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Misunderstanding the nature of the DMDs
Recently I have run into several posts here and on other forums that state that the Disease Modifying Drugs used in MS are dangerous. People have characterized them as immune-suppressants or poisons, and have stated that they may well be worse than any disease for which they might be taken. I have been meaning to write this to clarify these points, because people trying to decide on treating their MS may be misled by inaccurate descriptions of what the DMDs are and what they may do to the body.
The DMDs are considered to be the four firstline meds used in MS. These are Avonex, Betaseron, Rebif and Copaxone. The first three are Interferons. Avonex and Rebif are the form of interferon called Interferon-beta-1a and Betaseron is slightly different being Interferon-beta-1b.
Interferons are interesting substances that are crucial for the normal functioning of the human immune system. They are secreted by different members of the white blood cells, for instance, Interferon-beta is produced by cells that help repair tissue damage. Other types of Interferon are interferon-alpha and interferon gamma.
The purpose of interferons in the body is to protect the body against foreign proteins, mainly from infecting viruses, parasites and cancer cells. They are our first line of defense against most viral infections, and they play a role in the constant surveillance against new cancers. Throughout our lives we constantly start to form little cancers in our body that our immune system "sees" long before they become a problem. With the help of interferons and immune cells those little groups of "out-of-control" (malignant) cells are wiped out in extremely early stages and we never know about them.
Another example of the interferons action is seen when they fight viral infections. As the virus replicates, a great deal of interferon is produced to help the immune response. However, interferon has an effect in the body. This is the production of symptoms like muscle aches, headache and fever or, in other words, flu-like symptoms. It is the body's production of interferons that cause the symptoms in an infection with the flu-virus along with the effects of the infection itself. When someone has "flu-like" symptoms with the injection of one of the interferons they are feeling exactly what the chemical does naturally while fighting an infection, like the flu!
So, to say that the interferon meds are poison is completely wrong. We are using the interferons in higher amounts than the body normally makes to change the balance of how the immune system is working. When we say we don't know exactly how the meds work, it means that we don't know exactly what biochemical reactions are happening. We actually do know a lot about how the immune system is responding to the dose of the med.
I recently wandered over onto another forum and saw an entire thread discussing that the MS DMDs suppress the immune system. I have heard this over and over in the couple years that I have been reading about MS. This is not the case. The Interferons change the balance of what happens in the immune system, but in no way do they suppress it's overall function. People are confusing the DMDs with the meds used in cancer chemotherapy or in other autoimmune diseases.
In cancer chemotherapy many of the meds truly shut down the immune system, including the production of white cells and interferon. In this kind of immune suppression, the person is left exposed to invasion by serious infections or what should be minor infections can become major infections. The person can be left relatively defenseless. Not only that, but by suppressing the immune surveillance system, the person with a cancer can develop other kinds of cancer, called secondary cancers. Had the immune system been intact, those secondary cancers would likely have been wiped out as they began. We have all heard of people who have survived breast or colon cancer only to get another kind of cancer later. This is in large part due to the immune-suppressing proterties of the chemotherapy.
Now some of the drugs being used to treat other autoimmune diseases are also immune suppressants. Good examples are Humira, Embrel, Remicade, and others being used to treat severe Rheumatoid Arthritis and Psoriasis. When you listen to the ads for these drugs they all talk about the potential for serious, even fatal infections and potential for cancers like leukemia and lymphoma.
People seem to automatically assume that the DMDs for MS fall into that same category. They do not. They do not leave us at all defenseless and susceptible to more or for serious infections. They are not suppressing our immune system. There also have been no problems with secondary cancers. People on DMDs do not have more infections than normal.
On that other forum there was the argument that because of the small chance of "neutropenia" (low white blood cell count) that this proved that the DMDs supress the immune system. Neutropenia does occasionally occur as a side effect of the interferons, but it is also a potential side effect of a huge number of commonly used meds including most antibiotics.
So the points that you should carry away from this are:
-- The Interferon-betas are substances that are naturally produced by the body and that help us fight infections and cancer. In no way are they poisons in the body. We use them in higher doses to change the balance of the different parts of the immune system to block the attack on the nerves in the CNS.
-- The flu-like effects are the same flu-like effects we feel at the beginning of many viral infections like influenza or a bad cold.
-- The interferons-beta are not immune suppressants. They do not leave us at risk for serious infections or later cancers. They are not the same as the meds that are used in other autoimmune diseases and do not have or carry the same risks and warning as those other meds.
--The DMDs are not chemotherapy agents.
Copaxone is not an interferon. It acts in an entirely different way, but the same things are true. It has shown no evidence of "poisoning" any of the body. It does not suppress any part of the immune system and do not leave us at risk for more infections or secondary cancers.
I hope this clarifies some of the misconceptions that are tossed around regarding our meds.
We now have 18 years of experience using the interferon meds. There have been no "surpises," that is, there have been no new side effects or dangers to be aware of uncovered since these meds were approved.
Tysabri and Novantrone are not the firstline meds being used in MS. They are not considered Disease Modifying Drugs. They have a different type of action and have much more serious potential effects. There have been a number of serious brain infections on Tysabri and a few daths from it. Novantrone IS a chemotherapy agent, it is immune suppressing and it carries a definite risk of toxicity to the heart.
I hope this helps answer your questions and those of the people you talk to.
Quix
The DMDs are considered to be the four firstline meds used in MS. These are Avonex, Betaseron, Rebif and Copaxone. The first three are Interferons. Avonex and Rebif are the form of interferon called Interferon-beta-1a and Betaseron is slightly different being Interferon-beta-1b.
Interferons are interesting substances that are crucial for the normal functioning of the human immune system. They are secreted by different members of the white blood cells, for instance, Interferon-beta is produced by cells that help repair tissue damage. Other types of Interferon are interferon-alpha and interferon gamma.
The purpose of interferons in the body is to protect the body against foreign proteins, mainly from infecting viruses, parasites and cancer cells. They are our first line of defense against most viral infections, and they play a role in the constant surveillance against new cancers. Throughout our lives we constantly start to form little cancers in our body that our immune system "sees" long before they become a problem. With the help of interferons and immune cells those little groups of "out-of-control" (malignant) cells are wiped out in extremely early stages and we never know about them.
Another example of the interferons action is seen when they fight viral infections. As the virus replicates, a great deal of interferon is produced to help the immune response. However, interferon has an effect in the body. This is the production of symptoms like muscle aches, headache and fever or, in other words, flu-like symptoms. It is the body's production of interferons that cause the symptoms in an infection with the flu-virus along with the effects of the infection itself. When someone has "flu-like" symptoms with the injection of one of the interferons they are feeling exactly what the chemical does naturally while fighting an infection, like the flu!
So, to say that the interferon meds are poison is completely wrong. We are using the interferons in higher amounts than the body normally makes to change the balance of how the immune system is working. When we say we don't know exactly how the meds work, it means that we don't know exactly what biochemical reactions are happening. We actually do know a lot about how the immune system is responding to the dose of the med.
I recently wandered over onto another forum and saw an entire thread discussing that the MS DMDs suppress the immune system. I have heard this over and over in the couple years that I have been reading about MS. This is not the case. The Interferons change the balance of what happens in the immune system, but in no way do they suppress it's overall function. People are confusing the DMDs with the meds used in cancer chemotherapy or in other autoimmune diseases.
In cancer chemotherapy many of the meds truly shut down the immune system, including the production of white cells and interferon. In this kind of immune suppression, the person is left exposed to invasion by serious infections or what should be minor infections can become major infections. The person can be left relatively defenseless. Not only that, but by suppressing the immune surveillance system, the person with a cancer can develop other kinds of cancer, called secondary cancers. Had the immune system been intact, those secondary cancers would likely have been wiped out as they began. We have all heard of people who have survived breast or colon cancer only to get another kind of cancer later. This is in large part due to the immune-suppressing proterties of the chemotherapy.
Now some of the drugs being used to treat other autoimmune diseases are also immune suppressants. Good examples are Humira, Embrel, Remicade, and others being used to treat severe Rheumatoid Arthritis and Psoriasis. When you listen to the ads for these drugs they all talk about the potential for serious, even fatal infections and potential for cancers like leukemia and lymphoma.
People seem to automatically assume that the DMDs for MS fall into that same category. They do not. They do not leave us at all defenseless and susceptible to more or for serious infections. They are not suppressing our immune system. There also have been no problems with secondary cancers. People on DMDs do not have more infections than normal.
On that other forum there was the argument that because of the small chance of "neutropenia" (low white blood cell count) that this proved that the DMDs supress the immune system. Neutropenia does occasionally occur as a side effect of the interferons, but it is also a potential side effect of a huge number of commonly used meds including most antibiotics.
So the points that you should carry away from this are:
-- The Interferon-betas are substances that are naturally produced by the body and that help us fight infections and cancer. In no way are they poisons in the body. We use them in higher doses to change the balance of the different parts of the immune system to block the attack on the nerves in the CNS.
-- The flu-like effects are the same flu-like effects we feel at the beginning of many viral infections like influenza or a bad cold.
-- The interferons-beta are not immune suppressants. They do not leave us at risk for serious infections or later cancers. They are not the same as the meds that are used in other autoimmune diseases and do not have or carry the same risks and warning as those other meds.
--The DMDs are not chemotherapy agents.
Copaxone is not an interferon. It acts in an entirely different way, but the same things are true. It has shown no evidence of "poisoning" any of the body. It does not suppress any part of the immune system and do not leave us at risk for more infections or secondary cancers.
I hope this clarifies some of the misconceptions that are tossed around regarding our meds.
We now have 18 years of experience using the interferon meds. There have been no "surpises," that is, there have been no new side effects or dangers to be aware of uncovered since these meds were approved.
Tysabri and Novantrone are not the firstline meds being used in MS. They are not considered Disease Modifying Drugs. They have a different type of action and have much more serious potential effects. There have been a number of serious brain infections on Tysabri and a few daths from it. Novantrone IS a chemotherapy agent, it is immune suppressing and it carries a definite risk of toxicity to the heart.
I hope this helps answer your questions and those of the people you talk to.
Quix
Q,
As always, you have displayed your brilliance at communicating to us the basics that we all need to know. Thanks for putting the time and effort into this important piece on DMD's. I learned a lot by reading it............ Lu
As always, you have displayed your brilliance at communicating to us the basics that we all need to know. Thanks for putting the time and effort into this important piece on DMD's. I learned a lot by reading it............ Lu
hi i am new here can u help for the past 2 years i have tinglin spasms elecric shock feeling in my legs n arms i dont go out fear of losin balance ect neo said possible ms went for mri lumber p evoke test went back to neo he said test clear lession at right front side of brain now he cant tell what is wrong with me were do i go next
I'm really gald you liked it.
I need to add a little bit explaining why Interferons are called immunosupressants so often on the internet and in medicine.
For a long time the major form of interferon used in medicine was Interferon-alpha. It was and is used in very high doses to treat both Hepatitis C and maignant Melanoma. This med, used in these high doses does frequently cause neutropenia. As the white blood cell count falls a person cannot fight off serious infections. So severe neutropenia is a form of immunosupression.
As used in MS, interferon-beta occasionally causes low white blood cell counts (neutropenia) and less often, these can be quite low. So, there is a low risk (but still one) that white blood cell counts may drop. That is why they periodically monitor your blood tests, along with checking liver enzymes.
I didn't mean to say that there are no problems with the DMDs, only that people misunderstand what the problems are or can be and magnify their risks.
However, it is still true that people on the DMDs are not immunosuppressed and do not get more infections than the general population. For this matter, people with MS do not have weak immune systems - merely mixed up ones. People with MS do not have more infections either.
Quix
I need to add a little bit explaining why Interferons are called immunosupressants so often on the internet and in medicine.
For a long time the major form of interferon used in medicine was Interferon-alpha. It was and is used in very high doses to treat both Hepatitis C and maignant Melanoma. This med, used in these high doses does frequently cause neutropenia. As the white blood cell count falls a person cannot fight off serious infections. So severe neutropenia is a form of immunosupression.
As used in MS, interferon-beta occasionally causes low white blood cell counts (neutropenia) and less often, these can be quite low. So, there is a low risk (but still one) that white blood cell counts may drop. That is why they periodically monitor your blood tests, along with checking liver enzymes.
I didn't mean to say that there are no problems with the DMDs, only that people misunderstand what the problems are or can be and magnify their risks.
However, it is still true that people on the DMDs are not immunosuppressed and do not get more infections than the general population. For this matter, people with MS do not have weak immune systems - merely mixed up ones. People with MS do not have more infections either.
Quix
I'm glad you wrote this!
I've always referred to Copaxone as the rodeo clown - it's there to give the MS bull something to chase.
I've always referred to Copaxone as the rodeo clown - it's there to give the MS bull something to chase.
WOW!
Thank you so very much for this Quix. It's so easy to be led astray with mis-information.
I 2nd the HP on this!
-Shell
Thank you so very much for this Quix. It's so easy to be led astray with mis-information.
I 2nd the HP on this!
-Shell
Thank you for this. You would think that being on Betaseron I would have found all this out for myself but unfortunately I probably knew more misconceptions than facts!
Mand
Mand
I'm in the process of beginning Betaseron. When the sharps container arrived, I began questioning everything. Your post gives me some peace of mind! Thank you so much.
Sherry
Sherry
Please make this into a Health Page! I agree that this subject comes up all the time and the misinformation out there is huge.
ess
ess
Thank you so much for this. It's very informative. Again, I have some thinking to do!
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