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[Sheri]

I'm sorry if this is triggering for some people on here
What are the risks if getting breast cancer if your on HRT?
Louise Newsome says, its low but slightly higher if your taking an old type of progesterone.
I think the one I'm taking is the old time. Did mention it to my gynae & he said, not to worry about it & i can't take oral progesterone as it goes through the liver & I'm on a drug that can destroy the liver & it wouldn't be wise to put more strain on liver.
The drug I'm is Kaftrio & its probably the most important drug I'll ever need as it keeps me alive so i can never come off it.
Btw, this isn't my health anxiety kicking off like it did with the thyroid, it is a genuine concern & i guess weighing up the pros & cons.
Also, wondering about the mirena coil which was mentioned yest but gynae is concerned that it could make me bleed more or have spotting & as i have menorrhagia, it might not a wise. So kinda stuck with patches i think.

[CLKD]

Kaftrio, described by patient groups as a 'revolutionary drug', is a triple combination treatment combining three drugs which perform different functions – ivacaftor, tezacaftor and elexacaftor – and tackles the underlying causes of the disease, by helping the lungs work effectively.  For cystic fibrous sufferers.

Ring your GP Surgery this afternoon and ask for a referral to a dedicate menopause clinic.  Wouldn't we hope by now that instead of dismissing us, GPs would bend over backwards to find out what can ease symptoms.   . Gynaecologists often know zilch about hormone therapies unless they are treating someone trying to become pregnant.

What treatment has the gynae suggested for the menorrhagia?  I went on the contraceptive Pill.  Do U have a dedicated Consultant regarding the CF? 

   risks regarding HRT and breast disease are possible but low.  Quality of Life should be our first decision ;-).  Let us know how you get on?

[Sheri]

I thoughy gynae's was clued up on HRT.  That's little i know. I think i might ask to see a proper menopause Dr. Just dread the waiting list.
I take trans acid for the menorrhagia.
Yes  kaftrio is an amazing drug. Unfortunately, it hasn't been that life changing for me as my cf is severe & kaftrio can't reverse the damage to my lungs & i still get nasty infections & my lung function hasn't increased like most but it has helped me to stop coughing continuously & it kinda keeps me stable. The downside of it is, it opens up the channels in the brain & its causing some of us to suffer severe anxiety & intrusive thoughts. Some have committed suicide over it.
Drs can't decide if kaftrio is to blame for my anxiety or HRT. Might actually be abit if both. So rather than stop Kaftrio, it was decided to try HRT & if it helps, all well & good but if it doesn't then i have to live with it as Kaftrio us too important not to take. Kaftrio also has a negative impact on hormones & womens cycles. So in a catch 22 position.
Take HRT & risk breast cancer or stop Kaftrio & probably die within a very short time.
And I'm not being dramatic because i know i will die without kaftrio.
Wish there was a simple blood test to say, this is what is causing your anxiety 😕

[CLKD]

This is something that you live with 24/7.  Do U do your own physio.?  Life saving medication keeps you ticking over with a quality of Life? 

Have you considered anti-anxiety medication on an as-necessary basis?  Some anti-depressants can ease anxiety which is produced by hormones.  I suffer with panic attacks which floor me when they happen, an emergency medication keeps me alive, fortunately not required since 2019.  Of course, lockdown helped 

Could you send the question to Louise Newsome or Dr Curry on the Forum, for which there is a charge?  Can U remember how your anxiety was prior to beginning Kaftrio?

[Sheri]

I do my own physio, 3 times a day with a VEST machine. I take 89 tablets a day & numerous nebulised treatments. Very time consuming but its all i know tbh.
I have always suffered with anxiety but it would just gtumble about in the background. Alittle OCD but it centered around my medication. I hate missing a tablet...not that i ever do.
The first year on Kaftrio was great. I was one of the first patient on it in UK through compassionate grounds as i was putting bluntly dying. I was receiving palliative care & on morphine.
Two years in, that's when the intrusive thoughts & severe anxiety started & thats why Drs are thinking its hormonal (peri) because they think if it was Kaftrio, it would've started in the first year.
I think its a combination tbh. Especially as my anxiety/muscle pain & brain fog is more intense during my ovulation period. On a plus note, my brain fog has all but disappeared & it was quite bad at one point. I was a muddled up,slow & not sure what & when i was due my meds so HRT seems to be helping.
I was offered sertreline. I actually have it here but too frightened to take it. AD frighten me, another anxiety trait. My anxiety likes to taunt me with the worst case scenario options.
Do you know what your triggers are regarding panic attacks?
Is Louise Newsome connected to this forum or do you mean getting in touch with her personally?

[CLKD]

My triggers are embarrassing.

Dr Newsome at her Clinic.  Or send an e-mail to Dr Curry who owns the Forum, for which there is a charge for each query.

[Sheri]

Sorry i didn't mean to pry.
My triggers are quite embarrassing too. The only person who knows what they are is my old psychol. Can't even tell me new one what they are.

[CLKD]

You and me both  .  DH and I talk in code when panic sets in  .  U weren't prying, simply interested.

Do you have a plan?

[Sheri]

My plan is to stay on HRT for another month or two & if there is no improvement in mood/anxiety & aches, i will stop it & see if my CF drs will agree to reduce my kaftrio (even though it would be off license but has been done in some cases) & see how my anxiety is. The only downfall would be the impact it will have on my lungs & CF health.
And if that still does work...then i do not know lol
Wish i had the courage to start AD.

[CLKD]

Why alter something that works ?  It's like suggesting that I stop my ADs and Anti-anxiety medication, no way ....... 

What is the lowest dose of sertraline suggested?  Of course you don't want to feel worse which was always my worry    - eventually I found something that didn't give me side effects.  That was in the 1990s.

[Sheri]

I was given 50mg. I wanted to start at the lowest dose which my Dr said it was but looking online, i see some people are on 25mg. I would've liked to start at 12mg & ween myself on that way, but Dr won't give me a prescription for it.
I feel quite happy today with minor anxious moments. Either because my patch got wet lastnight & I'm not getting alot of estrogen so its making me feel lighter or the estrogen is actually starting to work now.

[CLKD]

It's such a guessing game aint' it!

GPs do have access to small amounts of some drugs to help weaning off, is it possible to break the 50mg in half?  When I've tried however, I tend to get a bigger half with the smaller one bouncing on to the floor   

Although oral drugs on the whole are made up so that the active ingredient is spread through the pill ........ so a small half may not work at all 

[Marchlove]

You guys are really communicating which is so lovely.

So many tablets Sheri , I wish i could be of more assistance other than to say ‘less is more’ sometimes.
This is something, for different reasons to you, I’ve gradually learnt in my journey.

When I first went on oral  continuous hrt many years ago I suddenly developed asthma age 53, never had before in my life! Put on inhalers but never really worked, so I gradually weaned myself off and asthma went away.
Then got quite server histamine reactions, put on usual blockers which helped for awhile, then they stopped working, so weaned myself off those as well.
I’ve weaned myself off SSRI’s and who knows what!

So, it just might be that your thoughts on cutting back your medication might just work for you.

X

[Sheri]

Thank you Marchlove.
If its not too nosy, could i ask what SSRI's you were taking? I think Sertreline is an SSRI or am i wrong?
Think I'm just trying to build up a picture of how other people do on Sertreline. But i do understand we're all different.
I am grateful to CLKD, for taking the time to reply to my post & advice she has given.
I've never been on such a kind forum before.

[CLKD]

Keep posting, let us know how you get on.  Shared experiences can help others 

Tnx too