Latest blood test now down to 7mg per day.

[gillsky8]

As it stands,

I have made it to 7mg per day from 10mg 3 months ago. GP gave me the impression that either I gave this a try or he would withdraw the meds ! hmmmmmmmmmmmmm

Full blood count all normal except

Total white cell count

result 12.3 10*9/L

Normal range 4-11, therefore abnormal

Platelet count

result

433 10*9 /L

Normal range 150 - 400 , therefore abnormal

Neutrophil count

result

10.9 10*9/L

normal range 2-7.5, therefore abnormal

Lymphocyte count

result 1.0 10*9/L

Normal range 15-4 therefore abnormal

GP did not seem alarmed at all and said they were all satisfactory.

It's double dutch to me !!

but I am assuming that there is still some issues because of the steroids.

He said that there was no anaemia present.

Any comments on the above would be gratefully received, just to say that in the past a lot of these readings have been on the abnormal side and then righted themselves, so perhaps it is as a result of a lot of changes in the body in any case ?

Soldiering on I feel reasonably good on the tapering side fingers firmly crossed !!

[DorsetLady PMRGCAuk volunteer]

GP gave me the impression that either I gave this a try or he would withdraw the meds

After a couple of years on Pred that's tantamount to medical mal practice...and hope you told him that...could put you into a serious adrenal crisis...

Will leave a medically trained person to comment on readings, but looking at previous posts you do seem to have a lot of other health issues... which could the reason.

I'd be slowly down taper as well from now on - 1mg every 4-8 weeks rather than monthly.

[gillsky8 in reply to DorsetLady]

He said that he would not prescribe any more than the tapering dose unless the blood tests showed evidence of a flare . His words were that ongoing steroid use at the level I was at was very bad for my health.

[DorsetLady PMRGCAuk volunteer in reply to gillsky8]

I've replied further down.. think you need another GP...

[gillsky8 in reply to DorsetLady]

Hi thanks for this advice, I do remember that you posted a tapering programme whereby you used a normal dose intermittently with a reduced dose over several weeks, please could you forward this to me ?

thank you

[DorsetLady PMRGCAuk volunteer in reply to gillsky8]

See here -

healthunlocked.com/pmrgcauk...

With added extras as well -

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

[gillsky8 in reply to DorsetLady]

Fantastic, thank you so very much for your quick reply, much appreciate

[DorsetLady PMRGCAuk volunteer in reply to gillsky8]

That’s okay, you just happened to catch at the right time….😊

[gillsky8 in reply to DorsetLady]

👍😀

[gillsky8 in reply to DorsetLady]

Can I just add that I have way more faith in the contributors of this site than I have to my GP. Lucky I have a stock of various doses of prednisone and intend to go by recommendations on here , eg. my own way

what i mean by this is that I will taper by 1/2 mg per month.

[DorsetLady PMRGCAuk volunteer in reply to gillsky8]

Agree on the taper…. And as for ‘us’ we’ve been there and know what is required.. most GPs haven’t and no matter how much you read or listen to others [those that do..😳].. it isn’t the same as living it..

[Obscureclouds]

When do you have a follow up blood test due? I was told neutrophil count is often high due to steroids but raising platelet count can give indication that vasculitis isn’t as controlled as it should be. With normal blood screening they don’t worry about it until it goes up to 500 which is probably why you get feedback that everything is satisfactory. Worth checking what is was last time. I found when I was on 2 weekly blood tests results varied quite a bit but my white cell count was always over or very near the top of normal range. As you say we just have to soldier on and hope we’re in good hands but should you start having niggles of symptoms returning I would get back in touch with your surgery. I once got very fatigued and a further blood test showed my platelet count had galloped up over 600 (but that was in the early days before Pred had really kicked in) Sounds like you have had quite I quick reduction in Pred. I’ve gone to 10mg in April but have been advised to taper 1 mg per two months from now on.

[gillsky8 in reply to Obscureclouds]

My GP wants me to taper 1mg per month and tells me that is the usual reduction with blood tests check every 3 months or so . He says that the ongoing high use of steroids, bearing in mind I had been on it for nearly 2 years now is very bad for my health .

[DorsetLady PMRGCAuk volunteer in reply to gillsky8]

r 1mg per month and tells me that is the usual reduction

Actually the guidelines suggest -

"below 10mg - 1mg every 4-8 weeks... " .. and a lot more about with patients wishes and disease activity. but I won't go on, can all be found in the guidelines..

and if he thinks being on steroids for 2 years [albeit you started at 30mg] is bad for your health, I hope he never has a GCA patient...

[PMRpro Ambassador in reply to gillsky8]

Steroids are bad for your health are they? So, he should bear in mind, is poorly controled inflammation!!!

He is wrong though - 1mg per month below 10mg is SUGGESTED but every taper I have ever seen has a codicil: the dose and rate of taper MAY require adjustment for the individual patient.

I've been on steroids for 16+ years, my cumulative dose must be way north of 40g and it hasn't harmed my health anything like as much as PMR itself did.

[PMRpro Ambassador]

I would point out that withdrawing pred suddenly at this level could result in an adrenal crisis and require admission to hospital, possibly to ICU in a life-threatening state. Entirely avoidable so their fault and you have left instructions for your family to put in a complaint if such a thing were to happen.

All the abnormal results can be ascribed to being on pred - it increases neutrophils so that increases the total white cell count. It also increases platelets - in some cases it given to do just that.

[gillsky8 in reply to PMRpro]

Yes and GP is using the ongoing use of pred to blame for the variation in blood counts . I guess the hope is then that this will settle on tapering down

[Obscureclouds in reply to gillsky8]

Difficult to say what side effect is down to Pred and what is vasculitis grumbling my consultant would put everything down to Pred as I refused MTX ( even itchy back syndrome which I pointed out several Drs have unsuccessfully tried to find a cause/cure for for over 20 years) whereas my GPs have a more open view of could be Pred, could be Vasculitis or down to something else. I would still suggest following advice of slowly tapering from now on Good luck

[PMRpro Ambassador in reply to gillsky8]

Someone needs to learn a bit more about lab results and use of pred etc ...

[gillsky8 in reply to PMRpro]

As I am also on ppi’s for acid reflux it seems that these can also affect neutrophils and white blood cells and I won’t be off of those for a considerable amount of time as I have a hiatus hernia. Just to add to that I guess it then becomes a vicious circle as the reflux can be caused by prednisone and that is maybe docs thinking to reduce it as soon as is tolerable. To be honest at the moment I actually feel ok . So fingers crossed 🤞