Hormones and MS

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Hormones and MS

Postby Loriyas » Fri Dec 08, 2006 6:16 am

This is a question for anyone who may know the answer or for anyone who may even want to hazard a guess. Remember the studies where estriol may be of benefit to MS? Well, what do you think about the opposite? What if the body were depleted of estrogen? What do you think would happen to a person's MS? Do you think it would worsen? Even men have small amounts of estrogen in their bodies. Does anyone have any ideas as to what would happen if there was no estrogen or very, very little?
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Postby Muu » Fri Dec 08, 2006 9:50 am

How about a deep gravelly voice and a goatee for starters! (joke)
No, seriously low oestrogen levels is what occurs naturally in women during the menopause so in the case of women one could expect hot flushes, reduced or no bleeds etc. Not sure about the guys tho.
I haven't done much research on this area but I feel that personally that hormonal changes are part of my ms catalyst combo as historically there appears to have been a direct correlation in time to hormonal changes eg. pregnancy, childbirth and contraception and exacerbations. It makes me a little nervous of the menopause.....but hopefully thats a good few years away yet.
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Postby ewizabeth » Fri Dec 08, 2006 11:39 am

Hi Lori,

In Dec 2000 I had an ooectomy (I love that word... :lol: ) and a hysterectomy, which instantly cut off my supply of natural estrogen at age 42. My first big relapse started right in the hospital while in recovery. Was that the only factor? I'm not sure, but I know I'm never going to stop taking my low dose estrogen pills.

When I first read about the Estriol trial a couple of years ago, it made perfect sense to me, given my past experience.
Take care, Ewizabeth Previously Avonex, Rebif & Copaxone RRMS ~Tysabri, 31 infusions, ended 9/09. Starting Copaxone 12/09, waiting for Cladribine to be approved in 2010.
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Postby Loriyas » Fri Dec 08, 2006 1:16 pm

Ewizabeth
Your response is the exact reason I asked the question. I just underwent a total hysterectomy on Nov 9. But..... I can't take hormones because I also had a bout of breast cancer this summer which was removed surgically then went through radiation (2006 has NOT been my year). So no hormone replacement for me. Your answer scares me to death because it is exactly what I was thinking could occur. So far I've been fine but will be starting a new med soon which will take out any remaining estrogen from fat. This is to hopefully keep cancer from recurring. I just left gynecologist office today. I asked him what he thought might be the consequences. He said you have to deal with the cards you've been dealt. So what he means is that now instead of MS being front and center, it is now taking a back seat. I am trying very hard not to freak out because I know THAT is not helpful for my MS. But this has me confused and scared. The next stop is to the neuro but I know that she is not going to know either. That's why I asked on this board. So if anyone else has any ideas please let me know. I know BioDocFl is a cancer researcher. If you are around maybe you have some suggestions?

Thanks for listening,
Lori
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Postby sh8un » Fri Dec 08, 2006 2:23 pm

Lori,
I am so sorry to hear about your troubles this year. I hope that you can find the answers you are looking for and that the new year will be better.
NN
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Postby ewizabeth » Fri Dec 08, 2006 2:54 pm

Loriyas wrote:Ewizabeth
Your response is the exact reason I asked the question. I just underwent a total hysterectomy on Nov 9. But..... I can't take hormones because I also had a bout of breast cancer this summer which was removed surgically then went through radiation (2006 has NOT been my year). So no hormone replacement for me. Your answer scares me to death because it is exactly what I was thinking could occur. So far I've been fine...
... I am trying very hard not to freak out because I know THAT is not helpful for my MS.


Lori,

That was only my experience. You said that so far you have been fine since the hysterectomy. Maybe that means that the hormones are not as much of a factor for you as far as your MS is concerned. We all respond differently to different treatments too, so while the hormones may have helped me in some way, I cannot take interferon because it gives me very bad depression.

I think you need to focus on taking care of yourself for the cancer, and reduce stress as much as possible. Try to eat healthy and exercise if you can, and things will be ok (think healing thoughts....) Breast cancer is very treatable nowadays, as is MS. My half sister beat cancer a couple of years ago, and she also has severe Crohn's disease, and post-polio syndrome, both of which I consider to be as bad as MS in some ways. She's doing fine. I know you will be too.


Hugs to you...
Take care, Ewizabeth Previously Avonex, Rebif & Copaxone RRMS ~Tysabri, 31 infusions, ended 9/09. Starting Copaxone 12/09, waiting for Cladribine to be approved in 2010.
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Postby Loriyas » Fri Dec 08, 2006 4:16 pm

Thanks for your positive thoughts. I am usually positive too. Today was just not one of those days. I just really need to find some answers. I have always done better when I understand things and can be proactive about something. So that's why I am trying to research as much as I can. I do work out religiously (except not for the last couple of weeks, obviously) because I find it really helps my MS symptoms. I know it helps cancer patients and the endorphins just plain old help everybody! But for me knowledge has always been the key. The more I understand this disease (MS) the more I have a handle on it. I thought I understood it pretty well for me until now. So now I'm researching again.

Thanks again
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Minocycline and Neuroprotection

Postby Shayk » Fri Dec 08, 2006 5:09 pm

Lori

I'm sure you probably know I'm one of the people who value hormones and their potential to help manage MS. I value them because of their neuroprotective properties.

Minocycline is another substance that's been trialed in MS and also displays (IMO) significant neuroprotective properties that may be relevant to the injury cascade (as it's currently understood in MS). Here are links to a couple of threads on the topic.

First thread
Second thread

I'm really crunched for time at the moment but if your interest in hormones to help manage MS was from a neuroprotective point of view, I think minocycline may be something you and your physicians may want to research too.

I'm so sorry you have this double whammy (to put it mildly) but I do think from a "neuroprotective" standpoint, there may be some other options to consider.

Do take care....relaxing is one of the best things too IMO.

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Postby Loriyas » Mon Dec 11, 2006 7:32 am

Sharon
I was hoping I might hear from you. Your advice has been helpful in he past. I was excited as I read the 1st thread about minocycline until I got to the part about changing DNA may increase chances of cancer. Then it put the stop on it for me for the time being. I am not sure who to turn to for research into all of this because I cannot possibly be the first MS patient with MS to have had breast cancer or the first breast cancer patient with MS. But it sure seems to be the case with the lack of pertinent information I am finding. The specialists I am seeing here say I am their first, but I am in Naples, FL. My next step is to go somewhere larger that would not find it unusual. There is something totally out of whack with my immune system, I beleive, and all of this is not coincidental. Now to figure out how it all relates and who helps me to do this is the next step.

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Postby Chris55 » Mon Dec 11, 2006 7:58 am

Lori--I know there are "natural" substances (from soy I believe) you can take to add estrogen. (I know, I know...everyone is sick of my feelings on "natural, natural, natural"!) However, if it would do no harm, I would discuss with my gyn/neuro. It just might help!
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Postby connieb » Mon Dec 11, 2006 8:33 am

To continue Chris's natural line of thought and since you are in Naples, Fla, have you looked at the Perlmutter Health Center? Dr David Perlmutter is a neurologist with a somewhat unorthodox but IMHO scientifically supported approach to MS-- he wrote The Better Brain Book (I think that's the title)-- great and encouraging reading I thought. Good luck and here is to a much better and healthier 2007! (hope this didn't violate any forum rules ) :)
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Postby dignan » Mon Dec 11, 2006 9:22 am

Lori, I don't know if BioDocFL would be able to help you out at all, but maybe. He's researching cancer or potential cancer treatments (professionally, not as a hobby) and posts here, so seems to be someone who might have given some thought to the connection between the two diseases.
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Postby Loriyas » Tue Dec 12, 2006 12:49 pm

Dignan
I was hoping that BioDocFl might come along and see my post. He might just have some insight into all of this. Thanks

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Cancer and MS

Postby Shayk » Wed Dec 13, 2006 8:49 pm

Lori—

I totally missed the info about minocycline and DNA. Sorry about that. I think it’s smart to put any decision about that on hold until you know more. My gut impression is that mino’s been on the market a long time and I think with a relatively safe “safety profile”, but I haven’t researched that at all. Maybe your oncologist could offer an opinion on the risk of mino in your situation ????

Your comment sparked my curiosity.
I am not sure who to turn to for research into all of this because I cannot possibly be the first MS patient with MS to have had breast cancer or the first breast cancer patient with MS.


You probably already discovered these in your research, but if not, here are a couple of abstracts on the topic of MS and cancer.

Cancer Risk Among MS Patients
the risk of cancer following diagnosis of MS

Overall 1,037 cancers were observed in 11,817 MS patients during 153,875 person-years of follow-up vs. an expected number of 1,098

Though the overall cancer risk was not increased…..female MS patients had an increased risk of breast cancer.

In general MS patients are not at increased risk of cancer. Women with MS, however, seem to have a small excess risk of breast cancer, which cannot be attributed to reduced parity or delayed first child birth.


Cancer Incidence In MS and Effects of DMTs

Among 892 female MS patients, 15 (1.7%) developed breast cancer, and 31 (3.5%) developed cancers of any type. Seventeen of 446 (3.8%) male MS patients developed cancer.

Our findings indicate that cancer incidence is significantly lower in female MS patients than in the general population.

Female MS patients treated with glatiramer acetate showed an elevated rate of breast cancer and all MS patients treated with beta-interferons showed an elevated risk of non-breast cancers though not statistically significant (p = 0.122 and 0.072, respectively).

Further study is needed to assess possible associations between long-term exposure to the novel immunomodulatory treatments in MS and rate of cancer.


I’m curious if your neuro and oncologist are aware of this info. If so, what did they say about it and/or advise?

Back to some other alternatives to “hormones” for neuroprotection to help manage MS. One of the reasons I value the potential of estrogen is because animal studies seem to suggest it helps inhibit mitochondrial dysfunction. I think there’s increasing evidence mitochondrial dysfunction might be an issue in MS pathogenesis. Here’s one of the latest abstracts on the topic.

Mitochondrial Protein Nitration Primes Neurodegeneration in EAE

Our findings implicate mitochondrial dysfunction induced by protein inactivation and mediated by oxidative stress initiates a cascade of molecular events leading to apoptosis and neurodegeneration in experimental autoimmune encephalomyelitis that is not mediated by inflammatory cells.


Now, this article, Neurodegeneration from Mitochondrial Insufficiency reviews various disorders (including MS) and supplements that you might want to consider since estrogen isn't an option. The whole article is available free.

I know it’s just more to potentially research in a terribly difficult situation, but the supplements may be some options to try and boost your “neuroprotection”.

There were a couple of interesting articles on breast cancer this week too.
Exercise Lowers Risk of Breast Cancer and After Breast Cancer—Pregnancy ok? They both mention hormones.

At least some of the research on neuroprotection/hormones indicates that normal hormone levels are sufficient to provide neuroprotection (animals). Have they advised you that even "normal" hormone levels for someone your age would be potentially harmful? Just curious....

Take care

Sharon

Now, where's BioDoc?
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Postby Loriyas » Thu Dec 14, 2006 6:46 am

Sharon
Thank you for all the information you have posted. I'll pull it up and read it as soon as possible. I had not come across the statistic about the slight increase of breast cancer with Copaxone, which is what I am on. That really disappoints me because I am really doing well on it and didn't do well on interferons.

As far as discussing anything with oncologist and neuro- there is no discussion with oncologist. He thinks you must be on something anytime you've had b.c. even if it is gone, and he also doesn't know anything about MS. (remember I live in Naples, FL, so not exactly research capital of the world!) and as far as neuro I haven't seen her yet. But again she is a general neuro, not an MS specialist. I've decided that it is time to go on from here after the holidays to see someone more specialized. This is getting too complicated now for just a generalist.

I am looking forward to reading what you've sent. Keep me in mind if you come across anything else. I truly appreciate your help!

I've been looking for BioDocFl-even sent him a PM! Hope he checks this site once in a while.

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