Good morning;
I used to donate blood frequently, but was informed that my blood will no longer be accepted. Out of interest, why can you not donate blood if you have MGUS?
Forums
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Aussie - Name: Assue
- Who do you know with myeloma?: Nil
- When were you/they diagnosed?: 2015
- Age at diagnosis: 37
Re: Why can't I donate blood now that I have MGUS?
Nobody with a blood cancer or blood pre-cancer can donate blood. Those cancers and pre-cancerous stages include MGUS, smoldering multiple myeloma, multiple myeloma, lymphoma, leukemia, etc. You can argue whether MGUS or smoldering multiple myeloma is a "cancer" or not, but the issue remains there is a theoretical chance that a malignant cell in the blood of an MGUS or smoldering multiple myeloma patient may pass on that same malignancy to the recipient (especially if the recipient also has a compromised immune system). At least that's the way it was explained to me by my onc. You may also find this article to be of interest:
La Raja, M., et al, "Incidental finding of monoclonal gammopathy in blood donors: a follow-up study," Blood Transfusion, 2012 (full text of article)
If you feel passionate about donating your blood, you may want to consider donating your blood to research. Your onc may be able to point you to some worthy research projects.
La Raja, M., et al, "Incidental finding of monoclonal gammopathy in blood donors: a follow-up study," Blood Transfusion, 2012 (full text of article)
If you feel passionate about donating your blood, you may want to consider donating your blood to research. Your onc may be able to point you to some worthy research projects.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Why can't I donate blood now that I have MGUS?
Thank you as always.
Sometimes is just so difficult to stay positive. Just as you make peace with MGUS, there is something or someone that reminds you that you are now "abnormal".
Sorry, but I guess I get sensitive around the time when I need to do my 6-monthly tests ...
Sometimes is just so difficult to stay positive. Just as you make peace with MGUS, there is something or someone that reminds you that you are now "abnormal".
Sorry, but I guess I get sensitive around the time when I need to do my 6-monthly tests ...
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Aussie - Name: Assue
- Who do you know with myeloma?: Nil
- When were you/they diagnosed?: 2015
- Age at diagnosis: 37
Re: Why can't I donate blood now that I have MGUS?
Aussie,
I can understand feeling sensitive near testing times! I feel the same way. And I share your sense of "frustration" when this MGUS business tells us in one breath that we are fine, yet our bodies are telling us we are a little less than fine. Hang in there!
Susie
I can understand feeling sensitive near testing times! I feel the same way. And I share your sense of "frustration" when this MGUS business tells us in one breath that we are fine, yet our bodies are telling us we are a little less than fine. Hang in there!
Susie
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sgridley - Who do you know with myeloma?: Me
- When were you/they diagnosed?: MGUS 2005, Smoldering 2018
- Age at diagnosis: 41
Re: Why can't I donate blood now that I have MGUS?
Some years ago I started suffering the symptoms of peripheral neuropathy, which I've researched in relation to my recently diagnosed condition of MGUS. I was told by a senior, not junior haematologist, that I had MGUS. I asked this person if it affected me donating blood. He said that he didn't know, which I now find hard to believe considering that he is a blood specialist.
When I told my GP some years ago about my symptoms regarding peripheral neuropathy, he just brushed it away and in recent visits to specialists they seemed more intent on putting all their efforts into denying that I was suffering from the condition.
I have for several years lived with the effects of peripheral neuropathy, but what I do find shocking and very disturbing is that I've been donating blood for several years when obviously I shouldn't have been. I had recently been asked to become a plasma donor due to me being 'O' negative. On a preassessment visit to my local hospital due to me soon undergoing open surgery. the nurse asked me about any current medical conditions. The nurse had never heard of MGUS. She made a phone call to enquire about MGUS and received the same answer. This is a major hospital, not some village clinic.
When I told my GP some years ago about my symptoms regarding peripheral neuropathy, he just brushed it away and in recent visits to specialists they seemed more intent on putting all their efforts into denying that I was suffering from the condition.
I have for several years lived with the effects of peripheral neuropathy, but what I do find shocking and very disturbing is that I've been donating blood for several years when obviously I shouldn't have been. I had recently been asked to become a plasma donor due to me being 'O' negative. On a preassessment visit to my local hospital due to me soon undergoing open surgery. the nurse asked me about any current medical conditions. The nurse had never heard of MGUS. She made a phone call to enquire about MGUS and received the same answer. This is a major hospital, not some village clinic.
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Bassman62
Re: Why can't I donate blood now that I have MGUS?
Hi,
At least in Austria (where I come from) you are excluded as blood donor when you where tested positive for HIV, hepatitis, or syphilis, even if the result has been proven as false positives with polymerase chain reaction (PCR) testing.
False positive lab results in this case exclude you for your whole life from blood donation. It is like a stigma.
And in this situation just your blood test was abnormal, but you are always remembered on this. So, think about that MGUS is just an abnormal lab finding. It is not false positive, but MGUS does not mean you are sick.
All of us live with some time bomb in our bodies, most of us do not know. When you make a complete genetic sequencing and you know all your risks, do you really want to know them all?
I understand your concern. Here in Austria, when you live in countryside, it is really a problem, if you are excluded from blood donation. The Red Cross is coming with a donation bus and all persons, at least all males from the village, are donating. And everybody is looking at you, when you are not allowed. It has something of discrimination.
Try to keep calm, even sometimes this is not so easy as to write it.
Best greetings,
Johannes
At least in Austria (where I come from) you are excluded as blood donor when you where tested positive for HIV, hepatitis, or syphilis, even if the result has been proven as false positives with polymerase chain reaction (PCR) testing.
False positive lab results in this case exclude you for your whole life from blood donation. It is like a stigma.
And in this situation just your blood test was abnormal, but you are always remembered on this. So, think about that MGUS is just an abnormal lab finding. It is not false positive, but MGUS does not mean you are sick.
All of us live with some time bomb in our bodies, most of us do not know. When you make a complete genetic sequencing and you know all your risks, do you really want to know them all?
I understand your concern. Here in Austria, when you live in countryside, it is really a problem, if you are excluded from blood donation. The Red Cross is coming with a donation bus and all persons, at least all males from the village, are donating. And everybody is looking at you, when you are not allowed. It has something of discrimination.
Try to keep calm, even sometimes this is not so easy as to write it.
Best greetings,
Johannes
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Johannes56 - When were you/they diagnosed?: December 2016
- Age at diagnosis: 60
Re: Why can't I donate blood now that I have MGUS?
I was found to have something going on with my blood when I tried to donate at a local blood drive in spring 2014. I had donated platelets and received a call from the blood bank several days later saying that my platelets were borderline low and they couldn't use them.
I then received a call from a doctor at the blood bank who wanted to know why I had donated. I explained that I hadn't done so in about 6 years or so and thought it would be a good thing to do. He said that my red cells were agglutinating and there was a possible problem with cold agglutination and that I could no longer donate. He sent me a letter which I took to my primary. My primary said that he doubted that this was very significant but referred me to a hematologist just to be safe.
Within a week I had been diagnosed with MGUS, autoimmune hemolytic anemia, and immune thrombocytopenia with a note about the findings of the blood bank concerning cold agglutination. It was determined this past year that I test negative for cold agglutination.
The upshot to all this is that I've had cold urticaria for nearly 20 years and my red cells and platelets have run borderline low since 2011. My primary has tested me along the way for ferritin, iron stores, B-12 levels, but all tests were normal. Since that time, my reds, platelets, and whites have slowly trended down. The big question that rolls over and over in my mind is when did I first have an M-spike? Since I started cold reaction? Or, which came first?
I feel that I'm driving down this highway and steering by looking into my rear-view mirrors.
I then received a call from a doctor at the blood bank who wanted to know why I had donated. I explained that I hadn't done so in about 6 years or so and thought it would be a good thing to do. He said that my red cells were agglutinating and there was a possible problem with cold agglutination and that I could no longer donate. He sent me a letter which I took to my primary. My primary said that he doubted that this was very significant but referred me to a hematologist just to be safe.
Within a week I had been diagnosed with MGUS, autoimmune hemolytic anemia, and immune thrombocytopenia with a note about the findings of the blood bank concerning cold agglutination. It was determined this past year that I test negative for cold agglutination.
The upshot to all this is that I've had cold urticaria for nearly 20 years and my red cells and platelets have run borderline low since 2011. My primary has tested me along the way for ferritin, iron stores, B-12 levels, but all tests were normal. Since that time, my reds, platelets, and whites have slowly trended down. The big question that rolls over and over in my mind is when did I first have an M-spike? Since I started cold reaction? Or, which came first?
I feel that I'm driving down this highway and steering by looking into my rear-view mirrors.
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Jer610 - Name: Jerry
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 5/2014
- Age at diagnosis: 66
Re: Why can't I donate blood now that I have MGUS?
Dear Jer,
Even if it is said that MGUS per se is not a disease, I think most people with MGUS are not diagnosed by accident, but because of some problems with their immune system. and doctors looked at Immunoglobulins.
Even, if you had a cold urticaria (I guess without fever?), it is well known that urticaria has a coincidence with MGUS. It was described as Schnitzler syndrome, where chronic urticaria goes with MGUS. The primary problem is an overreaction of IL1. If this is diagnosed, there is possibility to treat with an IL1 antagonist Kineret (anakinra).
What is first is like the question of chicken or egg. In my case, definitively first was Borreliosis. At this stage two years after, my immunoglobulins have been normal. Two years ago I felt sick, tired, two times in one year with flu, then I was diagnosed with MGUS.
So I personally think, first is something, that the immune system is challenged, then MGUS follows.
You have to take care on your immune system. Good luck,
Johannes
Even if it is said that MGUS per se is not a disease, I think most people with MGUS are not diagnosed by accident, but because of some problems with their immune system. and doctors looked at Immunoglobulins.
Even, if you had a cold urticaria (I guess without fever?), it is well known that urticaria has a coincidence with MGUS. It was described as Schnitzler syndrome, where chronic urticaria goes with MGUS. The primary problem is an overreaction of IL1. If this is diagnosed, there is possibility to treat with an IL1 antagonist Kineret (anakinra).
What is first is like the question of chicken or egg. In my case, definitively first was Borreliosis. At this stage two years after, my immunoglobulins have been normal. Two years ago I felt sick, tired, two times in one year with flu, then I was diagnosed with MGUS.
So I personally think, first is something, that the immune system is challenged, then MGUS follows.
You have to take care on your immune system. Good luck,
Johannes
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Johannes56 - When were you/they diagnosed?: December 2016
- Age at diagnosis: 60
Re: Why can't I donate blood now that I have MGUS?
Hello Johannes,
I you bring up some interesting points. It sounds right that immune dysfunction is the genesis of MGUS. Reading up on Schnitzler syndrome, it is said to be predominately IgM kappa associated with raised WBC, ESR, and C-reactive protein. My WBC are low and the two tests are normal as of last spring. I am IgG lambda and all of my immunoglobulins are suppressed when you exclude my M-spike. When you add in AIHA you bring in a possibility of common variable immune disease and the possibility of familial cold urticaria, or PLAID.
As far as maintaining a strong immune system, I am rarely sick and if I catch a cold it is brief. I guess you could say that I am hyper-reactive. I can tell when I'm fighting something because I'll feel a bit sore and sluggish and my osteoarthritis really starts acting up.
Sometimes I just shake my head and laugh. Anyway, thanks for your response, Johannes. It's always good to talk to a fellow MGUS.
I you bring up some interesting points. It sounds right that immune dysfunction is the genesis of MGUS. Reading up on Schnitzler syndrome, it is said to be predominately IgM kappa associated with raised WBC, ESR, and C-reactive protein. My WBC are low and the two tests are normal as of last spring. I am IgG lambda and all of my immunoglobulins are suppressed when you exclude my M-spike. When you add in AIHA you bring in a possibility of common variable immune disease and the possibility of familial cold urticaria, or PLAID.
As far as maintaining a strong immune system, I am rarely sick and if I catch a cold it is brief. I guess you could say that I am hyper-reactive. I can tell when I'm fighting something because I'll feel a bit sore and sluggish and my osteoarthritis really starts acting up.
Sometimes I just shake my head and laugh. Anyway, thanks for your response, Johannes. It's always good to talk to a fellow MGUS.
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Jer610 - Name: Jerry
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 5/2014
- Age at diagnosis: 66
Re: Why can't I donate blood now that I have MGUS?
Hi,
It is interesting to read how many differnent faces MGUS shows. Some report about weak immune system, some like you about overreacting strong immune response. I feel that my immune system is not so strong and I wonder, without IgM and very low IgG due to two monoclonal peaks in IgA, how can it function anyway?
I do not know too much about MGUS and have been diagnosed recently. Of course, I know that our immune defense system is not only functioning with specific antibodies, but also with our ancient complement system that is part of our reptile history or so (maybe even older?)
Do monoclonal immunglobulins have normal function? I do not know.
Maybe my feeling of being sick isn't primarily caused by MGUS but by my chronic Lyme, which is said to be root cause of my MGUS.
In my personal feeling, persons with MGUS do have some disease and it is not only an abnormal lab finding. And, MGUS is something that occurs during a life and never will disappear again. So, it is something abnormal and we have to live with that unclear situation and prognosis of progression.
Anyway, more people than we think suffer from chronic diseases like allergy, food incompatibility, rheumatic diseases, cancer, pain, mental disorders, just to name some of them. We have to arrange and live with that.
Best wishes for the upcoming New Year,
Johannes
It is interesting to read how many differnent faces MGUS shows. Some report about weak immune system, some like you about overreacting strong immune response. I feel that my immune system is not so strong and I wonder, without IgM and very low IgG due to two monoclonal peaks in IgA, how can it function anyway?
I do not know too much about MGUS and have been diagnosed recently. Of course, I know that our immune defense system is not only functioning with specific antibodies, but also with our ancient complement system that is part of our reptile history or so (maybe even older?)
Do monoclonal immunglobulins have normal function? I do not know.
Maybe my feeling of being sick isn't primarily caused by MGUS but by my chronic Lyme, which is said to be root cause of my MGUS.
In my personal feeling, persons with MGUS do have some disease and it is not only an abnormal lab finding. And, MGUS is something that occurs during a life and never will disappear again. So, it is something abnormal and we have to live with that unclear situation and prognosis of progression.
Anyway, more people than we think suffer from chronic diseases like allergy, food incompatibility, rheumatic diseases, cancer, pain, mental disorders, just to name some of them. We have to arrange and live with that.
Best wishes for the upcoming New Year,
Johannes
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Johannes56 - When were you/they diagnosed?: December 2016
- Age at diagnosis: 60
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