dealing with ITP

[Truane]

Hi All

I'm new here and just wish to learn about my ITP had an episode last July and still coming to terms with all that goes with it. Finding a little difficult to cope with it all and the side affects of the drugs. Get really tired some days, but am hoping to get back to work soon.

Any information would be appreciated thanks.

[HOLCOTT]

Hello, what drugs are you on? What was your initial experience? It does take some adjustment, I find I have to listen to my body more, but I really hope you can go back to work soon and have a more or less ordinary life again. How often are you going to the clinic? Or for blood tests? Take care

[Truane in reply to HOLCOTT]

I,m on prednisone now only twice a week reduced from 10 tablets a day. Which is great, but have had withdrawal with aching joints and low moods and feeling so tired I can't think properly. Also on Azathioprine 100g daily

My iron levels have been extremely low and so on high dose of pills for that and extra vitamin d for 30 days to build that up. Have also developed diabetes from tablets.

It becomes so draining to keep on top.

Am seeing consultant next week after 4week break. Just have bloods done prior appointment.

I initially had a platelet count of 3. It has gone up and down since last July. At last appointment it was 88 which is an excellent improvement, but just worried about my hair loss which is daily.

[Lynwoodley]

Hi 88 is quite good. I found out about 1 year ago I had ITP. My bloods have gone from 29 - 106. I have not been on any medication yet my consultant just monitors me I have a blood test every 4 weeks unless I feel very low then I have a blood test done. I have found that as time has gone on I can tell if my blood has dropped below 50 (which for me seems to be an ok number) I get aching arms and legs, headaches, bruise badly and generally feel drained, so I rest a lot more then, I'm lucky I have not been a bleeder. I take the following things daily that I think seem to help me although no one really knows what helps, aloe Vera, folic acid, multivitamin, omega 3 fish oils, vitamin B12, papaya extract and selenium but check with your consultant before taking anything. Unfortunately it's just a case of listening to your own body, trying to work out what works for you, don't let it get you down and carrying on having a normal life.

[Truane in reply to Lynwoodley]

Thank you the information I will take it on bored.

[HOLCOTT]

I don't know anything about the Azathione stuff and its side effects. But sounds like you were on whopping steroids to start with. Maybe,at some point you will be able to drop the Az. So are you on10mg per week prednisoline? Perhaps when the big dose gets out of your system you will feel better. I on 2.5mg per day. Still do get a bit tired .....glad you have 88, that's a healthy number. I found taking vit C helped and papaya leaf extract. And smoothies with kale, spinach , lime and fruits. I think they helped, though could have been the steroids too.

Rest when you can, eat well, and ease yourself back into work if you can. Is it a stressful job? How old are you? Be good to yourself ? X

[Truane in reply to HOLCOTT]

Yes 10 mg a week which is great compared to what I have been on. I had not heard of the papaya extract will look into this.

Sometimes can be I do notice that when stressed it seems to be worse. 49 now do you think the age makes it worse.

Thank you for your response.

[HOLCOTT in reply to Truane]

I will send you the name of tbe papaya leaf extract capsules I use but no idea if they do any good. Age wise I guess it's different things going on in your life. I was 43 with baby and now I have menapausal symptoms too which doesn't help but you might be a man!!! I used it to change job and get a bit more space in my life, took it as a message that I was too full on. !, I changed job s too. Hope all goes well for you x

[Truane in reply to HOLCOTT]

Thanks for that no definitely a woman last time I checked. Hee hee

[HOLCOTT]

Hee, hee

The capsules I got - from internet- not a reccomendation as there's no real telling what works and what doesn't ( on small dose of prednisolone too) plus vit c- are called ' Haley's papaya leaf capsules' ........ And I had some papaya leaf teA. Plus lots of smoothies with kale plus spinach xxx good luck, keep me posted on your platelets and any gender changes!!!!!!! Take care

[beach311 in reply to HOLCOTT]

Spleen removal and predizone seems to be working so far! Stay well