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One year on plus dry throat and coughing and various sypmtoms.
On my third session of vyvgart hydrulo (had two previous IV Vyvgart infusions before that)with the nurse now coming to the home. Seems to have helped, albeit my tiredness back somewhat. However, over the last several months and getting worse, have now noticed a very dry hacking cough plus big build up of phlegm during the day, almost like I have been smoking two packs of ciggies or vaping which I gave up sometime ago now.
Anyone have this condition or dry throat plus coughing? Related to MG or something else? Weight increasing as well even though Im now down to 10mg of Preds. BP high, being somewhat controlled with Losartan and Edema of the Ankles helped now with Furosemide and have to remember not to take that before long car journeys as need to pee all the time.
Been over one year now since first diagnosed. This time last year was in 2 different hospitals for 4 weeks. Life changing for me, but double vision although nearly gone now does appear back from time to time(much less so than before) and the eyes change daily but not nearly as badly as before. Just don’t have the energy any more or enthusiasm I had before to get things done. Possibly just getting lazy. Have sleep apnea somewhat and they want to do all these tests but at my age, I just know that they are going to find something else and not ready yet for a pap machine. I do need to cut down on the drinking and eating. Im a foodie and have had difficulty in this department but the swallowing and chewing is good. Very rarely, I have a few slight speech issues but it’s so minor, thx goodness. But as mentioned the dry throat and coughing plus build up of stuff in the throat, is a bit of a concern.
I think I count myself lucky when I read what others have been and are going through, long may it continue..best to all………………….
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11 Replies
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Daughter uses a BiPAP and these days wouldn’t try to sleep without one. Sleep apnea is sneaky and poor sleep can really creep up on one and the resulting fatigue can really take the energy out of oneself. Sleep apnea can also cause mouth breathing, which dries out the airways. MG is also sneaky because it can affect the breathing muscles. During the day, we use muscles besides the diaphragm to breathe and if the diaphragm is weakened by MG, these other muscles compensate and patients might not notice. But during sleep, the brain paralyzes most of the muscles in the body except for the diaphragm (don’t want to run a marathon if dreaming about it), and if MG has weakened the diaphragm, it might not work as effectively for breathing and contribute to poor sleep. The BiPAP aids the diaphragm here. This is not the same as sleep apnea, which has more to do with obstruction in the throat.
Her BiPAP has the added bonus of a built-in humidifier, which lets her breathe moist air all night. Here in Michigan, we just got done with over a week of extremely cold weather, which overwhelmed our house furnace humidifier, so we had to set up a portable room humidifier and let it run near her during the day, and that really helped. She was starting to cough when the humidity was edging downward to 40%, but did better when we were able to push it back towards 50%.
Other possibilities are steam inhalers that are available at pharmacies, Netipot to help moisturize the nose and throat.
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Always seem to on this website have difficulty when trying to reply(Mods what’s the answer pls?) as hit the reply button and nothing happens? Anyway, I hope this is going to the right place in response to JD’s post which I thank you and very helpful.
Yes, I believe I have OAS, all the symptoms. However, I learnt only yesterday from my Vyvgart Nurse in charge that as it’s still so new, they are only now getting a response from enough people who have had three or more vyvgart hydrulo(injection v IV) and the overall consensus is that this injection form is not working as well, or symptoms are returning much faster than with the IV! Just had my third session of 4, one more to go next week, and this time around not noticing a difference at all, actually feel slightly worse!!!
And that is certainly what is happening with me plus I mentioned this to my Neurologist who made me immediately get blood work done for IGG count and will see what that says, but she also feels I might need to go back to IV.
Regarding my sleep apnoea, I mentioned to my doctor that I was prepared to buy a good machine myself as didn’t want to go through again all the tests for Medicare to approve a BiPAP machine, he felt that there may be a way round this, as I have MG,(and need this machine to improve my condition?) plus he wanted to see how I got on with a machine before I coughed out large sums of money? Any comments from those who have one, suggestions, etc? But do agree, a good humidifier seems important, but I looked, and they can be as high as $2000.00. Also, you can online order a wrist machine for around $200.00 that actually confirms one has Sleep Apnoea and perhaps on the basis of this, Medicare will approve? I don’t know, but my gums feel swollen, phlegm being coughed up during the day and I will do what is necessary if a machine can assist and improve my situation as also feeling so tired.
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I also have problems clicking on reply or other clickable words or buttons and having them not work. Scrolling up or down and then trying works for me. Our tech team is still in the process of switching other disease sites over to the new platform we switched over a few months ago. I have been taking notes on minor bugs that I will address with them when they are available. Let me know if there are any urgent issues you would like resolved or if the reply button limits you from replying to discussions. 🙂
-Jodi, Team Member
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(I too have trouble with the reply button. I just notice that I need to make sure I scroll all the way back to the top of the page before I am able to click the reply button.)
For a humidifier, it’s probably easiest to start with and try a cheap little room size portable humidifier that you can set up next to you and can humidify the air right around you that you’re breathing in, before committing to something like a large room humidifier, or even a whole house furnace unit (which we have, because in the winter we would be otherwise zapping our cats when we try to pet them). While I’m trying not to do a product endorsement here, we’re fond of this little unit on Amazon – raydrop 2.5L Top Fill Cool Mist Humidifier Diffuser
https://www.amazon.com/gp/product/B088B8G6NL/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&th=1
I also recommend trying a Neti Pot (several different manufacturers are good), it is really good at moisturizing and cleaning out the nasal passages. It takes a little practice to get past the feeling of getting waterboarded.
Dry mucus membranes can also be a sign of Sjogren’s autoimmune disease, there are a separate set of auto-antibodies to screen for that. It is more known for dry eyes, but it can affect other parts of the body.
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I also wanted to further comment on PAP machines. CPAP and BiPAP are two different things. CPAP produces continuous pressure to keep the throat open sufficiently for breathing, while BiPAP significantly reduces air pressure when exhaling so that the body is not needing to use MG-affected muscles to push air out against the PAP machine.
Our US for-profit national healthcare non-system forced us, to stay within insurance coverage, to do a sleep study to confirm we needed a PAP, and then we could only get a CPAP, then we had to do another sleep study to confirm we needed a BiPAP, despite our MG specialist saying right off the bat that a BiPAP machine was needed for her. Our sleep specialist was really good at cutting through this bureaucracy.
Regardless, I think it’s still necessary to have a full evaluation by professional sleep specialists who understand these nuances, regardless of insurance or Medicare requirements. In addition, the machine’s pressure is adjustable, which also should be supervised by experts.
Finally, however a machine is obtained, via a doctor’s prescription through a health store, or a used one on eBay, you should also have local technical support available for repairing the machine. (No machine is perfect and we needed to get ours repaired twice early on.) Going the prescription/insurance/health store route, repairs may be covered. But purchasing directly is quite a bit cheaper over billed insurance amounts, though deductibles may still apply, mileage may vary.
Lastly, mask fitting can also be tricky. The equipment provider may not do a good job discussing all the different manufacturers and types that are available. A comfortable mask is achievable but can be trial and error. And several parts need to be replaced periodically (like filters, cushions, etc.) and we found they need replacement sooner than insurance schedules allow, but buying directly on Amazon or from CPAP online supply sites isn’t so bad.
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One last comment regarding MG medications. It is important that the neurologist/rheumatologist treating the MG patient is familiar with MG, the immune system, the rogue auto-antibodies that cause MG symptoms, and how all the new MG medicines actually work on a molecular level. The worst doctor is one who diagnoses from a medical school textbook and prescribes from a pharmacy catalog.
MG is part of a “spectrum” of autoimmune diseases that result from mis-programmed antibodies that mistakenly attack the body’s own tissue. How the antibodies are mis-programmed will determine which tissues they go after, and thus the symptoms that show up and ultimately the diagnosis that is made (as diagnoses are defined by symptoms, not causes).
To date, medicines to treat autoimmune diseases have not advanced yet to target specific auto-antibodies, nor go after the specific mechanism that mis-programs the antibody. Immunosuppressants reduce the programming of antibodies in general, with the idea that while all antibodies are reduced, the reduction of auto-antibodies are significant enough to reduce symptoms. Hence the need for IgG testing to make sure it is not suppressed too much. Old medicines for MG like Methotrexate is more of a sledgehammer that affects the overall immune system, while new ones like Vyvgart is much more specific and tactical and targets a particular process, leaving other immune responses less affected.
Add to this the problem where many immunosuppressants may be equally useful against MG but many doctors will not prescribe them off-label because they are not FDA approved specifically for MG. MG is considered rare and drug manufacturers are unwilling to spend the $ for studies necessary to get FDA approval for MG. But a good MG doctor is familiar with immunosuppressant alternatives and may be willing to prescribe off-label if they feel the situation warrants it. Vyvgart is not the only tool in the toolbox.
Finally, the first medication FDA approved for MG is Mestinon. It is a very useful medication, though I consider it a band-aid rather than a treatment, because while it boosts nerve/muscle transmission and reduces symptoms, it doesn’t address the underlying cause of auto-antibodies disrupting neuro-muscular communication.
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JD, all excellent advice. Again many thx. I’m first going to start off with a good humidifier and see if I sleep better. At present, I have a prescription for edema, swelling of one ankle and foot, but unfortunately that makes me get up several times in the night, so doesn’t help with sleeping better.
Have to admit, though, these machines sound daunting.
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So my blood work came back and it showed that my IGG levels are low. Range bound is 603-1613. Mine, 337. The neurologist wants to take me off for the time being, vyvgart, which can cause this she says, and have me on IVIG until the levels stabilize.
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Dry throat and nose is common for me, and paradoxically, so is an overproduction of mucus that sits in the back of my nose and throat which is difficult to swallow although I have no problem with food. I have a post-nasal drip so that doesn’t help. To keep things flowing, I use Neilmed sinus rinse twice a day (once a day I add a pulmicort nebule to it), a humidifier to maintain 35-40% humidity in my home and HEPA air cleaners (a large portable one cleans my entire one level house). I also use nasal gel or oil 2 times per day since the dryness tends to give me nosebleeds in winter. Allergy season usually triggers my asthma so I use bronchodilator and steroid inhalers (Diskus), which make the throat dryness worse. A combination inhaler of the two gave me laryngitis (the generic was way worse) so I went back to using two.
I was diagnosed in 2019 with generalized MG and am currently on 2000 mg of mycophenylate daily. My MG symptoms are fairly controlled but my neuro allows me to boost with mestinon if I notice symptoms worsening which quickly brings them back under control.
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I’m on Vyvgart IV and YES, it does cause weight gain, even though they say it doesn’t. There are very few comments about Vyvgart that don’t address weight gain. As for the coughing, dry mouth and phlegm, it sounds like you might aspirate. I use a NIV which is a bipap with more monitoring capabilities. I love my Astral 150. It’s great to relax and have it assist my breathing. With the attached humidifier, it helps with overnight dryness. I suggest you see a pulmonologist just to make sure you’re not experiencing aspiration pneumonia which can cause lung scarring. My neurologist never recommended it or even informed me it was a possibility so now I’m oxygen dependent.
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So, Im now 3 days into using my new Resmed Aircurve 11 Bipab machine..the latest apparently..My last sleep center session they found out that Cpap was not working for me and only with the Bipab did the events as thy call them come down drastically……so far so good with a few issues..thought I had an air leek with my mask which the hose outlet swivels on top on my head as I am a stomach sleeper and I tried to tape up the area without realizing that there are specific holes placed there for exhalation. Duh!!
Comes with an app that tells you all, still a fair amount to learn, but it seems to have cut down me going to the loo all the time. Last night I only had under 10 apnoeas(they call these events) from an original 300 plus! Throat better, less mucous, albeit used a chin strap to keep mouth closed.
Time will tell and although a bit of a performance with all of this(plus cleaning) if it makes me better and less tired, will be great. Starting tomorrow back on Vyvgart IV as opposed to the injection. As for weight gain..there is only one way for one to lose and unfortunately if as is the case we mostly have no energy, there lies the problem..but its simple mathematics, you have to somehow lose more calories than you take in, If you can exercise each day and lose around 500 calories and stick to a calorie food intake of 1000 or less, sleeping will lose you quite a bit and should stay stable and start to lose weight fairly quickly.
I lost 10 lbs in one week trying this but its more mind over matter and you have to force yourself to lose weight(and I like the occasional drink or two that does not help apnoea), but not giving all life up yet…..just great food, going out to restaurants and being tempted must be put on the back burner, until I sit in the bath and see what I need to see, once this huge mountain in front of me disappears😀
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