Are there any American rheumies interested in PMR?

Wow, you have done really well reducing to 5mg in a year.  I hope you are successful in continuing that trend.  My last attempt at decreasing from 4mg to 3 1/2mg went sideways and I'm back to 10 / 9mg alternating and hope to go to 9 in a couple of weeks so please go slowly, slowly at such low doses.  Have you had adrenal testing done?  Just curious because I'm considering doing it once I get to 7mg just to see if my adrenals are actually kicking in.

Where in Florida are you? I'm visiting my sister in Indian Harbour Beach but heading home to B.C. Saturday.

No haven't had the adrenal testing done. Never been suggested. Just coming from the va to the medicare system. so my taper has been self-defined.I live very close to indian harbour beach on South Tropical Trail, Merritt Island, south of Pineda Causway.What is the adrenal test?

so very many variables in these equations.

primary doc that  has a family practice diagnosed my

PMR but sent me to a Rheumy for a second opinion and he

concurred that it is PMR  Primary put me on pred and

has been monitoring me for year and a half.  Soooo some

docs are aware and do the right thing.....just have to find

one.  Mayo clinic is a good idea......look at their web site

and see what they have to say about PMR.

When I had my flare I was in my third week of the DSAS method of Eileen's going from 4 to 3 1/2.  I had been in Mexico for 7 weeks during which time I had arthoscopic surgery on my ankle. No problem at all with my PMR.  I returned home a month after surgery (dec 15th).  Still no problem.  We travelled by car to my daughters about 6 hrs away from us to spend Christmas with them and returned home Dec 30th albeit with a cold.  No problems...  I thought, this is great, I've done all these things and no problem with my PMR so on the second week of January I started my decrease. 1/2 mg first week, 1 mg second week and 1 1/2 third week and wham.  I left it a few days in case it was just pred withdrawal, even though it didn't feel like it, but soon realized I was having a flare so bumped the pred to 4 then 5 and finally had to go to 10mg. Boy was I unhappy!!  Now I'm scared to death to decrease but have made it to 9 / 10 alternating and will stay there until we're home and settled for a couple of weeks then hopefully be able to continue a very, very slow reduction.  I was dx'd March 2013 by the way and that was my 3rd flare. One my GP had me reduce too fast and the second was my own impatience.  I am 65.  Probably more than you need to know😕, sorry about that.

I'm not medically trained but my understanding is that our bodies convert cortisol to "prednisolone" or something like it in the amount of 8mg a day.  When we are on pred over that amount go "OK, we don't have to do this anymore" so when we get to doses of about 7mg they need to start producing again. If they don't I believe we need to stay on low doses of pred until they do. In some cases if the don't produce enough you may have to stay on pred indefinitely but not absolutely sure on that.  The adrenal testing checks the function of the adrenal glands to see how they're doing.

Best of luck on your PMR journey,

hugs, Diana🌸

 I'd actually love to start one in my area but don't know anyone with PMR except a friend who has been in remission for about 5 years and it ran in his family.  It would be nice to have someone near by that REALLY understands what we are going through and how we feel.

Have a happy day

Hugs, Diana🌸

I am 65 also!

I have a PMR theory: All of my PMR episodes follow a severe physical or severe mental trauma. And from what I have been able to gather here, a lot of others usually have a stimulating event.

I tell the following to illustrate:

12 years ago, a fully torn rotator cuff from a fall while skating (Arm turned blue)  which resulted in surgery, the First major PMR, @ 53 years old. Undiagnosed and untreated, lasted 12 months, but had both shoulders and 1 knee surgery. The first shoulder needed to be done, I think the rest was PMR, although the knee was slightly torn. In both shoulders the surgeon commented on how both were very inflamed ( arthroscopy, saw red where he should have seen white in joint.)  Then after recovery, a few minor hip flares till Dec 2013, then a  bitter, surprise, and  quick divorce (she served me on Christmas Eve after draining a few accounts,) After 60 stressful days, settlement and divorce. 30 Days later Big PMR. The minor flares were usually when higher stresses. 1 year later, taper to 3 mg, tear calf muscle, hematoma, and have to increase to 5 mg. due to flare.My PMR reaction usually takes 30-60 days from the trauma. I think it is either adrenal over or under reaction or production, and the delayed reaction is due to taxation on the adrenal cortex's? I think diagnosis related to "stress" should be amended to include "trauma."  Stress is too light a word to describe my major PMR stimulants. 

I suspect that PMR is a complex biological reaction that is not remedied by prednisone, but a pred is parallel path to supress the results of decreased cortisol?? Please forgive: got a "c" in organic chemistry. I don't think it is a substitute for what the adrenals are or are not doing, I think it is "something else". If we could stimulate or suppress our adrenals to do what they were supposed to do, or not, that would be the answer.

So...

  I really avoid doing things that could result in my prior injuries, and quit dating! HA.

You did not include the time from your surgery and stresses to the time you had the flare and increase pred? Just wonderin'.

I am not sure how cortisol compares to the prednisone we are on,  

We got home on Saturday after our great visit with my sister and her husband in Indian Harbour Beach.  Sorry, didn't see you wave when we drove by but did get beautiful shot of your white peacock😊.

In retrospect, I do think I probably had to much going on previous to my last flare. I had been to San Diego for a week, Florida for 2 weeks and Mexico for 7 weeks.  I had arthoscopic surgery on my ankle in Mexico so was on crutches for 3 weeks but my Dr. was very pleased with my speedy recovery. I am so happy that I can walk without pain and limping for the first time in a couple of years.  We returned home mid December and left again to visit my daughter for Christmas.  I really felt good and, although I had stayed at the same dose during my travels, decided I could attempt a decrease.  I used the DSAS method but didn't realize I had to split the days taking the new dose.  My body had handled consecutive days to this point but I guess the combination of the travel, surgery and dropping 1/2 mg each day in my third week (1 1/2mg total over 3 weeks) was to much and away I went.

I'm hoping my GP will agree to doing an adrenal test when I'm at 7.5mg just so I can use it as a baseline as I reduce further. I think the adrenal testing will show if my adrenals are picking up the slack as I get back to 4mg and might indicate if my reduction plan is moving to quickly (or not).  I have bloodwork done about every 3 months but we are only allowed to have either CRP or ESR in BC not both.  

Hope you have a great day and get a little cycling in.  You are in a great place for it.

Hugs,  Diana🌸

There are a few albino peacocks at the North end of this South area on Tropical Trail. They are interesting.

Your message raises so many questions:

Were you in Mexico for the surgery? Did you feel any additional or reduction in PMR inflamation after the surgery?  Was the reduction of pain/stress/trauma from ankle repair, thereby reducing overall PMR inflamation, have moved you to prednisone reduction?

I noticed that after my surgeries in 2003 (2 shoulders and knee) I had gradual recovery from PMR symptoms after about a  8 months. PMR at that time undiagnosed and untreated. toughed through it.

Wow, you are quite the active traveler! 

As far as affecting my PMR, I really didn't change anything except to stay at 4mg until I was home in December. I had no change in symptoms so I think I was very lucky.  Some days a little more tired than others but I have learned to rest when I need to.

As far as travelling goes, we fell in love with Merida, a colonial city in the Yucatan.  We have spent a little time on both coasts but since we retired 1 1/2 years ago have spent much of our time there.  It is only 1 1/2 hours to Orlando so we visit my sister either coming or going to/from home.  Hoping to go to Italy in September and then spend most of the winter in Merida away from our miserable gray Northwest weather.

Well, off to pump up the tires on our bikes. Pitt Meadows is surrounded by a  dyking system which are great for picturesque easy rides and it's a beautiful day.

Hugs, Diana🌸

I also hiked in the Cascades. My sister, her husband and myself with our six kids (from 2 yrs to 10 yrs.) over Asguard Pass (sp???). We had people taking our pics because they thought we were crazy I think.  It was quite a challenge.  The kids had a great time playing in freezing waterfalls and climbing on the glaciers chasing marmots.  They have no fear💕

You're really bringing back memories😊.

To bad you never made it to Vancouver.  It is really beautiful.  Maybe someday.....