finally had to get on steroids...but, it is not bad!

[Hblair]

I have been doing anything possible to avoid steroids... from gluten free diet, papaya leaf extract, to Chinese medicine... but Monday I started bleeding... a lot. ( even though I had stopped my menst. cycle 4 months ago)... it decided to visit me again with a vengeance. Needless to say a quick trip to ER to be sure they didnt need to do a blood transfusion ( I was close) but nope... and ironically my platelets had gone up from 16 to 24. Now mind you many of you are hospitalized when this low but I have been traveling ( mostly domestic--I am leaving for Boston Sunday) and going about my business... mostly dealing with head aches and low energy. The acupuncture treatments really help with both of those.

So, now I am on day 3 of a 4 day regime of Decadron and will run my platelets again next week. My trip to Dubai on the 14th MAY get postponed if they aren't up to a more safe amount for International travel.

I just wanted to let you all know that surprisingly the steroids have had ZERO negative effects on me- which surprised the heck out of me!

Wishing everyone success with this crazy illness. BTW I highly recommend taking this article itmonline.org/arts/itp.htm to a Chinese herbalist in your area. I think they look at the body and find what it takes to get you working properly.

Happy Holidays.....

Heather

[tgk62]

I hope you are spared side affects. Prednisone had some gnarly ones. First time I was on it was only for a few days, no problems. But about 2 weeks later, I had to start it again, and was on it for 4 months. Never tried dec. Maybe being on them a short time, it won't bother you as much. Good luck.

[NickyD]

My experience of steroids is that it depends on the level you are taking. At a low level i had no side effects, but as the dosage increased so did the side effects. I came off the steroids over 3 years ago and although i have managed to shed the four and a half stone in weight that i put on, i am struggling with the memory loss that they caused. I will give you an example of the memory loss - before the steroids i was an avid knitter - i once made a cardigan for my sister and used over 80 different colours - with the memory loss i could not remember how to knit. Over three years on i still cant work out how to follow a knitting pattern.

Now expand this into me running my own business and my personal life. It is AWFUL and HORRIBLE! I forget who i spoke to yesterday, I forget even having meetings with people last week and no recollection at all of deals i have done even last month........

[Nespinoza]

Hello when I start my month I need to watch out I tend to bleed a lot for the first two daysfirst which I was told is normal. ... but back in 2007 I hemmorage which landed me in the hospital for about one week I had to get a blood transfusion... I'm not on any type of meds I just do labs once I month and we take it from there last month I was at 164,000... but after two years I had to have ivig Sept 2015 since then I have been doing very good best of luck

[22-patience]

I live in Washington State so Portland is quite close. I actually had a Chinese tea prepared for me by Subhuti Dharmananda, Director, Institute for Traditional Medicine in Portland when I first got ITP. He was recommended to me by my acupuncturist. I should have stayed on the formula longer rather than having my spleen out. I read the article you suggested we read and was really surprised when I saw his name. I truely believe Dr. Dharmananda knows what he is doing. Maybe I will contact him again and give it another go. Certainly can't do any more harm than the meds we are being offered here for ITP. Thank you for sharing. 22-patience

[Hblair in reply to 22-patience]

Exactly.

[KeithITP]

In my unfortunately extensive experience of steroids, there are a few main features: I feel great when I start, it's only once I've been on them a while (prednisolone) that I feel so bad. How bad I feel depends on how high the dose is.

On very high short doses to try and avoid this (like 40mg dexamethasone for 4 days), the few days after coming off are awful.

[Hblair in reply to KeithITP]

Yup coming off is horrible.