What defines a flare?: When I tried recently to... - PMRGCAuk

PMRGCAuk
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What defines a flare?

Ruidoso74
Ruidoso74

When I tried recently to decrease to 12.5mg. When I moved to 2 consecutive days, I felt the saddle area of my pelvis "waking up". No pain and it only occurs at night when I'm in bed. I immediately increased to my previous dose the next morning. Was there another solution or does it make sense to return to my old dose. I have seen some divide their dose, but I wasn't sure this was something I should try.

16 Replies
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There is something to be said for waiting to see what will happen over a couple of days. I think I have been too quick to retreat in the past, when it may have been withdrawal pains. You’ll soon know if it is getting worse or settling. Good luck!

( morning Pepperdoggie!)

Are you psychic Jane!! That was spooky!! I've just been replying to Good Grief about recycling! How's the New Year starting for yourself!.. I'm on a wine taper! Mmm! Think I may have to try DSNS method!!

🔮😉

PS. As if January isn’t bleak enough. I guess the grape disrupts sleep though. I am sure we aren’t alone in our nocturnal vigil.

Why on earth are you on a wine taper? It is January and it will keep you warm inside!

Long story Piglette! You know the medics seem strangely more concerned about my wine consumption than all the other bits falling apart!! Looks like this is going to get worse in the NHS according to the latest proposals!

Go to to A & E with a splinter in your backside & you will come out signed up to any number of awareness courses, plus statins etc!!

PMRpro
PMRproAmbassador
in reply to Pepperdoggie

We laughed the other day: OH has been in hospital due to an overdose of his anticoagulant drug and bleeding. He had a CT to rule out other nasties and the report is a hoot. There is something wrong with everything (or so it felt) EXCEPT his liver which was perfectly healthy!!!! It must be pickled...

Pepperdoggie
Pepperdoggie
in reply to PMRpro

Good news then for OH! We all deserve a break!! Always thought alcohol was a scientifically proven preserving agent!.. So I'm not surprised!!!! Has a long history in most cultures, unlike the drugs of today that can be far more dangerous!!

Don't forget to look after your self too matey your're a "good en".

I do agree. It does sound like the NHS are going to stop us drinking soon. What annoys me is that the news always gives the impression that the NHS is perfect and needs no changes it is the patients that must change their ways as they are causing all the problems. There was a programme on the other day about the thousands of pagers the NHS use, I can’t even remember what a pager looks like everyone stopped using them so long ago along with faxes.

I usually wait three days when more pain occurs, just to give the adrenals time to tell me if they are working or not (I am down to 4mg though). If pain gets worse by then I up my dose by 2mg and wait once again to see the result.

Thanks, I hope to get down below 10mg some day! It seems out of reach right now! 😱

PMRpro
PMRproAmbassador

I may be wrong but your mention of 12.5 suggests you are trying to reduce by 2.5mg at a time??? You might be fine at 13mg - even 1/2mg can be the difference between being OK and not. That's why we bang on about small steps.

Splitting may help you get lower - but the only way to find out is to try.

Ruidoso74
Ruidoso74
in reply to PMRpro

Thank you. I am trying for the second time to reduce from 15mg to 12.5mg. I am trying the "dead slow" method you posted. I wasn't having the severe pain and stiffness when I started the pred and had gone 5mos hoping it would resolve on its own as it did 4 yrs ago. I had a severe knowledge deficit and I think my GP does as well. She thought I'd be through with pred by Feb. She is retiring. I've lined up a New Rheumatologist at the end of this month. The one that diagnosed me 4 years ago had moved out of state.

I bought the Kate Gilbert book last night and really plan on getting smarter! I've always powered through things and that is really the wrong approach with PMR!

I will say the symptoms I had this summer were milder than 4 years ago and kept trying to go away, but 2 cataract surgeries, an allergic reaction to antibiotic eyedrops, and finally a late summer bladder infection kept it returning! I feel so lucky that it wasn't as incapacitating as the previous episode. BTW I first got this (4yrs ago), 5 yrs after my shingles vaccination ; have been treated for low levels of D vitamin for 3 years ( I live in Texas, walk daily and garden); think I may have had mild symptoms for 8-10 years, but thought it was a reaction to antibiotics. (symptoms always start a few days after being treated for bladder infection.) I think my deceased father may have had this in later years, since he thought he had started to develop RA before he died at 82. Who knows, it was almost 20yrs ago!

I appreciate this site so much. The quick response and helpfulness is amazing! I spend little time on the computer, so I often struggle, but it's a lifeline to people who know how to help and care. In this crazy year 2019 that's amazing!😀

PMRpro
PMRproAmbassador
in reply to Ruidoso74

Go back, once you are feeling OK again do the DSNS with the smallest change you can manage, 1mg is ideal to try first.

You say you are walking and gardening? Maybe try pacing it more:

healthunlocked.com/pmrgcauk......

I know a few people who have had PMR twice or more - all say no 2 episodes have been the same. Each time it is a question of finding what helps best this time and one day it will work!

Ruidoso74
Ruidoso74
in reply to PMRpro

I was very limited in my walking and gardening last summer due to the PMR, but did not suffer the extreme fatigue as I did 5 yrs ago. I try to do my routines daily, but at a pace I can manage with aches and pain. There is no question that, at times I overdo, but I always seem to rebound by the next day. It's how I react to problems. I just did not understand how to manage PMR. Never did research it 5 years ago, since it was almost gone when I was diagnosed. He diagnosed me through slight elevations in labs at the time (4mos after initial symtoms) and my description of earlier symtoms. I thought it was a one off and that I had I lucked out. My GP did not do lab at that time or this time, so I'm not sure if they are e!vested at all. All I do know is that the day I took my prednisone the pain and stiffness was almost gone by the end of the day. I didn't realize how limiting the PMR had made my life. I could once again stand to dress, bend, walk, and raise my arms. I am trying to pace myself more, but I feel good each day and moving makes me feel more energised most of the time.

I will do as you suggest for now and then see what the Rheumatologist has to say later this month. I hope he has had good experience!

Thanks again for your excellent advice and wisdom.

I have second guessed myself a lot. Strong pain is a different matter, but for malaise and more achiness, I give my body to to adjust and then make a decision. Hope you find what works best for you.

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