Flare stiffness in shoulders and hips again!

I just went through my wardrobe and bagged up about 90% of my clothes. I was a bit depressed about it all until t went shopping yesterday - therre's nothing like a bit of retail therapy to get you moving and feeling better!

Oh yes - forgot!

i felt the same way about clothes but I had to buy some for my daughter's wedding. Within weeks I started to lose weight! Won't say it was cause and effect - but I had put my small size clothes in the cupboard and kept them. As I lost weight I had things to fit into and am back to being able to wear almost all of them.

It will come - but letting a flare get away, whatever the reason, won't help your weight because you won't be able to move as much/well. I put on about half the weight I gained because of PMR not pred - I wasn't on pred at the time but I couldn't exercise.

Hi Eileen your the expert, so I ask you😄

I have been on 7.5 mg for last 4 months having come down from 80mg and diagnosed with GCA and tempory sight loss. And was doing ok except neck pain but disappears as day goes on and don't know when it came back but I think since last September, which is what I started off with, neck pain and pain in thighs and groin, in jan 2015,

But doing well except neck pain but could live with that,

I was back with rheumatologist last mon 30th May and my CRP was 3.5 and ESR was 5 and they told me to reduce to 6 but I reduced to 7mg for 2 days and 7.5 for one day,

My daughter was home and eating out and eating a lot of carbs,

But on Sunday started to get pains in my thighs again hard walking and going up stairs. Should I increase or leave it for a week to see if things settle? Thanks Eileen

Eating carbs, especially sugar, can increase inflammation - which is something I should have added in the previous post. Makes even more reason to stop eating them!

Was the return of thigh pain straight after the lower dose or after a few days? If it took a few days it is more of an indication that the dose might be too low. It might be more convincing for your rheumy if you leave the dose at slightly lower and get the ESR/CRP checked again. If it continues to get worse then I would definitely talk to the doctor though. Did you do more when your daughter was there?

Ye Eleen she was home with 1 year old so I was running around,

It was 5 days after I went from 7,5 mg to 7mg should I wait,,

You know that muscle pain where it's agony getting up stairs or coming down or getting up from chair, should I have another blood test, what should I do😂 really value your opinion thanks again

Then I think you have your answer - you've overdone it! Even if you don't notice at the time - and you probably didn't in the excitement - it catches up with you! And I'm sure you were carrying the 1 year old? Bouncing him/her on your knees?

Try going back up, wait until it's settled and then try again. If it gets worse ask the doctor for another blood test and possibly even consider adding a bit more pred for a few days. See how it goes when you rest more.

Thanks Eileen when you say go back up do you mean back to taken 7.5mg which I have done, and wait it out for a week,

You were absolutely right she was walking or running should I say and I was flying after her😳

Thanks Eileen I'm just so annoyed because I was doing so well, so I guess my red wine has to go😣

" I guess my red wine has to go"

What on earth for? We've lost enough with PMR - I refuse point balnk to give up my wine(I do live in Italy!). I can't drink heavy reds any more but our local South Tirol reds are very light and I can manage them!

As for being right about the baby - I'm a very boring person, I can identify overdoing it with visitors from miles away!

And yes - try if the 7.5mg will work along with a good rest. If not, it may have to be more...

I was waiting for this common subject to show up to ask about the nature of a flare. January I was at 7mg and have gone down to 5 currently using the dead slow method from 5.5 to 5. So according to the average my adrenals have had about 5 months to come back in. Yet some of the most troubling pains have gotten slowly worse. And of course, age and OA are in the mix making it hard to resolve. Main problem is the hips when walking or getting in/out of cars. Left side worst with right catching up after 15 to 30 minutes. I have finally concluded that there is nothing to loose in experimenting with the dose. The question is should I go up by 5mg and for how long before giving up, and is this a reasonable increase. I see my reumy on thursday and will tell her what I plan to do and will not be talked out of it. I would like to get rid of other effects such as the shakes and the purple spots and skin that tears easily, but I'll put up with those if I can salvage rmy mobility. To go back to the original premise, what is considered a flare? How long a reversion to original symptoms and what if they are new symptoms? Am I just locked into coexisting problems and not willing to accept them.

A flare is a return of symptoms of PMR. They may be different from the outset which is a bit confusing of course! It can be due to reducing the dose too far - which I'd say you may well have done - without the underlying cause of the symptoms having got worse, or it can be due to you remaining in a stable dose but the underlying autoimmune cause ramps up its activity so the dose is no longer enough to manage the daily dose of inflammation.

It isn't JUST the adrenals - you are never reducing relentlessly to zero: you are reducing to find the lowest dose that manages the symptoms as well as the starting dose did. Once symptoms start to reappear you should stop reducing for the moment, possibly return to the last dose you felt well at. You need a bit of time at each dose really to be sure it is still enough over more htan a week or so - because you might be fine but the daily dose is not quite enough and the inflammation builds up a bit each day until you can feel it again - like a dripping tap will eventually fill a bucket. It doesn't mean that is as low as you will get, it's just for now - and every so often you try a 1/2mg drop to see if it works. It will eventually.

Since you mention experimentation - have you ever tried splitting the dose? Or taking it at night? That may help the shakes. Lots of moisturiser and no soap can help the skin problem - Doublebase or Diprobase are very good.

Coexisting problems? Possibly but I'd be more inclined to think you have just gone that bit too far.

Hi Eileen hope you see this as there have been lots of posts. Obviously a good discussion thread!

I rather over did it - I stood at a celebration for 4 hours. I thought I will sit down when I feel bad. I felt OK on the Sunday, but oh dear the next day I was really stiff in the shoulders and hips so put it down to over doing it rather than a flare, so I rested. After a week of that I went up to 3 mg and after no improvement tried calling to get a GP appointment and so waited a week. I waited 45 mins to see the guy, and was so stiff had difficulty getting out of the chair!

So if I went up to 7.5mg, hoe long would I stay and how would I come down? 7.5 then 5, 4, 3, 2 etc?

I have tried cutting out carbs but I eat too much pasta and I love roast potatoes as do my children - all nearly grown up but they love Sunday lunch.

Need to have more resolve!

I did decide I need to clear out my too small clothes and give to charity and buy something that fits!

TIA

You stay at a dose that manages it long enough for all symptoms to improve to a stable state. It may be 7 or 8mg or it may have to be more. If the 7.5mg does it then try reducing 1/2mg at a time - or use the Dead Slow and Nearly Stop approach with 1mg until you find the dose that manages them NOW. It may not BE 2mg if it really has been a flare - so you reduce carefully to find the new right dose, if it is different.

You can induce a flare in autoimmune disease "just" by overdoing it - and how long it takes to recover varies from person to person. It might be a week, it might be month.

Never worry I won't see a post - I'm notified to my email of everything providing patient.info is working properly. Like all sites it has its moments but the on-site notifications usually work.

I found keeping favourite things seemed to increase the pleasure of having lost weight - and you can't cheat. I have clothes that fitted me at fat size that vary from size 12 to size 20!

Thanks for the advise. My GP brought my attention to the major areas in which I have OA yesterday. I have to take it into consideration although I have had periods of great relief which does not fit OA. I will try the split dose as I have read accounts here of relief with it.