Looking for advise

[shelly21]

Hi everyone. I've not been posting much. I've had a UTI since Xmas and on my 4th type of antibiotics.

Then I picked up a nasty cold that left me with a vile cough.

My saliva is increasing and my gp prescribed atropine. However my palliative care doctor doesn't want me to take it. She says it will affect my secretions.

Anyone have any experience with this please.

I've been reading all your updates etc but being ill and bit down I wasn't inputting x

[Hope]

Hi shelly21 I am sorry you have had a tough time lately. I am a bit confused by your gp saying atropine will affect your secretions. Surely that is the intention, or am I missing something?

I have been taking atropine for several months. It has worked well although just lately it has not always been quite so effective but I am persevering with it for a while. x

[Zante]

shelly21 I cant offer any advice but wanted to say am thinking of you. I been feeling really down also and feel bad I haven't been contributing at all but have also been reading the forum to see how people are doing. Just wanted to say you are in my thoughts. xx

[Ellie]

shelly21 I think that, after no response from 4 different abx, it's looking as if your klebsiella pneumoniae might be resistant to many abx 😬 - has your GP mentioned this possibility? Have you been prescribed either nitrofurantoin or fosfomycin?

As for the atropine - I presume the palliative doctor is concerned about its possible effect on your bronchial secretions but what, she's happy to have you unable to cope with excess saliva, or perhaps she suggested different medication??

Any med which reduces saliva production has the propensity to thicken bronchial secretions but, as with many treatments, it is worth trying and at different doses. If atropine doesn't suit you, there are alternatives.

I take glycopyrronium to control my saliva and, even at a high dose, my bronchial secretions aren't impacted. The biggest determinant of my bronchial secretions remains my water intake.

Sorry you're feeling miserable hun. xx

[shelly21]

Ellie I'm now on ciprofloxacin and the gp doubled the dose to 1000mg. Yes the type of bacteria is resistant to antibiotics. The side affects are nausea and diarrhea of which im sadly experiencing but i am going to finish the week course.

Hope I'm going to continue with atropine because it does help. I know I may have to switch later on.

Zante I'm sorry you're feeling down. I think this season is the worst as we get cabin fever x

[Zante]

shelly21 that sounds really rotten side effects to try and manage on top of everything else. You are brave sticking with them and finishing the course. Really hope it works.

Am down cos am noticing quite a lot of changes all of a sudden and also finding the process of wet room discussions, contractors saying different things, etc really hard. Picturing needing a wet room to cater for a wheelchair is beyond me as I have been burying my head in the sand!

All the best xx

[shelly21]

Zante I think we all bury our heads from time to time. I was always told that als declines gradually but continually. I've certainly experienced that. Its hard to stay ahead of the game but its the only way isn't it.

I get down for few days then start planning for the next few months. x

[Zante]

shelly21 I had previously had changes but only small ones and then I would plateau for several months and stay the same. But this time the deterioration in certain muscles and abilities etc hasn't stopped and is continuing. I am hoping that it will ease up soon. Things like going downstairs my quads shake and feel like they are going to collapse etc. Just trying to keep going when sometimes I feel like giving up because the future frightens me. Sorry to moan!

I really hope that u can some how get this uti sorted and am sure when that is out of the equation and with the spring weather to look forward to....! Just being able to sit outdoors in some sunshine 😀 xxx

[Ellie]

Yes the type of bacteria is resistant to antibiotics.

If the cipro doesn't work Shelly, it just might be worth biting the bullet and getting IV combination antibiotics 😬 you can't keep being prescribed ineffective abx... xx

[Ellie]

Zante So sorry you're down in the dumps 🤗🤗😘😘

[Zante]

Ellie thanks my lovely. Mum is just taking me out for a cuppa and some retail therapy ( good job can't eat tomatoes anymore as none in sight down here!!). The builders from the council didn't even show up or let us know they weren't coming so struck them off list!

Good idea for the iv antibiotics for Shelly.

Will be back here when mini shop is complete!! Xx

[Deb]

It's not surprising you're fed up Zante and I'm so sorry. I think this stage is especially hard when things are changing and we're struggling to walk.

I find I get down with each loss of function and then I try and adapt ( not aways successfully). At the moment it's cutting up food that's a new problem( and maybe just as important drying my hair🤣👱♀️ !) I keep reminding myself I'm still lucky to be swallowing ok 5 years after diagnosis. My hubby is fine cutting up food but he has a long way to go to learn to do a nifty blow dry !

I had alot of help from my OT to design a wetroom before I needed one and I admit to crying when they took out the bath. However I love my wetroom now and have music, diffusers and scented candles ( away from the shower🤣.) and I always make sure it's toasty warm🔥

I hope you enjoy your retail therapy. Sending hugs x😘🤗

[Deb]

Oh shelly21 I'm so sorry you're having such a tough time. As Zante says, you are brave to carry on with antibiotics that have horrible side effects. A UTI is so miserable, especially when you're not mobile.

I've no suggestions unfortunately but am sending thoughts and hugs x😘🤗

[Zante]

Debs I did chuckle at your comments !! I too am having problems drying my hair because my arms get very tired, I cant use a hairdryer because I have really curly hair and so it makes me resemble Dora the Explorer ( or so I been told!!). I discovered today I dont have the finger strength to carry a cup on a saucer , this went everywhere! But a mug is alright. I am probably very lucky compared to most in that it is slow progressing for me, but I admit I do get upset when changes happen. I will finish here cos I have jumped on Shelly's thread, but wanted to thank you for your reply. Am sure your hair looks lovely xx

[Claireflo]

I can't offer any advice shelly21 as Dad's consultant won't prescribe altropine drops for him. She said a potential side effect is a lowered heart rate and possible confusion. He has been referred to find out more about botox for saliva although only after she told him in her experience it has little benefit.

I hope the drops work and the UTI finally clears up. Its bad enough dealing with all the effects of MND without having things like UTIs to contend with. I'm sorry you're feeling down with it all, totally natural with everything you are dealing with. Do you have any counselling support available to you? Xx