Polymyalgia Rheumatica

I was diagnosed with PMR 4-5 years ago and had the GCA surgery on one side only and it turned out to be a false negative which ended up causing me to lose some sight in my left eye. I was later told that I should have had the other side tested for GCA and then still put on a high dose (80-100) of pred for a week or so. I've been taking 4mg of pred for a few months and am going to see if I can reduce it slowly by .5 mg a month. 

You can do stanley, are you using the DSNS method? 🙂

Not really. In the past few months I've quit taking it for 3-4 days and have temporal headaches or a vision problem that freaks me out so I get right back on it. I've experienced weight gain of 10-15 lbs  (5' 10" and 190 lbs now) and have the prednisone round head. I'm 75 years old, don't exercise, don't watch my diet and have a cocktail every night. I haven't changed my life style and have never been told that PMR or CGA would improve if I did. 

Stanley, 80, diabetic for 55 years, been watching my diet for years and been active all my life. Totally different life style, I am happy active guy, always looking to the future. If you are happy and doing great good for you. I wish you the best on your PMR journey, with a smile. 🙂

Does your doctor know that you sometimes stop taking Pred.? Four is a low dose, certainly, but even low doses can be significant and the fact that the pain comes back sounds a bit ominous.

Many of us have found that the last few steps to zero can take an unbelievably long time. I was told on no account to stop taking my 1 mg. when I had a hip replacement as my body would miss it if discontinued at a stressful time.

re Lifestyle; When I complained to my very good GP that I thought I was a rotten advertisement for a healthy lifestyle his reply was that PMR was not life-style related. Don't know if that's any consolation.

Cheers!

I don't think it's a good idea at all to stop taking pred abruptly if your normal dose is around 4 mg.  Don't forget your adrenal glands are relying on that dose, and you need to taper slowly for the sake of adrenal function, let alone possibility of PMR/GCA flare if the disease is still somewhat active.  

Your PMR/GCA might not improve, but your weight gain would, as you undoubtedly know already, be controlled through avoiding refined carbs and sugar, and any exercise at all is better than none!  Enjoy your cocktail, but please look after yourself!

whitefishbay, we are all different, I have been active all my life and enjoy being active. One must follow their own path. Try to enjoy each and every day. I try to think positive, busy and smile. 🙂

You can only do what YOU can do. I skied with PMR - but Mich and I have skied for years! Whatever you do, start small and build it up VERY SLOWLY - that means adding a few mins every couple of days until you find YOUR limit. The same applies to intensity, add weights or speed or whatever in very small steps - until you find YOUR limit. It won't be the same as mine or Mich's or anyone else's.

whitefishbay, back in the spring I could not walk and was in a wheelchair with PMR flare. EileenH and others got me going 1/6 of a mile at a time. I walked with a cane for months. At first I thought I was a goner, but little by little I got my strength back, now I work on my balance. Continuing on my journey planning for the future, thinking positive with a smile on my face. 🙂

Thank you for sharing that. I feel like I am the only one, although my ex-husband has it and my younger daughter has it. I have good days and bad days but have not been in a w/c and will fight not to.

Today, I feel pretty good just some aching in my quads.

Also, my Dr. said this should go away, let's hope.

Sadiebelle, I never reduce my dosage if I have any PMR pain, any sign of flare bump it up and tell the doctor after the fact. Tapering to 11 mg now from a high of 30 in the spring. My PMR journey has not always been smooth, but I started moving in the spring, I have been positive and keep a smile on my face. Good luck! 🙂

How the weather there, too warm and dry here. Need some cold and snow the hill is suppose to open 11/24 and we have NO SNOW! Think snow, positively! 🙂

I always smile. My problem is the stress at my part time job and then I need to have a day of R and R. They don't understand the issues with this cuz they can't see it.

I am on 16 mg. of Prednisone and also give myself a shot once a week of Actimra.

I don't want snow here where I am - Malta! However, it is forecast for tonight and the next 2 days at home! That's fine...

Good for Sadiebelle, I believe that attitude is very important, stay positive and keep smiling. SMILING 🙂

Good for the Dolomites, enjoy the warmth in Malta EileenH. But think

Snow for NM 🙂