Bob.. our Captain !!! | Arthritis Information

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Hi Bob, I have just answered a post from Teed - Pat, talking obout the Sail Boat that used to sail around in here.

 
The Fog has lifted and I'v just remembered you were the 'Captain of our Lugger.'...They were great posts way back then and still could be now as we seem to have more Crew on Board!
Anyway, how are you? I am really hoping you are back on shore?
Hugs Lyn
Lynn and all,
     I've been posted to shore duty from the good ship Prednisone for some months now, but am still not completely up to snuff.   It's hard to tell what is due to age and what is due to PMR.   My twin sister has not been able to get off pred for some ten years.  She's now at 4 mg and that seems the minimum to make her life bearable.  I'm considering going back on low dosage because of shoulders, elbows and hands, and lack of energy.  Any comments from the crew?
      Maybe it's time to get the ship back in commission.  After all, we're all in the same boat anyway.  We have a whole bunch of new talent to handle the oars, and if our old whip- cracker is still around, I think she can get them moving.  It's also time for the senior staff to resume the evening break for British Navy rum and cheap cigars.  I hope Ragnar will resume navigating, and we're honored to be the flagship for Admiral Mrs. UK.  Lynn, you can be the purser, so please try to get the salt beef with as little fat as possible.  Thanks.
the Captain
What am I missing here  - can you direct me to back posts so I can catch up with Sail Boat and the Lugger.  I don't know about an Admiral, can I be a 'donkey man' please?

Ragnar wrote his story for us and its on our website.   People love it.

Captain Bob,  I have been informed in the past, that anything below 5mg is considered a low dose  (mind other medics say below 7.5mg but I don't suscribe to that one).  Those medics are quite happy to keep people on 5mg if it makes their quality of life better.

I have also met a lady who is 91 and has had pmr for more years than she can remember and has been on 5mg for over 10 years.  All the side effects have disappeared as well. 

Its quite possible that your adrenal glands have not 'kicked' in yet as it can take up to one year from stopping steroids.  The bad news is that sometimes they don't 'kick in' at all.

There is some sort of test to see if they are working or not.   Ask the question and find out, if they are not  - get back your quality  - 5mg should not be a problem or so I am led to believe.

I myself am now down to 6, 6, 7 pattern for another two weeks.  After three and a half years I can't believe I have made it down this far.   The GCA has not flared (fingers crossed).  Aim is down to 6mg per day for next three months then 5mg.  If I make 5mg I will be one happy bunny.  My Rheumy says if I make it down to 1mg per day for the rest of my life he will be more than happy  - but will settle for 5mg.  I just want the ability to walk for more than two car lengths back.  It should happen on below 5mg.  But then who knows, cause and cure needed.

In the meantime, if I can help to 'float a boat' just steer me to the nearest pond.


Hi Bob and all the crew!

 

I am back on board as navigator (Ragnar the Viking used to sail at least in some US film many years ago). I have just been navigating in the air to some European destinations but will stay on board now that I am back. For preparation, I tested a ship simulator in Venice for up to 300 000 ton ships and it was no problem. As far as pmr is concerened, I´m ashore, but maybe I can navigate anyway.

Ragnar

Ragnar, great to hear from you and just to say your 'story' has helped on the website.  If and when you want to update it  - just email.

Now as the 'donkey man' I don't know if I can handle, 300,000 ton ships  - so how about a Kon Tiki sized one.   That I can manage with my GCA and tablets et al.

Ahoy this ship. Can I stow away now as the old PMR has gone missing in action?  It would be fun to see how many show up for this sailing. 

Hi Lyn, Bob, Ragnar and Mrs UK.  I would enjoy a shot of good old Captain Morgans right about now but I will pass on the cigar.  I might want to start smoking again.

Bob, I think if you are in pain that it is not a sin to go back on ol' pred.  Just enough that you get some relief.

Ragnar, it is good to hear you are still off pred. and navigate away.  Good to be in touch again.  Di is still doing well and I get pictures now and again from her.  She is feeling pretty good and is down on the pred also.  Getting ready for winter over there too.

Mrs UK...It is always good to hear from you and I still am amazed at how much you have accomplished toward finding all those facts about PMR and helping to start a new site.  You are a valued member.
 
With PMR there is always hope.  Mine came to a screaching halt while I was still on 7.5 mgs pred but it still was a while before I was pred free.  You still have to taper off and the Dr. monitored the adrenal glands for some months after.  She also kept testing the sed rate just in case it came back....sneaky old poly.
 
Good to "see" you all and everyone stay well.
 
Pat 
 
 
Hi Sailors,  I am off on an expedition to Bonnie Scotland, unfortuantely no sea route there, so will be a landlubber.  I am so excited, packed the two lots of 60mg, just in case and away I go.  A non sailor is driving me up in a not very friendly green car  - but who cares  - I am escaping and off to an Enchanted Ball, where the organisers have donated an auction prize and whatever cash is made comes to our new Charity, which as you all know is funding research into cause and cure.   Yippee, I love it when somebody offers me cash - and just think on I am sailing (in the words of Rod Stewart) but I cannot sing like him, I just cleared the room of 4 people with hands over ears.

PS  Our DVD on PMR and GCA made by patients for patients will be launched in the New Year.    Yeh sometimes the grass is greener. 

And Just think, if I had not got GCA, I would be the poorer as I would not have met my shipmates on the good ship 'pmrgca - survivors in spite of them'
Hi Captain Bob and Crew,
I am applying for leave pass from my purser duties! My mother is very very ill and I must tend to her for now. I will try and help out our newbies, ouch, does that mean I am in Recruitment!!!
God Teed I need a puff, gave up 2 years ago... but I will not!!!
Fair Weather ahead....
Hugs to all, Lyn
Hi Lynn,  Sorry to hear about your Mom.  Our best to her.  Your request for leave is granted and we'll hold your job for you since the ship's supplies are in good shape.
    The oarsmen...sorry....oarspersons are delighted with your institution of a strawberry jam ration to go with their hardtack.  We need such kind gestures considering how they are doing all the hard work to keep our good ship Prednisone moving thru these discomforting seas.
Well I come back and find that Lyn's Mom has taken ill  - my kindest thoughts to Lyn's Mom and hope that all goes well.

The trip was enjoyable but tiring, decided I must make more effort in future.   But the good news is that, 6.6.7 is the pattern now its holding. Calm waters at present and long may they last.



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