Post transfusion Hb check

[triumphe64]

Here is the information on Dr. Maciejewski.
I don't see an email, but I do see a Fax number.

http://my.clevelandclinic.org/staff_...?doctorid=4362

[Cheryl C]

I am interested in the paper about NO-FLUSH niacin too, as while I have pancytopenia, neutrophils are the biggest problem - ANC of 400-500 lately.

Thank you!

[Chirley]

When I read NO FLUSH niacin....I thought it meant you didn't pee it out . I already take B6 tablets, Folic Acid tablets and B12 injections all prescribed by my GP.

I'll definitely ask my doctor about the niacin. I had a fright a few nights ago when my temp went up to 38.1 with neuts of 0.17 but I took some Nurofen and in the morning everything was ok again.

I had an eye test today and I was told I have scotoma ? and that my optic nerves don't look normal. I've been referred to a neuro ophthalmologist. The joke is.....the closest appointment is over four months away.

I had a blood test today and I'm really curious about the results. I feel better today than for the last few weeks. I cheated a little and didn't drink any fluids before the test so the results look a little better, naughty hey?

Keep well every one.

Regards

Chirley

[tytd]

Hi Chirley,
I am glad that you are feeling better. I am no expert and I know that you have to be cautious about what you read online but I came across an old paper on copper which stated that "Vitamens C, B6, folic acid and zinc are copper antagonists". Also another line said " the need for Vitamens A, C, B6, B3(niacin), and B5 is reduced in the copper deficient state". Therefore I would wonder if you might not be doing more harm than good by taking the vitamens B6, folic acid, etc. and I would caution about the niacin. On the other hand the B12 and Vitamen D would probably be recommended certainly if your levels are low. Were you taking copper sulfate IV or another form? You might be getting demyelination of the optic nerves due to the copper deficiency similar to what people with multiple sclerosis get? I just wish there was some way you could get the copper deficiency corrected but I understand that the neurological deficits might remain although the blood counts might improve some. Does the Metabolic MD not have any other suggestions? Good Luck tytd

[Chirley]

Thanks for all the info. The B12 tested low and that's why I'm on the injections. It's the third time I've had a course of B12 for deficiency. The Folic Acid and B6 is a bit more confusing. The haematologist said to take it, the Prof of Metabolic Medicine said not to take it, the GP said to take it and the Physician says it doesn't make any difference.

I've just had a phone call from my GP.....Hb 69, WCC 0.7, neuts 0.09, platelets 130 (something good at least). I guess it's another transfusion tomorrow.

Tytd, the optometrist said the appearance of the optic nerves was in keeping with previous optic neuritis and demyelination. I am not surprised, I knew that when I looked at someone and their head was missing that something was very wrong. I told her about the neuro disease I have (pretty obvious something is wrong when you turn up in a wheelchair) and she thinks its all connected but is leaving it to the specialist to investigate. I have been sent to the major eye facility in my State which is well regarded for its work and research....pity the waiting list is so long. On the plus side, it's located on the same campus as the hospital I go to.

Regards

Chirley

[esract]

Hi everyone,
I finally, after 15 minutes of seaching old files, found the info from a German study about niacin (also know as B3) raising neutrophils. Bear in mind that my disease, chronic lymphocytic leukemia, a very slow-growing disease, could be way different from yours; I don't know how you will react to it. Best to start slowly. I took a double dose in the AM, ditto the PM; you may want to start with a regular dose. GET THE NO-FLUSH NIACIN, otherwise you may have a reaction.........face flushing, etc.. It has always worked for me, when neuts were low, they then skyrocketed. I take the Solgar brand.
Here's the info:
"A team of researchers at Hannover Medical School in Germany recently
reported a major breakthrough in neutrophil development that may have
important clinical implications. Upon binding to its receptor on the
surface of myeloid progenitor cells, G-CSF turns on an enzyme that
converts intracellular vitamin B3 (nicotinamide) into an activate
metabolite (nicotinamide monocleotide). The researchers found that
this is the rate-limiting step in a signal transduction pathway that
triggers granulopoiesis.

Addition of vitamin B3 or its precursor induced granulocyte
differentiation of cultured hematopoietic stem cells. Administration
of high doses (10-20mg/kg/day) of vitamin B3 to six healthy
individuals resulted in significant increases in neutrophil count over
a 7 day period and a return to physiological cell counts when vitamin
B3 was withdrawn.

These findings identify a new role for vitamin B3 in granulopoiesis
and beg for clinical trials to evaluate the use of vitamin B3 either
alone or in combination with G-CSF for the treatment of neutropenia.

Source:
Skokowa J, Lan D, Thakur BK, et al. NAMPT is essential for the
G-CSF-induced myeloid differentiation via a NAD+-sirtuin-1-dependent
pathway. Nat Med. 2009;15(2):151-158."

This worked great for me, and one other person that I know about. Beware that it's anecdotal at this point and may not help you, but it's not harmful, either. If you try it, let me know your results.
Ellen

[Heather8773]

Ellen yes an enlarged spleen in a sign of hemolysis. You can have them do a LDH level test on your next blood draw.
PNH causes hemolysis , and is "normally" a secondary dx due to damage caused in the bone marrow ( in my husbands case AA caused the damage leading to pnh) you can find this out by a flow cetometry test during your next blood draw.
Hemoylisys normally can be measured by a LDH level. LDH is the amount of damage or break down of tissue being carried through your system. A high LDH won't mean you have PNH, as that's only determined through a flow test now.
Chirly your in my prayers. Your so supportive. Please try to keep the glass half full. I know it's hard. We struggle w that daily.
My husband has transfusions that last longer then others. Blood type, heat, sleep, stress, infection, donor, ect everything under the sun affect them. It's normal to only come up about 2 points after 3 units if ur already low and have other factors. I'll be praying that's the case for you

[Chirley]

Hi and thanks.

My physician gave me an ultimatum, copper or die. He said the transfusions had already stopped working. He told me to think about it over night and let him know my decision this morning. He said we would work out a regime that would minimise side effects.

I spoke with my family at length (again) and I decided that I would give the copper one more go. I rang my doctor and told him my decision. He didn't take long to organise everything and I'm booked in to have one more blood transfusion and copper tomorrow.

I assumed that I would be having a minimum dose of copper infrequently, just enough to prevent severe anaemia, but I was a bit distressed when he said that instead of having 5mgs/day each day for 5 days in a row every third week he might be able to stretch it out to every fourth week. I reminded him that I had a dose related sensitivity but he didn't comment.

I hope it's better this time around.

Regards

Chirley

[Sally C]

Dear Chirley,
I have read all your posts and continue to be amazed at your courage and straightforward attitude.
I wish you the best success with this treatment. Be strong as I know you will be.
God Bless,
Sally

[Marlene]

Chirley....sending positive thoughts your way. I truly hope this infusion goes smoothly for you. I know how tired you must be by now.

We'll be thinking of you....Marlene

[Cheryl C]

All the very best with the copper, Chirley! Hope it goes really well and makes a positive difference.

[Lbrown]

Good luck Chirley.

Deb

[SLB]

good luck Chirley!! hoping and praying it works for you and you can tolerate it.

[usaf1125]

Originally Posted by Chirley

When I was treated by the haematologist I had pre meds because I had lots of antibodies and had a rash and fever one time. Then I didn't need transfusions for a long time and then I was told they couldn't find the antibodies any more and this new physician doesn't order pre meds.

I wondered about the antibodies because its two different labs. The first lab had a list of 6 antibodies, this new lab says no antibodies. I don't know how that works though, something else to learn about when I'm not so tired.

Regards

Chirley

My Dr, won't give 3 units on the same day. 2 one day, 1 the next day. I get Lasix between the 1st and the 2nd. Don't need it with 1 unit. I get Pre meds before the blood. Benadryl, Tylenol,Hydro Cortisone.

[Chirley]

Last blood transfusion they found four antibodies including the anti K which I've had for a long time. It was the hospital lab who did the cross match instead of a private pathology company. Oddly enough my Hb rose a lot higher and lasted longer with the last transfusion.

My new doctor won't give 3 units in one day either. It's two units the first day and one the next and he listens to my heart and lungs after each unit.