My Treatment Update

[BloodZero]

So my dosage was upped to 500mg Hydroxy everyday except Mon/Tue/Wed. On those day I took 1000mg. After one month this brought my platelets down to 800. Not enough. So from today I will be taking 1000mg 5 days a week. 500mg 2 days a week.

I asked my Haemo at what point would I stop taking aspirin. I had a nose bleed the other day and took 3 hrs to stop completely. I had to miss an important meeting. I also like to go solo bush walking and am a little concerned if I get an injury that I may bleed to much. She said that I will be on Aspirin my whole life even if my platelets go down to normal range.

When I stated on Hydroxy she also stated me Allopurinol. Since starting treatment Ive been getting pins & needles sensation in my feet. Particularly my left. And my blood pressure has rising dramatically (132-85 to 148-99). She didnt think it was the medication, but at the same time said I can stop the allopurinol. Which I will do.

Other than some stomach upsets, I feel fine and possibly a little better in the way of energy.

I will update again in one months time.

Regards

Steve

[Osteomyelio]

Thank you. It seems like you feel the new Hydroxy regimen is worth trying?

I am on Allopurinol and get the same sensations in my feet, oddly my left foot (I do have an impingement on the sacral disc that innervates the left leg). Please keep us advised on how you do with hydroxy.

[BloodZero in reply to Osteomyelio]

Worth trying? Yes. But i wouldnt be my first choice.

As far as im aware it can easily be stopped without any backlash. (When discussing new meds with Drs, its often the first thing i ask).

[MiltonBradley]

Hi BloodZero,

At first treatment is a trial and error waiting game. You will get there with the mixed dosage. What number were your platelets when they started? Mine were 1K and after playing with the dosage for 6 months mine went down to 350 and have stayed there on a dosage of 500mg most days except M-W-F 1000 mg. Best Wishes.

[mbr8076 in reply to MiltonBradley]

I realized I did not address the Allopurinol. I, too, was on Allopurinol at first and after 6 months I asked if I could go off and the Hematologist said Yes and stopped immediately without any problems. But, aspirin, I was told the same:/ I am on low dose 81 mg but I do not bleed as much as you stated.

[BloodZero in reply to MiltonBradley]

My platelets were 1400 when starting treatment.

[hunter5582]

With elevated platelet levels and increased bleeding - I would wonder about Acquired von Willebrand Disease. Apparently it is rather tricky to nail down when this is going on. I am currently under assessment for this. Waiting on results. May have nothing whatsoever to do with your situation, but you might want to ask your hemo-doc about your prothrombin times and vWF tests. All the best.

[BloodZero in reply to hunter5582]

Heamo said next blood test in 3 weeks will test my clotting factor. So she may well be thinking similarly.

[Cja1956]

So I’ve never been on Allopurinol. I’d never heard of it until I found this site. Are you taking blood pressure medication? I would be concerned about your bleeding issues. Maybe you should get a second opinion.

[BloodZero]

Haemo has allowed me to stop the Allopurinol. So i want to wait a month or so and see if the BP comes down and feet numbness stops. If not i will go to Gp regarding hypertension.

In a few week doc will test the clotting factor in my blood.