General Questions

Hi all, just after some information from you guys if possible. I was diagnosed with ITP in 2005 and spent a week in hospital with a platelet count of 3, i was treated with a platelet transfusion but my body rejected it straight away so ended up with just Prednisilone for a few months starting on 12 tabs a day and tapered down gradually and my count went back to normal. The same thing happened again two years later but this time my count was down to 1, i was given four blood transfusions this time and again i was treated with Prednisilone, starting on 12 a day and tapered down and this worked a treat again. Both of these times although my count was really low i never felt ill and the only trouble i had was the nasty side affects to the steroids.

Recently i was hospitalised again with a platelet count of 1, felt perfectly well still and only knew they were low through the rash and blood blisters in my mouth, this time though i was treated with 6 IVIG transfusions over two days and again put on Prednisilone 12 a day and being tapered down slowly, i was also told my heamolglobin was low this time which had never been a problem before.

my platelet count over the last six weeks has gone from
1 (60mg Pred daily)
22 (60mg Pred daily)
22 (60mg Pred daily)
51 (40mg Pred daily)
53 (40mg Pred daily)
66 (40mg Pred daily)

The previous two times ive had problems with ITP my counts have shot up much faster, i was just wondering if Prednisilone does not work as well if you have it too many times? I was told last week by my heamotologist that my treatment is "none responsive" and he took blood from me to check me for any other problems i might have i.e kidneys/liver problems sodium/potassium levels etc. Although i was told my treatment was not working as it should hes kept me on 40mg day Prednisilone while i wait for the results of these tests. I still feel well but recently i am experiencing really bad pain in my back and sides that just wont go away and seems to be getting worse, is this a side affect to the Prednisilone? Also he said my White cells were higher than they should be, could this be because of the steroids?

Any information would be much appreciated, thanks in advance.

Hi Charlie,

It looks to me like you're responding somewhat to the pred, although perhaps not as well as before. At least your counts are safe. I never feel ill with low counts, either, at least until I realize they're low. Then I start to get a bit scared and start imagining all sorts of dire things.

As far as the pain in your back and sides, I think you should see a doctor about that. This doesn't really sound like a prednisone side effect and you're still taking high doses.I get aches and pains when I taper the prednisone but not usually until I'm below 10 mg and then it's more like fluey achiness and stiffness. You can also ask about the white cells then.

Good luck with it and do keep us posted.

Lily

It sounds like more is probably going on than just platelets. I don't know much about prednisilone but have used pred. Anything can happen when it comes to treatment response changing. The pred is helping you though. I never got higher than 70k on pred, and then it always dropped soon after tapering. Does the IVIG do much for you? I hope your other tests show what you need to treat so that you can start getting better. The white cells usually indicate the body fighting something.

Michelle

Hi Charlie,

You never can tell what these drugs can do to you. I had a lot of pain from the Prednisolone... in my back and hips and shoulders. The hematologist said that it could be from the Pred. But I've also been treated with Rituximab infusion. But the Pred was always the worst for longer term side-effects for me. The pain, and sleeplessness.

Hope they can drop it for you soon.

Jules

Hi Charlie,

I have taken prednisone on and off since 1982, after my spleenectomy due to ITP, and the only side effects I have noticed from it are bloating and it keeps me awake at night. I agree with Michelle, it sounds like something else is going on other than an issue with your platelet. Prednisone also always helps my arthristis, it takes awaya the pain for me. However, that being said, everyone reacts differently to medications. Good luck Charlie!

Hi all, firstly thank you all for your replys

Since i last wrote ive been to my heamotologist twice, the first time my count was up to 119 (GREAT!) and i was reduced to 30mg Pred a day, but my results from all the other tests had not been returned yet as they were sent off to a different hospital.

Went back today and my count has dropped back to 66! Im lucky to never have dropped before on steroids so i was very surprised. The haemotologist said this is not good after two months of high doses of pred, and has started me today on a drug called azathioprine and reduced my pred down to 20mg a day. Has any of you had this drug before? I've never heard of it myself but the doctor said it will reduce my white cells right down, will take 2weeks before it begins to work and therefore i can't come off the steroids for another few weeks. He has put me on this because the steroids are not working.

My other results came back fine so at least there was some good news! Any information on Azathioprine would be fantastic.

Im only 22 and feel absoloutley fine, i wouldnt know my counts were low if it wasnt for the regular check ups, just want to make a decision if id be better off with no medication and low counts than all these tablets. (Ballooned up nicely on the pred, no matter how hard i work in the gym!)

Thanks.

Hi there! Great your counts went up to a safe level. Im on Azathioprine & have been for almost 3yrs. The pred stopped working on me once they started the tapering. I got awful pains in my back & under my left shoulder blade that was so bad i couldnt climb the stairs in one go or walk very far. Once i was almost off the pred it got better. I started on 150mg Azathioprine along with 60mg pred with a count of 10k, it took a couple of weeks to see the count slowly rise e.g 10k, 14k, 17k, 21k, 29k. It can take upto 3mth to see a rise in counts so dont count on 2 weeks thats too short a time scale.

You must take it after food and with a full glass of water, dont eat after it.
You will need to take precautions as it can cause a fetus to have dual sex organs.
I remember getting thick eyes and light headed when i went on it and shivvers when in crowds of people.
Pred can mess with your white blood cells too.

I am now on 50mg Azathioprine every other day now to try and come off it as my count has been in the 250k mark for about a year now, it has been as high as 380k and just take the tablet before bed with a glass of water.

Its well worth a try! Good luck and if you have any worries or questions feel free to email me.

Julia

Hi Charlie,

Prednisone may give you an elevated white blood cell count and a low lymphocyte count because it suppresses your immune system.