Hi Maggi, I live right downtown (Main Street and 4th Plain) in one of the townhouses by Starbuck. We could meet there sometime after Memorial Day. Please, let me know when it is convenient.
Thank you all for your great information!! I am so happy that a side effect of my post is that some of you can meetup in person in Florida!
I just looked more closely at Yale Univ. Before I had looked specifically for PMR and GCA and did not see anything, but now that I look again there is a big interest in immunology and inflammatory diseases, so that is encouraging.
A long long time ago I worked at Yale as a data analyst and got an MPH in biostatistics at the Yale Med School, and I still have friends there on other faculties, so it would give me a great excuse to go visit!!
The Mayo clinic looks very promising too, and one can get a flight directly there from here. It sticks in my mind that one of my grandmothers went there 80 years ago! The Mayo clinic is really setup for out of to town patients in a way Yale is not. Then again I can get to New Haven by train if the train doesn't fall off the tracks! It sticks in my mind that one of my grandmothers went there 80 years ago!
If I have to put up with arrogant doctors, at least I want to be sure they actually know something!!! So I will let you all know which one I go to later!
Hi Diana, you most certainly drove right by, since all houses connect to S Tropical. Hope your trip is nice. I waved, did you see?
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,
I live in the Boston area and there are many doctors here that are familiar with PMR. I am seeing a rheumatologist named Jonathan Kay at UMASS Medical center who is very informed. I was worried before my first appointment that he might not be as knowledgable as I am from being on this web site and reading all I can on this disease and how to conservatively treat it. But, he was on the same page as me as to the very gradual taper off prednisone.
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.
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.
Yes, I did have my surgery in Mexico. It is known for excellent medical care and I had my surgery within 2 weeks of my initial visit to the doctor. My wait here in Canada would have been into early 2016 and at my age it was just to long to be unable to walk without pain.
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.
In the 70's, I was stationed at Oak Harbor, Whidbey Island. Never flew over Canadian airspace, but spent time through the Cascades. Beautiful place to be in the summer! Small world
I actually had a boyfriend stationed in Oak Harbour but that was in 1965 or so. Our family had a summer cottage just across the border in Birch Bay, WA and it was quite the meeting place in those days. Wow, crazy how small the world gets.
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.....
Actually, made it to vancover on by car with ex-family in 1976, and skied Whistler-Blackcomb around 2000 . I'm sorry I didn't stay there in the Northwest. Flew A-6's out of Whidbey, some of my most poignant memories of flying! One of the Best low levels through the Cascades we would take was near that pass. From Boardman OR, bombing range through the Cascades to Whidbey, all under 500' above ground, now bringing back my memories!!