Feeling worse/weaker on meds…

[schlep68]

Hello ALS community,
I was recently diagnosed with ALS (via 2nd opinion in September 2022), and am finally on all three approved meds (riluzole, oral radicava, relyvrio), plus a plethora of supplements. I have noticed that I actually feel worse on these meds. I am dizzy, and my walking is quite a bit weaker on them. after just three days. I feel better and stronger off these meds. When I first started taking riluzole before the other two were approved by my insurance, I stopped taking it after a month, as I felt terrible on it; within a week or two of taking it, my legs felt quite a bit weaker. Anyone out there have a similar experience?
Thanks for your input!
Belinda

 

[Nikki J]

Rliuzole makes me transiently dizzy. No to weakness. I have heard people on iv radicava say they believed
it increased weakness though more said it did not. We are all different. If you are taking a lot of things they a might be working against each other or b your body is using too much energy trying to metabolize. You said plethora so it sounds like a lot?

sorry you have to join us

 

[Buglaw]

Riluzole definitely causes fatigue for me. no real side effects from the others, I think. Sorry to hear about your diagnosis.

 

[Tomswife]

Buglaw. You may want to limit supplements to those that are critical. My PALS takes multivitamin and super B. All others are RX. Even supplements have an impact on our body and liver function. May also want to request blood panel for insights.

 

[affected]

Sorry you are joining us here.
I would suggest you might want to look at your list and prioritise which you most feel might help and start taking just ONE. See how you go for a couple of weeks, then add just ONE more.
It is impossible really to tell what is causing the reaction if you have started taking a whole bunch of stuff pretty much at once.
Keep a diary or spreadsheet of what you add and any response.
Hopefully over the next couple of months you can find a blend of what you are happy to take without side effects you don't want to deal with. Hope that helps.

 

[KimT]

Hi Belinda,

When I was first diagnosed I got all my vitamins, minerals, and microbiome checked. I slowly added supplements to correct deficiencies and address my general health. As time went on I added supplements one at a time to make sure they didn't upset my stomach, increase GERD or make me feel "off."

I couldn't tolerate Riluzole and didn't try the other two. I also had a very hard time with Tudca and have tried to start it three times. It messed up my stomach. My stomach and a benign heart arrhythmia stopped me from taking a few supplements and meds I'd otherwise try.

I've had some success with supplements reducing my free copper to below the so-called dangerous range, decreasing homocysteine, and increasing glutathione. I hate taking supplemental iron but my ferritin levels run below normal if I don't. I went off my healthy eating plan during the hurricane and never went back on. I feel like crap because of it.

In my opinion, diet, supplements, Rx meds can make you feel better or worse and, for me, it's all about quality of life. I no longer beat myself up over what I can't tolerate. I do know that eating processed food is a big no no for me. It may be something that runs in my family because my adult niece says the same thing. We both have Hashimoto's and that might be the common issue.

I also found the timing of my supplements makes a big difference, just like the timing of eating.

 

[Lynn Griffin]

I was diagnosed in August of this year. I am now on all 3 meds, Riluzole, Radicava, and now Relyvrio. I was just having weakness in legs. I have been in a wheelchair for a few months. Now my right arm is getting weak. It is so frustrating. Hoping one or all of the meds will start helping very soon.

I hope you start feeling better and stronger.

 

[MupstateNY]

KimT, I'm curious what your non-healthy eating is like. Me, I'm tending to overeat because I'm just enjoying eating so much. For years I was a brown rice gal but right now my FAVORITE food is white sushi rice with soft, silken tofu, Earth Balance margarine, tamari. I find it hard to stop serving extra helpings!

Up until a couple weeks ago, when my older son, on his visit to us, started me on the horrible but delicious white rice trend, my favorite food was broiled salmon. I still like that a lot too. I guess I have a limited repertoire because I keep going back to my favorites favorites, but I also enjoy the roast chicken from the grocery store. I like the back, wings and thighs. I have small pieces of breast along with non-silken tofu in salad. I've started eating little breast pieces with microwave potato and gravy. I'm transitioning away from the frozen French fries you cook in a hot oven -- sometimes they're hard to swallow. I'm pretty anti-sugar still -- started this habit when my younger son was found to be insulin resistant at age 10. (9 years ago!)

I do have a cooked green vegetable every day. I like broccoli, green beans, asparagus and --yum-- edamame in the pod.

Bon appétit!

 

[KimT]

Bad eating, for me, is processed food, the exception being organic Greek yogurt. I try to eat a diet without grain, soy, and only organic when possible. Typically, I’ll have a high protein/fat shake for breakfast (1,000 cal.) and another meal five hours later (salmon, veggies, sweet potatoes, fruit for dessert and maybe some extra dark chocolate (1,000 cal.). If I’m still hungry, I may eat some yogurt with cinnamon, ginger, and ground flaxseeds. I rarely eat after 4pm. I only eat out a few times a year.

 

[MupstateNY]

Ha ha -- your day's food sounds very healthy to my ears! I'm with you re the white rice but I just can't help it at this time, knowing that at some point I may not be able to eat by mouth any more.

I'm lactose intolerant but occasionally I have an almond yogurt. It's convenient for early appointments, when I can't eat at home before leaving (because of having to wait an hour after meds.

I'm also allergic to chocolate and carob (=locust bean gum) but I don't mind, I felt so much better after I figured it out at age 31.

I've got some salmon in the broiler right now!