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Transfusions and Iron Overload Blood and platelet transfusions, iron testing and treatments

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  #1  
Old Thu Jun 27, 2013, 08:10 AM
Chirley Chirley is offline
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Post transfusion Hb check

Hi, I had a 3 unit blood transfusion today. The lab didn't do a Hb with the cross match so I don't know what my pre transfusion level was.

One hour after the end of my last unit of blood the Hb level showed 85. I know I felt bad before the transfusion but I don't think my Hb would have been in the 50s.

How long does it take to get an accurate Hb level post transfusion? Should it show an immediate increase? The result also said I had NRBCs, burr cells, stomatocytes and elongated cells. Could this be a sign of haemolysis?

I'm a bit disappointed (worried) about the speed and severity of my transfusion dependence. The Nurse Manager mentioned having another transfusion next week. I really don't want weekly transfusions. My liver is already unhappy.

Regards

Chirley
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  #2  
Old Thu Jun 27, 2013, 11:17 AM
Marlene Marlene is offline
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Three units is lot of fluids especially when you add the saline drip. Stands to reason that until your body removes the excess fluids, your CBC would be diluted and show a lower HGB number.

Celery and/or watermelon can help you move that fluid out.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #3  
Old Thu Jun 27, 2013, 12:18 PM
Lbrown Lbrown is offline
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That's a good question, I have wondered that too.

When I get red cells, the only saline added is right at the end to flush the line. I am pretty sure by the end of the day I've already gotten rid of excess fluids, but I've never had a test right after a transfusion.

Deb
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  #4  
Old Thu Jun 27, 2013, 03:48 PM
Chirley Chirley is offline
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Haemodilution crossed my mind too but I didn't get any saline. When the blood ran out they simply flushed my port with a 10 ml syringe, heparin locked it and removed the needle because the blood had run out and the line was full of air. The line was not flushed with saline between blood units. My doctor is very cautious and is very on the ball about having too much fluid. He even comes and listens to my heart and lungs after each unit of blood. (Threatens Lasix ).

The woman from pathology came about an hour later and took the blood test from my arm. The Hb taken half an hour after my previous transfusion of 3 units was 104 (pre Hb was 75) and my line was flushed with saline that time.

I was just wondering if this is what people mean when they say that "transfusions don't work any more". Maybe some donated blood just doesn't "take".

Also it's almost 18 hours since my transfusion finished and I'm having trouble breathing. My chest feels tight and I'm wheezing. I don't get asthma and this hasn't happened before. I will ring the doctor when he starts work (it's 5.40 am here) and let him know. It's not bad, just uncomfortable.

I suppose I can ask him about the post transfusion Hb at the same time. Maybe it can take a day or so to rise sometimes.

Regards

Chirley
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  #5  
Old Thu Jun 27, 2013, 04:47 PM
Marlene Marlene is offline
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That's a good idea to contact them. It could be an allergic reaction to one of the units. Do you get pre-meds for red cells? John would have to take an antihistamine for all blood products. He got hives from red cells once and from then on, they wanted him to be pre-medicated for them. I don't think he reacted to all red cell transfusions but since they couldn't predict which ones would cause a reaction, they wanted him pre-medicated all the time.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #6  
Old Thu Jun 27, 2013, 04:55 PM
Chirley Chirley is offline
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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
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  #7  
Old Thu Jun 27, 2013, 08:24 PM
tytd tytd is offline
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Hb

Hi Chirley,
It sounds like you might need some Lasix if you are having trouble breathing after 3 units of blood which is a lot of fluid all at once. I think it takes more than an hour for the vascular system to equilibrate and give you a more accurate Hb reading. You may have indicated this in your other posts but what does your hematologist think is causing your recent need for transfusions? Is it because of the copper level or some other reason? Good luck tytd
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  #8  
Old Thu Jun 27, 2013, 10:14 PM
Chirley Chirley is offline
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Hi, I stopped having copper treatments because I became sensitised (requiring Dexamethasone, Hydrocortisone, Phenergan etc) to them and I was requiring more and more just to maintain the same blood level.

I received a phone call from the doctor 15 minutes ago and he said the Hb level would be an accurate reading because it should be measurable within half an hour of the transfusion. I have to have another blood test on Monday and depending on the result, perhaps another transfusion. My neuts were 0.17, platelets 110 (good).

I guess the question I was trying to ask was.....how/why do blood transfusions stop working? I have read other posts where people have stopped having transfusions because they "stopped working".

My doctor said we have some important things to discuss and I want to be prepared.

My dog and cats are demanding some attention, better go.

Regards

Chirley
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  #9  
Old Fri Jun 28, 2013, 06:28 AM
Marlene Marlene is offline
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Red cells never stopped working for John and he's had over 170 units. Platelets are another matter. Some worked better than others and some, not at all.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #10  
Old Fri Jun 28, 2013, 12:22 PM
Lbrown Lbrown is offline
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Chirley, do you know how much volume of red cells you actually got? I find where I go, a "unit" can mean anything from 200 mls to almost 400 mls.

I always estimate how much my HGB should be after a transfusion based on the volume of red cells I get and what my actual count was. Then I keep track of how much it drops.

Deb
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  #11  
Old Fri Jun 28, 2013, 12:40 PM
Birgitta-A Birgitta-A is offline
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Transfusions

Hi Chirley,
You know I got 142 units of PRBC from dx 2006 until Sept 2010 when Thalidomide + Prednisone kicked in after 3 months. My HGB slowly increased to 13.7 and then slowly decreased.

Feb 2013 I had to get txs again because my HGB was 8.8. I got delayed hemolysis and my HGB was 7.5 after 2 weeks. Thalidomide is increased from 4 x 50 mg/week to 50 mg/day. Thalidomide decreases my WBC and I have to take an injection Zarzio (like Neupogen) every week.

My platelets are very good - about 180 . My HGB is better but I still have hemolysis and have to get blood almost every week - today I got unit nr 165 and 166. I am genotyped and always get very well matched blood less than 14 days old. I always receive Solucortef (cortisone) before transfusions - I have had a lot of irregular antibodies since dx.

I try to follow my HGB by controlling my heart rate - if it is less than 70 I am OK and if is more than 85 I need blood. The heart never feels the new blood the same day - it will take at least 24 hours.

I have never read that antibodies can disappear - are you sure that the lab really can test your blood?
Kind regards
Birgitta-A
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  #12  
Old Fri Jun 28, 2013, 07:03 PM
Chirley Chirley is offline
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Hi and thanks for your replies.

Marlene I too have had lots of blood transfusions in the past and some lasted longer than others. Sometimes the units were a little old, but generally they boosted my Hb for a while.

I used to get pre meded with Hydrocortisone and Phenergan or Claratyne and the blood was leukocyte depleted and irradiated and CMV negative (in case I needed a BMT).

This new doctor won't order pre meds because the lab says I have no antibodies (I know I had at least 6) and I haven't had a reaction since he has been my doctor.

The last transfusion was 3 units, the volume was 264mls, 268mls and 277mls. They all had long expiry dates. They are leukocyte depleted but no longer irradiated or CMV negative.

If the doctor is right and I need another 3 units next week, that will make 9 units in 4 weeks. I'm not on any iron chelation and my liver has already got moderate iron overload (according to biopsy) and has hepatitis as a result.

Birgitta, I'm sorry to hear that you are needing transfusions again. Thalidomide worked well for you for quite a long time. It's interesting that you use your heart rate to monitor your counts. I can't do that because I'm on Propanolol for arrythmia and it causes a slow heart beat. I monitor my count by how breathless and dizzy I get.

May I ask..........how do you know if the transfused blood is being haemolysed? When this happens is this what people mean when they say "transfusions stopped working"? Is haemolysis more likely to happen if the lab doesn't cross match properly? (In my case not detecting antibodies). Is it better to have fewer units of blood more often or more units less often or doesn't it matter?

I wish I'd kept count of how many units of blood I've had but when I first started I thought each transfusion would be my last and that I'd get well so I didn't keep records. After that I couldn't see the point. It must be easily 200 or more units (or maybe it just seems like it ).

It must be raining. A wet cat with muddy feet just jumped on my lap. Oh well, I love her anyway.

Regards

Chirley
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  #13  
Old Sat Jun 29, 2013, 06:15 AM
Birgitta-A Birgitta-A is offline
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Txs

Hi Chirley,
Thalidomide has really had very positive effects on my counts - the median time for response is 9 months and I am still responding after 38 months though I need a higher dose.

When my HGB decreased after a tx Feb 2013 they took a lot of blood tests but since I have very severe myelofibrosis (since dx) it is difficult to be sure of why the the HGB decreased.

Then all blood-units has been very well matched and fresh but I don't think that has made much difference. I have had autohemolysis since dx but the autoimmune symptoms has increased much during the tsx free interval. Most drugs for that like Cellcept or Mabthera can give dangerous adverse effects like opportunistic infections on the brain.

There are probably many reasons for blood txs to stop working and hemolysis is one of them - you know my bone marrow is still making red blood cells but more damaged bone marrow can perhaps not make any red blood cells at all.

Of cause it is VERY important to cross match the blood properly.

I don't like 3 units of blood because my dose of the iron chelator Desferal is the same in connection with all txs - 3 units mean less Desferal for every unit of blood.

For you who don't get any iron chelator - I think all iron chelators can take other metals like copper too - I don't think it matters if you get fewer units blood often or more blood less often.

Hope we both will manage as long as possible with our symptoms!
Kind regards
Birgitta-A
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  #14  
Old Sat Jun 29, 2013, 10:29 AM
Marlene Marlene is offline
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Hi Chirley,

The leucocyte reduced/filter blood product should also filter out any CMV. CMV negative blood is hard to come by. But still, if you are CMV neg, I think they should try to find it for you. John is CMV neg and his orders were for CMV neg but not all of his red cells were. They were reduced/filtered though.

Here's a link that lists 'rare' side effects from transfusions. Two are lung related and the suspected cause is either from too much fluid for the body to handle or antibody related.

http://www.cdc.gov/bloodsafety/basics.html

Three units is a lot of fluid. How fast did they infuse you? You must have been there all day. You may need them to slow the rate down even further.

John never found claratyne to be very effective. He used Atarax as a premed because benadryl didn't agree with him. Both make you sleepy. He only got steroids once during a platelet transfusion. They ran them in too fast and he turned into one big hive.

Whenever John had a bad reaction to a blood product, they would re-check the blood to see if there was a problem of some sort.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #15  
Old Sat Jun 29, 2013, 08:22 PM
Chirley Chirley is offline
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Thank you both for your replies.

This new doctor admits me to hospital for my transfusions because he doesn't have daycare visiting rights. I have each unit run very slowly over three hours. I have two units one day and the last unit the next morning (I told you he is very cautious). Then I wait an hour and have a post transfusion Hb test. He doesn't like the saline run between units and my port is disconnected overnight.

I'm hoping there has been some mix up with the blood test because a Hb of 85 after 3 units of blood is a worry.

I'm having another check tomorrow but I can already tell that I am having anaemia symptoms. Headache, breathless etc.

Birgitta, I understand now. You have haemolysis of your own blood, not of the donated blood. Do they think the autoimmune problem causing the haemolysis also caused the myelofibrosis?

I know I have had a positive ANA (lowish titre) and atypical pANCA but I'm not sure what these abnormal tests mean.

On a positive note....the hospital has introduced room service. Now you can order anything from the menu any time of day and have it delivered. There are no set meal times. The kitchen makes anything from pizzas to roast dinners. They serve breakfast of bacon, eggs etc all day if you want. It's really nice to order a cup of tea when you want one rather than when it's tea round time. A cup of tea makes everything better.

Regards

Chirley
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  #16  
Old Sun Jun 30, 2013, 05:14 AM
Birgitta-A Birgitta-A is offline
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Hemolysis

Hi Chirley,
Very nice with room service - we don't have that but I always bring something to eat and drink during the tx.

I think I have hemolysis of both my own blood and of the donated blood.

Autoimmune diseases are common in MDS patients. Ten to 20 % have autoimmune diseases like lupus, autoantibodies and hemolytic anemia. The autoimmunity is believed to be triggered by increased programmed cell death in the dysplastic bone marrow.

I don't know if autoimmunity can cause bone marrow fibrosis - that symptom is not mentioned in any article I have read though they list a lot of autoimmune diseases.

They don't write that the increased programmed cell death in the bone marrow will lead to fibrosis but I think that it can be one explanation for the fibrosis.

Hope your HGB will hold so you don't need txs so often!
Kind regards
Birgitta-A
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  #17  
Old Sun Jun 30, 2013, 10:24 AM
evansmom evansmom is offline
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May I ask..........how do you know if the transfused blood is being haemolysed? When this happens is this what people mean when they say "transfusions stopped working"? Is haemolysis more likely to happen if the lab doesn't cross match properly? (In my case not detecting antibodies). Is it better to have fewer units of blood more often or more units less often or doesn't it matter?

Chirley,

Evan experienced massive hemolysis post BMT as a result of a side effect to his tacrolimus. No matter the cause, you will know you're hemolyzing because your urine will go from a normal pale yellow, to a darker, iced-tea colour. You can ask to have an LDH and haptoglobin level done. If you're hemolyzing, your LDH will be high and haptoglobin low or nil. Also, on a smear, the lab will report the presence of schistocytes, aka bitten cells, helmet cells (damaged red cells).
Hope this helps.

Take care.
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www.caringbridge.org/visit/evanmacneil
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  #18  
Old Mon Jul 1, 2013, 12:08 AM
Chirley Chirley is offline
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Hi, I have some answers.

I saw my GP today. He said I have no reticulocytes and that I am not producing my own blood (red cells) and am wholly dependant on transfusions. This is why my post transfusion Hb was so low.

He said that I'm dying and probably don't have much longer to live unless I have copper infusions and try to tolerate the side effects. He said I need to discuss my condition with my family and make a decision soon.

I know logically that I am sick but the dying thing feels like its not real and it's happening to someone else.

I dread raising the subject with my family, it all seems too hard to discuss. I've had theoretical talks in the past but those talks just left me confused about how my family felt. On the one hand they think its everyone's right to choose for themselves but on the other hand they get upset if they think there is a treatment option that I don't try.

As for myself, I don't want to die but I don't want copper infusions........tough luck for me, suck it up and do what I need to do. It's a hard decision but at least I have a choice, that's more than a lot of other people have.

Now I know I have a GP who is totally frank and honest. That's refreshing.

Regards

Chirley
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  #19  
Old Mon Jul 1, 2013, 05:43 AM
Birgitta-A Birgitta-A is offline
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Copper

Hi Chirley,
To decide if we should accept a treatment with severe adverse effects or live shorter with better quality of life is difficult. I told my doctor initially that I prefer a shorter life and won't accept treatment that will lead to severe nausea, tiredness and so on. I was 67 yo at that time and felt that I have lived a good life.

You are much younger and that will make a difference.

It is really you who should make the decision - your family don't know how the copper infusions are affecting you and want you to live as long as possible.

Good with a GP who is telling you the truth about your disease!
Kind regards
Birgitta-A
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  #20  
Old Mon Jul 1, 2013, 10:32 AM
Marlene Marlene is offline
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Do you have to use the copper sulphate or are there other types you can try like copper histadine or copper chloride. I guess the question is....is it the copper or the adjuncts in the solution causing the reaction.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #21  
Old Mon Jul 1, 2013, 12:19 PM
tytd tytd is offline
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copper deficiency

Hello Chirley,
I am sorry to hear what your GP had to say. I know that you have seen an expert Metabolic MD in Australia but I happened to run across an old report about copper deficiency and bone marrow failure. It was published in 2008 and co-authored by Dr. Jaroslaw Maciejewski at the Cleveland Clinic. Since your condition is so rare, you might consider e-mailing him for any advice about the copper supplementation. I think Marlene has a very good point - could you be allergic to one of the additives in the copper infusion or might you tolerate another chemical form of copper? I know that you said in your previous posts that oral copper did not work but perhaps you could try another form again just to see. Also is your Zinc level OK? I think Dr. Maciejewski's email is on the Cleveland Clinic website. It can't hurt to try but I understand how tired you must be of all this. Best Regards tytd
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Old Fri Jul 5, 2013, 11:07 AM
esract esract is offline
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transfusions; how long does it take to raise Hg?

I am also transfusion dependent, for 2 1/2 years now, due to chronic lymphocytic leukemia. Be aware that it takes at least 3 days for transfusions to raise hemoglobin, due to a protein (?) called 2,3 DPG. The RBCs need to release their oxygen, and it takes a while. An explanation of why this is so is on the late Dr. Terry Hamblin's blog, which is mutated-unmuated.blogspot.com
Just search for 2,3 DPG and you'll get the story behind why this is so. I don't understand the reasoning behind doing a CBC before your body has a chance to assimilate the new RBCs. Dr. Hamblin was a world-famous oncologist who specialized in CLL.
Also, does anyone know whether a greatly enlarged spleen such as I have will hemolyze the RBCs that the body gets in transfusions? They don't seem to be helping me much anymore.
Thanks,
Ellen
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Ellen, age 68; dx. 5/00 with chronic lymphocytic leukemia. Transfusion dependent since 1/11. Now have low platelets of 25, and, very reluctantly will start on Exjade due to SF of 1700. Worried about side effects, because of warnings from Novartis.

Last edited by esract : Fri Jul 5, 2013 at 11:10 AM. Reason: My bio has changed. I'm now 69, and never took Exjade
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  #23  
Old Fri Jul 5, 2013, 09:13 PM
Chirley Chirley is offline
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Hi and thanks for the replies.

Ellen, I will most certainly look up that protein.

I have spoken with my specialist and told him that my GP says that I'm dying. He agreed and said that he was grateful the GP had raised the subject because someone needed to.

There are a number of risk factors which I think are shared by every one on this forum.

Firstly, infection due to neutropenia (already aware). Secondly, requiring more blood, more often with less effect (why does this happen ?). Thirdly, multi organ failure from iron overload and chronic anaemia (already aware). Fourthly, aggressive return of MDS and quick conversion to AML (apparently he has discussed this possibility with colleagues). At this stage my platelets are ok and slowly dropping but are, hopefully, not going to be a factor.

I had a repeat Hb 4 days post transfusion and it was still the same at 85. I'm grateful it didn't drop. I have another blood test scheduled for Monday and I'm very impatient to find out if I have maintained a reasonable Hb.

I have developed very bad eyesight and can hardly see to type on this iPad. I have increased the font as large as I can. I can no longer read books (my favourite hobby) and although I can see the TV it's very blurry. I mentioned it to the GP and he said that chronic illness, tiredness and anaemia can cause this. Has any one else got this problem? I was concerned that the nerves to my eyes were being effected by my neuro condition. I have an eye test scheduled for Monday but my spectacle prescription was only renewed about 7 months ago. Here's hoping its just age related.

Regards

Chirley
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  #24  
Old Fri Jul 5, 2013, 10:56 PM
slip up 2 slip up 2 is offline
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Chirley

Your library has a Disability Dept. with audio books.

When my husband was dying, there were a few infections....his lungs filled with fluid and his heart failed.... he was never afraid of death....he always had a smile or a kiss for me...i truly believe when one is ready something takes over and one is at peace....i remember my Grannie telling me one day i am tired i am ready, i was in my 30's at the time, she must have told me for a reason, she taught me so many things, that was one of the best lessons of life for me.... of course we always wait for a magic cure and because of everyone here there will be....

On to the audio books, i would fly down & collect them for you, it is just around the corner eh.....

kate
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Old Sun Jul 7, 2013, 02:14 PM
esract esract is offline
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Wink raising neutrophils

Hi Chirley,
Do you live outside the U.S.? I ask because the hemoglobin numbers don't correlate with the numbers I'm used to, like currently, my HgB is 6.5. I will get another transfusion in 2 days, but sadly, they don't seem to work very well anymore. About the neuts............I raised mine on several occasions by taking no-flush niacin, a B vitamin. There's a medical paper from a doctor in Germany that explained how this works. 2 weeks ago, my neuts were 0, now they're 222,000. Make sure you get the NO-FLUSH niacin so you don't get any reactions, like flushing. I take double the recommended dose. If you want the paper from Germany, I'll try to find it.
Ellen
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Ellen, age 68; dx. 5/00 with chronic lymphocytic leukemia. Transfusion dependent since 1/11. Now have low platelets of 25, and, very reluctantly will start on Exjade due to SF of 1700. Worried about side effects, because of warnings from Novartis.
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