EDWARD CLAGHORN
Forum Replies Created
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I have ongoing problems with fatigue but believe that it is because I can only sleep about 2-4 hours at a time. I never sleep through the night. I do exercise regularly – cycling – I always start off slow and tired feeling but after a few miles I feel very good. My breathing and sinuses improve.
That said, the next day I am v tired. Day two is worse, then I am ok again.
It is a new world for me.
I hope that you feel better soon.
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Vyvgart actually made me feel worse. This is what I was put on after IVIG treatments stopped being effective Now I am on a new treatment. The gap between treatments is 8 weeks. By week 6 I typically am hanging on until the next infusion.
IVIG was helpful for eyesight but not for swallowing. Vyvgart was not good for eyesight and muscle soreness. New treatment good for all except blurred vision. I am really struggling with that right now along with sinus problems (epic).
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Blurred vision is the worst symptom but as I get to the 8 week mark before my next infusion I have general muscle weakness. another interesting problem is my sinuses. The various meds blow up my sinuses to the point where it is hard to talk. No one can figure out which ones cause the problem. Especially bad for about one hour after I take the prednisone. – learning to live with this.
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I have been on Vyvgart since January. Also prednisone, CellCept and Mestinon daily. During and after my last round of infusions, my symptoms actually got worse – especially sinus reaction to Vyvgart and Mestinon. Blurred vision and trouble swallowing is where I am now. I have visited the MG Doc, my primary, my optometrist and will see my ENT in two weeks. I m now doing a nasal rinse that uses yet another steroid. The MG doc says that it is not the MG. The primary says that the meds are causing my nasal problems and the sinuses are causing my blurred vision. Lots of opinions but NO ANSWERS yet.
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<p style=”text-align: center;”>Just finished my second cycle of vivgart infusions. Being treated at the hospital. Much better than home infusions. Takes about three hours from start to finish. Better results than IVIG but different. Less positive results with vision. After 4-5 weeks positive effects declined.</p>
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We always require a mask or I vacate the work area and someone else deals with the tradesperson. Afterwards we open windows and clean all surfaces. We are polite and explain my health risks. No problems yet. Often they are wearing the mask when they show up. They do not want us to make them sick either.
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I tested positive two days after returning from two weeks of work in Europe. Out of nowhere I felt like a truck had backed over me. I did take paxlovid and felt better within hours. Tired and sore for about a week or two then back to normal mg life again.
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My Dr. has always talked about patients who went into remission. My case has seem a slow steady decline in health as well as declining results from IVIG. I will switch to vyvgart in October and hope for improved results as well as remission.
Dreaming is free
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Thankfully my IVIG infusions and drug costs have been mostly covered by Medicare. When the hospitals were closed and I had to use a home infusion company, the IVIGs were NOT covered by Medicare, The fact that the hospitals were all closed to infusion patients did not change their position – they do not cover home infusions.
By the way, the home infusion company – owned by a venture capital company – used old equipment as was not honest with me about the real cost of the infusions. My monthly infusions cost so much that I went to the Dr. and told him I would stop the infusions if I could not return to the hospital for them. As if by magic the hospital started performing in- hospital infusions again. When I tried to file an appeal with Medicare the infusion company would never send the proper paperwork. What a con.
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Hello to all,
I have just been told that I will start getting Vyvgart. 1X/wk for 4 wks then a 2 month gap that weekly again. Recently the 2-day IVIG/mo + mestinon + prednisone are giving me diminished results. Main problem is swallowing food and sinus issues.
1. Does this mean I stop the IVIG treatments? How about the other drugs?
Hopeful for an improvement. Any input would be appreciated.
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Every day different
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I am still able to exercise regularly and cycle 3-4 times a week in the warm weather. I have found that after a long bike ride my legs and arms are sore and I get cramps in my legs and hands later in the day. I have to pay attention to the weather as the heat affects me more than before, even with proper hydration. In the cold weather it takes me a very long time to loosen up. It is still great to exercise and be outside with friends. I just take it all easier and slower than pre MG.
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Agee with all – low pressure systems are the worst. Often I feel a heavy feeling in my head – as if I have a sinus problem. I feel the extreme cold the most but have to pay more attention to hydration on my bike rides. I cannot ride anymore on very hot – 90F days. Now every day is an adventure – feeling good or bad is never a trend, it is a daily check in.
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My specialist has made all the decisions automatically with few explanations. When I had a bad reaction to my Covid jabs he made adjustments quickly – doubling the prednisone and adding CellCept. No explanation given but it took care of the problem. I am ok with this except that I have had to figure out my symptoms on my own. Especially my swollen cheeks and off and on blocked nasal passages. All I get from the specialist is that it is not the MG. My other Docs have no idea either. A little fustrating.
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My timeline was months long and as I reflect on it, I probably had the beginnings of MG years before and just did not recognize the symptoms. All along, my complaint was mostly sinus problems which no one attributed to MG. In the end I was diagnosed by a great Doc who did it over the phone while talking to my surgeon. Tests two days later confirmed that he was spot on. Early symptoms were blurred and double vision with muscle fatigue. No these symptoms are controlled with IVIG and meds. I am not expecting remission and am learning to live with it.
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I received my third Pfizer shot 14 days ago and my reaction to it was much milder than after the first two. I timed it exactly between my monthly 2-day infusions. I am still on Cellcept and an increased dose of prednisone since the first reaction to the vaccine shots. Hoping that this is a good sign and I hope to drop back on the extra meds.
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I did have an adverse reaction from the two Pfizer jabs. My eyesight blurred and then I had double vision for a bit. The Dr. changed my meds and I did a 4 day IVIG instead of the normal 2 day. It took a few weeks to get things back to normal. I am still taking increased amount of prednisone as well as the CellCept. My third jab is set up for next week. More than worth the bother.
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I was getting two days of IVIG monthly. They were becoming less and less effective. Vivgart is a significant improvement overall. So far only three of us at the clinic have been approved for vivgart. I believe that there will be many more.
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IVIG monthly for three years. Now getting vivgart, 4 weeks on and four weeks off. No infections. Staff at hospital are super careful and trained.
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I am waiting for an approval for vivgart. The IVIGS 2-days a month have been less and less effective. Swallowing food is a big problem now How long does it take to get approved?
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Thank you for that clarification. Right now I am going through the process of getting set up with the home infusion company and making sure that my insurance covers the cost. I used this home care company during the pandemic and they were less than perfect.
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Thank you Leora – Very helpful and appreciated.
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Will do. I was told that the CellCept would eventually replace the prednisone and the Mestinon. I would look forward to that.
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My symptoms definitely got worse after then two Pfizer shots. Mainly blurred vision and for a short while double vision. Also, a dramatic change in my tolerance to heat and humidity. The Dr. raised my prednisone to 10mg and added CellCept. I scheduled a 4 day IVIG and then went back to the normal 2 day every 4 weeks. I am slowly getting better. Good luck.