Is this a flare?

Bones, joints and muscles
1

I am reluctant to admit that this may be a flare as I am now on 2mgs. I have a number of the symptoms I had before diagnosis.....lack of appetite, fluttery heart feelings, lightheaded, stiffness rather than pain in the hip area, very tired. I have no trouble turning over in bed so it is not the same as the early pain.The stiffness could be attributed to sitting more as I am tired. Is it possible that this could be due to withdrawal symptoms? I know I have not been resting as I ought as I lowered the dose. This is partly due to circumstances beyond my control. I am finding that I can sleep well and beyond now, as I have lowered. I also nod off in the chair fairly easily and am not in the mood to eat or cook. I am eating much smaller portions. I thought it was the hot weather that had caused the lack of appetite but this has continued despite the drop in temperature. Any thoughts or advice would be welcome.

2

Hi Silver49

I too have felt exactly the same, I am at 3.5mg, I have the heart flutters even though I’m on propanalol for another reason, I feel fluish n my head and yes very stiff and tired.

My appetite is poor also which is so unlike me.

Last night well 4pm I slept on and off on the settee  until 7.30pm went to bed 11.30pm  yet woke up shattered this morning 

So I hope it’s the lower doses too.

Wonder how long this will last? It could be our adrenal glands have to fully wake up and function yet.

My consultant says I won’t have any adrenal problems as only been on the prednisone 2years, but I have such a sensitivity to the drug ie reductions are so hard for me I bet I will have problems.

Good luck!!!!!

3

silver i know exactly what you mean.  i got down to2 mg  then strted with pain  not the sae as original.  but 6 years down the road.. of starting with pmr.   i get confused and think,   well  i am 6 years older.  at 76   is just old age,   tho i dont feel 76.  i got down to 1mg for a short while,     had what i thought was a flare s o i went up to  4.5   now back down to 3mg. and will stay there  for a month or so   see what happens,   i dont worry any more   about been on a low dose,  its just  boreing  having to do it    x

4

“I don’t worry anymore” - that is the best thing to do with this pesky illness!💥😎🍾🍸

5

Thank you, Adette. That is so helpful and a relief to know I am not alone though I realise there are so many of us going through this. There is always someone out there to empathise and whose symptoms are similar. I guess it's the withdrawal and adrenal glands trying to cope. 

6

I got down to 1.5 and realised I was having a flare so went to 3.5 which resolved the problem and now making my way back down. I am following the DSNS method. 

7

You are so right. It won't kill us. I don't worry either but I would like the weight to fall off 😂

8

Does sound like it is a bit of a flare up. But also your get similar symptoms to the steroid drop as you know. How long have you been on that dose for ? If it’s less then 10 days it could be from the steroid drop. In any case I’d go see your dr . That’s interesting that you put fluttery heart as that was an early  symptom for me. Yes take it easy . I hope you get some relief soon . 

9

Haven't you just answered your own question? Not quite ready yet I suspect. 

10

I think you're right. Back up to 3.5,  I guess?? 

11

Thank you, Veronica. It's more than 10 days. It was one of the early symptoms for me too.

12

I would...

13

Silver, listen to your body, if a flare do not hesitate, jump on it. Don't let the inflammation get ahead of you. You end up taking more Pred in the long run. Think positive and try to smile. ☺️

14

I have just taken another 1mg so will see how that goes. I'm wondering if taking 2mgs am and 1mg pm may be a good idea. May try that again tomorrow and if not successful will go back to taking it all in the morning. 

15

Thank you, Michdonn. I know both you and Eileen are correct. I have decided to take action. It's not good to end up with a massive flare which I have avoided so far.  The one thing I manage through all stress is to keep smiling😊

16

You are welcome Silver, good for you stay positive with that smile. ☺️

17

😊😊

18

An update. The 1mg extra I took about 4 hours ago has made such a difference. I think I'll see if splitting will work as 3mgs seems to be enough to cover😊Thank you all for your support and advice. 

19

Silver,

I too have dropped to 2mg and the past few days have had pains in shoulders, back, and feel sad that I think I could be experiencing a flare after nearly 3 years of PMR.

My blood test last week showed esr and crp had risen from zero to a high level again, so I expect I have to call it a flare and not my adrenal's trying to wake up.

So many of us are experiencing this problem from these posts I am reading.

We have had a very cold winter here in OZ this year, maybe that could be my problem who knows.

I too have lost appetite, and feel quite weary.

I have increased my Pred to 4mg and will see what happens.

keep well

Track

20

It's so frustrating and as you say the cold may be a factor in this. I decided it wasn't worth waiting for a full blown flare where it would need a big increase so bit the bullet and took an extra mg late afternoon. I thought I'd have to go to 3.5 but 3 seems to have cracked it. I suggest you don't risk a full blown flare. If you get it now it won't be such a problem and like me you are so low it's less of a problem than letting it become one. I hope you can resolve it quickly.