Looking for others on Tecfidera Now diagonosed with ANEMIA

Discuss Tecfidera (BG-12, dimethyl fumarate) as an oral treatment for multiple sclerosis.
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Ladymac
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Looking for others on Tecfidera Now diagonosed with ANEMIA

Post by Ladymac »

Hi Everyone,

While many or most of us are having CBC run on a regular basis, and we are all watching our Lymphocytes, has anyone been diagnosed while on Tecfidera with Anemia?


Blessings,
Last edited by Ladymac on Mon Oct 28, 2013 10:24 am, edited 2 times in total.
Blessings,

Ladymac
RRMS diagnosed 2006
Tecfidera Started April 2013
:)
Anonymoose
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Re: Looking for others on Tecfidera Now diagonosed with ANEM

Post by Anonymoose »

This isn't the best source but it explains things in the most clear way...

http://m.wisegeek.com/what-is-glutathio ... ciency.htm

Bg12 depletes glutathione and all of the stomach issues and now anemia could possibly be attributed to this depletion. Maybe you will recognize more of your reactions at that link?

Hope you find the source of your issues and feel better soon.
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Ladymac
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Re: Looking for others on Tecfidera Now diagonosed with ANEM

Post by Ladymac »

Anonymoose,
We don't have any data that says that BG12 depletes glutathione. I did not have the stomach issues. My B12 is spot on. The glutathione supplement is under FDA battles this year and the claims to taking it for any reason are sharply refuted along with the disgusting condition of the manufacturer report available wouldn't have me trying anything.

thanks for your help, I am reaching out to our entire community to not look for cause or cure, but to see if anyone else is finding Anemia as a .NEW DIAGNOSIS while Taking Tecfidera and anyone with unexplained low grade fever lasting several weeks.

If it is a situation that is going on, PROMPT REPORTING to the FDA and to the Drug Company by patients and/or doctors so those of us that are having this problem don't get put through evasive testing thinking there is some other infection going on when it might be found to be the new medication.

with that said, the BENEFITS I have had on Tecfidera have been outstanding. This all creeped up in the past few weeks. I am still taking Tecfidera while we sort this out.
Blessings,

Ladymac
RRMS diagnosed 2006
Tecfidera Started April 2013
:)
Anonymoose
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Re: Looking for others on Tecfidera Now diagonosed with ANEM

Post by Anonymoose »

Ladymac,
Upon further investigation, it seems the glutathione depletion is just one phase of bg12's (which is dmf) action. It depletes intracellular gsh causing an anti-inflammatory reaction and then it increases it. http://www.nature.com/jid/journal/v127/ ... 0686a.html.

There are also papers describing dmf induced increase and recycling of intercellular gsh. Interesting.

So, you are right. There isn't evidence out there that absolutely proves bg12 depletes gsh chronically. Given the reactions you and others have had, I would still not scratch gsh depletion off the list of suspects. There has to be a simple blood test for gsh levels, doesn't there?

Be well
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NHE
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Re: Looking for others on Tecfidera Now diagonosed with ANEM

Post by NHE »

Ladymac wrote:We don't have any data that says that BG12 depletes glutathione.
How about this...

Fumarates improve psoriasis and multiple sclerosis by inducing type II dendritic cells.
J Exp Med. 2011 Oct 24;208(11):2291-303. Epub 2011 Oct 10.
  • Fumarates improve multiple sclerosis (MS) and psoriasis, two diseases in which both IL-12 and IL-23 promote pathogenic T helper (Th) cell differentiation. However, both diseases show opposing responses to most established therapies. First, we show in humans that fumarate treatment induces IL-4-producing Th2 cells in vivo and generates type II dendritic cells (DCs) that produce IL-10 instead of IL-12 and IL-23. In mice, fumarates also generate type II DCs that induce IL-4-producing Th2 cells in vitro and in vivo and protect mice from experimental autoimmune encephalomyelitis. Type II DCs result from fumarate-induced glutathione (GSH) depletion, followed by increased hemoxygenase-1 (HO-1) expression and impaired STAT1 phosphorylation. Induced HO-1 is cleaved, whereupon the N-terminal fragment of HO-1 translocates into the nucleus and interacts with AP-1 and NF-κB sites of the IL-23p19 promoter. This interaction prevents IL-23p19 transcription without affecting IL-12p35, whereas STAT1 inactivation prevents IL-12p35 transcription without affecting IL-23p19. As a consequence, GSH depletion by small molecules such as fumarates induces type II DCs in mice and in humans that ameliorate inflammatory autoimmune diseases. This therapeutic approach improves Th1- and Th17-mediated autoimmune diseases such as psoriasis and MS by interfering with IL-12 and IL-23 production.
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Ladymac
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Re: Looking for others on Tecfidera Now diagonosed with ANEM

Post by Ladymac »

Anonymoose wrote:Ladymac,
Upon further investigation, it seems the glutathione depletion is just one phase of bg12's (which is dmf) action. It depletes intracellular gsh causing an anti-inflammatory reaction and then it increases it. http://www.nature.com/jid/journal/v127/ ... 0686a.html.

There are also papers describing dmf induced increase and recycling of intercellular gsh. Interesting.

So, you are right. There isn't evidence out there that absolutely proves bg12 depletes gsh chronically. Given the reactions you and others have had, I would still not scratch gsh depletion off the list of suspects. There has to be a simple blood test for gsh levels, doesn't there?

Be well
Anonymoose,

Thank you for the information and I will continue to research and appreciate sincerely your thoughts. I believe we are all in the unknown when a new medicine comes out and many more people get on it than the clinical trials. That is the time that we are able to discover the benefits, risks and any symptomatic issues to weigh in as to what is something that can be dealt with or not.

Have a blessed Day!
Blessings,

Ladymac
RRMS diagnosed 2006
Tecfidera Started April 2013
:)
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Ladymac
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Re: Looking for others on Tecfidera Now diagonosed with ANEM

Post by Ladymac »

NHE wrote:
Ladymac wrote:We don't have any data that says that BG12 depletes glutathione.
How about this...

Fumarates improve psoriasis and multiple sclerosis by inducing type II dendritic cells.
J Exp Med. 2011 Oct 24;208(11):2291-303. Epub 2011 Oct 10.
  • Fumarates improve multiple sclerosis (MS) and psoriasis, two diseases in which both IL-12 and IL-23 promote pathogenic T helper (Th) cell differentiation. However, both diseases show opposing responses to most established therapies. First, we show in humans that fumarate treatment induces IL-4-producing Th2 cells in vivo and generates type II dendritic cells (DCs) that produce IL-10 instead of IL-12 and IL-23. In mice, fumarates also generate type II DCs that induce IL-4-producing Th2 cells in vitro and in vivo and protect mice from experimental autoimmune encephalomyelitis. Type II DCs result from fumarate-induced glutathione (GSH) depletion, followed by increased hemoxygenase-1 (HO-1) expression and impaired STAT1 phosphorylation. Induced HO-1 is cleaved, whereupon the N-terminal fragment of HO-1 translocates into the nucleus and interacts with AP-1 and NF-κB sites of the IL-23p19 promoter. This interaction prevents IL-23p19 transcription without affecting IL-12p35, whereas STAT1 inactivation prevents IL-12p35 transcription without affecting IL-23p19. As a consequence, GSH depletion by small molecules such as fumarates induces type II DCs in mice and in humans that ameliorate inflammatory autoimmune diseases. This therapeutic approach improves Th1- and Th17-mediated autoimmune diseases such as psoriasis and MS by interfering with IL-12 and IL-23 production.

Wow, I appreciate the feedback, and am at a significant disadvantage, as I don't understand the technical things you wrote about. I appreciate your feedback. Does any of this point to a reason for Anemia? I appreciate your response if you could break it down for someone, me :oops: who is less technical. Thanks.
Blessings,

Ladymac
RRMS diagnosed 2006
Tecfidera Started April 2013
:)
xpsychiatricmd
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Re: Looking for others on Tecfidera Now diagonosed with ANEM

Post by xpsychiatricmd »

From what I remember, a Hemolytic anemia can cause fever. I recently had my CBC which was WNL. Your doctor should give you more information or send you to a Hematologist. Since is a new medication, all side effects/unexpected reactions should be looked at carefully. Good luck.
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Ladymac
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Re: Looking for others on Tecfidera Now diagonosed with ANEM

Post by Ladymac »

xpsychiatricmd wrote:From what I remember, a Hemolytic anemia can cause fever. I recently had my CBC which was WNL. Your doctor should give you more information or send you to a Hematologist. Since is a new medication, all side effects/unexpected reactions should be looked at carefully. Good luck.
Hi there,

Hope you are doing well. Last time I saw a post from you, you said something about sedation. Perhaps it is fatigue and your hematocrit, hemoglobin and red blood cells that may have been showing some anemia? I know the docs are all watching the lymphocytes, but an iron test is what showed that those factors showed I was anemic.

Started Iron last night per my primary care physician. There was a small percentage of people in the clinical trials that showed anemia. I suspect now that they are getting so many more people on it since the clinical trials that there will be more data in 6 months, I hope.

We are hopeful that the reason I became anemic was because my adrenal glands are insufficient and I have to take hydrocortisone every day. We have been testing everything under the sun and haven't come up with another reason yet. More results back on Friday. We decided to start the Iron and wait 2 weeks and test again.

Thank you for your post. I hope you are doing well.
Blessings,

Ladymac
RRMS diagnosed 2006
Tecfidera Started April 2013
:)
Tassle24
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Re: Looking for others on Tecfidera Now diagonosed with ANEM

Post by Tassle24 »

Hello. I started Tec about 3 months ago and my last blood results showed anemia - low RBC. Also showed high MPV and low platelets so my neurologist told me to have my primary run more specific tests targeting a potential "hemolytic event," (Coombs direct, retikulocytes, haptoglobin) but those all came back normal. Not sure if it's related, but I also had a normal hepatic (liver) panel except for isolated elevation in direct bilirubin, which my neurologist thought was probably related to blood issues. He was going to follow-up with Biogen but I haven't heard back. So you're not alone, but I have no real answers or insight at this point. My neurologist did say he would not expect Tec to affect RBC.
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NHE
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Re: Looking for others on Tecfidera Now diagonosed with ANEM

Post by NHE »

Tassle24 wrote:Hello. I started Tec about 3 months ago and my last blood results showed anemia - low RBC. Also showed high MPV and low platelets so my neurologist told me to have my primary run more specific tests targeting a potential "hemolytic event," (Coombs direct, retikulocytes, haptoglobin) but those all came back normal. Not sure if it's related, but I also had a normal hepatic (liver) panel except for isolated elevation in direct bilirubin, which my neurologist thought was probably related to blood issues. He was going to follow-up with Biogen but I haven't heard back. So you're not alone, but I have no real answers or insight at this point. My neurologist did say he would not expect Tec to affect RBC.
Welcome to ThisIsMS Tassle,
Fumiderm is a medication used in Germany for psoriasis that's closely related to Tecfidera. Here's one thing that's been written about Fumiderm and blood count abnormalities.
http://www.thisisms.com/forum/tecfidera ... ml#p198425
Reversible leucopenia, lymphopenia and transient eosinophilia are also frequently observed [2]. Leucopenia occurs in a quarter of patients [8,29]. A reduction in lymphocyte count occurs in around 70% of patients [6,8,25,29] and can exceed 50% in about 10% of patients [4]. The dose of Fumaderm® should be reduced if lymphocytes fall below 0.5x109/L or leucocytes fall below 3.0x109/L; if blood counts improve, treatment can continue at the reduced dose, but otherwise Fumaderm® should be stopped [9]. It has been reported that patients with lymphopenia are significantly more likely to show improvement in psoriasis than those whose lymphocyte count stays within the normal range [6,22,24]. Eosinophilia occurring between the fourth and tenth week of treatment [28], in up to a third of patients, generally lasts for one to two months and resolves without intervention [6-8,14,17,22-24,29]. The clinical significance of these changes is not known but long-term follow-up of patients with haematological abnormalities does not suggest they are at an increased risk of infection or cancer [22,29].
There is similar information in the Tecfidera Prescribing Information. Although there's no mention in either of RBC anemia.
http://www.tecfidera.com/pdfs/full-pres ... mation.pdf
mmmlamas
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Re: Looking for others on Tecfidera Now diagonosed with ANEM

Post by mmmlamas »

I have a family member on Tecfidera with an anemia problem. I would be interested in any information available about this condition.
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