[Sandra Davis]

It’s been Hell!

I agree with all the other comments, but as bad as it is, the medications could be more deadly. I now have a terminal illness related to side effects from the medication I was on. It could have been avoided. If you see warnings on the RX package, and are actually having them. You are asked to tell your provider ( who may not investigate further),  it is easy to lose faith in them.

 

[Sandra Davis]

I’ve had those shoulder and neck pains since my diagnosis 4 years ago. My MG Dr. also said it was unrelated.Then I saw a spinal surgeon, who sent me for neck injections, which gave me relief.The next neuro. visit the did their routine muscle tests, and pushed my head around
(to check strength), and the pain returned, and has been with me since.

I cannot take any NSAIDS for the pain, because I now also have a bleeding disorder, from Azothiaprine. As a result of the drug I now also have nonalcoholic liver disease and an enlarged spleen,( which causes muscle spasms!) and GI bleeds. I was on a dose of 4 gm per Kg for 1 1/2 years. I have been off the drug for 2 years, and still have the side effects.

I’m a 77 year old woman. I was a hiker and a dancer before diagnosis. Now I hobble around inside my home with a cane. This forum has been such a relief to read, because I was made to feel like I was imagining it all.

[Sandra Davis]

I aam treated with plasma exchanges, only right now. I was doing well enough to start aquatherapy, until the vaccine. I had 2 doses of Moderna, and the booster, with no pain,
but now have severe dysphagia and double vision. However, have been spared the covid illness. I guess it’s a trade-off. I would do it again, though.

[Sandra Davis]

I developed breast cancer 18 mos. ago. At first I thought it was going to be my way out of life with MG. Was that discouraged by my lack of relief from the symptoms. I was fortunate to have a great oncologist, and she put me in touch with a neurologist that eventually got me into an aphoresis program, and this has helped my mood, as I am now able to drive myself around town to buy groceries, and go to my medical appointments, and even go to PT. All of these help my mental health .

Through the cancer support group, I discovered a book called Getting Well Again. It focuses on visualization for healing and finding joy in everyday activities, including meditation, laughter and play. Part of this is doing an inventory of activities which bring me joy and deep fulfillment. That was both a painful and a growth producing action, as 26 of the 50 activities which gave me those positive feelings were already taken away by MG. It took me time to grieve those losses. Unlike cancer, which MAY resolve or go into remission, I had no hope for that.  But I am learning to find joy, nonetheless.

Also, there is still Covid, which gives me anxiety, and knowing that my immune system is already compromised adds to that.

The newer MG drugs are giving me a sense of hope for the future. I am not a candidate for some of them because of the cancer, but there are several drugs out there, and maybe in the next year I will be able to start on one of them. I just work at keeping myself nourished and ambulatory. Right now both are challenging for me. I’m no longer giving up on getting healthy.

 

[Sandra Davis]

Edward, I think you will find that one of the common side effects of prednisone is swollen cheeks. Sometimes there is redness along with it. I am surprised that your MD didn’t know or disclose this to you.

[Sandra Davis]

Yes, my exposure was to drugs injected into my body. Don’t forget that these are Chemicals, too.

My double vision and spasms in my 4th and 6th cranial nerves started the day after I had a complicated root canal. I was given extra doses of lidocaine during the dental procedure, because it took longer than expected. After 10 days of double vision, I saw an opthomologist who suggested I see a neurologist. The only way I could see one was through the Emergency Room. They admitted me for what they thought was a stroke, and that night gave me both types of dye, meglumine and radioactive Iodine for two different scans. Fortunately it wasn’te a stroke, but then had full blown generalized MG, caused by dyes. I could open only 1 eye, had difficulty talking, eating swallowing,  and walking due to loss of balance. These were not corrected with 100 mg of mestinon 3x/day plus 240 mg Imurane/day, plus IVIG for 5 days a week, every 4th week for 4 months.

I then had a thymectomy. Following that I was intubated about for about 18  hours, and given 5 plasma exchanges. After that I had my swallow study, and was permitted solid foods. Some of the symptoms cleared up. I could talk and move somewhat more easily. The double vision never cleared on those drugs. I finally stopped Imurane after I found my platelets were down to 37! That took 15-16 months to develop. I have not had that drug and for over 2 years, and I am still troubled by it . Twice I’ve had GI bleeds, and also last year I had surgery for cancer. The neurologists was been willing to check my liver enzymes to see if they indicate damage. In fact, they did not even check my CBC’s again after I had been on the drug for 6 months. Fortunately my PCP did. I had begun to have physical signs of thromocytopenea 9 months before it was confirmed by a lab! Each time I saw my neuro. Dr.’s I complained about the Purpura (these were huge purple and black spots on my arms and legs), and they never addressed it. That is one of the early warning signs that your liver and/or bone marrow are being damaged.

The MG Foundation gave me a list of drugs to avoid, of course Lidocaine and Megalumin as well as the Iodine (iothalamate) are on the list of drugs that exacerbate MG. Keep us posted on the VA and Agent Orange. I am also a Vietnam era vet. While I didn’t go there, almost all of my patients had been evacuated from there within 48 hours of their injuries.

 

 

[Sandra Davis]

I didn’t fully address your question, Michelle. I hold onto a stable piece of furniture or a counter or anything immobile with one hand while reaching down to the floor to pick something up inside the house. My depth perception is off, so I may miss the end of something I am placing things upon. I frequently drop things in the kitchen while cooking or cleaning up after a meal for myself, too.

[Sandra Davis]

I fell on a sidewalk twice,  one of my legs just gave way under me. I started using a cane after that. I always use it outdoors, now and have had no more falls. Indoors I walk carefully, and have eliminated throw rugs, and am very cautious on the stairs, and also use both side hand rails. My bedroom is upstairs. On a bad day, I make 1 round trip, good days, 4-5 trips up and down. I find that carrying anything throws my balance off. When I need to carry things down, I use a plastic bag attached to a plastic clothes hanger, put it on the railing, and sails it right down. I toss the sheets down to be washed. I have help carrying them back up. I’m  doing balancing exercises in a pool, where a fall is impossible, to strengthen my core. I  have had MG for 3 yrs.

[Sandra Davis]

I was on 100 mg’s of imuran for 4 months. When it didn’t correct my double vision, it was increased to 200 mg’s a day for 1 year. That comes to 4 mg’s per Kg.( I weigh less than 50 Kg’s).  Within 2 months of starting the drug, I developed purpura that covered my forearms, also nausea and fatigue that worsened each month. I requested blood work, which was refused me at the clinic. I finally asked another Dr. to run blood panels, and found my platelets were down to 37…very low, indicating liver damage,  portal hypertension. My liver damage lead to several episodes of bleeding veins in my stomach and esophagus. So now I have MG and liver failure. I had an upper GI exam before starting the drug, and there was no evidence of it then. My hepatologist told me it was rare, and I am making end of life arrangements now.

If any drug gives you black tarry stools, it needs to be investigated!