Had my monthly review with GP last week and was told my white blood cell count was low, she said this can happen with long term steroid use. Am now on 7.5mg from 40mg. I asked what, if anything, I could do, and was told to keep eating a healthy diet, keep hydrated and keep on with my walking. I wondered if anyone knows of any particular foods which are good for the immune system? I know I can’t take echinacea with pred, any other supplements which might help? Am eating lots of green veg, broccoli, kale etc, don’t know what else to try.Now avoiding friends & relatives who are full of the cold, but
don’t want to be a recluse!!!!
Would appreciate any advice.
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Fifegran
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Hello. I’m not sure where they got that from and I couldn’t find any general references to this effect. There is plenty written about its effect of increasing white cell count or more specifically, Neutrophils. Personally I’ve been getting raised levels throughout the last 20 months even though I have an unknown condition that means many of my Neutrophils die off every three weeks. Whilst on Pred I’ve been enjoying the dizzy heights of normal counts due to the stimulant effects of Pred. However, while on Pred the Neutrophils aren’t as effective as they ought to be.
Many thanks for that information, read the article with great interest. Decided to ask for another appointment with GP and discuss further. Maybe she did make a mistake?
I would be asking another GP what they think: corticosteroid therapy usually causes raised white cell counts, leucocytosis not leukopenia, and it sounds as if that GP has mixed them up. If your white counts are low - it needs to be investigated.
Yes, agree about hand washing, but whoever (we do know) invented the loud blow all the germs about drying machines!......give me paper towels every time!....
I lie actually - I used one once. I was totally soaked, through to the skin, in Chicago and we were flying back that night. I bought a large t-shirt, long enough to be a dress, and stood with my culottes under the airstream until they were dry...
Just to drone on a bit more, I think the best thing you can do to help your immune system is avoid sugar and other simple carbohydrates as much as possible. I draw the line at my twice weekly glass of wine and 85%cocoa chocolate.
I think the aim with PMR is to suppress the immune system which steroids do very efficiently. The immune system became too enthusiastic and fought against us.
My instinct is that in order for the immune system to be happy again and not shoot the wrong team it needs nurturing. Also, if you take the immune system to be a collection of defence types, like skin, lungs, gut, you need them in as good a state as possible to help stop you getting infections when some parts of the system are being suppressed by Pred. There are other parts that deal with viruses, cancers etc and need to help to function too as well has healing damage. It’s all a bit of a contradiction.
I believe that they are trying out a system which totally kills off the immune system so that it can be reborn and then can grow up again without the problems of fighting the body. I am not sure I would like to try it until they have done a great deal more research though.
I think they had a trial for MS recently and one person died out of 24, so they are relooking at the chemo that kills off the immune system to see if they can improve what they are doing. I am still none too keen to try it for PMR though!
Oh Snazzy you have put your finger on a core issue with chemical treatment of PMR (actually with chemical treatment of illnesses I have encountered personally). My issue is it seems that 'conventional' medicine rarely looks at the causes of an illness - it looks to treating the symptoms, which is great, of course, I couldn't be more grateful to the pharmaceutical industry for the speed with which my PMR symptoms disappeared with Prednisolone - but unless I can work out what caused my system to lose its cool and go totally overboard, I can't stop it happening again.
Looking back over my life, my body has several times suggested I slow down, or get rid of some source of stress or the other which I can relate them to. My PMR didn't really come out of the blue. Following a number of stressful periods within a year, during which I developed various aches and pains, including a frozen shoulder, my system just clearly had enough of my not listening to it and made me take stock. (I also had not really been doing absolutely the best thing in terms of diet.) While I'm dealing with those things, I'm concerned about whether my immune system, under the cosh from Pred, is going to get my reply to its message and 'naturally' get back to normal.
It isn't a case of ifdentfying the trigger - stressors of all sorts - but the mechanism that is triggered that is needed to develop a cure for things. They know what some of the results are - and that has resulted in the use of Actemra to improve control of some cases of PMR/GCA. But there are mulitple stressors and multiple things that can go wrong. It is very difficult...
I think it is such a complicated interplay of emotional, spiritual, physical, genetic and environmental factors I think it is a big ask on an individual basis to pin down the cause. It comes up time and again that when people look back, life’s events and their responses to them made it look like when not if a major systemic problem would occur. I think my problem was the ways of living life I had learned many years ago meant that I didn’t listen to signs that my body wasn’t coping.
Am going to go back on Vit C, took it some time ago when I had anemia but didn’t continue with it once the anemia disappeared. Buying some this week! Tried to get docs appointment today, there is nothing available for 3 weeks!!!!
My four blood tests have all been raised white blood counts, and an infection of some kind, puzzle, dr 's decision, blood test in three months, time, I'm not holding my breath.
Dear Fifegran: Suggestion: Watch out for ice as well. Try for no ice in your drinks. (People touch it, and often there is mold and other bad stuff in the ice makers.) (We yanks love our ice.) And skip the lemons and limes when in a restaurant. Lots of people touch them. Maybe you can find out which white blood cell is low, or if all of them are. I am no expert. I have below normal-low eosinophils and monocytes with a medium-low normal, total white blood cell count. I had no idea about this. I looked on google. Apparently there are 5 different white blood cells. When I researched, the data said that Pred. use can cause this. Re: Eosinophils: Leukemia can as well. So to ease my own concerns I went with the Pred use. I get the blood checked every 2 to 3 months. Never had this before. And I am at my lowest Pred dose yet: 5.25 mg. I don't know. I have a small brain tumor: Meningioma. It's growing. I have no information about what it does to these white blood cells. But I feel better than I ever have. Therefore, I suspect that I don't have leukemia. Wish I could be of more help.
I did google some stuff about pred having an effect on your blood cells and came across the information that there are 5 different types of white blood cells, I found it all quite complicated so I decided to wait until I see the doctor again, I have my bloods checked every month, they’ve done that from the start, due to be done next week, see the doctor the following week, will get her to explain more. Thanks for the tip about avoiding ice, also lemon & limes. Will have to google Eosinophils, never heard of it! I think I led my life in blissful ignorance before this illness, there’s a lot to learn! How long have you been on pred? You say you are feeling better than you ever have, despite the brain tumour. Long may you feel good, and thank you so much for all the information.
Like you, I am astonished that our bodies work at all! We are amazing. I was diagnosed 5 and a half years ago. Before that I was very sick for 7 months and sometimes the doctor gave me a "burst" of Pred. which always made me feel better. I hate to hope, but in the last 8 months or so I have decreased from 6 mg. to 5.75, to 5.25 and now am starting on 4.75. I have never been able to taper like this. I now don't have GCA pain and the stuff going on in my eyes seems stable. Sometimes I am "stiff." But not wretchedly stiff. My brain tumor is very small about 6 mm by 8 mm. But it's growing. It's a meningioma, which is usually not cancer and usually is slow growing. It is not affecting my brain at the moment. So for me, right now might be all good. Yesterday I asked my doctor about the 2 low white blood cell counts which I have (eosinophils and monocytes [sp]). (It was my lung doctor, but his wife has PMR.) He said that it's the Prednisone. I also wish you "long may you feel good." And thank you for wishing it to me. I do often feel very alone in all this. Your wish meant a lot to me. Elaine
I googled eosinophils and among all the information, apparently the count can vary according to the time of day, h’m, how mad is that. I am so glad the tumour is usually not cancer and is very slow growing, that must be a relief. 4.75, that’s really good, I notice you work in
quarters, I might try that, am on 7.5, going on 7 soon (hopefully). I find this an emotional stage, I often feel all over the place, waking up at 5am can’t get back to sleep, mind whirring. I have never met anyone else with PMR, it’s met with blank looks and ‘what’s that’? I understand how you can feel alone Elaine, that’s why I usually have a read on this forum most days, it’s like a wee family, we are here for each other.
NRR (No Response Required) Thank you Carol: Yes people on this forum definitely understand. And the good news is that I am no longer in a lot of pain.
I have 2.5 mg. pills along with 1 mg. and 5 mg. I can cut them in half and get a quarter or three quarters as part of a dose. For many years my Pred. dose was just barely above the disease. That's why I decreased only by a quarter. This time I've tried a .5 decrease. I have my fingers crossed.
I see a neuro-surgeon this week because my tumor is growing. Albeit it remains very small. I muse that maybe the (former) higher doses of Pred. may have slowed it down. This is too much to think about. But the surgeon should have a bead on that. He probably won't operate soon. It's too small. Maybe I can out live it.
And right now I feel somewhat great!!!! I do have a spouse and two adult children. So I'm not really "alone." It's just as we all know--nobody understands and, therefore, no one is interested in our worries or problems. To have problem is to be a problem. So we shoulder through.
boost up your intake of fruits and water. If you can get your hands on coconut oil this will help too. Just a sip per day. Apart from that, have you ever heard of andrographis?
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