re:- White blood cell count on steroids - PMRGCAuk

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re:- White blood cell count on steroids

gillsky8 profile image
9 Replies

Hi,

Recently diagnosed with PMR and having started on 30mg. prednisolone now down to 15 mg in 3 weeks and seem to be doing well.

Just had blood tests done and white blood cell count is high 16.4 10*9/L and am rather concerned, although as I understand this is a common side effect of steroids.

Any experience of this please and reassurance would be much appreciated.

I contacted my GP to see if I could reduce my steroid more quickly,

hmmm he did not seem to think this was a good idea.

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9 Replies
SnazzyD profile image
SnazzyD

The white cell count is made up of different types of white cell. It is a side effect for Pred to cause a raised Neutrophil count so that will make the overall count high. This happened to me and the effect reduced with dose. It delighted me as I have historically struggled sith low N counts. You need to know which cells have pushed it up to put this in context, but don’t panic as it is likely to be expected but do ask.

PMRpro profile image
PMRproAmbassador

It isn't the end of the world if white cells are high, they will settle again but they will also rise if you have any infections like a cold or an urinary tract infection.

I'm glad you have a doctor who appears to not be hell bent on reducing the dose of pred - you need what you need, it has cured nothing and now you are looking for the lowest dose that manages the symptoms as well as the starting dose did. In fact. to reduce from 30 to 15mg in 3 weeks IS pretty fast and I do hope he will slow down from now on. I assume he starts with a higher dose to get things calmed down quickly - and after 3 weeks you are now at a more usual starting dose.

From here you need to reduce in smaller steps - I assume 5mg a week so far? Now from 15mg, 2.5mg steps are more usual and better plus it is better to stay at each new dose for about 3 weeks. If you go too fast and overshoot the dose you need, you will just have a return of symptoms but not know where it went wrong. After 10mg, you should only reduce by 1mg per MONTH - more than that is predictive of flare.

gillsky8 profile image
gillsky8 in reply toPMRpro

Hi thanks very much for your quick reply, I really appreciate it. He seemed to be indicating that the rise in white blood cells was due to the initial dose of steroid, so should it come down with the reduction in steroid intake please ?

My inflammatory bloods have plummeted like a stone since the start of treatment so I was very upbeat about that and then the white blood cell count seemed like a kind of set back or worryingly if it was something else going on. In all honestly I have never felt better than this for a good 3/4 months. Before diagnosis I don't think I realized what was going on or how bad I felt, barely able to get out of bed or raise my right arm in particular. Now, feeling as good as ever before. walking the dog etc.

So far so good with 15mg this week so fingers firmly crossed. I think my GP has a good handle on the reduction. programme is now having started on 30mg. 25 week after, 20mg and now 15mg for the next 3 weeks. Then he is reducing intake to 12.5mg for further 3 weeks , after that 10mg for 4 weeks and then reductiong of 1mg every four weeks.

I knew nothing about PMR. but boy am I learning fast !!

It is so good to have someone to talk to like this forum and to ask these questions and share experiences.

PMRpro profile image
PMRproAmbassador in reply togillsky8

That is a fair reduction - but nevertheless, be aware. Not everyone copes with that reduction even if it is presented by doctors as a "recommended" approach. Some will do fine with it. many will not. Don't be afraid to tell him if you are one of the "nots" and you have problems.

gillsky8 profile image
gillsky8 in reply toPMRpro

Thank you again 😀

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi,

You have had replies about your specific question, but maybe have a look at this for general info about dealing with PMR -

healthunlocked.com/pmrgcauk...

Charlie1boy profile image
Charlie1boy

Hi,

I started at 30mg for pmr like you, and also had slight issues initially with white blood cells. Happily, that quickly resolved as I reduced the prednisolone.

From my experience, I was able to reduce to 10mg relatively quickly, though from 15mg, I went 13 to 11.5 to 10mg. This was because it is recommended not to drop at more than 10% of your dose at any one time.

After that, it was another six months before I was comfortable in reducing to 9mg. Lots of pmr sufferers hit the buffers a bit at the 10mg level. My advice is never to reduce if you feel you have any pmr symptoms. If you do, then pmr will very likely come back to bite you! It really does not like to be hurried.

Hopefully, you manage ok, but you might find you will need lots of patience on your pmr journey.

Best wishes.

Broseley profile image
Broseley

I too have had high white cell counts. First monocytes then lymphocytes showing hairy cells. The latter has to be tested further, but both went back to normal. No explanations offered.

Myfoe profile image
Myfoe

My white blood cells have been quite high since this whole PMR adventure began it caused many a blood test before my diagnosis my regular doctor was baffled like you I was concerned but my rheumatologist said it’s not abnormal for some people with PMR I still don’t like these new “normals”

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