What a Surprise - a PMR Diagnosis

[PeaceableDragon]

For Lent this year I gave up sugar and dairy, adding to the meat and poultry from which I abstained 40 years ago. My weight declined significantly (23 pounds in 7 weeks) and then, one day in May of 2017, I could not get out of bed. My wife helped me put on a sock as the pain and lack of flexibility made it difficult. How could his happen?

You know the story.

It was seven weeks before PMR was diagnosed and I was put on Prednisone. Now it is a matter of balancing symptoms with side effects. I stumbled on this website and am ever grateful for the advice from those who have come before me.

Conventional Western Medicine started me on 15mg and, after a month I went to 12,5 and now started 10mg after another 3 weeks. I am now reading online of the experiences of bloggers with tapering. Thank you all !

In the meantime I have been taking numerous supplements, following the advice of a M.D. in Functional Medicine. She is not only interested in the control of symptoms, but seeks to find the cause. Presently we are thinking that the trigger might have been the weight loss and consequent build-up of toxins from the release of fatty acids.

The third part of my relationship with PMR is the augmentation of practice of Qigong. Energetically, there is a strength that permeates my body and the environment around me and promises to provide great relief from this dilemma.

With these three ways of dealing with my new friend, PMR, I hope to someday bid "Fare Thee Well!"

[Rose54]

Hi

Any exercise that is light and not to physical helps strengthen and stop muscles wasting but don't over do it.

Universal life energy is a great healer in any form you use it

Its found that PMR normally attacks us after a period of stress placed on our body's so unless you can identify any other stress ,I suppose it could be stress of changing diet having a effect on your diet.

Best Wishes

Rose

[PeaceableDragon in reply to Rose54]

Thank you Rose, for reminding me of the other stresses on my mind and body besides the voluntary weight loss.

I teach Russian language and in the few weeks before the Day of Destiny (when I could not get out of bed) my students had Advanced Placement exams and also state competitions -Stress. In the week before the DofD I hosted a Qigong and Yoga Seminar with visiting master teachers -Stress.

I think that PMR is helping me understand that I need to take it a bit easier.

[SheffieldJane]

Your MD sounds fabulous! It makes all the difference. So many people on here stumble around with disinterested doctors. I have every confidence that together you will banish the not so peaceable dragon that is PMR.

Go well! Let us know how you progress.

[PeaceableDragon in reply to SheffieldJane]

Thank you Sheffieldjane for your kind thoughts.

[pammy_hyland]

I am 63 and I have had PMR for 7 years now and cannot believe that you have been starving your body so badly !!! I have been doing the opposite and following a high protein diet but not low calorie (100-120 grams per day of protein ) now for 8 months and I can tell you that I feel the best I have been since I was diagnosed i have lost one and a half stone and am slimmer now than I've dreamt I'd ever be again because of the steroids! I have just had my latest check up and bone scan and was told they were so pleased with the results and to keep it up which I fully I intend to do as this is my way of life now .I have built up to walking 10.000 - 20.000 steps per day and have even climbed Snowdon. I have been on a maintenance dose of 5mgs Prednisone now for 1 year and intend on staying on it as I believe and feel judging by my own experiences that PMR only goes into remission and intend to feed my body in the right way and enjoy a painless full life for as long as possible.

[diamondwhite in reply to pammy_hyland]

Pammy_hyland I would love to have a copy of your diet I am struggling and although I have only put a few pounds on I look like a put on two stone. Is this the dreaded bloating that I am told about. I was diagnosed about 3 months ago after four months of agony that I just put down to arthritis in my hips eventually got so had to borrow a wheel chair to go see my GP.

[PMRpro Ambassador in reply to diamondwhite]

The simplest approach (I think) is low carb - no processed carbs and no bread, cakes, pasta, rice, potatoes. Lots of above ground veggies and salads, no restriction on protein and sensible fat. Meat, poultry, cheese and eggs as much as you like really.

I lost 35lbs of pred-associated weight that way while still on 15mg pred and although I am a bit stuck now I am not desperately overweight and all the Cushingoid signs are gone - no moonface, midriff fat all gone and no buffalo hump. And I rarely feel hungry. I do allow myself the odd treat - ice cream (this is Italy after all) and very occasionally a pizza but I can never eat a whole one, the rest goes home for another couple of lunches, and a small homemade lasagne when OH begs enough! And I find it very easy to go out for a meal without difficult - meat or omelette and salad is always an option. And now gluten-free is so popular in restaurants that helps too - but careful, no spuds!!!!

[PeaceableDragon in reply to PMRpro]

Hi PMRpro, Thank you for your posts, especially the one on tapering that outlined a possible plan with supporting evidence for its effectiveness.

I have noticed that since taking Prednisone my desire for food has increased and take this a something chemical waking up the feeling of hunger. I have put on 6 pounds (.4 stone) in the last month.

The school year that starts this coming Monday is my last as I retire in June after a great 50 year run. I am hoping that I will be too busy to recognize Prednisone-induced hunger and just eat normally.

[PMRpro Ambassador in reply to PeaceableDragon]

Pred causes the liver to produce random spikes of blood glucose - which trigger the production of insulin and the BS levels fall rapidly - and that makes your BS too low and you feel hungry to bring the BS back up to normal. Rinse and repeat!

By cutting your intake of carbs it reduces this effect - not entirely but far enough to reduce the risk of steroid induced diabetes.

[pammy_hyland in reply to diamondwhite]

It's mainly the high protein if you don't eat enough you don't loose and No less than 1500 calories but not cutting out any foodgroups at all you eat what you want as long as its within that limit but use my fitness pal and track it all and that makes it easy but I eat twice as much now as I did before ! I do feel your needs to get used to the steroids more yet but yes by all means start now and contact me if need be and i will help but it's my way of life now and I love it as I can snack on biscuits cakes etc etc because the steroids make me have a sweet tooth and dont be told to do it the old fashioned way .I am now on 2,010 calories as i don't want to loose anymore but high protein for life for me .It's the only way for us as we need to feed our bodies for our own wellbeing xxx

[PeaceableDragon in reply to diamondwhite]

Hi diamondwhite,

It was really not so much of a diet as just joining friends at Lent in abstaining from Junk Food- especially sugar and dairy. I unfortunately have an affinity for ice cream.

For some reason the effect of not eating junk for 7 weeks was the loss of 23 pounds (1.65 stone).

[PeaceableDragon in reply to pammy_hyland]

Congratulations on your progress, pammy_hyland. You have acquired much knowledge in taking care of yourself.

Clarifying my post, I did not lose weight by starving myself, but rather by abstaining from sugar (other than fresh fruit) and dairy during Lent. The effect of going off sugar was interesting as my body craved it less and less over time. During Lent, I ate plenty, just not the junk that I had been consuming.

The physicians who are advising me think that it was a combination of the release of toxins from the quick weight loss combined with a month of stress as my Russian language students sat their Advanced Placement exams and performed in state competitions. Moreover, I hosted a week of Qigong and Yoga seminars. The day after all that was over, guess what? I couldn't get out of bed!

Keep in touch. I would like to continue hearing your advice.