Treatment

[Whitespot]

After taking steroids and then IVIG I was wondering what everyone's next step was. Neither of those seem to keep my numbers up for very long?

[Lin6]

Hi I looked forward to the replies you get as my steriods are also being reduced and count has dropped a little, need to find a good non steriods drug if that's possible!!

Good luck, all the best.

Lin

[Whitespot in reply to Lin6]

Yea, after IVIG and steroids count went to 180 now 25

[kakkar_vikas87 in reply to Whitespot]

Hi,

I can help you with homeopathic medicine.....I was also taking those homeopathic medicine.... Now my platelets count are increased by 90000

[Alexa11 in reply to kakkar_vikas87]

Hi vikas, can you share the homeopathic treatment details? I m looking for alternate treatments and really interested unknowing the details and where I can get it.

Thanks

Alexa11

[kakkar_vikas87 in reply to Alexa11]

Hi Alexa,

I also don't know the treatments details...do one thing...share your blood reports...I will show your reports to the homeopathic doctor...

[selena_campbell in reply to Whitespot]

How long did it take you to drop back to 25?

[kakkar_vikas87 in reply to Lin6]

Hi,

I can help you with homeopathic medicine.....I was also taking those homeopathic medicine.... Now my platelets count are increased by 90000

[JasonJ]

Rituximab is likely. I was hopeful it would work for me, I had it earlier this Summer. Unfortunately I was one of the ones it doesn't work for!

I had no side effects or problems whilst or after having it. Very similar to having an IVIG.

[Caro40]

I wa diagnosed about 9 to 10 weeks ago. First put on steroids and gradually tapered off as they didn't work. Then 5 days of immunoglobulin treatment where they never got any higher than five. Have now been on the n plate injectionfor five weeks and had a few good results but count is still bouncing around all over the place.

Looking at people's comments, everyone is different and haematologists also take different paths in terms of choosing treatment.

I've been told I'm fortunate in getting n plate so early but am really struggling with side effects. Am finding the side effects as bad, if not worse, than the condition itself!

Hope it works out for you.

[Whitespot in reply to Caro40]

What side effects are you experiencing?

[Sachmo16]

Hi Caro40 - what side effects from Nplate are you having? Thanks

[Caro40]

I have constant flu like symptoms. The aches and pains have been quite severe. Seen the consultant on Tuesday and he increased dose, asking me to give it one last try. If still unwell when he sees me this Tuesday, he is going to try another drug. Didn't actually say what it is but did point out that we are running out of treatments.

I've been off sick from work for weeks now so don't feel can keep up with it much longer.

[Lin6 in reply to Caro40]

Bless you all, I know I'm lucky that the steroids have worked for me tho they did drop a little on my last appt but this dizzy head is happening most of the time now as soon as Im on my feet, I'm also on the sick because of it. I'm at the docs on Tues will have to ask for another months sick as my next appt for bloods is not till 5th oct.

Lin

[gordontardio]

I had platelet count hovering between 10-20 for years with a minimum 15mg prednisolone and 100mg azathioprine. I found the aza was helpful to offset some of the pred side effects. I bruised very easily.

I also followed traditional chinese medicine (TCM) to help with the tension brought on by the pred. steroid.

When I finally dropped around 10k count and less I knew I was not responding well enough to preds.. Rhituzimab did not work, nor eltrombopag. I have had stroke before… before starting any treatments, due to bleeding in the brain, and I weren't going there again. That's when the spleenectomy odds started to look good. And by the way the 1/3 fail rate does not mean total fail. Mine was a success. I have no probs with taking penecillin every day, though I do watch out for my digestion, and I take kafir (which I make myself) as my pro biotic.

Good luck in your efforts.