Steroids....

[Bellazac1971]

Hi all

Our 13 year old daughter is having a bone marrow biopsy on Tuesday following 4 months of "watch and wait". Count has hovered between 36 and 10, mainly settling around the late teens.

We've been told that the is a very strong chance that she will be given steroids to also come home with.

What should we expect from the steroids and are there questions I should be asking about them?

Many thanks as ever.

[sailor]

Steroids are excellent as a first line treatment and can increase the blood count to a safer level. They are however not a medication which should be relied upon for any length of time. The side effects are weight increase; loss of sleep and hyperactivity in the short term.

There are many other medications which are available should steroids not work. If you consult the ITP Support Association web site, you will find a list of medications that can be tried after steroids, if absolutely necessary. Obviously with a female, periods are a concern, but with the correct advice from an ITP specialist haematologist, management of the condition can be achieved and she should be able to live a full and normal life for a teenager.

[4ladylove in reply to sailor]

U may consider having the birth control shot for ur daughter to stop her cycle cause it can be heavy and uncomfortable.my daughter been getting the shot to help relieve the stress of having to deal with that.she gets it every 3mos...believe me she will appreciate not having that to worry about

[tgk62]

She may experience insomnia, weight gain,moon face, mood swings. She will probably need to take antacids because of heartburn from prednisone. She may also have other side effects. If she doesn't have bleeding issues, you may want to continue more watching and waiting .

[Bellazac1971 in reply to tgk62]

Many thanks for your comments and advice. Unfortunately it's the excessive bleeding that has tipped her Consultant in this direction. She has been on Loesterin 20 for about 8 weeks and despite taking packs back to back is still bleeding very heavily over the top of the tablets. Transamic acid and now a week of Noristherone and her excessively heavy 3 week long period is just starting to show signs of reducing.

[eciardullo]

Any substitute to prednisone is better. I was on doses as high as 60 mg to a very slow taper to 1 then none. In the process possibly successful l am not sure l have also had my spleen removed been on revolade and lastly rituxamab not sure which did the trick but l have been over 200 count for almost a year now. Please take diet into consideration l am presently vegan and gluten free l am sure this has helped. I hope to never have to be put on prednisone again will definitely search for alternatives l had a very lengthy list of side effects and hope to never have to be put on that drug again....Good luck...God bless...l wish you well....

[Ltinny]

One other thing you might want to ask the doctor is if your daughter should take vitamin D supplement. Prednisone is known to hasten osteoporosis if used for long periods of time, high doses, etc. I hope it goes well and she only needs a short spurt of steroids, and maybe jog the platelets up. Take care.