Recent diagnosis PMR Including a Self Diagnosis

Posted by bridgegoddess @bridgegoddess, Mar 5 3:44pm

I am an 81 year old woman from Canada. I was a Pharmacist in the good old days so I have quite a bit of knowledge and really fortunate to have a very good memory. I was hit in mid Dec,2019, but assumed it was an arthritic flare I gave a multitude of issues that could cloud the diagnosisI I have had two hip replacements, of course caused by osteoarthritis, plusause serious degenerative disc disease Too complicate the issue , I had been taking Letrozole for almost four years which helps block the estrogen involved in Estrogen +Breast Cancer Number one side effect, is joint pain and muscle stiffness. With the agreement of my GP, I decided to quit taking it in early Dec .I Did this because my legs had starting feeling like blocks of wood and the joint pain was Unrelenting. My legs felt much better within 2 weeks
But then my shoulders and shoulder girdle suddenly started feeling rigid and very sore I had never had the osteo in that area. As the pain increased dramatically, I decided to see my GP I am blessed with a wonderful GP but however everyone loves hard and it is bard to get a quick appointment So I saw another Dr in the same practice , who prescribed some T3’s However she did not ask me any questions when I told her I had great trouble getting out if bed, getting up off the toilet and waking up every morning at 4-5 Am
When I got home I decided I need to do some research and after remembering that I had read about it, I headed to the Mayo Clinic website Bingo My age, my gender, my Danish ethnicity, and my symptoms all made sense I was able to get an immediate call into my GP or Rheumatologist, so I asked another Dr I knew to order the CRP blood test , My GO calked me before the results were posted and told me she was sure my self diagnosis was spot on. When the tests was published, she called immediately she prescribed 30 mg Prednisone. I was a like stunned at the amount, however she said she thought we needed to hit . With 2 days I experienced the wonderful side of the Wonderful Terrible Drug as we used to refer to it in the Pharmacy . I was still having some morning rigidity and pain in my shoulders, but only about 10 of the original levels. My rheumatologist gave me some options including going to. 40 for 3 days , but I decided to split the dosage at 20/10 That was a big help However I am anxious to get the dosage down , mainly because of the possibility of the effect in my immune system ! Because we are all at risk with the current Covid 19 , epidemic, I know my risk factors are higher at my age and I live in a Multi Family condo development.That increase the risk . So I tried 20/5 yesterday , Not as good this morning but I will try at this level for another couple of days and then go to 20 I am having trouble finding any research on dropping to 15 in the miring and 5 at night, because I know the reduction rate changes at 20 Any answers on the 15 morning dose , 5 at night ! I really appreciate having this conversation Myrna

Liked by calicojoy

I had found very good info and suggestions for dealing with PMR (prior to this Mayo one) at a site originating in the UK. Google Health Unblocked – I think you will find newer/more recent thinking on ways for tapering off Prednisone. NOT TOO QUICKLY! I was diagnosed in March of 2019 at the age of 83. I truly believe now (after reading so many familiar stories) that I may have had some "mini" episodes but dismissed them for one reason or another. But when it HIT is was truly miserable and the pain was way above 10+. When I was prescribed Pred almost 1 year ago it was like a miracle. The pain was gone within 24 hours: I could raise my arms, brush my hair, lift my arms to turn light switches on/off etc etc etc. I am also a Nordic. I am currently taking 7 mg every AM and will begin a slow taper perhaps next week. I was on 60mg for 1 week, down to 40, then 20 for a month, 15 for 2 months, 12.5 then to ten and down 1 mg monthly until I got to 6. Then I tried 5 and BINGO — back to 7 now for 3 weeks. Enjoy the roller coaster ride! I have become a believer in the need to CUT THE CARBS. There is also a Facebook Group, but I do not really have time for FB.
Good luck, Maija

Liked by calicojoy

REPLY
@maija

I had found very good info and suggestions for dealing with PMR (prior to this Mayo one) at a site originating in the UK. Google Health Unblocked – I think you will find newer/more recent thinking on ways for tapering off Prednisone. NOT TOO QUICKLY! I was diagnosed in March of 2019 at the age of 83. I truly believe now (after reading so many familiar stories) that I may have had some "mini" episodes but dismissed them for one reason or another. But when it HIT is was truly miserable and the pain was way above 10+. When I was prescribed Pred almost 1 year ago it was like a miracle. The pain was gone within 24 hours: I could raise my arms, brush my hair, lift my arms to turn light switches on/off etc etc etc. I am also a Nordic. I am currently taking 7 mg every AM and will begin a slow taper perhaps next week. I was on 60mg for 1 week, down to 40, then 20 for a month, 15 for 2 months, 12.5 then to ten and down 1 mg monthly until I got to 6. Then I tried 5 and BINGO — back to 7 now for 3 weeks. Enjoy the roller coaster ride! I have become a believer in the need to CUT THE CARBS. There is also a Facebook Group, but I do not really have time for FB.
Good luck, Maija

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Thanks so much for the information

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@bridgegoddess

Thanks so much for the information

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Good for you on the self-diagnosis. We all have to be our own health advocates, but it certainly helps to have had a career in the health professions. I am on my 3rd bout of PMR. The first was 16 years ago. I am now 73. The second started up 2 years ago, the 3rd started in November 2019. In retrospect, I think the last 2 are part of the same bout and I got off prednisone too quickly. I am now on 10 mg for the past month, 5 AM and 5 PM. I see rheumatologist again this week. I am planning to start decreasing at 1/2 mg a month, but will see what the inflammation labs are. It was good finding this website. My first time 16 years ago, I didn’t know anyone who had PMR and couldn’t find much information. Even my rheumatologist at that time thought I would be off prednisone in 6-8 weeks. It took 2 years. I think we both learned more about it. I was on 1mg, then 1/2 mg for a long time. I don’t do any specific diet, but I generally try to eat healthy. I do weigh myself daily and work on preventing gain (so easy to gain on prednisone).. I feel good, go to a senior exercise class, plan to start walking outside when the ice is off the sidewalks

Liked by calicojoy

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Thanks for connecting. Do you still notice more pain in the morning than any other time ? I was on 30 mg for 10 days and still had morning shoulder pain However much more tolerable levels than without meds. Splitting the dose helped a lot but my rheumatologist wanted me to try to get to 20 mg within the next week. I decided to try 25 for 3 days then go to 20. So the 20 in Am helps within an hour but the 5 at night is allowing break through pain in the early morning But it is alot better than original but still annoying I am just wondering if you are completely without pain when you wake up . It seems a characteristic of the disease is elevated morning pain Not sure if that is true for most people

REPLY
@bridgegoddess

Thanks for connecting. Do you still notice more pain in the morning than any other time ? I was on 30 mg for 10 days and still had morning shoulder pain However much more tolerable levels than without meds. Splitting the dose helped a lot but my rheumatologist wanted me to try to get to 20 mg within the next week. I decided to try 25 for 3 days then go to 20. So the 20 in Am helps within an hour but the 5 at night is allowing break through pain in the early morning But it is alot better than original but still annoying I am just wondering if you are completely without pain when you wake up . It seems a characteristic of the disease is elevated morning pain Not sure if that is true for most people

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I experience some slight pain, in the upper arms, in the morning: though not enough to cause any problem. I continue to have morning stiffness which slows me down – the afternoon is the best time of my day. However, at age 84 perhaps I would have some stiffness even without PMR.

Liked by calicojoy

REPLY
@maija

I had found very good info and suggestions for dealing with PMR (prior to this Mayo one) at a site originating in the UK. Google Health Unblocked – I think you will find newer/more recent thinking on ways for tapering off Prednisone. NOT TOO QUICKLY! I was diagnosed in March of 2019 at the age of 83. I truly believe now (after reading so many familiar stories) that I may have had some "mini" episodes but dismissed them for one reason or another. But when it HIT is was truly miserable and the pain was way above 10+. When I was prescribed Pred almost 1 year ago it was like a miracle. The pain was gone within 24 hours: I could raise my arms, brush my hair, lift my arms to turn light switches on/off etc etc etc. I am also a Nordic. I am currently taking 7 mg every AM and will begin a slow taper perhaps next week. I was on 60mg for 1 week, down to 40, then 20 for a month, 15 for 2 months, 12.5 then to ten and down 1 mg monthly until I got to 6. Then I tried 5 and BINGO — back to 7 now for 3 weeks. Enjoy the roller coaster ride! I have become a believer in the need to CUT THE CARBS. There is also a Facebook Group, but I do not really have time for FB.
Good luck, Maija

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THANKS FOR YOUR COMMON SENSE!!

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