Botox

[Polly]

My husband has bulbar onset MND. Excessive salivation has been a MAJOR problem. He has been prescribed 3 medications - hyoscine patches, atropine drops and glycopyrronium bromide. It was so bad that he agreed to try Botox. He had the injections in his parotid glands a few weeks ago. I expected one of 3 results: a) it didn’t work, b) it worked too well so he was really dry or c) it had a beneficial effect. I didn’t expect it to be totally unpredictable! On occasional days he is quite dry, but on others, or even at a different time in the same day(!), it is much, much worse! This makes it incredibly difficult to assess what medication to give him. Anyone else had a similar problem?

[Ellie]

Polly, can I just double check with you please - did your husband definitely only have Botox injected into his parotid glands, nothing into his submandibular glands? xx

[Polly]

Yes, just the parotid glands. The consultant said that one of the glands was smaller, so if the Botox didn’t work, she would probably inject the submandibular glands at a future appointment. It’s not so much that it hasn’t worked. It’s more that when it’s bad, it’s so much worse. I use a face cloth kept in place with a napkin chain, and a piece of kitchen towel on top, which I change frequently. For the last 2 days, I’ve needed to use a double layer of kitchen towel. It’s like a dripping tap. But at certain times, for no apparent reason, he’s really dry.

[Ellie]

I think that is the issue Polly.

The submandibular glands produce most of the 'normal' (at rest) saliva, the parotid glands produce saliva in response to stimulation. I don't know if the submandibular gland thinks it should get busy trying to produce extra saliva 😏

Both sets of glands need to be injected for Botox to be effective and, if that is not done, tbh there really isn't much point, as your husband found out. xx

[Polly]

That makes sense Ellie! Just a shame that his next appt is not for 4 months. And tbh it was a nightmare getting him there. He’s so very disabled and hospital transport is so uncomfortable. The good thing was that he also had Botox in his arm to help relax his hand, which was really clenched. And that has helped enormously!

[Ellie]

4 months is a long time... Will he go back on meds until the next appt?

I totally understand re the hassle involved in going for a procedure, I balk at the thoughts, so I'm glad he got some benefit from the arduous trip. xx

[John D]

My 1st post although have been reading forums for several months. I had radiotherapy last summer to manage saliva. Worked well for 3 months but weakening lip muscles has meant controlling saliva difficult again. Have tried various combinations of hyoscine patches, glyco and atropine which work to some extent. Now considering Botox. Does anyone have good/disappointing experience with it.

[Ellie]

John D A warm welcome to the forum John.

Hopefully you'll get some replies with personal experience of Botox, in the meantime, I know of one woman in particular who had regular injections, which worked a treat in controlling her saliva production. I used to meet her every week and, by about week 12-13, it began to wear off but, as Botox is meant to be given every 16wks minimum, there was a short period of time when she went back to the hyoscine patch, but her saliva was nowhere near as bad as before - so bear that in mind.

It is important to get the correct dose into the correct gland for it to work as intended. That said, sometimes they go light for your first time so, if that's the case, don't judge Botox's efficacy on that!

Have you spoken to your doctor / clinician about it?

Secretion management can be a huge quality of life issue for us and often what we wouldn't have dreamt of putting into our bodies prior to diagnosis, can be re-evaluated through a new set of lens.

Love Ellie.

[John D]

Many Thanks for the welcome Ellie. Due to discuss with my SALT next week. She is not keen due to potential risk to swallow. Palliative consultant arranging to refer me if I decide to proceed.

By the way, how do I add details of my condition to the bottom of each post like you’ve done?

[Ellie]

By the way, how do I add details of my condition to the bottom of each post like you’ve done?

Go into 'User Settings'
Click 'Account'
Scroll down to find 'Edit Post Signature' - type what you want as your signature.

Make sure you've ticked the 'Show Signature' box and you need to click the big 'Save Changes' button! xx

[LindaB]

Welcome John D great forum as you've already discovered 👍

[Ellie]

Palliative consultant arranging to refer me if I decide to proceed.

John, I should add that, if you decide to go ahead with Botox, the person to whom the consultant refers you *must* be experienced in neurological illnesses - don't be shy in asking who, where, what questions... xx

[John D]

Thanks Ellie. Care being shared with King’s so confident I’m in good hands.

[Deb]

Just wanted to wish you a warm welcome to the forum, John x

[Lynne K]

Welcome John and good luck for a solution to your saliva. Lynne x