Medication for spms

[jayjill]

Hello everyone! I need a good rant so reckon I can get away with that here....Well we all know that officially there is no treatment for spms and the lines labs tend to trot out (more tests needed) wear a bit thin when you get to my age. So I've kept my ear to the ground, and asked for referral to neurologist. Upshot is that with his approval I've been taking high dose simvastatin (80mg) and continued with HRT (tibolone). This seemed a reasonable strategy given the phase 2 trials (UCLH) which indicated that the high dose statin MAY slow down brain atrophy; plus it reduces the risk of strokes etc when taking HRT (over 10 years now). All fine, then last week American scientists' results suggest that prolonged use of statin s may interfere with the activity of stem cells and may cause accelerated aging! Oh, what to do! With ms we're already combatting tiredness and slowness. I've halved my statin to 40 mg but perhaps I should phase both this and HRT out now. I next see the neuro in December. I know the GPs and ms nurse wouldn't have an opinion. I know I'm asking questions no one can answer, but I just don't know what to do!!! Thanks for the rant. or that kind of thing... Jill xx

[Scully]

Oh my,

 

It's such a fine balancing act... We fill ourselves up with all sorts of Meds ( I hesitate to use the word drugs here ) for relaxin muscles, for pain, to aid the much needed sleep that MS drains us of at times.

 

Only six years ago, my medicine cabinet consisted of a pack of paracetamol and some sticking plasters!....now I need a whole shelf of Meds....drugs ( there I said it )

 

What do these drugs have over the long term ? Who knows. I've been on HRT for many years, i did try to come off them a while back, but found I couldn't sting a sentence together, odd I know, but went back onto HRT and found I was able to think and communicate as normal...I'm a firm believer that HRT plus's far outweigh the minus's. No experience of statins, so can't comment on that one.

 

Scully

x

[Marina]

I was on the statins trial but left as I had side-effects.... so I can't comment on that one.

 

I've been on HRT since I was about 44 (I'm now an unbelievable 60!) following a full hysterectomy. Prior to the hysterectomy, it was discovered I had idiopathic osteoporosis. The HRT was a god-send as it healed the osteoporosis in my lumbar area and helped it a bit (but not fully) in my hip. I was repeatedly told by the people doing the DEXA scans to stay on HRT because of it. At that time, I was on 6-monthly implants, with testosterone added. Actually, I'd have it every 5 months as I'd start to feel in need of it by then.

 

About 12 years ago, I got a bit fed up with being cut for the implants, so I switched to oestrogen tablets. A year or less later, I went back onto implants as I didn't feel as good on tablets alone.

 

About 5 years ago, I got really fed up with being cut and having my now non-existent bum covered in tiny scars, so I went back on tablets (Elleste Solo 1mg). This meant I wasn't having testosterone anymore either. I still felt way better on HRT implants and I'm not sure if it was because of the testosterone or maybe as the oestrogen doesn't go through the stomach and is a different sort of dosage. I feel I've gone downhill since then, especially fatigue-wise and with huge weight increase, but how much of that is my MS or due to lack of testosterone and the way implants delivered the oestrogen or a combo of both, I've no idea...

 

In the meantime, GPs kept trying to persuade me to come off HRT, as I'd been on it for so long. I didn't want to, so stayed on it. GPs seem to like to try to scare the living daylights out of you if you stay on HRT for more than 5-10 years...

 

Just to muddy the waters, I'm also on thyroid (Natural Dessicated Thyroid, which I first started roughly the same time as HRT), Tegretol (on and off), LDN, sometimes Modafinil, sometimes a beta-blocker. All of these cause one or another med to either have reduced or increased effect, especially with the thyroid and oestrogen, and I can't tell which is which doing which

 

I now don't know what to do!!! I want to stay on it, but not sure if I "should"....

 

So, Jill, I'm joining in with your rant!

[jayjill]

Thanks for empathising, Scully & Marina! Yes, I think you're right Scully about it all being a balancing act. You just have to keep juggling those balls. Your journey has many twists & turns, Marina. It does sound as though HRT implants were right for you. Wonder if there is any alternative to constantly cutting your poor bum. I am now 61 so know what you mean about GPs who try to persuade you to desist. Indeed, about 4 years ago I did stop as advised, but suddenly, not having been told about gradual reduction. Talk about depression! Brick walls! No energy! Soooo glad to be back on the hormones that keep my mood stable. I'm also trying biotin now (forum has another thread) which is costly and fiddly. We were born too early, we pioneers in ms treatments. (Don't get me started on cannabis!! On well, another subject...another time). Anyway, keep on top of those mountains (of drugs) you two. Jill xx

[Tabbycat]

I've been using estradot patches for three years after my Ms diagnosis brought on the menopause, I guess it was the shock! They have helped calm down a lot of things and I think I will stick with them as long as I can. My mother was on HRt for about 15 years and is now 86 and doing fine. So do what suits you, we can't see the future, so enjoy what we can ladies!

[Marina]

Ha, the Barts MS Blog is wondering "Do you think we should do a study of HRT in women with progressive MS?" in their post today:

 

Multiple Sclerosis Research: ResearchSpeak: worsening disability after the menopause

http://multiple-sclerosis-research.blogspot.com/2015/10/researchspeak-worsening-disability.html

[jayjill]

So ironic, Marina! We knew years ago that hrt helps, somehow. (more tests needed of course). Watch that space.