Hello, I have been on anti D for the last year, every 2-3 months.
Helps platelets rise from under 20 to above a hundred. Quite magical and not too much trouble or side effects.
Feel like I am taking a little longer to recover from the treatment each time, but not sure; could be other factors. Only a headache and a bit of tiredness, nothing major
Keen to hear from anyone else on long term anti- D and your experiences
Thanks!
Hi Hilcott,
I used to get anti-d, been free and clear for well over a year now with platelet counts generally between 15 and 30.
Do they do a pre-med of steroids/Piriton with yours??
Owen
Hi Owen, thanks for reply. No pre-med. Do you think that might help with after effects. ? So would anti d raise your platelets beyond 30? How's life on 30? Do you get awful tired?
The reason I asked was that the premed made things worse for me, steroids don't agree with my personality.
It's been a while since I needed anti-d as my platelet count is relatively stable, albeit fairly low.
The anti-d was given to me originally when my count was in single figures, but when my consultant retired the new one moved the cut off from 10 to 30. I received anti-d more regularly as a result, but it was only effective for me when I had single digit counts, so we've stopped the treatments.
In my opinion, the anti-day boosted the count, but when it wore off my count would crash. Without it, my count doesn't fall as low.
The headaches I found were helped by getting the nurses to run an extra 500ml or so of IV fluids in after I received the anti-d.
I manage fatigue by being active, too little activity and I become tired and feel depressed. The right amount and I feel fairly energetic and sleep better. Too much and I feel exhausted, it's a real balancing act
Hope that might be of some use.
At my last bloods, 4 weeks ago, my count was 42 the highest it has been for years. That was just after finishing a university course, and going on a sun holiday to the med!!
Dear Owen,
Thank you so much for this, REALLY useful and has cheered me up as I feel maybe next time I have my anti D , it may not take a whole week to recover, and there is something I can do. I really appreciate it. Do you have your treatment in the UK - - are they at 42 with no treatment?
Totally get what you are saying about the balancing act, its a tricky one. I feel day to day life - have an 8 yr old, and do a little childminding for money and play sport when i feel well enough is plenty - but i do question whether i should do more and go back to more 'proper' work. I was a social worker, and gave up last year at 50.
Congratulations on the course , and the holiday, and thanks again for taking the time
jen
I have recently completed by 4 treatments with anti D. it has now raised my count to 114,000.Prior to the treatments I had recently gone down to 3,000. I have been treating for the last 8 yrs with prednisone. I am sorry to hear that you are having to treat every 2-3 months. I have read some people have long lasting effects, where their counts say up for 3, 5, and one person 7 yrs! What are your counts at? I never let them treat unless my counts are below 20.
Hi pzena, Thank you for your reply. How spaced out were your treatments I wonder? yes mine are normally below 20 at treatment unless i am feeling terrible.
So sometimes one dose of anti D and they stay up for years? really? wish that was me!
Silly question... what is anti D?
Its anti d immunogloblin, you have it intravenously, more commonly used in pregnancy (when baby is different blood group to mum) but given in higher doses it affects platelets. Look at ITP support association website.....for details
Thanks... I've had this as a treatment... just never heard it called anti D...
what is anti d i am on steriod DELTACORTAL since 6 months and i want to get rid out of them
just had my first 4 infusions. My last count was 114,000! great for me. I am sorry to hear that you are having to do this every 2-3 months. I have heard of people going 3, 5, 7 yrs!!! I will have to see how my body responds. I have days that are good, and then I have days I am really tired. I am use to being very active, but have not been recently. ( I played pickleball up to 2 months ago when I hurt my hip). I am 71 so, maybe I am just old. LOL, When they give me the treatment they give me 2 tyenyol and bendedayl and another antihistamine in the inv, Hope this helps
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