Meds not working well again

[PDsux_10]

My PD husband and has been taking 4 or 5 sinemet 50/250 CR for about a year and started using neuropro patch 2mg 6 months ago. He was on madopar for several years prior, but it was never right for him. Suddenly it seems his meds aren't working and the pd symptoms are severe again. The neurologist is suggesting dbs and doesn't seem interested in working with the meds anymore. My husband doesn't want dbs, and I am trying to find out what do people do when meds don't work anymore? What else can be done that's not invasive? Thanks for any help 🙏

[Zella23]

How long has your husband been diagnosed for? It does seem like a large dose of meds, although I know many people are on this amount.

Neurologists usually try adding on different meds such as MAO b inhibitors that help keep dopamine from breaking down or Comtan, entacapone. Are you able to change Neurologists?

They all seem to have differing views on meds and are usually willing to work with you. DBS isn’t the only option and not everyone is able to have that. My husband has been told he’s too old to have DBS. Fortunately his meds still work at the moment and the Neurologist works with him.

[PDsux_10 in reply to Zella23]

Hi Zella, he was diagnosed in 2017. I meant to say his dose of simenet is 50/200 CR. I think this is a high dose too, but even this doesn't work so great. I really think he doesn't digest well or something? Even when he hardly eats the doses always seem to be hit or miss unfortunately. The only added meds was the neupro patch and that was from the GP. The neurologist said he'd keep playing with meds as long as we like, but thinks it's futile and we should be considering dbs or duodopa., which are all really invasive. Changing neurologist is an option, but here in Sydney we are running out of options, since this one is his 4th 😞 Thank you for your suggestions and I'm just hoping he hasn't built up a tolerance to these drugs.I'm glad your husband has a good neuro, I think they are as rare as 🦄

Cheers

Mel

[JayPwP]

I think it must be a symptom of overlap with Levodopa. I have faced this problem. Being rigid and off even after medication.

The CR is supposed to last about 6 to 8 hours, that is the purpose of the CR.

Try to reduce to one CR 250 per 6 hours. Observe for 2 weeks if he feels better.

[PDsux_10 in reply to JayPwP]

Hi Jaypwp, Wow I wish this drug lasted this long! Unfortunately, my husband works fulltime and feels he has to have the drug every 3 hours to get through each day. Also, I wrote the wrong dose, he's on 50/200 CR. But as I mentioned this isn't working so great anymore. I think he might need a stronger dose of CR, but not sure there is one or if he should even? I will see if on the weekends he can hold out for longer periods in-between doses like you suggested, but maybe that won't he long enough to test your theory? I just wish he could get more time out of this drug. Thank you for advice, I really appreciate i t!Cheers

Mel

[Gallowglass]

I am 71 . Same here. Pretestimg now for DBS. Went to a seminar about DBS. They said 96% are glad they had DBS and wish they had not waited so long. Because PD is now a world wide epidemic you don’t want to wait too long to begin the pre-testing. There are long waits every step of the way. You can always back out before making a final commitment to do it. If the results are not good you can turn it off. But if you wait too long it might be too late to qualify. A steady decline is virtually guaranteed without DBS but with it his chances of improvement are excellent. Pray.

[Specterishot in reply to Gallowglass]

good feedback about DBS. Do u know the age cut off for the procedure?My HWP is an extremely otherwise health 77 year old. his symptoms are still mild, but in several years.. who knows. I Am concerned if he gets to where DBS is warranted, he may be too old to qualify for it. thanks and best of luck to you!

[PDsux_10 in reply to Gallowglass]

Hi Gallowglas, Thank you for your insight l will pass this message on to my husband. He has read up on the procedure and has watched many lectures etc. His issue mainly is that he hasn't really responded well to most of the medications neurologists have given over him over the years, and this makes him super skeptical that dbs will work for him. He says, "if I can't trust the meds which are gold standard, how can I trust dbs will work"? So I understand his worry. I was just hoping there was a fix to simenet CR that can help it be better, but it seems these drugs can just stop working altogether practically, which is scary and unfortunate. Good luck with your pre testing and please keep us in the loop on how you progress. Thank you again!

Cheers

Mel

[6daniparky]

Per mio marito ha funzionato lo Stalevo che contiene entacapone. Tanti auguri!

[PDsux_10 in reply to 6daniparky]

I would love to know what your message says, I think you are saying to try stalevo and entacapone? If so, does he take them with the simenet too? Thank you for your advice.Cheers

Mel

[6daniparky in reply to PDsux_10]

Scusa, non riesco a scrivere in ingleseStalevo 150 ore 7Xadago 100 + Q10+ Nac600 dopo colazione (breakfast)

Stalevo 125 ore 11.30, ore 15, ore18.30

Dopo cena (dinner?)Zoloft, Slowmet 750 (per diabete)

Sinemet rilascio prolungato ore 21

Melatonina 2 g

Stalevo contiene già entacapone.

Auguri di ogni bene!

[PDsux_10 in reply to 6daniparky]

Oh thank you for translations, I'm def gonna check out with the neuro re stalevo and might add in azilect too. It's all very much like being mad scientist to have all these drugs and supplements to.keep ones body in order. Thank you for your advice

[Zella23]

My husband was helped by Rasagaline rather than keep upping the dose of Madopar! It definitely helps by not allowing the dopamine to break down. The meds might be gold standard but finding the correct dose and balance everything out is a nightmare. Some of the newer drugs such as Comtam and Entacapone allow the dopamine to work longer. Takes a while for your body to adjust. Worth trying if he’s not keen on DBS.

My husband was retired when dx so didn’t have work thrown in the mix. Upping the dose just kept giving him dyskinesia. He takes a variety of meds now, including the Neupro patch, but less dose. He has adjusted to lower doses.

He does use the Redlight hat from your part of the world and has a Cue1 as well. Think they do help.

Good luck 🤞

[PDsux_10 in reply to Zella23]

Hi, My husband was worried zbout adding azilect, but I'm thinking this might have to be the next step to help him maintain better. Is your husband on Simenet CR too? I'm gonna have to have the neuro revisit the drugs again. I was also looking into Stalevo, but maybe that's not better than the Simenet? It gets very convoluted if you ask me. My husband is very sensitive to the drugs as well and tries to run in a low doses, but it's impossible whilst he still works. We do stop all meds at night, usually after 10pm and he doesn't start dosing again until 830am, wrong or right that's how we do it for now.My husband uses the red light too, so glad your husband was able to get that! I would love to get my hands on a CUE 1 but they are not available in Australia 😢

[Zella23]

No he has only taken Madopar IR and is now down to taking 2x100mgs a day, 100 mg in morning, and one late afternoon and half dose in the middle of the day. He takes Rasagaline split dose as 1 dose was causing more dyskinesia in his case, also has 2 Amantadine, they help with dyskinesia too.

Last time we visited the Neurologist he witnessed the dyskinesia and started him off on a Neupro 2 mg patch to try and help with the mix and to try and stop dyskinesia. He manages with this and has nothing at night. He used to take 4 x100 mgs a day but side effects were not good.

He is allowed up to 4 Amantadine daily but an increase caused night time hallucinations which he wasn’t too keen on. Taking 2 seems ok.

I don’t think there’s any right or wrong in the amount of drugs taken but the side effects did mount up with my husband so having other drugs has helped and allowed his C/L intake to lower.

He has recently restarted on his B1 again after a long break and has been taking liquid fish oils and a low dose of CDP citicoline which seems to have helped him. Also takes organic cinnamon which fortunately he loves. Does daily brain training on the computer.

Although it’s hard to say if any of these make a huge difference, he can function reasonably well, walk, cook and draw as well as handling all our bills etc albeit a bit slower.

All he best to you and your husband. We recently had an email saying Cue1 has made progress with being sold in other countries so maybe it might be available soon. It really helps with the pace of walking and may indeed help with other symptoms too.

[PDsux_10 in reply to Zella23]

Hi Zella, It does sound like your husband has a stable regime now, this is key I think. So happy he is able to do everything he does and I'm sure all those supplements and wearable devices are helping. How much CDP citicoline does he take and which brand? My husband takes cinnamon,tumeric, magnesium, mannitol, B1 and a whole list of supplements! I make sure he takes days off as well.I have him get regular blood tests to make sure we are not overdoing it. I call him my guinea pig. I can't wait for the CUE 1! Can it be purchased outright, or is it prescription only? Anyway, we have cut back on the simenet CR to every 4 hours now, and if he's feeling like he needs a kick he'll take some mucuna 40% ldopa. This seems to be helping. I do hate and so does he, adding in more rx drugs. I want less is more to be the answer to his struggles 🤞 Thanks again for the chat.Cheers

Mel

[Zella23 in reply to PDsux_10]

Hi, my husband takes 250 mgs of CDP citicholine by Jarrow. Reluctant to take more although Dr Mishley suggested 500 mgs morning and evening. He takes other supplements but usually reluctant to take high doses as too much pill swallowing.

I’m not sure in the U.K. whether or not there is testing for different types of B vitamins, our local hospital where the blood tests are carried out will test for vitamin D, as I need that as well, but when I asked about other vitamin tests nothing came back although it was written on the request form.

The Cue1 is a one off payment but we have had teething problems with it so have needed the support of the company so if you bought one and had issues with it, it could be a problem. It is also supplied from a waiting list, I think my husband waited a couple of years for his one.

All the best to you both.

[PDsux_10 in reply to Zella23]

Hi, Thank you for the CDP info, does Dr Mischley have a list of suppleness that PD patients should be using? I think I only know of the lithium supplements that's been suggested. Anyway, my husband is like yours, hates all the pills and vitamins. I feel bad for them. Def get his vit D checked and calcium next time he gets his blood work up done. We have been on CUE 1 waiting list for a long long time. I just don't think it's for international folks yet, but I could be wrong. I should maybe ask someone directly how it will be distributed one day. I do hear good things about it.

Thank you again for the info. Hope you have a lovely weekend!

[Zella23 in reply to PDsux_10]

Thanks you too.

Dr Mischley does have a list of supplements that patients had found useful from her questionnaires. It is on a post here but I can’t find it. I’ll have a searchs and see.

I know your husband isn’t keen on Rasagaline/Azilect, but it did allow my husband to take less C/L and together with Amantadine it did and still does help with dyskinesia., He recently stopped taking the Rasagaline for 3 weeks, and restarted it, realising how much it helped him! He split the dose this time round, which is better tolerated for him, keeps it in his system more evenly.

Yesterday evening, after a busy day with fitters, re carpeting pretty much most of our house and both of us helping too. My husband started getting restless later on in the evening and realised he d forgotten his afternoon and evening meds but didn’t seem to notice!!!! PD is a very strange condition!

Take care.

[PDsux_10 in reply to Zella23]

Wow, thanks for looking into the Dr Mischely info, I will research it as well. I'm going to ask the neuro about the azilect again, since most days lately he seems to hit a brick wall and can't seem to snap out if it. I just mean he seems to go into the off zone instantly and the pains he gets from the dyskinesia become unbearable etc.

I like the idea of splitting the dose of azilect. It sounds like your husband has found a way to better manage his PD by doing just that. I was surprised he stopped it cold turkey for 3 weeks. I was going to ask if my husband doesn't like the azilect if it's ok to stop using it immediately and it seems ok to do that if necessary. How long has your husband been on azilect? Do the doses need to be increased with time like c/l?

Yes indeed parkinson's is very strange and it's never a dull moment 😒

[Zella23 in reply to PDsux_10]

The dose for Azilect is 1 pill a day and no more. We have to cut it in half for a split dose, which it will do, not always exact, but he did start on that dose about 3 - 4 years ago.

We knew he wouldn’t have too much effect going cold turkey as he forgot to take them on a 5 day holiday in the autumn and apart from getting slower no effect noted. It seems to make the dopamine more effective as it stops it breaking down so quickly. We did note dyskinesia slightly increased on it hence amantadine was added, which works well.

He has remained on the same dose of Madopar since then. So about 3 x 100 mgs Madopar per day. It’s a low dose for someone who has been dx for 9 years but he manages ok on that.

My husband has never had on or off times with meds he might get slightly slower but can always function. Just shows how different we all are.

[PDsux_10 in reply to Zella23]

Ok thanks for explaining that re azilect. How far apart does he take the split dose usually in a day? Your husband is lucky he can manage on a lower dose of madopar for so long. My husband had to stop taking it, the Dr had him on such a high dose it was killing him! That's why we changed neurologists and the new one put him on the simenet cr. But that's now the issue. I feel like there's never been anything really reliable in my husband's case. It's always been hit or miss on a daily basis with the meds unfortunately. His metabolism is super fast and I think that has a lot to do with it,, but the Dr wouldn't entertain that theory for some reason 🤔

[Zella23 in reply to PDsux_10]

He has one in the morning about 9 am and half at 10 pm. Evens it out a bit but he’s only just started doing this.

[Esperanto]

PDsux_10, you have already received some helpful tips, but I have the impression that there may be more going on here. While it is true that we all experience Parkinson's progression differently, this sudden deterioration could indicate an underlying issue.

I am particularly thinking about the balance of his B vitamins. The high dose of Carbidopa in the C/L medication may be causing the breakdown of B6, resulting in a deficiency that affects dopamine production and the effectiveness of his medication. You may have recently had the vitamin B levels tested, but in addition to the usual B1, B9, and B12, I would definitely recommend checking his B6 level (and possibly B2 as well), if not done yet. After that, you can consider appropriate supplementation. It has personally resulted in an "awakening" for me!

I believe your husband's hesitation to start Azilect is justified. With current knowledge, the side effects seem to outweigh the benefits, as confirmed by my new young neurologist.

You did not mention addressing crucial PD symptoms that also play a significant role in medication effectiveness: poor sleep, constipation, and stress. In this regard, I recall your comment from a year ago about your husband wanting to retire, while you believe it is better for him to continue working. However, I disagree with you on this. If possible, prioritize a more or less stress-free existence. It is an absolute prerequisite for a successful approach to managing your PD! 🍀

[PDsux_10 in reply to Esperanto]

Hi Esperanto, Thank you so much for your thoughtful reply. He does take B1 and B3 and B12. He once had a blood report years ago saying his B6 was off the charts and we weren't even supplementing for it, which spooked us and I never really looked into adding it to his B regime after that. But now that he's been taking levadopa for years, maybe we have to look into it like you suggest.We decided not to start the azilect, he's been offered it for years, but never wanted to take it. We are now trying to space out the simenet CR to every 4 hours and mucuna if he's feeling off. As for his symptoms, the main ones when he is off are he's very slow , very stiff, strong tremors in right arm and left leg and severe pain in shoulder, back and foot. When he's had too much or too little dopamine, he has bad dyskinesia or dystonia His sleep is ok, he takes melatonin and stress we try to keep very casual in all areas of our life.

Now the issue of retirement, he'd love that, but sadly financially we couldn't survive and that stress would really be the last thing we need. Worrying about rent and food is just not ok. So he has to work still and thankfully, his co-workers help him when needed, and I'm grateful he's got some support system there. And it keeps him social, which is healthy for him, and we actually work together alot of the times. So, yeah I'm hoping we can figure it out. It's just such a struggle and I know everyone that suffers this disease is hurting. I'm just hoping we can all get through it as gently as possible 🙏 Thank you again for taking the time to reply.

Cheers

Mel