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What happens if I just stop medications?
How many here have managed over the years to get back to a “reasonable” normal? Or put another way, managed to go from high doses of the meds to very low doses and/or to no meds at all. In other words, remission or some kinds of remission? I’m basically told that I will never improve but by taking vyvgart, plus the usual meds we all take, I will be stabilized or it won’t get worse. Well nothing like what is was last year but eyes and strength plus general tiredness not improving at all and now vyvgart making no difference.
I’m getting to the stage where I noticed that by cutting down my Mycophenolate in half, I am not having edema ankle swelling so much any more. The Retina guy wants me off the steroids as causing me eye issues, filling up with fluid,(and is getting worse with distorted vision but actually don’t think it’s so much the steroids now as was getting better until I started with the BiPap machine which is causing other problems) and the Neurologist says I have to stay on 7.5MG(but down from 80MG) for the time being. I sort of suggested taking matters into my own hands a bit, just to try what I am suggesting, and you can imagine the reaction I received to that idea. But I’m just tired most of the time, cannot lose weight even with exercise and cutting way down on food and drink, so asking the above question as to how many here have a near normal life without what most of us have to go through and rarely take medicine of the stronger kind?
So, here’s the irony, finally did a sleep study twice, and had dangerous levels of apneas and very low heart beat through the night so much so that over many years the wife prodded me to wake me up as she couldn’t hear me breathing, which technically with sleep apneas, she is correct, I wasn’t breathing, but still here and kicking, used to love my sleep and if I didn’t go to bed late, could always sleep in and get at least 8 plus hours and felt refreshed. But the apneas are way down, although I question the machine(it’s all done by algorithms through breathing)which will show apneas whilst I’m awake!!!!!
Now last year, on my high pred dosages plus mestinon 5 times a day I was an insomniac, which many of us have been there, but with lower dosages, got better and managed to sleep reasonably well. Regardless, as for whatever reason(MG, albeit Neuro won’t acknowledge that this is related) this year, tired all the time, so BiPAP fitted….messed about with different masks etc, the latest machine, and eyes started to deteriorate just when they were getting so much better, and found out that the air is being forced internally into my sinus areas into the eyes and drying them out, which causes blurriness and no amount of drops, gels etc improve the situation. Naturally Sleep Center people never heard of this. So much so that I hate the machine, can’t sleep with it and beginning to wonder if I should, like I’m suggesting with the meds, just not take them and stop all what is supposed to help me, when it doesnt. Was prescribed some powerful sleeping pills to help assist with going to sleep and wow, had hallucinations, vivid nightmares, and even with 30mg of the stuff was unable to sleep but felt absolutely terrible the next day and I never took any pills in my life before MG. So now thinking of just not using the machine for a while.
So, sorry for the book form rant..trying to see if by helping myself by going by my instincts might actually improve affairs?? All comments, criticism, advice, whatever, greatfully accepted.
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12 Replies
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We are generally afraid to make medical decisions because we do not have knowledge as doctors do. There is a real risk of going into a crisis if we stop taking medication suddenly. We also know that myasthenia gravis is not like a headache, which can be helped by taking a pain killer. I asked my pharmacist what would happen if I suddenly stopped taking azathioprine. I know the answer, because when first taking it, I had to have a high dosage of prednisone to assist. I then tapered off. The azathioprine also took time to become effective. The risk of having a life threatening crisis has made me continue with my medication(azathioprine).
Mestinon works by preventing the breakdown of acetylcholine. This helped me as it basically counteracted the effect of the immune attack on the acetylcholine receptors. But, when I as suffering from excessive cramps. I realized that it was part of going through a cholinergic crisis.( too much acetylcholine). In my understanding I had to reduce mestinon. So I stopped altogether, but was conscious of the possibility of having symptoms of MG again. I do notice difficulties with swallowing etc from time to time. I then quickly take mestinon, knowing that it takes about 15 minutes to take effect.
In my case, I realise that I know my body in a way no one else can know, including my doctor. So I will treat myself as I feel. But, it is risky. I cannot suggest that anyone else does what I am doing. This is my personal experience. So far in the last 4 years I have managed without a major crisis. I believe that if I followed and allowed a neuro to treat me and change meds as the doctor feels is best for me, I would probably have ended up in hospital a few times at least. Azathioprine works for me. But even if I feel that I am in remission, I am afraid to stop. This is the honest truth.
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It is not quite a year since I have been diagnosed with MG. Mine is controlled with the generic Mestinon and 10 mg of Prednisone. I had IVIg infusions for four months but some issues came up and they were stopped. I was told I would be on the medicine all miy life. I notice a difference in my speech if I do not take the medicine when I get up. I cannot imagine how my speech and swallowing would be if I stopped it completely.
It sounds like you have some real issues that need guidance from the physicians caring for you. I have never had to take medicine every day before and that was tough to accept that this was my life now. I do pray that these issues can be resolved quickly. I will be praying for you.
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I’m not on any meds for 3 yrs now, but I had a thymectomy & Plasmapherisis in 2019, after my thymectomy I was doing good, was still on Mestinon & Prednisone and Cellcept, was also getting monthly IVIG, Gammagard, thymectomy was in May 2019, to June I was getting gammagard, the 1st week of July they switched me to Panzyga, huge mistake on their part as it through me into exacerbation of my mg, then by that weekend I was going into crisis, couldn’t speak or take any of my meds, was taken to the hospital, floor neurologist put me on high dose steroids which made it even worse, my neurologist was notified that I was in the hospital, he told them to take me of the steroids & treat me with the process, Plasmapherisis, that was a 10 day process, being done ever other day, i was eventually released July 29th, I could speak again and eat again, I was still on all my meds, but my neurologist, had a plan in place to get me off all my meds over a year process, by Jan 2021, I was in remission, if I had to do it all over again, I would have had the thymectomy and Plasmapherisis done right away, before my mg had generalized 🙏❤️ I only had ocular mg when I was diagnosed, about a year later it generalized, and my neurologist did for warn that more then likely it would, but I didn’t listen, I was hoping to beat the odds, I was diagnosed Sept 2016.
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I understand exactly what you’re feeling. I was diagnosed with MG 8 years ago and Neuro started the standard MG protocol of Mestinon, prednisone, CellCept, IVIG, and then infusions of Rituximab, and recommended Vyvgart and Ultomiris. Bottom line nothing helped, and I dealt with diarrhea, weight gain, insomnia, weakness and a lot of other things I never experienced before I was treated for MG. I myself with a “let’s try and see what happens” from Neuro, tapered off all the meds and began to remove each med one by one and finally stopped all 2 years ago. So far, nothing bad MG related has happened, I don’t feel better, but I don’t feel worst. My backup plan is Mestinon if minor symptoms occur, and priority order for IVIG or Plasma exchange if crisis sends me to hospital. My suggestion is to try tapering your MG meds and eventually drop one or two if possible. Good luck.
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Except for the total dropping everything I could copy your reply and repost. I, still stuck with Prednisone but down to 15 from 60. Most aggravating thing for me was weight gain. I gained 45 lbs but managed to lose 20 but for three years now it has stayed the same. I hoped cutting the Prednisone down would have helped bit no change. I tried cutting back a couple of times but 10 put me in crisis. No fun at all.
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I get your frustrations. I’m 5 years diagnosed and still refractory after having tried multiple treatments in addition to prednisone, Mestinon and imuran being my steady companions. I don’t know about bipaps, but my CPAP has a humidifier container. I also found Ayers nasal gel, a humidifier or petroleum jelly (keeping it sterilize- no fingers or double dipping) keep my sinuses from drying out too much. I turned to clinical trials to get some relief from symptoms. The first trial was almost 2.5 years. It was the only treatment that gave me any sort of relief. My prednisone dose went from a high of 60 mg down to 17.5 mg. Now I am participating in a second trial, but it’s too soon to tell any results.
For weight gain, 20 lbs gained was my biggest weight. I did an elimination diet and reintroduced foods. I found there were several foods which I ate regularly and caused gut inflammation. I ended up remaining vegan/ gluten free for the last 3 years. I increased my water intake, cut out sodas and juices. I was able to drop 12/ 20 lbs. I also felt a lot less drained without those triggers. My GP ran a full blood panel including thyroid, parathyroid and iron. At one point, I had a vitamin D deficiency, another time slightly anemic and a startling improvement in my thyroid function. I was able to quit taking thyroid medications.
These are thing that helped me, but we are all snowflakes.🤷♀️
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No, no, no.
Take a deep breath.
If you were to stop suddenly, you would quite likely throw yourself into a crisis. This is a very very hard disease to manage and it SUCKS. That said, it does take managing it and somewhere you will find what works for you. For myself, after 10 years, only 3.5 diagnosed, I’ve only had maybe 6 weeks of what I will call normalcy. So will you get remission? Probably not, will you have some great days, likely, good days yes, bad days, for sure.
My neuro is currently getting approval for me to switch from Vyvgart to Rystiggio. I’m also on 6 mg prednisone, (reducing), and Mestinon, 4-5 x’s day. I hate being the Guinea pig but he says he has patients that do better on Rystiggio, so try it I will.
What I am holding out for is the CarT cell therapy. It really is promising. I don’t think it will be here until 2026, so patience.
What info know is I am in a better place today than prior to Vyvgart. Eyes keep getting worse, scared driving will not be a luxury some day sooner than later.
As to weight, yeah the prednisone messes that up. I’m even wondering the Vyvgart? But the prednisone reduction took a year for me to get rid of the round face it is all such a slow process. I’m 70 now, so just trying for every good day or hour I can get. It requires lots of naps and watching TV. Never one of my habits. I do know it COULD be worse. My 55 year old daughter is fully in a wheelchair, unable to walk, almost has lost her arm muscles to due to some kind of muscle disease. Not MG. She has endured this for 30 years now. In that time she has recently been mad a dean at the college she works at. Her brain still works. So we need to change our expectations and learn new skills. She is motivation for me.
I hope you can manage working out something that will work better for you. These treatments are not aspirin and unfortunately do not give hourly results.
Good Luck!
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Hi. I’ve just been put on Methylprednisolone a 6 day packet, so I’m wondering does it give you depression and how do you take it, in the AM w/food? looking for some tips.
Thanks
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Sorry about your daughter.
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I have been in remission before. Not anymore. Stopping meds, especially steroids can be dangerous. The other stuff can put you in crisis. I would insist on another sleep study to adjust things, possibly a different mask? People with MG are more prone to to sleep apnea because the back of your palate quits getting the message from your brain to stay up so your breathing is blocked, causing sleep apnea, per my pulmonologist. Please be safe.
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Thx to all of you, really appreciate the replies, and we are all different so wish everyone well and with continued improvement and have noted very seriously what has been offered here re advice. Yes, having a few issues with my sight unfortunately deteriorating somewhat, and that concerns me the most, as just feels so dry and even with the usual drops and eye gel that I use at night, not making too much of a difference. Plus, bad distortion and driving now at night is an absolute no, no. My right eyeball I can’t swivel it to the far right as I used to early on this year, but I rarely have double vision these days. Took myself off the bipap,(dryness was far worse) taking a zolpidem 10mg, going to bed a bit earlier and getting more sleep than I had before and not feeling so tired during the day. Going to try something from the dentist as well. Just had my last vyvgart of 4 and scheduled to start again in July but going to ask my Neuro when I see her next week if I can start much later again plus have it bi monthly. By cutting back on the Cellcept, I hardly have any ankle edema any more, so I think I made the right decision on that one(see what my strict Neurologist says to that) but I won’t just take myself off everything but try slowly to level down and see what happens.
And yes, when I was in such trouble last year, Plasmapheresis was the only thing that got me talking and eating again, so I hear you guys who mentioned this. I could only when first diagnosed, speak lying down on my back and that sounded like Donald Duck on crack, it was the weirdest thing. Plus the double vision, which took a long time to go. I leave you with a very funny story. I had both eyelids taped to keep them open when in hospital, and this rather large nurse with huge breasts(sorry couldn’t help but notice as they were literally 2 inches from my face) was bending right over me whilst I’m sitting down in a chair and takes one of the pieces of tape off and asks me what I see now? I said………….. four of those? Boy did we have a laugh and thank goodness she had a sense of humor.
Onwards and all the best. J.
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I’m make 67 and a doctor with MG. Late onset disease is milder . I was diagnosed in 2021 had mainly swallow vision and speech issues. I had steroid and Pyridostigmine for 18 months but had complications and after 9 months managed to stop all meds. I do get problems if stressed or when I get an infection. Rather live with this than restart meds. However hopeful for one of the new self inject drugs. Fatigue stopped me working and need a nap daily. My neurologist advised that 50% of MG late onset can go into real remission on no drugs. You need to have this conversation with your neurologist or if not being listened to get a second opinion. Get to know and understand your disease and own it .
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