Low Blood Sugar: Anyone know of receiving 5Mg... - CLL Support

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Low Blood Sugar

uide3095 profile image
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Anyone know of receiving 5Mg / day of folic acid due to the findings below

From My Haematologist to my Dr which is the usual 4 weekly report he sends'

Dapsone is giving rise to compensated haemolysis without anemia as indicated by a reticulocyte count of 161.7 and haemolysis is the cause of the abnormally low HbA1c at 13.

I advise William to take over the counter Folic Acid 5mg daily for the long term. A few patients with haemolysis will develop severe hypoproliferative anemia during severe viral infections in which case the Dapsone would need to be stopped and a blood transfusion may need to be given. I felt that at the moment the benefit of Dapsone outweighs this potential risk.

Hb was 13 WCC 5.7 neuts 3.5, lymphocytes 1.5 and plts 218, liver and bone function tests were normal.

The only thing I do on a regular basis i.e. 3 to 4 times a week to a high level

Anyone with any history or knowledge of this would be grateful, thanks

Will

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uide3095
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cajunjeff profile image
cajunjeff

Hello Uide3095. It sounds to me that your doctor suspects that Dapsone is causing you to have early signs of hemolytic anemia (AIHA). AIHA is an autoimmune disease wherein one’s own body attacks red blood cells causing low hemoglobin and anemia.

Folic acid is often given as a supplement to help falling hemoglobin. I do not think, and I could be wrong, that folic acid would significantly treat full blown AIHA, but it sure cant hurt.

AHIA is well known to be triggered by cll. AIHA is also considered to be a risk of taking Dapsone.

You doctor appears aware of the latter for sure, and I would assume he is aware of the former as well.

What is not clear is why your doctor is giving you dapsone, since he assumedly knows you are at risk for AIHA anyway, juts by having cll.

You doctor does appear to do an analysis wherein he makes clear in his notes that while he is well aware of your rick for AIHA, he considers the benefit you get from daspone to outweigh the risk. I thought Dapsone was primarily for skin infections, but I see it’s also used for certain pneumonias.

Do you know why you are taking it? Can you get a second opinion? Im not one to second guess your doctor, particularly where he makes it very clear he has done some sort of risk/benefit analysis. One can only assume he thinks whatever condition dapsone is treating for you to be serious enough to take the risk your AIHA could worsen due to taking dapsone. Your doctor makes reference to a severe viral infection, so I guess that’s what the dapsone is for, and your doc must think other available meds would not treat it as well as dapsone does. Good luck.

uide3095 profile image
uide3095 in reply tocajunjeff

Hi,

thanks for your response

I was on Co-trimoxazole taken with the Acalabrutinib and Aciclovir, however after having covid and having to stop everything for 4 weeks, when I started back again the Co-trimoxazole started to give me a hot rash and itching all over so it is now considered I am allergic to it. The Dapsone is the replacement when there were changes before I was given Phosphate Sandoz 3 days a week which seem to bring everything back into line.

I suppose the other question is 5Mg is very high as it cant be bought over the counter

Will

cajunjeff profile image
cajunjeff in reply touide3095

I took folic acid for my AIHA. I think it was 5mg, so I assume that dose is fine. In the US folic acid is available both by prescription and over the counter.

Jm954 profile image
Jm954Administrator

Dapsone is well know for causing haemolytic anaemia and it's quite different to the type of AIHA usually seen in CLL.

The folic acid supplementation is to ensure you don't become anaemic as the rapid production of red cells to compensate for the haemolysis can quickly deplete your folic acid reserves (the body only holds 3 months in storage).

Your A1C is probably low because a lot of your red cells are young and haven't had the usual long expose to blood glucose levels.

Jackie

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