Rilozole

[powdav]

Hi, does anybody know if Rilozole acts as an appetite suppressant or is it just another symptom of this awful disease?

[LindaB]

Hi powdav I've taken for just over 2 weeks....appetite seems the same....good and bad days. I'm not sure if it's a known side effect though....others on here might have more insight 👍

[Ellie]

powdav Hi David.
You've been taking Riluzole for 6 months - hopefully the loss of appetite hasn't been going on for that long?

Loss of appetite isn't a listed side effect, but nausea and tiredness are, which certainly wouldn't give you an appetite... I presume you've had some blood tests and are tolerating Riluzole.

Usually, common culprits for reducing our appetitie include tiredness, lethargy due to breathing problems, constipation, dehydration, low mood, side effects from meds (not Riluzole) - could any of these be a factor for you?

As with any unexplained medical issue, if in doubt, have it checked out by your doctor or nurse.

Love Ellie.

[powdav]

Hi Ellie,
Thanks for your response, yes, I have had blood tests and they appear ok with regard to the Rilozole. I have had no appetite for months now, after a small breakfast I can go until bedtime without thinking about food. I am using a zimmer now so obviously no exercise and have found out I need oxygen as my sats are fluctuating dramatically. I suppose not being able to chew and swallow as before does not help. Just appear to be on a dramatically slippery slope now! Love David.

[Ellie]

I have had no appetite for months now, [....] have found out I need oxygen as my sats are fluctuating dramatically. I suppose not being able to chew and swallow as before does not help.

Oh, that's not good, David - have you lost much weight? If you want to get a feeding tube and haven't discussed it with anyone yet, it might be time to get the ball rolling on that.

Has someone told you that you need oxygen specifically? Or maybe it was help with breathing using a machine - there is a whole new language to learn, lots of acronyms, maybe you heard someone use the term NIV, BiPAP or Nippy?

If your oxygen levels are low, that could explain your lack of appetite and using non-invasive ventilation (NIV) could help with that.

Are you being well looked after by healthcare professionals? xx

[bromleycross]

Hi David
I can emphasise over the slippery slope some days I feel great others not so great think it’s part of ALS . My appetite varies from day to day but I tend to eat less

[powdav]

Hi, I told my MND nurse many weeks ago that my sats were down (using my own oximeter) but she said it could not possibly be accurate.
Saw my GP and he got one reading of 95 so said all was ok after carrying out checks on my chest, no infection.He put any breathing problems to be associated with the disease.
Last Thursday I was really out of breath with my readings all over the place so I got my GP to call and was at the surgery in 15 minutes.
She did a lot of readings using my device and hers, said I must go to A&E immediately as she agreed that my readings were not stable and immediately called the hospital and said I would be seen straight away.
I was in there for 7 hours and the outcome is that I need oxygen in the home, not heard anything at present. Getting more help from our local health centre than the MND clinic.
I am concerned for my partner now as she is having to do much more for me and she is no spring chicken at 77.X

[LindaB]

powdav hi and just a thought that there are other forum threads on here about use of oxygen and the risk for those living with MND.....we all carry an alert card warning health professionals as I'm sure you know. 👍

Its frightening to feel out of breath so I hope you're feeling a little better...

[Lynne K]

Oxygen is dangerous for us David as can cause a dangerously high toxic level of carbon dioxide. Not all professionals are aware of this. Assessing you for a NIV might be better. Can you ask your MND clinic to advise whoever is suggesting oxygen to you? I hope that your breathing gets sorted out. Love Lynne x

[Ellie]

I was in there for 7 hours and the outcome is that I need oxygen in the home, not heard anything at present. Getting more help from our local health centre than the MND clinic.

David, I'll add my hesitance/vehemence *against* oxygen use, especially in your home, it's a big No No...

Respiratory failure in MNDs is restrictive, not obstructive - NIV use should increase your oxygen levels whilst at the same time, allowing for expulsion of CO2.

Love Ellie.

[powdav]

Thanks Ellie, Lynn K and Linda B, I did not realise about the oxygen When they were doing tests in A & E last week, nobody mentioned this either. I was on oxygen for seven hours. However next week I am expecting a visit from a dedicated nursing team re an assessment. Thanks again for the heads up.X

[Ellie]

powdav Happy to hear that your breathing will be assessed properly David. xx