ITP for 2 months now..

[nicoleeeeeeeeeeeee]

Hello! Just want to know how you guys deal with ITP? My hematologist prescribed me decilone 4mg daily for a week now and my face is getting puffier with an apple-shaped tummy and cellulites on my thighs. Is it possible that I wean my steroids and just opt for the best natural way as much as possible?

[AWSAR]

Hello,

You cant wean off steroid just as. u have to ask ur DR, whats ur counts? when u diagnosis with ITP?

whats ur age?

[nicoleeeeeeeeeeeee in reply to AWSAR]

Last november. I'm 22 yrs old btw. Went to the doctor earlier w 45 counts and suggested me to get a spleenectomy which I dont like. also, she agrees to have my steroids every other day. side effects are really bad can I at least try drinking wheatgrass or spirulina. any thoughts for that? Just want to have the natural way..

[AWSAR in reply to nicoleeeeeeeeeeeee]

Alright. What symptoms u r facing cuz of ITP? active bleeding? . how u diagonse ?

[nicoleeeeeeeeeeeee in reply to AWSAR]

actually I have a heavy menstrual bleeding on the first week of october and didn't mind it until the last week of october when I got fever for days and get hospitalized for 5 days. they diagnosed me dengue w warning signs since my counts are always low (9 was the lowest). Got out from the hospital with 49 counts since i still have to do some sch stuffs then they told me to have a follow up cbc after a week. so I did.. and it was 14! it was alarming to my father so wenr to a hematogist then there she explained about ITP..

[AWSAR in reply to nicoleeeeeeeeeeeee]

You still have bleeding issue? If not , then ask ur Dr to wean off steroid . Dr explain it to u, how to do it. normally its like from high level dose to low level steadily .

i had my counts 4. with no medication

only bleeding risk matter.

[nicoleeeeeeeeeeeee in reply to AWSAR]

no not all. just that one when I got to the hospital. what if Ihave small bruises?

[AWSAR in reply to nicoleeeeeeeeeeeee]

bruises are not a major problem for me though i dont know about you. . I think its better to have bruises then side affects of steroid

[nicoleeeeeeeeeeeee in reply to AWSAR]

Oh okayy! Thought it my have some other effects hehe thanks for replying tho! Appreciateit.

[AWSAR in reply to nicoleeeeeeeeeeeee]

Yeah. Just relax. n try to wean off steroid asap. n ask ur dr for any other medicine . n give them one try. if not effective than dont take any medicine and live happily. only active bleeding is major problem . also if u have any surgery u need transfusion. n take care of ur self. avoid activity which can cause injury .

cheers

[nicoleeeeeeeeeeeee in reply to AWSAR]

Thank u for the feedback!! Really appreciateit!!

[Lynwoodley in reply to nicoleeeeeeeeeeeee]

Hi I found out I had ITP about 10 months ago My count has been from 33 to 106 but averages 40-50. My consultant has not put me on anything he is just monitoring me I bruise but do not bleed. I take multi vitamin, folic acid, aloe Vera, omega 3 fish oils and papaya extract tablets all with the consent of my consultant. You may want to get a 2nd opinion on taking drugs and ask also if you can take anybthe above

[nicoleeeeeeeeeeeee in reply to Lynwoodley]

wow thank you for this one! I don't really like taking steroids as you know the side effects... thank you again!!

[Suntied in reply to nicoleeeeeeeeeeeee]

NPLATE works well on me it keeps my numbers up to normal levels 150000 and up. It's a shot longer I take it longer between shots up to five weeks. But it makes me feel crappy for about 3 days then good to go.I have had this for 11 months. Steroids didn't work some people gave good luck with Rituxan it works on 60 percent of people but didn't work on me. Good luck crappy stuff.

[holcotts in reply to Lynwoodley]

thanks lynwoodley for these tips, ALWAYS USEFUL. i WASNT SURE ABOUT ALOE VERA AS SOMEONE SAID avoid drugs with immune boosting properties....? does anyone know about aloe vera? thanks again

[Suntied in reply to nicoleeeeeeeeeeeee]

I do papaya tea nasty put it seems to bring up my numbers. Lots green veggies seem to help alot. No one I have talked to that had spleen out said they didn't do any better and had alot side effects from having to take antibiotics. So I am not having my spleen out. Because it doesn't help actually makes it worse some people said.

[nicoleeeeeeeeeeeee in reply to Suntied]

are you still taking steroids?

[Morgan]

Hi, diagnosed 15 years ago, do not bleed and only bruise occasionally but despite counts of between 15 to 50 have not needed any medication unless having a minor operation.

[nicoleeeeeeeeeeeee in reply to Morgan]

Wow! How did you cope with that?

[Morgan in reply to nicoleeeeeeeeeeeee]

Have had 3 ops just to remove teeth! first op my platelets were high enough not to have intervention, 2nd op I had steroids to boost platelets but that sent them to zero! Then had ivig which did the trick but gave me awful headaches so my hemo wont use it again and last op I had n-plate which was fine. Now I am off medication and will hopefully stay off it providing my platelets don't drop any more (15 at moment)

[lc12345]

Steroids is the very first line of treatment but there are many more that don't have these side effects! Unfortunately steroids is always the start and you need to follow the course that is prescribed exactly. I had splenectomy ( don't advocate at all), MMF, azathioprine, and rituximab that brought me nearly 3 years remission as for now.

[nicoleeeeeeeeeeeee in reply to lc12345]

Ohhh how have you been since your splenectomy?

[Zaff]

I had huge problems with steroids but do check with your consultant before coming off them, I found the withdrawal symptoms worse than being on the steroids even though it was a planned withdrawal. there are other treatments available but steroids seem to be the first thing they try

[nicoleeeeeeeeeeeee in reply to Zaff]

what happened during your withdrawal? doctor said I should take my steroids every other day but the side effects are getting real. I always shiver and can't sleep well...

[Zaff in reply to nicoleeeeeeeeeeeee]

The sleep problems actually improved, as did the apple face and I lost a bit of weight but for 2-3 months after I stopped taking them I had a weak feeling in my arms and legs, sometimes the muscles would tremble and at times my hands would shake violently, so badly I couldnt write or grip things (at one time I went to my GP because I thought I might have Parkinson's disease), I googled steroid withdrawal and found a recording of someone with the same symptoms then did a bit of research, I asked my consultant about this but from what Ive read it seems its not as rare as he said it was