This Is MS Multiple Sclerosis Community: Knowledge & Support

I already posted in the Introductions thread, and now here I am again, introducing myself in the Golden Years thread.

I'm 66, a woman who's had MS since about 1978 or maybe longer (diagnosed in 1980). I've taken part in a couple of MS message boards since 2001.

I've lived in the same HUD-subsidized apartment in WA state since 1983, though I'm from Chicago originally.

I use a wheelchair most of the time. I don't sit in anything else but my wheelchair (nothing else is comfortable), though I can walk around my apartment and in the building and even walk about a mile on my very good days.

I use the wheelchair for mobility when I'm not sure how much distance I'll have to travel or how tired I might get.

I've never driven a car. I do have a helper who comes in 9 hours a week and drives me on essential errands (or goes for me when I can't go, but I make a point of trying to be able to go because I like getting out).

I was married for 13 years but divorced in 1974. We had two children. One is now a computer programmer in Portland, Oregon. The other, a daughter, died quite unexpectedly of a ruptured brain aneurysm at the age of 27, on Christmas 1995.

I live with my cat Phoebe and enjoy taking part in some Internet forums as well as reading (Talking Books only), taking care of plants, listening to music, and watching movies.

Agate

Welcome to the site and especially to this thread. I'm 60, diagnosed RRMS age 57, and have been very remiss in actively participating in this thread.

I really appreciated your "hello" introduction and information. I'm so sorry you lost your daughter so unexpectedly at such a young age. I grew up near Portland, so I consider the Pacific NW "home".

Until recently I'd been on Avonex. Now I'm on Copaxone (about 3 months) and have the lumps to prove it. I try to exercise 5 or 6 times a week and am trying (not so diligently at times) not to eat a lot of saturated fats (ala the Swank diet).

I'm still working FT (bureaucrat) and spend way too much time reading about MS, hormones and possible connections between the two. That all started because I was diagnosed after they whipped me off HRT. I know the association could well be totally coincidental but the circumstance itself has provided me with some fascinating reading.

I'm looking forward to your posts and hope you'll participate in any discussions that may interest you.
Again, welcome, and, is "Agate" a reference to the agates that are found on the beaches there? Just curious......

Sharon

Hi Sharon,
How nice that you took the time to reply!

I didn't know that agates are found on the beaches here--though I've heard of an Agate Point Road somewhere around here and often wondered why it's called that.

Agate was the name of my cat at the time I first joined an MS message board (2001). Her colors were a marbled black, gray, and orange, and I thought she looked like an agate.

Unfortunately, she died in 2004, but I kept the name as a way of honoring her memory (and because it was just more convenient). The resident cat who now patrols the premises is named Phoebe.

It sounds as if you haven't gone back on HRT--?

Agate

Quite the contrary I think, sorry I wasn't clear. I'm on what I call "individualized" hormone replacement therapy.

The very first advice I got after my diagnosis was to take estriol. I'd never heard of it, did some reading (the Phase I trial), decided that the best approach was "balanced levels" of all hormones. I had my hormone levels (cortisol, DHEA, testosterone, estradiol, and progesterone) tested, and based on the test results and physicians advice, now have prescriptions (compounded) for 8 mg of estriol and 500 mg of progesterone.

The only normal hormone level I had was testosterone and I had NO progesterone. My cortisol (stress hormone) was high and estradiol and DHEA were both low.

I've become a firm believer that people with MS (men and women) should consider having normal balanced levels of all these hormones throughout the course of the disease. They appear to have multiple functions in the brain and CNS (several are synthesized de novo there), many of which may provide some form of neuroprotection to people with MS.

Without clinical trials it's an unknown of course, but I personally think the pre-clinical evidence is pretty good.

Did you ever try HRT? If you did, how would you describe your experience good, bad, indifferent, unknown, other ?

Sharon

Sharon, thanks for explaining. I had no idea you could get hormones tailor-made according to your hormone test results. That sounds like a safer and more finely tuned set-up, probably good for someone with MS.

I've been on Prempro for many years. In spite of recent warnings about it, my doctor (a family practice doc) feels I should stay on it because I'm at risk for osteoporosis. In fact, that's the only reason I'm taking it since I never had any menopausal problems.

I haven't noticed any bad effects from the Prempro at all.

Agate

I had no idea when I started either that you could have your hormone levels tested and prescriptions individualized.

I definitely think it's probably a safer approach for people with MS. From what I've read, both high and low levels of these hormones in people with MS may present some problems and every person's hormone profile is as "individual as their fingerprint", or, so I've read over and over and over.

Interesting that your physician kept you on Prempro to help prevent osteoporosis. That is one of the benefits that seems to get very little attention. It's terrific that you've not had any problems with the Prempro. I didn't have any problems on HRT either, the WHI study came out and my ob/gyn said "no more".

Take care

Sharon

I asked my doc about that study when it came out (a couple of years ago), and she said she didn't think the study had been well designed. Anyway, she wanted me on something to keep osteoporosis away. Fosamax would have been her choice for me, except for the possible side effects, which I didn't want.

If the data for Prempro are bad enough, I should reconsider the Fosamax, probably. I need to ask my doctor about this.

However, the last bone-density test I had showed I'd actually improved, which the bone-density doctor said hardly ever happens. I'd gone from osteopenia to normal (not at risk of fracture). The Prempro might have been doing some good--I also take Viactiv calcium and exercise at least half an hour a day.

Agate

Sorry it always take me a while to reply to some things. I don't think the data about Prempro are all that bad, but I do think in general some current research points to synthetic progesterone (MPA) as the possible culprit of risks in "combined HRT" and I think MPA is used in Prempro.

If it were me I'd definitely be asking the physician about the possibility of bioidentical progesterone instead of "MPA". Unfortunately bioidentical hormones haven't been studied all that much in the US so there's not a lot of data about possible risks of long term use of bioidentical progesterone, but it definitely seems to have some potential neuroprotective benefits over MPA.

You bone density results are fantastic. Sounds like a great "Prempro" benefit to me. I'm sure the exercise and calcium are probably helping too. I don't know a thing about Fosamax (or the risks). My bone density results have been great too (so far).

Now, although I don’t know all the details of the WHI study design, I definitely agree with your physician’s opinion about the WHI study and have read a lot of critiques about it. This article Is the estrogen controversy over? Deconstructing the WHI study: a critical evaluation of the evidence discusses some of the controversy with attention to cardiovascular events.

This article, Menopausal Hormone Therapy notes


I definitely think every person needs to consider the risks individually in light of their own health history. Since a lot of people seem to be most concerned about breast cancer, this link, Probability of Breast Cancer in US Women from the National Cancer Institute contains a cool tool. If you scroll to the bottom there’s an individualized breast cancer risk assessment tool (for people with no history of breast cancer). I found it easy to complete.

This link Risk Factors for Breast Cancer describes the factors the assessment considers.

And with that I think I'll quit for now. I'm working on trying to put together more data on the risks of HRT. I think there's been a lot of hype about "relative" risk and not a lot of data about "absolute" risk.

Take care

Sharon

Sharon,
Thanks so much for posting so much helpful information!

P.S. It's encouraging to find out that I have a 98% chance of NOT getting breast cancer in the next 5 years.

Agate

That's great!

I'm embarrassed though that I totally forgot to mention that Copaxone (which I take from another thread you might be considering) slightly increases the risk of breast cancer. I didn't know that before I made a decision to switch to it.

Cancer incidence in multiple sclerosis and effects of immunomodulatory treatments

It may be another factor you want to take into consideration in your decision making, or, maybe not. 98% risk of not having breast cancer in the next five years is definitely encouraging. I think that's what mine is too.

Sharon

Sharon, thanks for calling this to my attention. I see that the slight increase in breast cancer among MS patients taking immunomodulatory therapy isn't "statistically significant." I hope that means we don't have to worry very much about it at this point.

It's good to know about the possibility of a problem, though, so we can be on the lookout for any more studies on this topic.

Agate

I hope we don't have to worry too much about it either. Unfortunately I don't think we have a lot of info to go on at this point and we should definitely be on the look out for more studies.

The Copaxone insert lists breast carcinoma as something that has been reported postmarketing that may or may not have a causal relationship to the drug. Breast cancer is not listed as an adverse reaction among 2% or more of trial patients (n = 201).

Unfortunately there doesn't seem to be enough data available to calculate the absolute risk with any degree of confidence. One of my pet peeves is the use of adjectives with risk information without telling me exactly what the risk actually is. Saying it's "slight" or "small" just doesn't cut it for me. At this point tho it doesn't appear to be something we need to worry about.

Take care

Sharon