Three year battle and counting

Had no idea what was happening to me when I could not bend down a pick up a tool off of the floor. Next morning had a headache and felt sore all over ( like I had worked out) but had not. Could not shake it as it got worse. Went to my doctor where after a series of blood and other tests said I had developed PMR. Prednisone @15mg followed and as usual relief came but not for long. Reduction to 10 and 5 mg increased my muscle aches proportionally but was determined to withdraw from Prednisone. I’m down to 2mg/day now with morning aches and pain but at least I know I can make it. Strength and stamina have gradually dimished over these years. Muscle mass declining as well. Shrinking Man. Occasionally depressed over this condition as I am limited on physical activity with this stuff. Frustrated! Will get totally off of the Prednisone but not sure how it will go.

15 Replies

  • Hi Scarter,

    My initial reaction would be - why suffer when a small dose of Pred (say 5mg) would do you the world of good and very little harm in the way of side effects. Most of all, it would give you back some quality of life - which it seems is very limited at the moment.

    You obviously have reasons why you don't want to be on Pred, none of us really want to be either. But so long as you have the PMR, and no-one, not even the most experienced doctors in the world can tell you that, you need to take the CORRECT amount of Pred to help you manage it, or at least the inflammation caused by it.

    Ask yourself -would you reject treatment if you had high blood pressure, insulin if you had diabetes, drugs if you had cancer?

    You will get off Pred, but only when the PMR has burnt itself out, but in the meantime you may be doing your body more harm by not controlling it sufficiently.

    Me - GCA in remission after 5&1/2yrs. Starting dose 80mg.

  • Thanks for the reply. You may be right.

  • Hello,

    Perhaps if you think of pain as inflammation in the body that may be causing damage rather than just something to be overcome by 'manning up', it might help your resolve. If a small dose can stop that and possible development of complications, I'd take it. Chronic inflammation takes a lot of energy and resources from the body. The good side is that with inflammation under control and less or no pain, you may be able to redirect those resources, do more and stop being Shrinking Man and become Building up Slowly Again Man.

  • Thanks for your reply and honest opinion.

  • Personally I don't feel there is any virtue in getting off pred just for the sake of it. Maybe if you are unfortunate enough to get to 13 years and counting - like me - you too may feel differently.

    DL and Snazzy have already said everything else I would have said - I live a fairly unlimited life, I do almost everything I would want to. I gave up skiing for other reasons too and I don't expect to walk around the local mountains any more - both reasons we live where we do. Instead I walk on more gentle roads and drive to the slopes and watch. I enjoy being pain-free and feeling well. I'm not the shrinking person in any way.

    There are people on the forums who still participated in competition level sport, others who have very high standards - and they still do so because they accept the gift that pred offers. Being pain-free and able to train - albeit from a much lower level to start with but you can build up to pretty high levels - means you don't HAVE to give it all up.

    What more is there to desire?

  • I would take a look at this and read it:

  • Thank you ! Good info indeed.

  • Hi Scarter, I thought for a minute I was reading my own story!! 3 years on and I'm 12mg and thinking I probably should be on more. Loss of muscle mass is depressing and exercising is painful. I was driving down as quickly as I could to get off pred and now realise now that is the wrong approach. Good luck in your journey and don't be too keen to rush it.

  • Griggser

    Thanks for the words. This disease is probably one of the hardest to cope with or manage and even getting out for a brisk walk is taxing. I’m still fairly active so I’m bruising myself frequently doing things that used to be second nature. Dermend seems to work over time to manage. I’ve gained about 10 lbs and can’t seem to get it off. Exercise and diet (calorie counting) don’t seem to help. Doesn’t help that my wife is a good cook either. Lol! Thanks again for your input.

  • "This disease is probably one of the hardest to cope with or manage "

    Don't you believe it - and I'm not saying it to belittle your experience or you in particular.

    I'm saying it because, if you have to have an autoimmune disorder at all, then PMR is one that is preferable to many others. It rarely strikes until you have already had a full life. It does not kill or even cause serious damage to your body, particularly when well managed with pred which reduces the long term inflammation damage in your body. 25% of patients are able to get off pred within about 2 years, a further 50% are off pred in up to 4 to 6 years. As jinasc's link above says, pred itself at the sort of doses used in PMR does not cause serious long term damage. Even when on pred, used carefully and properly you can live a pretty normal life.

    If you feel hard done by with PMR, go and lurk on a lupus or vasculitis forum - both are on this site - and read of stories from young women with lupus or people who develop other forms of vasculitis which are life-limiting, prevent them ever having a job in the first place, having children, even if they can find someone who can cope with living with a partner with a chronic illness that stops them living a normal life. Who can't go out in the sun either because of the illness or the drugs that are the only thing to control their symptoms, and even that imperfectly. Who repeatedly end up in hospital for various reasons - and in many cases suffer organ damage such as kidney damage that means they need dialysis.

    Compared to that, PMR and pred are a doddle. Even after nearly 14 years I still feel that way.

  • In 2011 my annual physical indicated a higher than normal PSA.

    Went to urologist for biopsy and shortly after, uncontrolled shaking and vomiting and in hospital for E Coli blood poisoning which came close to killing me. Organs were shutting down and after 3 days they found a drug to get it under control. Seems My body was in the 2% that don’t work with the antibiotic they give you prior to biopsy. Ever had an ice bath because fever can not be controlled? Blood pressure falling fast due to organ shut down ? Told to call the kids if they couldn’t find a proper drug to fight the E Coli ?

    After 7 days in hospital I was told I had prostate Cancer. One month later I was at MD Anderson for proton therapy which led to proctitus which lead to anemia. PMR cropped up after iron infusion for anemia. Just a little background for you.

  • Oh Scarter what a terrible experience! You came face to face with death. Thank God you pulled through. Then to add insult to injury you are left with a quivering immune system and PMR. Cumulatively it is too much !

    It is no wonder that your psyche has retreated into depression.

    Please don't see Pred as the enemy. It is something the healthy body produces after all. Don't suffer anymore.

    You can gradually build up your physical strength. It ain't over until it's over.

    You are clearly stronger than the average bear! 💪🏻

  • Thanks for the kind words. I’m just interested in knowing how others are coping with PMR in the real world. Doctors have not been the most help for me.

  • Sounds like me...68 yrs young, always had strenuous jobs, millwright, heavy equipment repair, etc...worked out at home. ..then this...Dr at first thought just bursitis or muscle strain but I have had something like this in the past, (10 yrs ago) at the time it was never diagnosed as PMR but as thyroid malfunction, which it may have been because it lasted "only" four/five months...I told him, nope, this is spreading rapidly to both shoulders, arms, upper legs..luckly with blood tests "we" both came to the PMR conclusion...I had and perhaps in the back of my mind have doubts but it seems most likely..."elderly" onset RA?? sorta fits the bill too...anyway...Prednisone it was...I was terrified, reading all the bad things said about it on various way, only for a short time, ill do this with Ibuprofen, etc...well I started on 15mg and it of course worked pretty darn good, then I felt like crap after a week and a half..called the Dr. asked to go up to 20 mg...he was ok with it but no here I was the guy who was terrified of pred, asking to go I have slowly worked my way back to 15mg and doing o.k....a few rough days but thats no matter what dose...tell ya not terrified of prednisone anymore, its a very useful cheap drug...wouldnt want to be on a high dose of any length of time but with what I'm doing its more than I learned on this forum...I will taper slooooowly down.....I also started on a quality fish oil, turmeric, a good daily B complex.....I take a magnesium/calcuim supplement and, now this is just me, after doing research, I take creatine to help with muscle about creatine for older people...I also "try" to get in some exercise with much lighter weight than before....just know, when you play, you usually pay...sometimes worth the price....I also get days of feeling really depressed and crappy/lethargic, is it prednisone or PMR or probably a combo of both? one thing I find, a bad day is usually followed by a good one for whatever reason....keep up the battle, take charge, get second opinions if you want, your the boss...

  • Everyone here has given wonderful information. I too was of the 'off steroid ASAP' mindset, which led to a flair of my GCA. So 2 steps forward one step back, my taper is slower. My acceptance of the hair loss, bruises all over, weakness of muscles despite using them for heavy lifting, occasional infections from the many skin breaks are more manageable.

    Although I have very accessible if pricey healthcare here in the USA, I can & do see an Internist, Ophthalmologist and a Rheumatologist. But, I find I have to be my own advocate. These conditions are not their most serious clients.

    What has helped as well has been the metaphysical journey I opened up to 8 years ago. I know that everyday all of us are supported and loved unconditionally, are here in the physical realm learning and most importantly, that fear will call to it more fear to it. I have 2 choices everyday - to live in fear or in love. Love of self exactly as I am comes first. I am always part of the Divine and could not be otherwise. Everything we experience here is an opportunity to learn through.

    As far as your cancer diagnosis, I was very impressed with an interview Anita Moorjani's gave a few years ago for Hay House. She discussed her book "Dying to Be Me" which maybe worth a read for anyone with cancer.

    Love & Light, Nancy

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