lasting PMR - just like your SIL is one of an even smaller percentaage who are able to get off pred in a very short time. About 20-25% are able to get off pred in under 2 years, about half take 4-6 years - one third pf patients overall still require pred after 6 years. This is not a quick fix disorder for the vast majority of patients.

    There is some thought that there are differing versions of PMR - including GCA and PMR really being the same disorder, just manifesting differently, and there being a short reactive sort, the sort of thing your SIL had as well as a lasting version like mine. But you cannot tell in advance who is going to have which - you start on pred and see if you can then reduce your pred dose to zero without a return of symptoms. And THAT is the ONLY way you know it has gone away. Having "normal bloods" and no symptoms while you are still on pred only means you are on enough pred to manage the inflammatin.

    However, life on pred does not have to be terrible - I lead a perfectly normal life for someone my age, 65, in the UK. I don't climb mountains like some of my neighbours here in the Alps - but they have been doing it all their lives! I continued to ski with PMR and pred and gave up for other reasons. I travel all over the world - again, I'm not going to go trecking in Nepal, but I probably wouldn't have anyway. There are some compromises I have to make, but most of them come with advancing age anyway.

    And I can only reinforce what DL says - acceptance and not fighting tooth and nail against it is key. You will feel both better and happier - and live a better QOL as a result.

  • You and D L are helpin a lot, thanks.

  • One of the.problems I am having is that my consultant rheumatologist is saying that my PMR is now in remission because my bloods are back to normal! :d I am on 14mg Prednisolone and still have pain and fatigue (and was only diagnosed about ten months ago) but for him it's all about the blood results! So frustrating!!

  • And of course your bloods are back to normal if you've been on pred for months! That's what pred is supposed to do, as you and I well know. Does this highly educated professional not understand that pred is not a cure? Rolls eyes.

  • Apparently not!! :( Scary that these people have power over our lives.......

  • And they wonder why patients keep having flares...

  • May I ask why it took so long to get diagnosed? I woke up with very sore shoulders, glutes and quads in June--which went away usually by noon. But in July, when I got up, I was so stiff and it was so painful, I went to my Nurse Practitioner who did blood tests right away, and based on the results gave me Prednisone. Does PMR present itself differently for different people?

  • RheaV, PMR seems to present itself differently to different physicians! May I say you were fortunate to encounter a health care professional who caught the possibility as quickly as she did. I was undiagnosed by one doctor for about 14 months, but a new doctor recognized the problem almost instantly. My symptoms were textbook classic, so no excuses for that first doctor!

  • Reading the forum here makes me very grateful that I was diagnosed so quickly. Other than the fact that I'm taking Pred, I feel pretty normal, and so far I'm not limited in anything--but knowing what I'm dealing with I do make sure to not overdo.

  • My blood tests have never been raised - so, it was said, there can't be anything wrong. Sheer laziness on the part of the GP. The GP in the practice who would have recognised it only worked parttime - getting apppointments with her was next to impossible - and was on maternity leave anyway. But yes, PMR can present differently although the basic symptoms are the same.

  • Hi, it startedas a pain in the top of my right arm which then movedinto my shoulder. To the doctor and a X-ray of shoulder I have a torn rotato cuff and did 3 weeks of physio no improvement . Spreadto my left shoulder. I had a injection in my right shoulder. No relief. Back to the doctor for blood tests. Not conclusive. The GP said it soundslike PMR. Will Se d you toa Rheumatologis. . Now relief after taking my S I L's Pred. I now feel half way normal.

  • Glad you got the Pred miracle Chesey!! Glad you are seeing the doctor though. Lovely Pred can also bite you hard on the b*m, so it's best to have guidance. Love it hate it. X

  • I do have mixed feelings. I had made up my mind to tough it out but the pain was too horrible. So lucky to have medication to deal with it.

  • I'm not one of the "aunties" on this site, but I felt your pain yesterday and just had to answer you.

    I'm going to say it again, pointless suffering is pointless.

    But pred is not a cure. It's not a painkiller. It is a treatment that manages symptoms. Without pred, the inflammation gathers in our viens and arteries not only causing pain, but doing damage. Nobody wants to take pred, but taking the right dose to control inflammation is important.

    Get to your dr, get a starting dose that clears out the accumulated inflammation, let it sit at that level for a while, and then start a slow reduction. "A while" is more like a month than like a few days.

    If you do the tapering right, you'll take a lot less pred overall because you didn't induce flare ups of symptoms. Sufficient doses of Vit D3 and calcium should help offset any bone-thinning if you're in the normal range. Always take pred with food so it causes as little upset to your stomach as possible (that's only more stress and inflammation). If you need it, get a PPI from your dr. Try to watch your weight because pred can pack it on pretty quickly if you're not looking. Avoid empty calories altogether. Some say avoid carbs too.

    Keep you daily exercise and other activities under control. Your muscles and tendons are more prone to injury with PMR. Aim to keep your range of motion with easy and gentle stretching. You can built strength and stamina as your condition improves. This is not the time for it. You need to cut back quite a lot and up the proportion of your day you are at rest. You are ill. Inadequate rest is almost as bad as inadequate medication.

    Be careful with other medications and supplements mixing with pred. Some are out altogether and some need to be timed carefully. There's plenty of expertise on this site to guide you.

    None of us signed up for PMR, but it can and does get better if you take care of yourself. Be wise.

  • I think some of us felt we could tough it out at first( I initially refused pred- said I'd manage it myself but just got worse and worse) Good that you have had relief from symptoms- all the best for Monday/ Tuesday? Let us know how you get on. Best wishes Jackie

  • Hi Cheshy, my bloods were normal too but my GP agreed when I asked for a pred trial. Perhaps if you tell your GP that up to 20% of sufferers can have 'normal' blood tests...! The source for that valuable snippet is from the PMRGCA North East group and you can download the word document for him - 'BURDEN OF POLYMYALGIA RHEUMATICA' - pmr-gca-northeast.org.uk/as...

  • Hi Sazzyb

    Thanks for that link. I had a quick look and will download it tomorrow. I now feel in turmoil over it all. The document claims that no one should start at above 20 mg.. I know many people on here have had a lot higher dose. I now appreciate more than ever that family and friends will not take this seriously unless they read this document. Don't think there is much chance of that happening. It appears that the diagnosis and treatment is pretty random. When I read the risks of taking prednisone I feel sick but we have no choice. I'm writing up a menu plan and a shopping list tomorrow as I have The Blood Sugar diet book which is low carb and actually has some good meal ideas. Pity as I love carbs and battle my weight although I have lost 4 kgs in the last few months as have lost my appetite. Sorry about rambling on. Cheryle

  • People on a much higher dose have/had GCA - a very different kettle of fish. The 20mg limit is also older - the most recent Recommendations say "the lowest effective dose in the range 12.5 to 25mg" but not more than 30mg.

    It occurs to me - this paper might be helful too for expalining to others:

    healthunlocked.com/pmrgcauk...

    and this is the paper Rugger mentions about pred not being that bad:

    practicalpainmanagement.com...

  • Hi Cheryle

    What a relief for you to have that pain under control at last. I was going to say, make sure you say 25 MILLIGRAMS to the doctor and not 25grams, but I see you've written 'mg' above. I think I've read one of PMRpro's replies that said the current thinking about starting dose is anything from 25 to 15mg - whichever tackles the pain, so don't worry too much about the 3 tablets of 25mg. Your doctor will decide what dose to prescribe from now on.

    Not everyone gets all the side effects of pred, but most of us, including you now, get the benefits! Again, there's a paper which has been mentioned here in the last week or so that is very reassuring about the side effects. If I can find it, I'll send you the link, or someone else will!

    One thing to discuss with the doctor tomorrow is your bone health. Ask for a DEXA scan to see what your bone density is at the start of the pred therapy. It would be useful to have your blood vitamin D measured and corrected if it is low, then ask for a daily Calcium and vitamin D preparation. (You will have read about the risk of osteoporosis, but not everyone gets it, but we all should be screened for it. Some doctors want to start their patients on a bisphosphonate drug for osteoporosis without a diagnosis, but that doesn't feel right for most of us.)

    Stay with this forum, as you will get so much support and information.

    Take care x

  • Thats all good advice thank you. I was told a few months ago when I had cholesterol checked that I had a vitamin D deficency and half heartedly took the supplement, now I will be more diligent. Bone density test was done about 7yrs ago and I was told everything was fine. But def will get it re done.

    i have been in bed for 2hrs and have given up and its now 1am, who cares.

    Im going to ramble on a bit my Cholesterol was slightly high and rather than go onto medication I changed my diet and ate a lot of vegetables and beans instead of meat for at least 3 meals a week. This worked and I didn't have to take the cholesterol meds.

    Loking for diets on the internet I came across a Dr John Mcdougal a plant based diet expert. I read all the testimonials of the people who had cured themselves of R A by having no animal products no idea at this stage I would have PMR very shortly.

    Then I came across a lady in America who had changed all her health problems and she quoted a book called Perfect Health Diet. This too was full of testimonials of people who cured everything under the sun especially R A. Now there was a big problem for me as this book advocated at least 3 eggs a day and a lot of meat more than I eat normally. Thats when I gave up and just decided to concentrate on a normal healthy diet. I think if a diet did exist we would all know about it.

    Cheers, Cheryle

  • Low carb is very helpful with pred - it helps avoid weight gain and developing steroid induced diabetes which happens to some people.

  • I have always followed my Grandma's rule:

    Everything in moderation including abstinence.

    I gained about 5 lbs in the near year I've been taking pred. I think it all went to my cheeks and my breasts. (Now nearly a B bra cup after never filling an A before.) I also look forward to seeing my collar bones again someday.

    Unlike some, I can't go without carbs, which I think has more to do with my 12 hour work days and 3 hour + round-trip commute. (I cut my hours from 15-18 hour days.) Without carbs, I'm listless and low energy. But I rarely partake of nutritionally void calories - oh, maybe a few bites of dessert on a Saturday night - but that's it.

    We need protein for our muscles, which are having a time of it with PMR. Fish and fowl are great sources. A rainbow of fruits and vegetables keeps all the vitamins and minerals in good supply. That's how I satisfy "the muchies" that come along with pred.

    I only add or subtract one thing at a time from my diet or my activities. That way I can tell what's working and what isn't. And, of course, PMR has a mind of its own, so every once in a while it tosses everything in the air to land just slightly differently than before.

    I'm only relaying what has worked for me. It may or may not work for others. I'm no meidcal expert, having been disgustingly healthy my whole life until PMR. There's a lot of accumulated wisdom and experience and expertise on this site. Keep bringing your questions and queries, and let us know how you're getting along.

    PS: The doctor is probably going to yell at yor for taking someone else's pred. Just nod and smile sweetly.

  • Hi Cheryle

    I agree with you about 'magical' diets - we'd all be on them if they really worked. I also agree with eating a healthy diet (click on my name to see my profile). Some people on the forum cut their carbs really low to control their weight and blood sugar levels. My normal diet is quite low in starchy carbs and I don't have added sugars, except in my one small square of dark chocolate each day! I eat very little meat, as my husband is vegan. I do eat fish and some eggs and cheese. Don't be too afraid of eggs, as most of the cholesterol in our blood is made by us in our liver. 16 months since my diagnosis of PMR and I've gained just 1kg - probably more due to reduced activity than anything. My blood sugar level is better now than at diagnosis!

    If you are truly vitamin D deficient, did your doctor prescribe a MEGA dose to correct it? I was given 50,000 IU once a week for 8 weeks - other preparations are available! Now I take the twice daily dose of 400 IU together with 600mg calcium. (Unfortunately, my DEXA scan did show that I have osteoporosis, so I'm also on a bisphosphonate drug.)

    When I was on the higher doses of pred I didn't sleep well - did lots of puzzles in the middle of the night - kept my brain working! It's improved since I've been on less than 10mg.

    All the best for your appointment with the doctor.

  • My tests were alway normal. I tried fasting, acupuncture, strict 'diets' green drinks....worked with a naturopath. Nothing helped. I was so stiff, it was so painful if I tried to do anything (deal cards, close a car door, pull up my pants..). Rheumatologist felt I couldn't have PMR because my tests were normal but then I woke up one morning felt so ill and went to see my Dr. and got the magic pill and I responded IMMEDIATELY to pred. and I never did have any other side effects!

    I started at 15mg. and after 2 and a half years, I am down to 1.5 mg. I got down to .5 but then started to feel a little stiff and sore when we had some stresses in our lives. This spring my mom got sick, died 2 months later, meanwhile my mother-in-law got cancer and died last month...and we moved....I was noticing a bit of stiffness and soreness, so, I went up to 2. Felt well and now am down to 1.5 (my husband is executor for his mom's estate...so, we are in the process of cleaning up ....getting special mementos to the right people, dealing with a lifetime of things...)

    Some Dr.s don't believe that 1 or .5 mg. really do much. Obviously, they have never had PMR. I know that even this small amount of prednisone is keeping me feeling well....

    I am 65. I was fit and active when I started to feel stiff (e.g.. getting out of a car even after a short 20 minute ride). It took a year or two for the full-blown PMR to hit - so stiff my husband had to push me out of bed, I couldn't reach up to take clothes off or comb my hair, not sleeping, crying in the middle of the night because of the pain in shoulders and arms - could not move my arms...some people say it can hit overnight. that must be so scary.

    This forum, as so many have written, is an absolute godsend. Gives those of us who come up against medical 'professionals' who have little experience with this condition some courage to speak up for ourselves.

    Take care. Hope you have a decent day. Never worry about speaking your truth!

    Pam

  • So pleased that you are feeling much better,it is amazing how quickly the steroids relieve the symptoms,it does sound as though you do have PMG,I wish you all the best and hope you stay Ok xx

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