pmdwarrior
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I had 3 years of IVIG monthly and Cellcept. Needed something more as nothing was improving. Changed to Rituximab infusions and continuing on Cellcept. Had first IV dose Rituximab end of August and 2 weeks later another dose. Will have a booster in March 2023, 6 months later. Miracle drug! If finally kicked in about 5 1/2 weeks after the first infusion. I have energy and able to do things. Brain fog eased, muscle pain eased, At this point I would say I have 80% of my life back. Huge difference for me. No adverse side effects at all.
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Hi, FYI
Please note: Mycophenolic acid (Myfortic) is <b>not the same as mycophenolate mofetil (CellCept)</b> and is absorbed by your body differently. These two medications are dosed differently and are not interchangeable.
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Five years ago I began having some spontaneous muscle contractions and “release” in my forearms and knee/thigh/buttock areas. Just touching my forearm could induce muscle contracting rippling. Then months later my legs got weak and I had difficulty walking and climbing up steps. I was tired. I could no longer do International travel. I did not experience any facial, oral, or ocular difficulties. My PCP referred me to Neuro and tests revealed a positive striated muscle antibody and an acetylcholine receptor binding antibody. I also had an increase in my Calcium level which subsequently was diagnosed as hyerparathyroidism and I had surgery to remove the benign tumor.
Meanwhile, I began Mestinon and had great difficulty with terribly blurred vision that made driving difficult. My muscles were still doing their contractions and I remained tired. After increasing Mestinon to no avail over about 2 years, I stopped it. I asked for a Muscle Neuro specialist in the department. (I am a Kaiser patient.) So tests were repeated with my new doc (yes, they confirmed the original MG diagnosis) and 3 years ago I started on Mycophenolate 2 gms daily and 2X monthly IVIG (80 gms total). Big improvement in about 3 months as my contractions left and muscle strength improved. For 2 1/2 yrs I remained on this regimen but I began having more tiredness overall and especially in my legs. IVIG was increased to 4X monthly (160 gms total) but there was no improvement overall. I requested a new treatment plan with Rituximab. I just had labs in preparation for that infusion and hope to start it sometime in late August.
My hope is the mono clonal antibody will suppress my immune system further so I can have a life back without excessive fatigue and legs that work so I can walk more than short distances. It’s been a pretty rocky journey and a total reversal of my former active traveling lifestyle. Big adjustments as you all know. Thankfully I have Kaiser so I am not monetarily constrained with treatment options.
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Some days I can only manage 1 energy event a day. So, I choose- is this the day I go to Trader Joe’s or Costco to shop? Or is it the day I go to the pool for some water movement exercise. Or can I putter in my garden and do some planting or cleanup. If I feel enough energy somedays I can do more than 1 event. But mostly my tired legs/body will only take me traveling so far. I am not as active as I have been in the past which has been a difficult adjustment. I really have to think about energy expense and whether the activity is one I can push myself through. And I have an occasional “recliner potato” day when I just kind of crash and rest most of the day reading or watching videos. So, yes, MG does intrude in my day.
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Thank you for the TED link. Inspirational. I needed that!
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Message #17932 Correction on my Cellcept dose: 1000 mg 2X/day so 2000 mg daily.
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My MG shows up as weak legs and arms, muscle contractions with ache and pain, with an occasional left eyelid that sticks shut in the morning but then works as the day goes on. I have been receiving 2 days of IVIG infusions for over 2 1/2 years (40 grams each day) every 4 weeks along with Cellcept (immune suppressant) 1000 mg per day. It has definitely helped in the past. However, I am now noticing that the treatment is beginning to not work as well for me as my legs feel weak and the aches and pains continue even after treatment. So, I have an appointment to discuss starting Rituxan infusions that were suggested by by Neuro doc a few months ago as a next treatment option.
I am a Kaiser HMO Medicare patient and the cost is covered with only a very small copay (for which I have financial assistance from Kaiser). Yes, I see how much it totally costs and is billed to Medicare. I am really medically fortunate to be a Kaiser member in California. The routine described by others is the same with me. I am given 1 Benadryl and 2 Tylenol 30 minutes before infusion starts. The expert IV nurses at the outpatient infusion center are old hands at this treatment method as I see many others with the identifiable bottles hanging from the poles.
On infusion days, first bottle of 20 grams is infused gradually with the titration rate changing every 15 minutes and takes approximately 2 or so hours. The second bottle of 20 grams is infused at a full-on rate and takes about 1 hour. Other than feeling sleepy from the Benadryl, I have had no reactions from this IVIG treatment. During the process, I bring my tablet to watch videos and read magazines that have accumulated, as well as doze off at times. From medication to bandaging the IV site I plan on 3 3/4 to 4 hours at the center. Yes, they check on me frequently and I get vitals taken before and after infusions.
I drive home myself afterwards. The biggest thing I notice is urinary urgency and incontinence for a while after receiving all the fluids! However, I am told to keep hydrated as the IVIG is a concentrated protein mixture.
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Thank you for the video link. It was so informative. I wish Dr. Pitts were my neurologist. His presentation gave me reassurance that many pains in my body are certainly secondary to my MG.
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I got my flu shot last week and have had no problems. Not even a sore arm. I just got my COVID bi-valent booster shot today. I have had no problems with past 4 COVID doses and don’t expect any with this dose.
Immunosuppressed with Cellcept over 3 years, I had IVIG for over 3 years, 3 and 4 times/month. Stopped after the June 2022 monthly dose of IVIG because I was having no more progress in muscle strength and energy. I began Rituxan treatment (and continued on Cellcept) the end of August 2022. Had an IV dose 2 weeks apart and am scheduled for a 3rd dose of Rituxan in March 2023 (6 months later). After the initial 2 doses of Rituxan I noticed a tremendous difference in my arm and leg muscles, energy and my brain clarity at 5 1/2 weeks post IV doses.
It has continued to be a miracle! I have strong arms with no pain and feel so good, I can do multiple things /day without the drag of tiredness and exhaustion.! I wake up and I’m not exhausted and have energy. It’s all good. I feel like I am getting my pre-MG life back again. Not 100% but at least 80% at this time. It’s wonderful.
I did extensive personal research on Rituxan and the immune system before treatment so I have a clear understanding of what Rituxan (a monoclonal antibody) is doing in my body and to my immune system. I also consulted with the neuro pharmacist. Knowledge is indeed power.
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I’m 78 and had 3 years of monthly IVIG treatments ranging from 3 -5 days/month. The infusion nurse will explain the procedure when your Mom has her 1st one. She will probably receive Benedryl and Tylenol 30 minutes before the actual infusion begins. This is to counter any possible side effects. The Benadryl made me sleepy so I would snooze in the recliner chair for 1-2 hours while the iv is going tucked in with the provided warm blankets. The amount entering will be adjusted during the iv period and can be slowed if there is any discomfort. FYIÂ I had absolutely no side effects from the IVIG. I’d bring a snack/lunch (depending on my appointment time) and some headphones for music or a book or tablet to relax while the infusion is going. Hydration is a must while undergoing IVIG treatment, water, juice, etc. All the best to your Mom.
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I’m 78 and had 3 years of monthly IVIG treatments ranging from 3 -5 days/month. The infusion nurse will explain the procedure when your Mom has her 1st one. She will probably receive Benedryl and Tylenol 30 minutes before the actual infusion begins. This is to counter any possible side effects. The Benadryl made me sleepy so I would snooze in the recliner chair for 1-2 hours while the iv is going tucked in with the provided warm blankets. The amount entering will be adjusted during the iv period and can be slowed if there is any discomfort. FYIÂ I had absolutely no side effects from the IVIG. I’d bring a snack/lunch (depending on my appointment time) and some headphones for music or a book or tablet to relax while the infusion is going. Hydration is a must while undergoing IVIG treatment, water, juice, etc. All the best to your Mom.
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Hi Michele,
Ah, yes, tired arms. Same for me in the beginning of my MG journey. I get it about clapping. That happened to me at the symphony and other events. Along with my weak legs, I thought I was really loosing it! Before diagnosis/treatment I also couldn’t lift things like my full tea kettle and my stoneware dishes, small sacks of garden soil, even tall glasses of beverages. Weak arms as well as my legs. It was pretty discouraging!  My arms since treatment are still not the tough, “can pick up anything ” strong they used to be but treatment has really helped. Not near as weak as my arms used to be. However, I just incorporated this into my life and ask for help when needed with heavy objects.
Best,
Patricia DeMore
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Hi Bernadette,
I have great photos of my setup but can not attach them to this system. The ring shaped antibiotic patch is called Bio Patch (printed on it) . FYI https://www.jnjmedicaldevices.com/en-US/product/biopatch-protective-disk-chg
And after I am done with day one and my setup is encased in Coban, a knitted-like “stockinette” sleeve is put over it. FYI      https://www.google.com/search?q=stockinette+dressing&rlz=1C1CHWA_enUS688US688&oq=stockinette&aqs=chrome.2.0i433i512j69i57j0i512l8.11086j0j9&sourceid=chrome&ie=UTF-8.
It is usually used to go under casts but they use it over the Coban to kind of protect the wrapping.  Next infusions are 4 weeks away! Sorry I could not send my photos.
Regards,
Patricia
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Hi Bernadette,
Yes, my infusions are on 2 consecutive days. I have them scheduled on Saturday and Sunday each month as the parking is easier and the infusion center is quieter! I do not have a permanent IV or port. When they put the IV cannula in on the Saturday in my lower forearm, I keep it in until the next day so I only get stuck once each month. I just remind the nurse that I want it kept in for the following day. They prepare it to stay in for the next day by putting a little antibiotic ring around the cannula sight and anchor it with a clear sticky cover bandage. When I am finished on the first day, the cannula is flushed and capped with the cap part then wrapped in gauze around it because it is bulky and more stable with the gauze wrap. Then the whole area is incased with Coban, a stretchy tape, and the area is then covered with a stretchy sleeve like “blanket”. It then stays nestled in its “bed” until the next day. I never had a problem sleeping with it and only once in all this time did it not function for infusions the next day. Of course, no shower Saturday night with that in! (I suppose I could wrap it in plastic for a shower Saturday night but why bother and take a chance of disturbing it!!) Waiting until Sunday night when I have completed my infusions is fine. Having infusions this weekend, (but Sunday and Monday because of the holiday) I’ll try and attach a photo later so you can get a visual of what I am describing.
Regards,
Patricia
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I got my first Pfizer shot in January and the second in February. Two weeks ago I got a booster shot of Pfizer vaccine. I am on CellCept and IVIG 2X monthly treatments. During all 3 injections, I had no reactions whatsoever. Just a Band-Aid and confirmation on my CDC card that showed I got it.