PSPDrugs

[Purp23]

hello, I am looking for advice regarding PSP drugs and struggling to swallow them. My husband was diagnosed with PSP and his swallowing is getting progressively worse. Trying to get him to swallow his tablets is really starting to become difficult and choking is really becoming an issue. I have spoken to our GP pharmacists and they have changed some of the drugs but the Simnet Plus they can’t change and they tell me it can’t be ground down. What are other people’s experiences of this, what other alternatives are there, has anyone tried patches? I find it quite poor that with the PsP condition and difficulty swallowing that there aren’t other alternatives which can be administered easier! Any advice would be gratefully received. Thank you.

[honjen43]

Hi Purp23 When my hubby had trouble swallowing, the nurse gave him tablet on a spoon with apple sauce. Seems to be standard practice as have heard so before. And sometimes an extra spoon of apple to help get them down.Just make sure he has swallowed the 1st completely before 2nd given! You will hear a gurgle if not completely swallowed. And that can lead to further problems.

In my experience as a carer, nurses have not always come across PSP/CBD before and may not be expecting such rapid onset of problems.

Hope things improve, otherwise get liquid meds given through vein.

Hugs

Jen xxx

[Purp23 in reply to honjen43]

Thanks Jen for your reply. Will give it a try. Px

[Rose1sunflower in reply to honjen43]

Thanks for asking this question, I think we might be nearing this problem. Good luck with suggestions given.

[Hidden]

my husband’s physician switched some medications to liquid form but he just couldn’t take the liquid Tylenol because it tasted terrible. I read a hint somewhere to try coating the pill in butter or margarine and this has helped him (so far anyway!)

[Purp23 in reply to Hidden]

thanks for your reply, I really thought there would have been more meds available in liquid form due to the nature of this condition but it doesn’t seem to be. Px

[JarvisMarvis]

Hello, I give my husband his tablets with a spoonful of yoghurt. It helps them slide down a little easier

[Sweenstar]

A nurse recommended recently placing each tablet in a small spoonful of natural yogurt and it definitely helps/works. Try a small sip of water just beforehand

[Mpsp]

We have used successfully NUTRICREM prescribed on a tea spoon with the Sinemet along with many more tablets over several mouthfuls.You can also use a thick custard or yogurt.The NUTRICREM is also part of the diet plan from the NHS dietary service as we chose not to have PEG.

[Purp23]

thanks for your reply, I will look up Nutricrem. Px

[Red1990]

I am not familiar with "Simnet Plus" perhaps it is marketed under another name in the US. But my PSPer mother is on an orally dissolving form of CL aka Sinemet..here is a linkdailymed.nlm.nih.gov/dailym....

[easterncedar]

Sorry to say it, but you might also want to discuss with his doctor whether the drugs are worth the struggle at this point.

[WifeLilyRose in reply to easterncedar]

I agree with easterncedar above. My husband died of PSP and it was certainly one less stress when his GP put forward that many of his medications could be dropped off. His swallowing and choking continued to deteriorate and he got very tired, so it was good to be able to focus more on getting some nourishment into him before he fell back asleep. The speech and language therapist who assessed his swallow regularly, told us too not to try to give him water alongside food as it aggravated choking.

[Jkc1]

I hadn't heard of Sinemet but I can see it's one of the Parkinson's drugs - some of the Parkinson's drugs are definitely dispersible or liquid. Speak to the prescribing GP themselves if you haven't already, otherwise you should have a Specialist Parkinson's Nurse, so you could try asking them.My Mum isn't on any of the Parkinson's drugs and doesn't take tablets, she has most of the liquid meds through her PEG and has a couple of patches as well.

[Purp23 in reply to Jkc1]

thanks for your reply. I did speak to our consultant about alternatives and her only suggestion was patches, but still waiting to hear back from her! We are using custard to give the tablets meantime and that seems to be working. Px

[Sparkle57]

Like a couple of people above have mentioned, and I would also definitely recommend is yogurt, especially the thicker brands. It works brilliantly for my wife, who never had problems with swallowing large tablets, until recently with the progression of psp, but soon as we tried small dollop of yogurt on a spoon with pill in it, that seems to work each time for her, and really enjoys having an extra spoon or two of the tastier yogurt as a dessert, as well as on top of her breakfast cereals to help them slide down too.

[Purp23 in reply to Sparkle57]

thank you, we have been giving him his pills with a spoonful of custard and it’s seems to be working. Px

[horseandwolf]

unfortunately some drugs come in continuous release form meaning that tablet/capsule is designed to slowly release the drug over time and not immediately. Therefore if the tablet or capsule is crushed or bitten that causes the drug to be released more quickly thus possibly causing an adverse effect by getting too much drug too soon. the only recourse is to have your doctor change to some other drug if possible.

[messier]

I've asked the GP about stopping sinemet for my mum. I think we are waiting for referral back to neurologist for that decision. As Easterncedar says it may not be worth it. When it was prescribed it was with a faint hope that it might avoid slowness of movement getting worse. No idea what would have happened without it, but mum now only has very limited movement of her right hand which can't do anything other than hit a call bell so there's nothing left to prevent!