Confused

[Annecath]

Hi Everyone I have had PMR for about 4months now , I take 15mg ofSteroids lowered down to 14 mg now, have had blood tests every 4 weeks and see doctor also every 4weeks . saw doc today and tests for my white cells have gone up each month ,he thinks that I have Leukaemia and have been referred to a hospital.What I would like to know is has this happened to anyone else and how did you cope with it

[SheffieldJane]

I have a feeling that it has Annecath. The close monitoring we sometimes get does throw up other things and our symptoms can be stemming from conditions like Leukaemia. This is a worrying time for you, sending you love and strength as you go forward. Please let us know how you get on!

[Annecath in reply to SheffieldJane]

Thankyou Sheffieldjane

[SusyTe]

Hi Anne. My white cell count is raised but my doc and my rheumy said that was to be expected because of the steroids and was nothing to worry about. But I guess it depends on what sort of count we are talking about. Yours may be much higher than mine.

[Annecath in reply to SusyTe]

Susy Te yes doc did say steroids can make your cell count go up but mine have gone up every month for the last 3 months Plus I have really bad hot flushes at 74 it's not the menapause haha so I suppose better to know now rather than later thankyou for replying, I wish you well x

[SusyTe in reply to Annecath]

That does sound off, Anne, although I did get hot flushes from the steroids when I was at 15 mg - was soaked with sweat. I am 55 and on HRT after a total hysterectomy. I don’t get them now I am on 7.5 mg. I am glad your doc is on the case and I hope they find out if something is wrong. Better to know, as you say. Sending you love and hugs. Xx

[Annecath in reply to SusyTe]

Thankyou SusyTe love to you too

[alvertta in reply to SusyTe]

I am getting hot and sweaty all the time at 40 mg per day. Any exercise, walking makes me sweaty.

[piglette in reply to Annecath]

I had the hot flushes too, absolutely horrible, they have improved at a lower dose thank goodness. My GP seems to get very excited when my white cell count reduces, much more than me even!

[Annecath in reply to piglette]

Thankyou piglet mine has only gone up so far , time will tell

[Valnvaughan]

Please do not stress about this....bad for PMR. Tests can be used to rule out things, as well as identify. An early diagnosis and positive attitude is a way forward. Please note that you have a caring forum here for your thoughts. Valerie

[PMRpro Ambassador]

Your white cell count increases when you are on pred. It makes the white cells called neutrophils rise and that makes the total white cell count rise. And it can do so over a longer time. That is one possibility. The sweats are also part of PMR and taking pred, some get sweats with PMR that improve with pred, some have sweats because of the pred and others have sweats from both.

However, PMR is not the disease, it is the symptoms of an underlying disorder and a couple of them are forms of cancer. That is supposed to be ruled out before making the PMR diagnosis. But it is very good that your GP is on the ball and keeping an eye on you - lots don't.

There is another lady who has been on the forum in the last few months who has now been diagnosed with leukaemia - her PMR symptoms hadn't responded well to pred and we suggested she got a second opinion and that rheumy did due diligence so now she is on the right treatment.

Whether it is "just" PMR or something else, the important thing is that you have a correct diagnosis. Do keep in touch and all the best.

[Annecath in reply to PMRpro]

Thankyou for your help

[Jackoh]

Wishing you all the best Annecath, It is good that they are looking into this and hopefully as someone else said, not just diagnosing something but also ruling out other things. Do keep in touch.

[Annecath in reply to Jackoh]

Thankyou Jacko will do

[Annecath]

Many thanks Jackoh

[Dream21]

Love and strength is being sent your way. I am thinking hopeful thoughts for you. Blessings.

[Annecath in reply to Dream21]

Many thanks Dream21 God Bless