How I have been coping with GCA

I am taking an anativiral every day and am at 6 pred working on tapering. Have had flairs but tjhis is the best year since 2013.

I am vry sorry,  I was up to 80 Pred once too. I know nothing of Reclast but

I think somehow it all gets triggered by something.  

There are people who THINK that PMR may be a viral infection. These days they are few and far between. There are a lot of theories.

Yes, and one of these they might figure it out. I read all I could find on the internet and they have a pretty good story. Right or wrong I am continuing on the diet. Wife is now 103 days without a migraine on her phase of the diet. It also has improved my blood sugar readings. So all is good! 🙂

"correlation is not the same as causation"

Absolutely - and that was what the expert comment on this single report said. The virus is there - but there were patients with GCA where it wasn't there and a lot of people who have had CP/shingles who don't have GCA.

I wonder how many people who have GCA and or PMR had chicken pox? I know I did as very young child? I so I have the virus. Plus I have had the shingles vaccine, anyone else?

At a guess most of us! Did you know that one of the adverse effects listed for the shingles vaccine is PMR? 

https://patient.info/forums/discuss/shingles-vaccine-and-polymyalgia-rheumatica-prednisolone-272690

Which is good enough reason for me to say thank you but no thank you. Added to which it has almost no effect in older patients - it works best for patients in their 50s and early 60s - after that the effect declines considerably.

No I did not know that one of the side effects of the vaccine was PMR. If I had known I would have never gotten the vaccine, but I did not know anything about PMR.

As far as I know I never had chicken pox. Two of my children had chicken pox, at different times - years apart.  I didn't catch it then, nor did the third child although he was still young enough to be bathing in same tub as his older brother who did have it. 

Funny Anhaga, how one individual get a disease and the next person exposed at the same time does not. I guess we will never understand!

To make it even more complicated, I believe there is also a connection to stress. This is known for shingles, but I think it is the same for PMR and GCA. I started with very slow onset of PMR, until after months of increased stiffness and shoulder pain I could not get out of bed anymore. Then the miracle of prednisone. But then I moved my daughter from NewYork to Chicago and that was apparently too much. Fever, incredible sweat and in the end two times trouble with my right eye changed the diagnose to GCA. So start with 60mg, GCA was under control. Still, I feel that stressful meetings and stress in itself lead to sweating and low fever, things I never had before.

Oh definitely stress was my trigger.

Koen1, I came down with intestinal virus, just as the IV was getting under control, I woke one morning and could hardly walk. I explained my situation to my doctor and my wife elaborated. The following day my doctor told me that she thought I had PMR and she would call in a prescription for me. 🙂

Ah. That will be the reason all medics warned me about shingles. Keep away. I had two episodes of chickenpox. One I suspect was false. Epidemic in (Ceylon) boarding school, anyone with a rash was bundled back home. So was I but it was more likely a heat rash which disappeared the next day. Not that I would own up: I was loving the holiday! 

Next was when I was mid-20s. Visited friends who said their kids had chicken pox. We said we've had it so not afraid. Famous last words! Got it within days. It's called Karma! 

Mich, you may be lucky: I read somewhere that when the PMR appears quickly, it also should heal more quickly and you should be able to get off pred faster.

We all know that it is nonsense, but in the end it is easy to jinx yourself, isn't it?

koen1 Getting PMR undercontrol at first went very well, but I am now trying to reduce from the flare. The on initial PMR, undercontrol 20 mg for 2-3 weeks felt fine, started to taper. The flare 30 mg for about 6 before starting to taper. Hoping to drop to next level next Monday. One never knows, but I got a smile on my face, working my way down! 🙂

Good luck, Mich! I started yesterday on 17.5mg for the first step. I do the DSNS 4day process. Total 26days to get completely to 17.5. I went from 60 to 25 from September 2016 to December 2016. Then had a flare up and went back to 60. Now 7months later starting 17.5! I hope to be below 10 around year end.

Thank you koen1, I hope to start a 3 day DSNS process on Monday, going to 18 mg, currently on 20, 15 am and 5 at bedtime, will reduce to 14 am and 4 bedtime. The 3 day process will take 16 days. Good luck koen1, on your journey. I am trying to keep a smile on my face on my journey hope you can do the same. 🙂

I take my full dose around 6 AM and then take one heaping tablespoon of bio-active organic blueberry yogurt. Just before bed at night I take 40mg Famotidine, for my stomach. And I take 2000 ie Vit D and 500mg Calcium.

All together seems to work well for me.

koen1, I am a walking Pharmacy, PMR, Diabetes, this diet, you need a scorecard to figure out what time of the day it is. Funny how things change, I went for years never go to a hospital, in the past couple years been at the Medical Center/hospital more than the previous 77 years. But I am still in there kicking with a smile on my face. 🙂

It is VERY unusual - though not unknown - to have CP twice so I suspect you are quite right about the first time. Similar thing happened to us - we were in the UK for the "visit the family" break and arrviing at our first destination were greeted with "A's got CP - are you sure you want to stay?". Nat had had it, Esca had not (too young and breast-fed) so we decided to take the risk. The first spot appeared at my brother's - and I discovered HE hadn't had it . He didn't get it - but did from a colleague a couple of years later (by then in his 30s)! Then we got to t'other gran - she hadn't had it.  The other cousins were staying across the road - again, one had had it, the other had been exposed loads of times so mum said "no problem, she must be immune". She got her first spots the day school restarted.  

Oh no. That's hilarious, though I suppose not at the time. I remember the days of 'measles parties', when it was part of childhood to go through CP, measles and mumps. And the relief of parents when 'all that' was over. 

I got measles in boarding school and spent three weeks in the Infectious Diseases Hospital in Colombo. Others thought it was a bit callous for parents (I had the proverbial no-like stepmother!) to do this, but I had a ball. I had a semi-detached room to myself with garden and - I remember - marigolds; my ayah (nanny) looked after me, cooked meals and teachers at school gave me lots of books from the library, including an entire Punch hardcover collection (I loved the cartoons) and sketch pads and pencils. At night, my ayah and I sat outside and watched the fireflies. I was eight years old. 

(Still like to sketch - this was an old house behind the motel we stayed in Queenstown (NZ). Years later I went back and the town had morphed into a hideous tourist mecca: crowds of aimless people, noise, smelly deisel buses, hugely expensive restaurants. Any 'character' houses replaced by big hotel complexes. Very sad.)

Love the sketch! Did you ever read the Greenknowe books? Reminds me of them.