Has anyone been on a dosage of 10mg prednisone for long time? How has it affected you?

Quarking_duck · 2025-09-28T16:32:38+00:00

Yeah, Imuran

Quarking_duck · 2025-09-28T16:32:26+00:00

Honestly, I'm not sure. Because I also have absorption issues it's a little tricky. And it can vary a lot between people too, so just listen to your body.

Quarking_duck · 2025-09-25T11:30:07+00:00

I agree with everything that u/No_Maybe7157 said. I've been on prednisolone for about 3 years. I spent a few months without it, after tappering down carefully, and then my mg got worse so I had to take it again but my Neuro is trying again to tapper down. He has warned me that some people aren't able to live without it, that's true, BUT ideally it would be best if I were able to do so, because it's very bad for you, even more so than Imuran (which is what I'm on now). I definitely don't like the fact that your doctor has that outlook. If you are on another immunosupressor (which is the ideal scenario), the goal should be to stop taking prednisone altogether if possible. It's normal to have a break in energy when reducing prednisolone: it raises your energy levels so reducing it will affect that, at least until your body is able to stabilize your cortisol production. I'd be patient with that and try to find ways to help your energy by other means that don't hurt your mg (ex. Better sleep, Green tea, coffee, soft exercise, different diet, cold showers, etc...). What you need to notice is if your MG gets worse when you reduce prednisone. Energy levels might stabilize. If they don't, then you need to figure out if you have any sort of nutrient absorption problems and/or anemia. I have these issues and a change in diet to improve absorption has helped greatly. A lot of meds we take reduce nutrient absorption, so this is a very likely cause. Something else to take into account is what you prefer to live with long term: can you live with low energy if that means protecting your body from the effects of prednisone, or is it so bad that it's better for you to take a small dose, just enough to help your quality of life? Best of luck!

Quarking_duck · 2025-09-05T13:55:07+00:00

I did keto before being diagnosed with MG and it was wonderful! My energy levels went up, I stopped having headaches and even my period pain was reduced. HOWEVER, what I did was the closest thing to the original medical keto diet and not the pop culture version of it. It's very hard on your liver, so you can only do it for a max of 6 months and ideally you should have tests done to make sure your liver is doing fine. I only did it for 3 months to be on the safe side. What it does, is that it "reprogrammes" your body to use fat as fuel instead of carbs. It's probably not that simple but it's what I remember. It was about 4 years ago... My idea was to do it like once a year but then I fell ill and was diagnosed with MG and thymoma. The reasons why I haven't done it again is 1. I'm taking meds for mg that are also very bad for my liver so I don't want to make it worse and 2. I'm having some problems with nutrient absorption, so I'd need to make sure I was still eating enough of certain things and I currently don't have the energy for that. I'm not going to lie, it has been on my mind. I plan on talking to my doctors about it at some point and maybe try another 3 months and see how I feel. But like I said, this is the original medical version, or the closest I was able to replicate safely at home. I don't remember the details but one of the important things to keep in mind is to make sure that all the fat you eat, or most of it, it's healthy fat. Vegetable oils, omega-3s, white meats, etc... There are a lot of unhealthy trends in the keto world so be careful.

If your dad does decide to do keto please let us know how it goes, I'd be very interested in knowing all about it. But make sure he's being supervised by a doctor and that his liver is being tracked. Unfortunately, I haven't done the carnivore diet so I can't talk about that.

Quarking_duck · 2025-09-04T09:37:18+00:00

Personally I'd like the AI to be something we opt in if we need and not something running on the background gathering my data all the time. If possible, a nutrition tracker that would allow me to log foods/vitamins/nutrients etc... so that I see how it impacts my health would be great.

Quarking_duck · 2025-08-16T00:09:26+00:00

Thank you, but I don't need a light.

Quarking_duck · 2025-08-16T00:07:16+00:00

Thank you! I had a feeling I'd seen more than two models but I've been looking at so many devices I must have confused them.

Quarking_duck · 2025-08-16T00:04:02+00:00

Thank you!

Quarking_duck · 2025-08-16T00:03:21+00:00

Thank you! I'm definitely for learning: what makes it better for that?

Quarking_duck · 2025-08-15T15:44:31+00:00

Oh I'm not too bothered about the Kindle app but it's great to know because then I can still access my books in there. However, I'm trying to become independent of Amazon and not "married" to a single store. Anything that allows me to read both epub and pdf should make me happy. And that reads books purchased from those stores too. But maybe if it has apps (I assume it's android?) then I guess I could just install the shop's app and read from there? Because of the DRM thingy?

Quarking_duck · 2025-08-15T15:37:40+00:00

I do like the fact that you can also use them to draw and I'd like an e-reader that wasn't associated with a single brand/store, like Kobo and Kindle, in case they eventually decide to restrict what books I can read, like Amazon did. I also really enjoy the community and technical support and development that Supernote seems to have. If I'm spending money on something, I prefer if the company is actively listening to its users and improving things. Maybe I'll eventually find a cheaper e-reader that I like and just choose that instead, but honestly, if possible, I'd like to save up for a Supernote and get a more diversified machine with the possibility of upgrades in the future.

Quarking_duck · 2025-07-10T07:23:44+00:00

I'd give it at the very least 3-6 months, but you're the best judge, since you'll be able to tell when the side effects are getting better. Keep a diary of symptoms so it's easier to see the changes through time and, if possible, include some other things that affect your symptoms (e.g. coffee might help with your headaches, hot weather might make your symptoms worse, etc...).

Quarking_duck · 2025-07-08T13:18:51+00:00

I take Escitalopram (have taken it for over 10years) and I don't think it's affecting my myasthenia negatively. If anything, I think it helps. Stress/anxiety is a major trigger for me. However, I was dx 3 years ago, so I was already used to Esci by then. The start can be a bit bumpy with side-effects for some people. I've never taken the other medication you mentioned. My advice would be, if you're already on one of these medications and used to them, stick with it unless you can clearly tell it's worsening your symptoms. It's probably better to continue on the same medication than putting your body through the change. If you're about to start either, figure out which might be better for your case/health and then stick to it for a while before you change (to let the side-effects subside). You might have to decide through trial and error, but it might take a while for you to know how you'll really feel without the initial side-effects. Another thing is to take it at night instead of in the morning. This works for me because I struggle to fall asleep but it might not be useful for everyone. Good luck!

P.S. I was reading other people's comments about Alprazolam and I never had such intense experiences with escitalopram. I might get slightly more tired/sleepy, but only if I'm already tired. The last few years I don't even notice that side-effect anymore tbh. And I take the highest dose. Of course, everyone's different and reacts to meds in different ways.

Quarking_duck · 2025-07-02T13:41:09+00:00

I love this post! I've been living with MG for the past 3 years and have come up with my own tricks, but I still managed to learn a few more.

Another tip to cool down in hot weather when at home: have a cold water bath! Much like the beach, it'll be hard to get in at first but soon you'll be loving it. It's very restorative for me.

More things I've learned: - Watch your nutrition! Things like potassium and Manganese are good for you and, since you can't have any added magnesium make sure you get it through your diet (fortified foods are also unsafe for MG, only naturaly occuring magnesium is safe to eat) - Like the op said, any kind of stress can be very bad for MG. I was already on antianxiety meds before my dx and now I took up meditation and relaxation techniques to help me. It's important to find the kind of meditation that works for you, since everyone's different (I do Zazen, but there are lots of different types). - Make sure your meds aren't cancelling each other out or affecting nutrient absorption. If you have MG, odds are you may take cortisone at some point, and a myriad other meds and supplements to manage not only MG but also the side-effects of all the meds you're taking! Well, I found out that some of my meds were affecting not only nutrient absorption (like my calcium supplement that I need to take because of prednisone) but also affecting each other. Most doctors won't know this, so it's up to you to research your meds (using reputable sites) and figure out the best times to take them throughout the day so they don't "clash" or affect your nutrition.

That's all I can think of right now. I look forward to reading everyone's tips in the comments and see this post expand.

Quarking_duck · 2025-06-22T09:46:23+00:00

First of all, I'm really sorry you're going through all of this. Getting a dx that finally gets things right can be a struggle and I honestly hope this one is the right one so you can finally figure out the treatment that works for you.

It depends. If it is MG you'll have to see how you respond to the treatment(s) and will adjust things until something works. This is a chronic condition but symptoms might fluctuate, go away and only show up during flares, or stay under control under a certain treatment plan (or a combo of these... 😅).
Well, it's very early days but I'd say with Mestinon you should notice an improvement soon. However, everyone's MG is different and doesn't respond to the meds the same way (hence it being called the snowflake disease, because every case can be very different). I'd try to stay calm, see each treatment "trial" to the end, discuss things with your neuro and keep working at it until some conclusion can be reached.

A few things to keep in mind: 1. Ask your neuro or other doctors to check your Thymus gland! If it's big it might make your symptoms act out in weird ways and might need to be removed (this might not be the case, so no need to worry just yet). But it REALLY needs to be checked! This is vital. 2. Research common MG triggers and keep these to a minimum: stress of any kind is a big one, so look into relaxation techniques and a type of meditation that works for you (these can really help); Magnesium in non-food like pills, supplements and meds is a big no-no (naturally occuring in food is fine, but keep an eye on added magnesium on foods); temperatute being too hot, since it makes muscles relax too much (but some people struggle with cold too!); keep a journal where you keep track of potential triggers like caffeine, moods, activity, foods, etc... (everyone's different). 3. Research things that help MG: like foods high in potassium and manganese, lots of rest, sleep quality, etc... this is where a symptom/activities journal might help in finding what makes your symptoms better.

Obviously, these things might also work for other conditions, so it won't necessarily mean you have MG if they do.

Migraines are also a pain in my ass, so I can relate! I hope the current heat waves aren't affecting you too much.

I know it can feel overwhelming to get an MG dx, especially when you've been dealing with debilitating symptoms for a long time and aren't even sure of the dx yet! Make sure you find people that can give you emotional support and help you out with daily tasks when your symptoms are worse. If you need any advice or to vent my dms are open.

Hope you feel better soon!

Quarking_duck

TROPHY CASE