On and Off

[Rafaina]

My partner now has v distinct ‘on’ times when his meds kick in and work and the v ‘off’ periods where he feels awful and cannot do much. He spends his ‘off’ times grabbing the arms of his chair and trying to hang on to normality before accepting he just needs to lie on the bed until he gets his next meds.

He is getting v frustrated at the difference between these two periods and how he can switch from one to the other rapidly.

The time he has ‘on’ seems to vary - if he has been particularly stressed or tired these better times are less.

Does anyone else have experience of this ? Any advice?

We don’t get to speak to the consultant until next month. Unfortunately only a tel call and first time in over 18 mths.

[FredaE]

Yes exactly. You have quite a lot of flexibility about when the meds are taken. you can time them so that he is Off when sleeping or being washed and on when he is due to eat or go to appointments etc. Similarly appointments can be fixed for the likely good times.I am not suggesting for one moment that you hop about all over the place but by observation you can find a system which works for you and bui.ld round it. untilit all changes of course.

Of course after 8 years on Sinemet I was confident of my understanding and determined that what I was asking for was the right thing to do. As always what is right for one patient is not necessarily right for another but it always helps to have records to base any action on.

Depending on the meds the dose can sometimes be increased. By the end of his life V was on quite a lot more than the recommended maximum dose of Sinemet which helped with his parkinson-like symptomsand divided into more smaller dosses at very specific times and that must have kept his symptoms under reasonably poor control rather than total disaster.

When I thoughtI he was worsening and could benefit with a slightly increased dose I checked and got agreement.but eventually there was no further scope and the drugs started to wear off until 8 years after he started it,the Sinemet as no help and there was nothing further to be done

I did keep charts of on and off times, how long it took to kick in and I found that it was best to split the doses and try to keep the levels up as once they dropped, it took so long to get them up again that they never really got up to the top level before the dose wore off. The original of this chart was taken for use by one of the teaching staff of his local hospital and I cannot remember the exact details but I have a copy somewhere if anyone is interested.

[Rafaina in reply to FredaE]

Thanks that’s really interesting. We need to map M’s on and off times so we can discuss with the consultant.

Xx

[Hellebelle]

Hi Rafaina,

It really is a roller coaster isn't it and so hard to manage. The advice Freda gives is excellent. I cannot add anything else I am afraid although there will probably be others with similar experiences.

Dad had MSA -C so he didn't find the meds helpful. He was trialled on them at the beginning before we were sure of what he was diagnosed with. I think the consultant used this information for diagnostic purposes as Parkinsons was suspected in the early stages.

I really hope you find a system that works for you. As with many things for this condition it will involve a certain amount of trial and error.

[seasidewaves]

Hello

It is a difficult situation to deal with as you mention so many factors affect how your partner is , and the advice you have received looks useful. I am also trying to work out how best to use medication with my husband . He has been experimenting with higher doses of co- beneldopa but seemed to become too sedated, as did increasing the frequency too often. We usually try making small changes a few weeks before an appointment with the consultant so we can report any consistent changes or problems, and the obtain other options for the next few months. Your partner may have exhausted all medication options, but thought I would share some in case he hasn’t tried them. My husband has ‘rescue’ dispersible madopar to use for quick, about 20 minute, response between regular doses and first thing in the morning. He has recently been prescribed Opicapone once daily which can increase the effectiveness and longevity of levodopa. As it is expensive it is usually first prescribed in a different form, Entacopone . I think the Opicapone has helped with movement and speech.

I hope I’ve not said too much about medication as I know it’s not the main solution, but if you want to know more please let me know. We are very fortunate to have regular contact with a Consultant , currently 3 monthly and with specialist nurses who liaise with him between appointments although it wasn’t like this when first diagnosed and I remember how difficult it was waiting a long time to review things. I hope you both find some way to improve things to enjoy the coming better weather.

[Hidden]

Sorry to hear that. People with MSA can feel dizzy as if they are in a boat. This can be when sitting, standing etc. Mood swings are also quite common and they call this emotional lability. This is know because my dad has MSA and he has this. The MSA trust have useful informations and it may help to speak with one of their nurses….

Dad has never taken any meds for his MSA accept when he was hospitalised. That was for his muscle spasms. He continues to battle on…

Sending you best wishes. Be strong.

[TK-67]

It is so frustrating. Mum is now on significantly less 'parkinsons' drugs. And she is way more stable and comfortable. It does seem to be a postcode lottery and getting consultants who have experience of MSA. Our original consultant had little experience and kept increasing the dosage including adding Entacopone was an absolute disaster. By moving she's now looked after by an expert who is prepared to try things around dosage, adding in other things like sleeping and anxiety meds and also adjusting the timing. But everyone is different.