Fatigue and ITP

[AnthonyHeard]

I have posted this item previously, back in December 2011 but for those who have not seen it or may be new to the group it is certainly worth posting again, so.................

Fatigue in ITP officially recognised. 585 ITP Support Association members took part in an ITP Fatigue Survey and as a result of the findings haematologists and health professionals can now read in the European Journal of Haematology that fatigue in ITP is not all in the mind but is a real symptom for ITP sufferers. The article entitled Fatigue in Patients with Primary Immune Thrombocytopenia was published in May 2011 Volume 86, Issue 5, Pages 420-429. The following link takes you to the article...?onlinelibrary.wiley.com/do...

[catherineb]

most def all connected , i can see for myself when my little boy is low, after two years watching his every move and patterns, mood swings, even in how he walks at times, (sounds mad but true) its very obvious he is fighting fatigue.... when his head hits the pillow at night he is asleep in seconds!!!!

very very true.!!!!!

[trev1679]

Thank you. I was diagnosed with ITP 18 months ago with a platelet count of 3, and recently had a new consultant. When I related my fatigue as a reason why I knew my count was down prior to him telling me my blood results, he responded that he had never heard of fatigue and ITP being related. This was 6 weeks ago, so clearly there is still work to be done to make the medical profession understand and this enables me to point him in the right direction.

I am on Nplate and every time my dosage is increased I have 3 good weeks and then it drops again and I feel the fatigue coming back. I am near maximum dosage now and he has mentioned Splenectomy so we will see what happens.

[AnthonyHeard Administrator ITP Support Association in reply to trev1679]

Hello Trev, have you tried Rituximab? I had steroids 4 times and always relapsed as soon as they were taken away. Also tried Azathioprine but had a very bad reaction (dizziness, nausea, fever, rash, sickness) then in July 2010 I had Rituximab which has put me in remission ever since thank goodness. I have had no other medication since August 2010.

[trev1679 in reply to AnthonyHeard]

I haven't tried Rituximab. My previous consultant suggested I try Nplate first. What is interesting about your reply is that my new consultant has told me that Rituximab is unsuitable as my liver reacted to Azathioprine when I was prescribed that. Hence him recommending Splenectomy as a next step. But you seem to have had both without that problem, so this seems to give me the basis for a conversation at my next appointment, I admit I do not have much confidence in my new consultant as he seems to not really understand ITP.

[AnthonyHeard Administrator ITP Support Association in reply to trev1679]

Hello trev1679, do not be afraid to ask for a second opinion if you are not confident about the advice you are getting from your consultant. ITP is quite a rare condition and many consultants do not have that much experience in dealing with it. We have just started a new website in conjunction with the ITP Registry. If you look at ...ukitpregistry.com/itpforum/..., there is a list of UK doctors specialising in ITP. Please feel free to get a second opinion from one of the specialists, depending on which is closest to you in the UK.

[Suntied in reply to trev1679]

Everyone I talk to that has had the spleen taken out it hasn't helped. I have ITP and on NPLATE it effects me for 3 days after very tired diarrhea then I am up and going until my next shot. Shots been lasting about 4 weeks then my numbers drop big time. 3 weeks ago I was 173000 above normal been doing that for about 3 months but by 4 weeks fown to 9000. Itching starts in lower legs about 4 weeks. I usually say them with vinegar water helps stop itch then rinse and use lotion it seems to help.

[salmagal]

hi my consultant said he had never heard anyone else feeling fatigue so glad to know im not imagining this i have just spent 1week in hospital due to viral infection was put on antibiotic drip and platelet count went up to 47 after my temperature came down went to 1 again so starting eltrombo pag tomorrow so heres hoping will keep you posted many thanks salmagal