To Sheffield Jane When you say your disease is on... - PMRGCAuk

PMRGCAuk
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To Sheffield Jane When you say your disease is on the way out can you give some descriptions?

bunnymom
bunnymom

Sheffield Jane wrote in another thread that she felt her disease was on the way out. I thought some descriptions might be helpful to the rest of us who are hoping for recovery. What can we expect and look forward to? For myself after almost 3 years I don't feel systemically sick like I did. I am not bothered by malaise as much. I thought I'd feel better after I retired a few months ago but my quality of life is better now as I don't have to push myself. I think physically and mentally I am at 60%. Having a marker like that helps me evaluate how I'm doing. It has been very slow going. 🐌1

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You’ve said it exactly bunnymom. I do not feel systemically sick anymore, I don’t even get shoulder twinges. The tiredness I feel is more normal - not that rush to lie down before you fall down. That low level flu- type feeling has gone.

I am in a lot of pain in my knees and they are swollen and low back pain when I am on my feet too long. Both these symptoms are eased by paracetamol and codeine and rest - PMR pain was never helped much by either. I am doing a slow taper from 7 to 6 because I can hardly believe it myself and it is recent, like the lifting of a weight. I flared a few weeks back but a couple of days of 5 mgs extra seemed to deal with it ( unusual).

I hope I am not tempting fate, but even the stress of Christmas didn’t change things.

I was diagnosed in March 2016 but I suspect PMR was around for much longer. I spent months having various tests.

My mood is lighter, even though my little love has returned to Australia.

I hope this helps bunnymom and I hope it is you too. Xx

All sounds good. Your timing is similar to mine even in having it a while before diagnosis. Im not there yet but it gives me good hope!! Sooooo looking forward to that "light" feeling!! Best wishes.

Likewise. I don’t feel any evidence of disease after 4 yrs. I don’t feel ill anymore. However after trying to reduce in October from 1 1/2 mg to 1

(but also had a cold! - dumb move!) I had a flare. Now I’m comfortable at 2mg and think that’s the important milestone - feeling comfortable. I did get off pred for about 3 months after a yr and half, but then relapsed. I know I can get to one & half again, but I’m not in a hurry to go anywhere right now. Easy does it, right? 😊

bunnymom
bunnymom
in reply to Bronni

One does sound like a dream.... Sigh...

Lochy
Lochy
in reply to SheffieldJane

Hi Jane, Happy New Year, sounds like you’re doing well. Have you got any diagnosis for your knees? I’m also struggling again with left knee pain but otherwise feeling well. Started hydroxychloroquine end of November and all was well until few days before Xmas. Knee swollen and painful again! 😥 Have remained back on 12mg reluctant or perhaps scared to reduce! Wonder if I should up the painkillers and 🤞. I also started this journey in March 2016 and was rather hoping I’d be in single figures by now. Kirstin x

Asbeck
Asbeck
in reply to Lochy

Dear Lochy: Prednisone withdrawal???? Having started at 60 mg. 5 years ago, I have reduced a total of about 1.75 mg down to 4.75 mg. in about 8 months. Suddenly my knees killed me and stayed painful for about 7 months. I couldn't exercise by stepping up or use a leg press even on very light weight (like 30 lbs.) Then it was over. At the beginning my Rheumy even x-rayed them because I rarely complain of the pain. Nothing there. I just don't know. The Internet says that Prednisone withdrawal causes joint pain. But SEVEN MONTHS!!!! Not knowing any better I have decided that it is Prednisone withdrawal for me and I'm happy. I'm going with it. Hope your pain also ends suddenly. Sometimes I would rub 5% Ladicaine on them at night when I could not sleep. But remember for me, the doctor did not find anything. So I might be generically different from you. Hope that it gets straightened out fast.

Lochy
Lochy
in reply to Asbeck

Hi Asbeck, were your knees swollen too? I needed two steroid injections and fluid aspirated from my left knee even though X-ray just showed swelling but no change in joint or any signs of OA. All a bit mysterious. Left knee is grumbling again now but am gradually noticing an improvement. Returned to yoga this morning, which just about killed me, but feel it will help regain some strength and tone I have lost over past two years. Fingers crossed my knees start behaving and I can start a taper again. Nobody really has any magical answers or solutions so much of it is trial and error!

Hope you can get your knees sorted out. I still wake with pain and stiffness but splitting doses does seem to help.

DorsetLady
DorsetLadyPMRGCAuk volunteer

Hi,

From my perspective only (GCA not PMR, and from what I’ve read I think maybe GCA is easier to get through, or maybe I was just lucky), I woke up one morning about 5&half years after first symptoms and felt as if a weight had been lifted off my shoulders. Can’t explain it any better than that, but just “knew” things were different! At that time I was on about 1mg or 1.5mg , but I continued my taper as previously and it was another six months before I got to zero.

Whether that feeling was my GCA going into remission or my Adrenals finally working or a combination of both I don’t know, but I do know I felt “normal”.

Hopefully you will too, and sooner rather than later.

That's inspiring to read DorsetLady. It gives me hope that one day the same might happen to me as well. Thanks. Moz

DorsetLady
DorsetLadyPMRGCAuk volunteer
in reply to Mozziebuzz

It WILL - just hang in in there for the moment.

I can add something to this. After two years of excruciating neck, shoulder and arm pain I noticed around a week before Christmas an improvement which continued daily. My issues are complicated by the fact I also have RA. As of now, I am still taking 10mg of Pred at night and weekly methotrexate. My blood pressure has gone right back to normal, all other swelling has gone down. No OTC pain relief needed - It is worryingly mystifying considering I was in such a bad way. I see the Rheumatologist on Tuesday when I am supposed to be going on a new biologic for the RA. It will be interesting to see what she says.

I had the transition from Steroid to Methexotrate and Hydrocloxichloroqine I too have RA and OA ,I am now steroid free and the transition for me was quite smooth . If that is any help . Gradual withdrawal of the steroids seemed to work ok for me .I should mention I had the steroids for several years .

Thank you Patricia. I have been on steroids for two years but it has been a badly managed rollercoaster. This site has been so helpful in terms of prednisone tapering. I have reached the conclusion that a lot of doctors and health professionals don't really understand the snail's pace needed. When I see the doctor tomorrow I am expecting a 1mg a month taper and then to basically see what happens with the RA and whether or not I can manage with just methotrexate.

I love to read these posts! Being only 1 year in, your stories give me hope. Thanks for sharing.

DorsetLady
DorsetLadyPMRGCAuk volunteer
in reply to PMRCanada

As I’m always saying...you will get there! A post from two years ago. Nothing if not boring......that’s me 🤦🏻‍♀️

healthunlocked.com/pmrgcauk...

Thanks so much for the link to your story! I had been getting bits and pieces from reading your responses to various posts.

It was a privilege learning more about your journey....so frustrating to learn of the constant misdiagnosis and delays. I cannot imagine what it must be like to lose your partner after so many years together!!

I also enjoyed reading that you had many visits to NZ to be with your family. Glad y

DorsetLady
DorsetLadyPMRGCAuk volunteer
in reply to PMRCanada

It was devastating - of course, but he had heart problems for about 17 years, so we had longer than we might have! And we certainly packed a lot of living and loving into those 46 years we did have.

bunnymom
bunnymom
in reply to DorsetLady

It was encouraging to read your tale of recovery once again. Every day we all move closer to being well.

I’m not sure anymore if I know what feeling well/ normal will feel like. I know I’m luckier than many on this forum in as much as I’ve never been above 15 in the three years since PMR started. I do get a little pain mainly knives being inserted in my thigh muscles and that’s only if I’ve been over doing it. It’s the fatigue that’s the worst and that general feeling of being washed out, unwell. It’s like walking up hill through treacle. Everything is a such an effort. You can tell I’m going through a miserable phase...sorry

Suffolklady
Suffolklady
in reply to Jean56

You are not alone. x

Megams
Megams
in reply to Jean56

~Hang in there Jean - hopefully tomorrow will be a better day. I often find after an off day the next day can & usually is better & be darned if I know what caused the off day other than obvious stress which I avoid like the plague where possible as that is 100% guaranteed to be a trigger ~

Abundant blessings are sent your way.

bunnymom
bunnymom
in reply to Jean56

Know exactly what you're talking about. I look forward to having a spark again and occasionally I do.

Driving to Naples fla today. I started my 2 mil predsone from 3 !!!! Hope it works . some have told me that sitting in a care for 2 hrs not good when tapering you need to keep on your feet and moving around has anyone heard of this ?

PMRpro
PMRproAmbassador
in reply to Mjhollywood1

No - resting is more important for a few days if you are going to reduce overnight from every day 3 to every day 2!!! That is a 33% drop - what happened to the 10% rule!!!!!

Before we worked out the Dead Slow approach we used to suggest clearing the decks and diary and taking a very quiet week to start a new dose. It helped.

Bunnymom,

Retirement does help, especially the naps.

bunnymom
bunnymom
in reply to enan-illuc

Or just knowing I don't have to be dressed to go out at a certain time.

Bronni
Bronni
in reply to bunnymom

Ha. Yes. Lounging around the house in yoga attire, which I now refer to as my INactive wear 😂

bunnymom
bunnymom
in reply to Bronni

Hahaha yes

I have had PMR for about 5 ish years now .I am off the steroids and have the Methexotrate and Hydrocloxachloriquin(spelling ?) I do have RA and OA tendonitis and other stuff going on ,yet I have had a flare sort of this Christmas I was horrified it was Poly but It wasn,t the same .Not as intense but fluey muscles if that makes sense ,Stiff and and painful and the lethargy Oh WOW .My doctor thinks its PMR or RA .I could have had a guess myself save scaling the battlements to get an appointment ;-) Never mind I feel I achieved something getting an on the day appointment ,you have to sit on the phone and be assertive ha ha . Usual 5 min appt and quick guess . sigh .I do not have the horrendous flares that I did or the burning scalp ,crawly skin going on .Wonderful .So I am waving it a cheery goodbye .We learn the meaning of that thing about banging your head on the wall is ,it,s so good when it stops ha ha don,t we . Long may you improve and good luck .Take it easy .

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