Author Topic: Low Platelets (Read 7156 times)

scud44 · « **on:** May 20, 2007, 05:32:20 am »

My blood platelets have dropped down to only 37 - I am getting tested every week and I want to know is anyone else having problems in this department?
My Doctor is worried andsays that if it gets down any lower, I might need transfusions of some sort.

JohnOso · « **Reply #1 on:** May 20, 2007, 06:39:33 am »

Hiya,

Are you having symptoms of bleeding, bruising? I know where I work, the doctors won't even consider a platelet transfusion unless your count is under 20K, and even then you have to be symptomatic (i.e. actively bleeding). But then they're stingy buggers.

Are you on HAART right now? I guess what i'm asking is if your doc thinks this is a manifestation of HIV or is there something else going on?

Take care,
John

scud44 · « **Reply #2 on:** May 20, 2007, 06:46:09 am »

I went off meds about a month ago after consulting with doctor - they were really playing up on me - Abacavir, Retonavir, Indinavir and Lamivudine (3TC).
I haven't had any bleeding so far but so tired all the time - it's a struggle to walk 100yards to the shop and back.
My current readin is 37 and we are monitoring that every week.

JohnOso · « **Reply #3 on:** May 20, 2007, 05:20:39 pm »

Is your hemoglobin low also??

scud44 · « **Reply #4 on:** May 20, 2007, 09:07:33 pm »

I haven't got that reading from doc - I'll be seeing him tomorrow again so I'll check

RapidRod · « **Reply #5 on:** May 20, 2007, 10:17:20 pm »

scud44, I deal with low platelets and hemoglobin. Mine is not caused by my meds, but by the OI that I have. I don't bleed out, but I do bleed within the tissues. The last time I was infused was last year with 3 units of blood and 4 platelets. It's just one more thing to test for when I go get my labs every three months.

scud44 · « **Reply #6 on:** May 20, 2007, 11:27:52 pm »

I think I'm starting to get used to all these tests now - I have to fly to Melbourne in a fortnight to see another specialist - thats an hour by plane plus other costs out of pocket.

egello · « **Reply #7 on:** May 20, 2007, 11:42:08 pm »

does this have to do with hiv? is hiv the cause of this? doesn't HAART medication just simply fix this?

scud44 · « **Reply #8 on:** May 21, 2007, 02:07:55 am »

Apparently they can be a plus with blood levels - I am off meds at the moment and will be restarting in about 2 - 3 weeks. Just waiting to see a specialist Immunologist before starting.
It's all very frustrating - I know that there are a lot of people a lot worse than I am and I really feel for them and I am not complaing - I am just curious about what else can be done.
I have had blood problems now for about 18 months and have been to many HIV specialists in Sydney and Melbourne as well as Hobart to try to find an answer.
As long as I wake up each day, I'm happy!

Tar Heel · « **Reply #9 on:** May 21, 2007, 06:59:40 pm »

Mine dropped down as I was fighting the retroviral syndrome thingie after I was infected. But in time, it went back up to normal. the doc said my body was seeing the platelets as invaders because I had gone into 'fighter mode' after my infection and was killing platelets as fast as my body could make them.

scud44 · « **Reply #10 on:** May 28, 2007, 04:42:12 pm »

Last weeks blood test showed that the platelets have dropped to 25 - I have been told to go to the hospital day section today to get a bone marrow biopsy - another fun procedure with a big needle - I think I am becoming used to big needles these days - so many of them.
Oh well, I will see what happens in a couple of hours time. Luckily the hospital is only a short walk from home through a nice park that is full of roses.

scud44 · « **Reply #11 on:** June 01, 2007, 01:07:38 am »

I had a bone marrow biopsy and got the results today - apparently I have something called Idiopathic Thrombocytopenia Purpura (ITP) which is basically an OI of HIV affecting the autoimmune system.
I know it sounds like something you'd say to some one if you wanted to insult them.
The result means that the doctors have to monitor the platelets carefully each week to make sure that they don't drop below 15 or 20. So far so good.
I'll just get on with my life and try to pronounce what I have!

JohnOso · « **Reply #12 on:** June 01, 2007, 06:08:08 am »

Yes believe it or not, I have heard of this before actually.

I guess the good news is that now you have a name to put with the symptoms....what is the plan they have for you?

John

Nico · « **Reply #13 on:** June 01, 2007, 12:05:01 pm »

Scud44

I have has ITP for seven years. I was down to 20K platelets. Today, I am up around 200K. I have been taking monthly IVIG infusion therapy for ITP since 2002. It is not cheap around $7K a month, but if you have insurance it is covered. There is another drug called WinRho that is less expensive and is also infused.

Are you also anemic? Usually one goes with the other - at least in my case. Talk to your doc about IVIG or WinRho (anit-d).

Good luck,
Rog

scud44 · « **Reply #14 on:** June 01, 2007, 05:33:32 pm »

I have been off meds for about 6 weeks because it was a case of the cure was worse than the complaint.
I am being put on some replacement meds stating in about 3 weeks ( thats how long it takes to get them down here) and will be monitored weekly.
I have an anaemia problem and I have been given other medication to try to alleviate that problem.
My doctor is away for 3 weeks so I'll have to just go alone for a short while - although I have a back up GP if required.
I'll keep you posted - thanks for the responses.
XXX

Nico · « **Reply #15 on:** June 01, 2007, 07:36:42 pm »

Scud,
Sorry, I did not realize you were an Aussie - thought you had crappy US healthcare. Totally differnet healthcare system. If you have been taking AZT alone, Combivir or Trizivir, these drugs will make you anemic in addition to HIV.

What has worked for me is a Procrit shot (40 iu) every week for one year along with my monthly IVIG. I know your doc is out for three weeks, but please do not place this on the back burner. You need to be on meds now. I bet you sleep quite a bit and have zero energy.

Just take care of yourself and get the right meds and a doc who understands. Trust me, it makes all the difference.

Hugs!
Rog

jntmax39 · « **Reply #16 on:** June 01, 2007, 08:47:06 pm »

Yeah,I went threw the same thing when I went into full blown.
My platlettes went down to 19,I started meds and they went back up.Looks like you better go back on meds.
Good luck

scud44 · « **Reply #17 on:** June 01, 2007, 11:32:53 pm »

It will be interesting to see how the next 3 weeks goes until the meds arrive.
You're right about feeling tired and out of energy - I have trouble walking to Woolworths and that is only about 200 yards away from home

Thanks for the thoughts and suggestions

scud44 · « **Reply #18 on:** June 01, 2007, 11:38:49 pm »

I'll just qualify one thing, the reason for the delay in getting the meds is that one of the meds, Daruavir, or Prezista, is a new one here and isn't on the pharmacy list yet.
This slows the system right down to less than its usual snails pace!

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Author Topic: Low Platelets (Read 7156 times)