[Claire M Walsh]

As many have replied that they have suffered with bad backs for years, add me to the list! However, I have found that PT helps me ALOT. I started PT in Jan. 2023 after having an Achilles tendon reconstruction, but continued because my excellent Physical Therapist works with my whole body. He notices when my back is not straight due to fatigue, shoulders slumping etc. I just got a renewal prescription from my PCP to continue as we work on strenthening my core, arms and legs, and I feel so much better. Just a thought! Oh, in the past I have needed steroid injections, but since I had to go back on Prednisone, that helped my back too….they just want to get me off of it!

I have an unrelated question to this string, is anyone experiencing jaw pain? This started about 7 months ago when I kind of went backwards. Vyvgart helped me for a couple of months, but then I got not more than a few days to a week of relief so we stopped. I then had 4 rounds of Rituxan in November and will have another 4 in May. They have helped me some, but not as much as I had hoped. Luckily, my main symptoms are all above my neck now…slurred speech, jaw pain and dropping eyelids. The fatigue has faded, I no longer need naps unless I do not get a good night’s sleep. SO..that’s why I used the word lucky. I have an excellent Neurologist and Oncologist working as a team while we try the Rituxan. Next step will be a complement drug if I do not achieve the desired outcome. I take a Menigitis vaccine before the Rituxan infusions and have had no complications. Obviously I will have to do the same if i change to a complement drug.

Please share if anyone is experiencing jaw pain as I have been on Prolia for 7 years for my osteoporosis, and jaw pain can be a complication of Prolia which leads to jaw bone disintergration…oh my!

[Claire M Walsh]

I address my comments to the staff that produces this newsletter because I do not understand why this particular article on the Covid vaccine is in my inbox today as it is so outdated! Why would you print these comments from way back in 2021 when so many things have changed? I hope you will keep topics current, not 3 years old. Thanks, Claire

[Claire M Walsh]

Mine is definitely dysarthia. Slurred speech was my very first symptom and plagues me still.

[Claire M Walsh]

Dysarthria and fatigue! Did not have speech problems for about 2 years after original diagnosis and MG crisis and 1 1/2 years of IVIG. Has seriously returned while on Vyvgart for over a year. Will transition in December, hopefully, to Rituximab. Anyone out there on this?

[Claire M Walsh]

Dysarthria was my very first symptom. I’ve had MG almost 3 years now. For the first year and 1/2 I survived on IVIg and had very little slurring after I was stabilized with that, Mestinon and Prednisone. This past year I’ve been on just Vyvgart and Mestinon…but my dysarthria is more often and more pronounced. I also can’t find the right word sometimes, my speech is slurred and when I eat, food collects in my lower cheeks. Someone else mentioned how scary this is, and I agree! Vyvgart only holds me for about 6 weeks now. I feel like I’m going backwards. I am lucky that I do have a neurologist who specializes in MG, and I intend to talk to her about this in my next appointment.

I am so sorry that some of you do not have access to a Neurologist. Please try and find one who knows MG if at all possible. Good luck to all.

 

[Claire M Walsh]

John, I am wondering about a few things. Are you seeing a Neurologist or a Neurosurgeon? I found a Neurologist at my local Medical University who has been taking care of MG patients for over 10 years. I also have a great primary care physician whom I see every six months. Having a Neurologist who specializes in MG has made my journey much easier that yours, and I am not a young person. I’ve had MG for almost 3 years, and Vyvgart is now improving my symptoms drastically. We found that I needed to move my infusions up to every two months instead of every 3 months, and that’s when I felt the change. She also told me, if needed, I could have them every 6 weeks. The  Vyvgart study recommended a 57 day break between the round of 4 infusions, and that’s about where I am. I only need Mestinon 1-2 times a day now, no other MG meds. Vyvgart is the only medication on the market so far that targets the disease not just the symptoms. I still nap on some days but MG is not totally controlling my life.
The  Vyvgart company offers you  the chance to talk with a nurse who is assigned to you and can maybe answer some of your questions. Good luck! Getting the right physician is the key!

[Claire M Walsh]

My story is just the opposite, my best  day ever since my diagnosis of MG in Dec. 2020 was the day I stopped Cellcept! I had terrible GI issues on Cellcept. Of course it was given to me as a way to wean off of Prednisone, just as many of you also mentioned. I have osteoporisis so needed to end prednisone. I started Vyvgart several months later and although I have not had a single side effect, the drug truly has not helped me as much as IVIg. My doctor has just changed the frequency of Vyvgart from 8 weeks down to 6 weeks, and upped the dosage. Has anyone else had their dosage changed…please someone tell me yes as I would feel much better about this.

[Claire M Walsh]

I have a very supportive family, but I too feel that no one really seems to really understand the fatigue we all go through. I have said this before, we just need to keep chugging along as best we can and hope better meds come our way. To the person above who has struggled with this for 60 years, I can only hope you have found joy in hidden places! I had looked so forward to Vyvgart coming on the market as I had volunteered for the trial, but I was booted out at the 11th hour because I was turning 75 the next day.  I started it last spring, but it has not been the boost I was looking forward to. Have any of you had good luck with Vyvgart infusions? If so, please share.

[Claire M Walsh]

This is all so interesting to me because I started Vyvgart last summer, and I’ve been wondering what results other people are getting from it. Personally, I feel IVIg helped me feel better, but my Neurologist did not think it was not a good idea to continue it any longer…had been doing monthly for 18 months. I felt my best last spring when I discontinued Cellcept and gradually came off Prednisone. That’s when I transitioned to Vyvgart. I had such high hopes it would be the wonder drug for me, but it is not. My fatigue and muscle weakness is worse and some aphasia has returned, which was my very first symptom. She tells me to hang in there because there are more drugs in the pipeline of development! I had no adverse reactions to Vyvgart, just not as much relief as I had hoped for. I continue using Mestinon 90 mg. 1-2 times daily as needed. My Vyvgart infusions seem to need to be 6-8 weeks apart. I was told by the drug company that the frequency is up to your physician, 57 days was apparently an average time for those in the trial. Good luck to all…it’s not a nice disease but there are worse.

[Claire M Walsh]

I have been taking Mestinon for over 2 years now,  and  I have never  had that reaction. I believe my GI difficulties aren’t helped by this drug, but it does give symptom relief to me also. I am so sorry this is happening to you, Must be awful. Have you tried Vyvgart  infusions?

[Claire M Walsh]

I am on 5 mg a day, needed to stop Cellcept completely due to side effects. Have had 2 rounds of Vyvgart. First showed no improvement but the second round did ( 4 infusions, 1 per week). Have you tried that? I was on immunoglobulin infusions twice monthly for over a year until starting Vyvgart. Snowflake disease, everybody is different 😱

 

[Claire M Walsh]

Hi, my specific question is about what others have done after the first 4 Vyvgart infusions. Luckily, I was taken taken off Cellcept (3000 mg a day)  in April at my request as I had  GI side effects and severe bruising and bleeding that came way too easily if I scraped or bumped any part of my skin. THAT ALONE made me feel so much better! Wish I had tried sooner.

History: Diagnosed positive in Dec. 2019  at age 77, IVIG twice monthly for 15 mos., plus Mestinon, Prednisone and the Cellcept.  I  started the 4 Vyvgart infusions in June, finishing July 8. NO side effects at all but warned to hydrate, hydrate which I did. Now I am trying to stop Mestinon so skipped all doses today and doing ok so far. Noticeable signs with slightly more trouble pronouncing words..I can live with that. Still nap some days but often 20 minutes does the trick.  However I am still on Prednisone 5 mg., instructed by my Neurologist to wean off that after one more round of Vyvgart in 5 weeks. Someone else said what I construed to be is that Vyvgart decides how much you need for the second round, not your Neurologist. Here is where I am confused. She says Vyvgart has to work, how well depends on how sick you are. I freely admit that I think I am not as sick as most now, but certainly was in the beginning. Had a crisis within 3 weeks of diagnosis, 12 days in hospital, 8 of which in ICU. Slept my life away for months until I got regular IVIg, and then I improved. I’m sure the 60 mg. of prednisone had alot to do with that also ,  but since I have fairly severe osteoporosis, she started tapering down as soon as she could. To the person asking about Prednisone, I only began to feel better when I got down to about 10 mg and could sleep again more normally.

Hope all this helps someone and also hope for more feedback on what others are doing post first 4 Vyvgart infusions.

Thanks.

[Claire M Walsh]

I also have had stomach issues from day one of taking both Mestinon and Cellcept. After over a year of Cellcept, my Neurologist finally stopped it. I had developed several ulcers, plus way too much bruising on my legs and arms. Truthfully, I am a little more fatigued, needing naps again, but I feel so much better. I currently take 90 mg. of Mestinon three times a day and 5 mg of Prednisone once a day, plus 2 IVIg treatments per month.
I am scheduled to start Vyvgart in about 2 weeks with the hope of getting off all oral meds for awhile. Wish me luck! Would love to know if anyone else has tried Vyvgart infusions?

[Claire M Walsh]

My weight has remained exactly the same throughout my whole first year of MG. I was told I would gain, but I only got the moon face from the 60 mg/day of prednisone . I am now down to 5mg and the moon face is gone!

[Claire M Walsh]

My case sounds similar to Robert B. However, I developed no antibodies after my first two vaccines, although others seen by my Neurologist did ( was on very high doses of Prednisone back then). After  the third vaccine, I had a response,  but my numbers were not very high. I think any response shows a positive so I did not get too excited. I am on IVIg x2 every 3-4 weeks, Mestinon and CellCept and a low dose of Prednisone. Since I am 76 and my grandchildren are scattered over this country, I am not willing to stay at home this year. We have flown twice without incident, kept my mask on, and tried to get as close to the front of the cabin as possible.

Wondering if any of you have had an antibody test after your vaccine? I cannot find a range for the test but hope someone can enlighten me. Was advised to continue using all precautions.

[Claire M Walsh]

I wanted to reply and say how sorry I am that some of you are having many more severe symptoms  than I am. I was diagnosed quite quickly at a Medical University here in my state. I will share the regime my Neurologist has had  me on after I had an MG crisis 2 weeks after being diagnosed, and it seems to be working fairly well. I get IVIg for 2 days every three weeks, take 90  mg. of Mestinon x 3 per day, 1500mg Cellcept in the morning  and 1500 mg in the  early evening. I also take 10 mg of Prednisone daily (  thank goodness down from the 60 mg. per day I started on in December 2020). My biggest concern right now is that my Pfizer vaccines in Feb. and March of this year produced a negative antibody test, so basically I am not protected. I sought the help of an Immunologist at my doctors suggestion and did receive the booster shot as soon as it was approved for immunosuppressed patients. He will test me again at 8 weeks from that booster. I have a large family of 8 grandchildren, 7 of whom too young to be vaccinated. I live in fear every single day of contracting Covid as they tell me I will certainly end up needing a respirator if I do. I am super careful, double mask now, never eat inside a restaurant and truthfully seldom eat outside because I live in a hot and humid climate. I deal with fatigue everyday, folding laundry feels like climbing Mt. Everest! I went for a year without seeing my grandchildren but now, at age 76, I am not willing to continue that.  So my biggest fear is catching Covid! I can deal with the rest. I am blessed to be older and retired, and I am ever so sorry for all of you that need to work when you are so fatigued. Hopefully new and better drugs are coming soon!

[Claire M Walsh]

Greg, I had major surgery ( a back fusion) exactly 2 MONTHS to the day before my diagnosis.  It is often mentioned, but not scientifically proven, that any stressful event can trigger MG. I’m now 10 and 1/2 months into my disease and  76 years old,  and I have come to realize that I probably was showing some minor symptoms of MG prior to my diagnosis. I had always been an active person ,  walked and travelled alot, and I had really “slowed down”. Of course I attributed this to age! But one night I was unable to speak clearly which sent me to the ER. I was lucky that I was diagnosed within days after that by going into the major medical university in my hometown. SO…I tell this story only to say it may or may not have been your vaccine. If you have a good Neurologist that you trust, he or she may be able to  help you make a good decision about the 3rd vaccine. Have they ever tested your antibody level?  I would hate for you to catch Covid again!!