2nd time around : I have just been diagnosed with... - PMRGCAuk

PMRGCAuk

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2nd time around

Suffererc profile image
11 Replies

I have just been diagnosed with PMR for the second time

I came off Pred in February but have never felt comfortable.

I also have had a carpal tunnel procedure last week and am seeing a specialist for torn cartilage next week.

All very dismal but on the positive side have been invited to spend Christmas in the Bahamas with our family. Even better all expenses paid.

Glad to be back on this site for all the support I received and will receive

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Suffererc profile image
Suffererc
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11 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Sorry about your PMR…but enjoy your trip… lucky you.🌸

SnazzyD profile image
SnazzyD

second diagnosis but possibly still the same PMR that never really went away as your lack of comfort since Feb is testimony to. I guess the silver lining is that you’ve been here before on this site and can hop right in and you know the ropes with Pred.

Bahamas eh? Think of us in the UK as no doubt it’ll be wet. Actually, no don’t bother 😎🌴

PMRpro profile image
PMRproAmbassador

Nice for some - can we all come too?????? 🤗 My option would be Scotland but the daughter has exams and portfolios to complete before and after Christmas so will be mega-stressed. I'll stay home and get a white Christmas ...

I doubt this is a "second time" - I think you got off pred in February when the disease activity was very low and while whatever your last dose was was plenty to keep scooping inflammation out of the bucket, zero was a step too far. Over time that inflammation has built up to a level you can feel again. If you are really lucky, you will clear it out really quickly - and this might be a place where a fast taper down to 5mg pays dividends by saving you the long slow trog through the higher doses. Are you starting at 15mg? What about trying 10mg for starters?

Suffererc profile image
Suffererc in reply toPMRpro

For a Chang Drs being reasonable. Called inas urgent to the surgery. 15 x3 weeks then drop to 12.5 x 3 weeks then 10 x3 weeks. I then said could I follow the DSNS and they agreed. I will then do 1 a month. What do you think ?

Sorry holiday already booked I am told. No late comers.

Thank you for replying 😊

PMRpro profile image
PMRproAmbassador in reply toSuffererc

That's a "normal" taper - if it were me I'd try 10mg now and see how I got on. But that is me!

Suffererc profile image
Suffererc in reply toPMRpro

I have taken 2 x 15. Do you think I could drop to 10 for the next dose. Or should i do In stages . Have got blood test in 3 weeks. Feel great now. No pain after weeks in agony. Glad of your advice . Thank you 😊

PMRpro profile image
PMRproAmbassador in reply toSuffererc

As I explained in my first reply - I think this is more a flare because of too low a dose rather than a return of PMR that was fully in remission. That means you are very likely to need well under 5mg to manage it (not guaranteed though) so you could try a flare protocol and see if that is enough. It just seems a shame to spend a few months above 10mg when you probably don't really need to, I'd certainly try it - you can go back to 10mg if I'm wrong.

Suffererc profile image
Suffererc in reply toPMRpro

Thank you 😊

tempusfugi profile image
tempusfugi

Suffererc, as a matter of interest, did your Carpal Tunnel syndrome (CTS) start after PMR started? I presume it did. It's just that I've had both hands with CTS since PMR and procedures on both. Still got trouble with hands, but nothing like the pain I was enduring before the procedures.

Funnily enough, I also think I have a problem with a torn cartilege (but not sure it's that). Did your GP refer you to an orthopaedic specialist for this? Am interested, because I feel I need to do something about the problem I'm having with both knees and hence walking. It's getting worse, unfortunately. Not sure what to do right now but may end up paying privately to see a specialist.

Lucky you re Christmas in The Bahamas💚 I am green!! Defo something to look forward to...

Suffererc profile image
Suffererc in reply totempusfugi

Hi Tempusfugi

Sorry to hear you are suffering.

I had finished taking Prednisolone when my CTS and torn cartilage reared. I had a fall, tripped over the kerb in the dark just before Xmas and because I was still on a low dose of Pred think it masked any symptoms of the fall. It was when I stopped Pred that niggles started in my wrist and pins and needles in my finger tips. One hand was very severe and one mild. Was sent for the nerve test. The torn cartilage, the GP sent me for MRI which showed the two tares. I am seeing a specialist on Wednesday to see what they are going to do. My knee swelled to 3 times the size but has reduced to normal now I am back on Pred.

Just to say had the CTS procedure and just waiting to hear stitches out on Thursday. Am using as normal now but restricted by heavy bandaging which not allowed to remove myself.

How you are managing with two must be very difficult.

GP put me on 15mg but I have dropped dose and am going to drop again to 10mg. I asked advice from the forum and PMRpro thinks it a flare and I agree I don’t think I was ever free of PMR.

Hope you get sorted soon. But having to keep asking for help with GPs is the right way. Don’t let them fob you off with arthritis.

Take care. Will let you know how I get on.

😊😊

Suffererc profile image
Suffererc in reply totempusfugi

PS we are very lucky in our area. Our GP surgery use private to get our treatment quickly . Hopefully my knee will be done private but we haven’t got such long waiting lists for certain procedures anyway. We didn’t need Wes.

Yes can’t wait till Xmas and if the Pred remains keeping the inflammation down it won’t be so bad 😊😊

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