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Update plus recent issues….
Thought I was doing much better up until about 2/3 months or so. Double vision controllable, and apart from putting on more weight, all was good(not great, just good). Then I started to get a cough with dry throat, mucous pouring out onto the pillow at night and the tiredness came back, but much worse than ever before during the day, whereby I have to go to bed for at least 2-3 hours. I don’t sleep well though at night, mainly as have edema of the ankles and take a pill for that, which makes me pee a lot. Anyway, found out partly why, as stayed overnight at a sleep centre, and they diagnosed severe sleep apnoea and told me that I stopped breathing over a two-hour period 200 times and only had about 4 hours sleep, whereby my breathing stopped in total over 360 times, plus thrashed about a lot with leg kicking. Dear me, I’ve always felt that I had this as the wife said my snoring is terrible plus she has to nudge me, as she can’t hear me breathing!!! Now they want me to get a cpap machine, but as I breath through my mouth, I just know I’m going to have issues, not to mention claustrophobia with a mask. Anyone here with severe sleep apnoea plus MG, and how have you been with a Cpap machine and wearing a mask, etc, etc?
Started to get some bad back pain a few months ago, thought it might be a kidney stone, but urine tests proved negative and Neurologist said that taking Vyvgart has not caused this? Never really had backache, so got an X-ray, and they found osteoarthritis which is age related. Had an injection in that area which has greatly helped, but pain not totally disappeared. However, on the Vyvgart subject, for me and apparently many others,(nurse from manufacturer actually admitted it to me!), the Hytrulo version(albeit done at home, much quicker and convenient) has not been a success at all in comparison to the IV and when I told my Neurologist that the last month’s series, I seem to have got so tired(can’t sometimes keep my eyes open during the day)and just not feeling well, we had some blood work done and my IGG levels were dangerously low,(and according to Neurologist), this is strictly caused by the recent Vyvgart, so starting this week, having 2 days of intense IVIG treatment to get my levels up again and then decide whether to go back to Vyvgart infusions as opposed to injection form.
Eyes, a little more teary than before(could be my tiredness) but not too bad considering, albeit have to be careful driving at night. Better days are coming……………..
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11 Replies
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Hey John! It seems as though the illness you came down with possibly triggered your MG symptoms/fatigue for longer than the illness itself lasted. Several MG treatments can cause frequent urination as well. Which MG treatments are you currently on?
That is great you took the initiative to get the sleep study done; the thought of it prevents many who probably should from getting it done. In regards to the sleep apnea and MG, I think you may be interested in the following: https://myastheniagravisnews.com/news/obstructive-sleep-apnea-higher-males-obese-patients/, https://myastheniagravisnews.com/forums/forums/topic/one-year-on-plus-dry-throat-and-coughing-and-various-sypmtoms/#post-22265, https://myastheniagravisnews.com/forums/forums/topic/cpap-machines-do-they-work-for-breathing-issues-while-sleeping/#post-20637.
Here are discussions about back pain and MG you may also like: https://myastheniagravisnews.com/forums/forums/topic/back-pain-and-weakness-causes/, https://myastheniagravisnews.com/forums/forums/topic/pain-and-myasthenia-gravis-2/, https://myastheniagravisnews.com/forums/forums/topic/pain-and-myasthenia-gravis/. Many doctors disregard pain and MG as being related despite a large majority of patients experiencing so.
-Jodi, Team Member
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Hi-
Curious how low was your IGG?
Mine runs low 300 on vyvgart. Never associated fatigue with it, though I definitely get it.
Thank you.
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The story of your lack of sleep and quality of sleep is very much spot on in my opinion. I’ve had a CPAP machine since 2009 and diagnosed with MG in 2019. I am convinced that the sleep apnea is a precursor to MG in my experience. If you haven’t already started a CPAP regimen at bedtime then I highly recommend you get a referral to a sleep specialist by your primary physician.
I found your second part interesting as I have been on Vyvgart since November 2022. I’m on week 4 Cycle 6 and all cycles are IV at an infusion suite. I haven’t used the subcutaneous Vyvgart Hytrulo version but sounds like it has its limitations. On a side note after each 4 week cycle of Vyvgart IV the IgG will be reduced significantly.
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Thx Jodi for the links. In answer to your question, I am still on Preds, Mestinon, and Mycophenolate plus pills to lower BP though my heart rate for some reason has been very low for me recently, in the high 40’s to 50’s? Plus trying not to take everyday Furosemide for the ankle foot edema as i pee every 30 mins!!! So planning carefully on long care journeys.
Theresa…. Yes, I’m the same 330 levels. Having blood work done in a week and see what’s going on? The IVIG went well, Nurse came to me over 2 days,(this Tuesday and Wednesday) and it was a lot, 7–9 hours each day depending on the pressure, luckily fell asleep for part of it. Just looked at the notes.. 900ml each day Gamunex-C. Feeling ok, not jumping up and down but ok.
(2 hours later now)
Frank….interesting what you said re the precursor to MG and even more interesting how the IGG levels with IV infusions on Vyvgart are going to go down anyway? I’m feeling a bit tired and lacklustre as I write this, and was told that the worst day could be tomorrow. Would be wonderful, if in a week, felt so much better and could actually get off the vyvgart but Im now concerned re this apnea stuff as on March 7th going back to the Sleep Center to be fitted with different masks, plus machines etc, but googling stuff(it’s not that simple is it?). I breathe through my mouth(brt myself a chin strap to try and keep that closed), plus I’m a stomach(or at a pinch but rarely), a side sleeper and two of the worst ingredients for fitting me, and I just know that having a full mask over my face is going to send me stupid. But game for this and Frank, any cpap, bipap whatever pap/mask, nose thingy tips, etc, etc, more than appreciated and as always…….. thx for the replies…..Great Board.
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I’m also a side sleeper and I have been using a ResMed Airsense 10 CPAP machine with a Mirage FX nasal mask. Back in 2009 I started with a Phillips machine and a full face mask but the machine wore out and broke. I highly recommend the ResMed product line it definitely is the leader in the market. If you’re worried about adjusting to a full face mask then you might want to try a nasal mask and get separate chin strap to keep your mouth closed as much as possible. It’s probably best if you have anyone else that sleeps in your bed.
The Mirage FX is a mask that’s been produced for 10 years and ResMed has brought many newer masks to the market since then. I would suggest that you have the sleep apnea center give you two or three masks to “test drive” for a few nights so you can compare between them.
Lastly, the ResMed machine has an Application for tracking one’s sleep. I highly recommend this app for your smartphone or tablet. It also might help you to make your decision on which mask set up works best for you.
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Absolutely endorse Frank Morrow on the Resmed/FX. I have bipap for the ineffective breathing and heart rate goes to 140 while oxygen goes to 70 and wake every few min without bipap. It took me 2hrs to get used to it, was so desperate for sleep. I use a headband from Dollartree as chin strap as cheaper. Also put the tubing at the top of pillow is you roll during night. Use it every night!! and if you need a nap!! Let us know how it goes in 2 wks.
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<div>I bought a couple of plastic stick on hooks that I put on wall about 12-18 inches above bed. Ran hose through those. Holds hose up and keeps hose out of the way and I have less leakage problems. Especially helps since I have adjustable bed and raise head of my bed sometimes.</div>
Also bought a vinyl zippered “hose sleeve”. Outside is very slick, covers the ribs in the hose, allows the hose to slide smoothly around and not catch. Hose slides out of the hook when I need more length and weight of hose pulls it back when I need less. Less interruptions in the night.
It also insulates the hose so you have less of a condensation problem or “rain” issue. Relatively inexpensive and well worth the money. Wouldn’t be without it, game changer for me. You can find online. Mine is royal blue, I think made by ResMed but not sure. Google it and look for picture.
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Great replies re the machine, masks, tips, etc. Thank you so much, really appreciate this. So here is where all of this I think will not work, and I so hope I’m wrong. I get up to pee at least 5 times in the night and that’s bad enough trying to get back to sleep each time, so I dread to think what a performance I will have with the mask, hose, machine itself, (hate the chin-strap) just taping my damn mouth shut, using some kind of stretchy bandaid(wife delighted as less snoring) seems to work quite well as learning to breathe through nose(but when that gets blocked up?)
Probably got prostate issues re the peeing(just cant go through much more) cos at our age, they will find something, anything, anyway……………….so anyone have MG, Cpap, whatever pap and pee-pap issues all at the same time😄. Less…”stuff”(very little comes out on the pillow now with mouth taped together,) but I’m woken up evert 1.5-2 hours just to pee..such a pain in you know where! IVIG appears to have worked somewhat as not so drastically tired as before having to sleep within 2-3 hours of waking up…….well, I hope so anyway………………
Eye testing on March 1st. Appears a little worse…..on the highway this evening noticed the cars on the other side, all their headlight beams went straight up in the air!!) then blood work same day, 4th Neurologist, 7th Sleep Center for fittings, 10th Dentist…..all absolutely great fun😂
Best.
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Sounds like you are going through the meat grinder.
Keep going with cpap and reduce fluids 4 hrs before going to bed. Once you start getting a good block of sleep the peeing eases up… don’t have a prostate so results might vary but the value of good breathing at night is incredible and fixed a lot for me. Also have audible on the phone, when feels like can’t go to sleep put on the same dang book, the voice, the story knocks me out faster than the philosophy class I took in my 20’s. Hang in there.
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My neurologist suggested bipap machine. I’ve used it for over two years and I’m sleeping much much better with fewer “episodes “
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Thx Cheryl and all……..so last post on this subject after kitted up, and then will report but……………………..
Bipap or Cpap?👃🕵😱
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