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[Smokey]

Hi everyone I thought I'd update you all with my experiences coming off Hrt patches .

Not good I'm afraid,first few days ok then hit with exhaustion, the worse I e ever felt, to the extent of my ms being much worse,legs felt like lead, kept crying,funny heads, I honestly thought I was going to have a relapse, felt ill until Christmas eve then when we went up to bed, we decided I should start with the patches again.

Started to feel slightly better at breakfast next morning it took that exhausted feeling away gradually and today I am nealy back to my normal Ms fatigued self!

My stomach was playing up every day even with my omprezol in the morning,even with just drinking tea, but disappeared the following morning after the patch was put back on.

Oh and weight wise I lost 6lb whilst off Hrt for the three weeks.

So what did I learn from this "not to come off Hrt cold turkey" or not at all!

Oh and not to choose Christmas time to do it!

[Limpy]

We live and learn.
Hope you feel right soon.

[Smokey]

Thanks Limpy, I'm meant to have tests is January to see if I'm producing enough energy from my pituitary gland I think it is that anyway, my Ms nurse told my thyroid consultant that my thyroid level was a bit too high and that it could be why I'm so knackered, but after joing the Ms society forum I now realise this is more or less what most people with Ms feel like, wouldn't she know this?

I'm thinking it may wellbe a waist of time now!

How are you doing these days with your Ms ? I'm now down to 12 and a half mg of nortriptylin,😊

[Limpy]

MS knackeredness, oops fatigue, is a well known side effect with MS, or it is to anybody with a brain. Mind you, my first GP didn't know about it, till my MS nurse told him the facts of life. Surprised at your MS nurse though.

My MS isn't good at the moment, well it is, I'me just wiped out - Perhaps not a surprise given OH having heart problems and being in hospital to find out what is going on.

[Joyce]

Cold turkey is awful. Been there. I'm now on my final stage of weaning myself off. But scared I might relapse, but won't know until I try.

Goodness knows what it must be like with MS thrown into the mix.

[Smokey]

Limpy I have heard stress is not good with Ms I hope your hubby finds out what's wrong with his heart, and it gets sorted. This fatigue seems to come and go with me over the year I think,

Cubagirl were you referring to withdrawal of Hrt or another drug?  I have been reducing the nortriptylin I've been on for ages and just reduced it again last night to 12 and a half mg from 20 and I have a fuzzy head today, that's the only way a can describe it. Hopefully it won't last too long. Ms confuses things Cubagirl,as symptoms can be similar to meno and thyroid

[littleminnie]

I'm also trying to wean myself off HRT Smokey but I'm doing mine slowly. I'm on a patch so I'm cutting a quarter of it off at the moment. In the new year year I'm going to start cutting off a bit more until I get to a half. (to much of a coward to stop in one go). How long have you been on it?

[Smokey]

Hi littleminnie

I've been on Hrt for about 21/2 years, and was only going to come off for a month whilst I have the tests done there basically to rule out thyroid fatigue, my thyroxine has been increased now to 100mg incase 50mg wasn't quite enough.

My fatigue is a lot less this week but whether it's down to the extra thyroxine or the Hrt alone I can't be sure, but I have had bad fatigue whilst on Hrt before,but I think I just made it loads worse by stopping if. Luckily I can still have the tests on Hrt they just have to take it into account when looking at the results.

It sounds like you have found a good way of coming off by cutting the patches off bit by bit.

Are you coming off it to try another type or have you no choice.?

[littleminnie]

I've been on it 3 1/2 years and the doctor said I should start weaning myself off it   
    I take 50mcg of thyroxine too, been on that 22 years.

[Hurdity]

Hi littleminnie - can't remember how old you are? I'm sure you've probably said and we have also elsewhere, that unless there is a medical reason why, you don't need to come off HRT if you don't want to - and from your non-smiley, I presume you don't?

Remember there are several of us in our 60's who are still on it....

Hurdity x

[littleminnie]

Hi Hurdity, I'm 54.  I'm going to try and wean myself off it and if all the symptoms come back then I will be back at the doctors arguing my case.

[Dana]

I'm now 55 and I've been on HRT (on and off) since I was 51, and I'd like to experiment with reducing my dose at some stage. I'm currently using tablets (patches just don't seem to work for me) and I was wondering if, instead of trying to cut the tablets into quarters and experimenting with reducing that way, what do any of you think about moving the doses apart a little bit. What I mean is dosing every 36 hours instead of 24 hours.

So in effect that would be (eg) 1 tablet AM Monday, 1 tablet PM Tuesday, 1 tablet AM Thursday, 1 tablet PM Friday, 1 tablet AM Sunday.  Over the course of the 7 days it would work out to be about 75% of my normal dose, which would be equivalent to quartering my tablets, but I'm just not sure if this would create too much of an up and down of the levels?

I wouldn't continue to do this if I found it worked okay and I wanted to try to reduce further to half a tablet. In that case I would just cut the tablet in half and take every 24 hours, but I wonder if any of you can see any major flaws in this experiment as an interim measure?

[Limpy]

Hi Dana - I'me not an expert but what you suggest looks to be a good way to start reducing the dose.
My GP didn't like the idea of cutting bits off patches but did think spacing the doses further apart would be ok.
Your approach sounds similar. Hopefully, somebody who knows what they are talking about will be along soon

[Dana]

Thanks for your feedback Limpy. Interesting what your doctor said. Maybe if things go okay with the 36 hour dosing, maybe I could try dosing on alternate days and see what happens. It's all an experiment.