[DCarpenter]

Thanks for this information. I would be hesitant because of potential seizures side effects.

I’m on 60 mg day and seems to be enough to control symptoms for me now.

However it is reassuring to know that there is some room to increase my dose if my disease worsens

Deborah

[DCarpenter]

Hi Ashley, congratulations on the transition to home infusion!  Over the past couple years, I have occasionally had supplies that were missing but the home infusion nurses typically had a personal stash. The IVIG service calls me before the shipment to ask me if I need anything. I’ve found that nurses have various levels of proficiency with needlesticks, some taking many sticks to hit a vein. They come from various areas of expertise, from school nursing to ICU, and home infusion is a part time gig for most. Arrival times are estimates at best, sometimes they are up to 2 hrs. late, so that is frustrating to plan my day, especially if they say I’ll be there at 8 am and don’t arrive until 10 am or start at 5 pm and leave at 11 pm. I have never had outpatient infusion, but since I no longer drive, it is a welcome service to have monthly infusion in the comfort and isolation from others in my home. The few issues that I list above outweigh the effort to go to a center.  One disconcerting event was that a nurse came to my place who tested positive for COVID within 8 hours of my visit. While we both wore masks, I was concerned. I researched CDC and home health nurses’ association policies, none of which require rapid testing before they arrive. I asked the agency if the nurses would do a rapid test (I would pay for it) and they said no, CDC does not require. As with anyone, there is a risk of infection exposure; however, I ask that they do not stay in the room with me to reduce risk.

Hope February goes well!  best of luck Deborah

[DCarpenter]

I use mine religiously for medication reminders and to track my walking goals. A must have to manage my LEMS therapy

thanks Deborah

[DCarpenter]

Can you please specify todays link?

 

[DCarpenter]

Also does anyone know a neurologist in the Charlotte NC area?

[DCarpenter]

I would like to discuss Firdapse vs Ruzurgi especially from those who have been on both

thanks Deborah

[DCarpenter]

How picturesque! Thanks for sharing your walk.  I consider walking as a vital part of my therapy and try to do so every day. The fall weather has afforded me the opportunity unlike oppressive summer temperatures.
Deborah

[DCarpenter]

Ashley, I am thrilled to hear this wonderful news!!  From modulating the IVIG, to HUG improvement to home infusion.  What a blessing that you have made such impressive gains and that you are exploring options to help you!!  Well done, Deborah

[DCarpenter]

I have daily pill containers by time of day—when I am out, I take those individual pill containers when I go out for the day.

I set reminder alarms on my IWatch and phone. If I am away for longer time, I take my stash of meds, and pharmacy telephone numbers for my critical meds just in case.

[DCarpenter]

Yes I plan to attend and would like to discuss side effects from LEMS drug therapies.

[DCarpenter]

I asked my neurologist and primary care physician about using CBD and neither thought it was a good idea because of the lack of research on the effects.

[DCarpenter]

I have not flown since my diagnosis, and aside from COVID concerns in the context of my immune suppressed state, the unpredictability of travel is of most concern.  I have travelled extensively around the world, and have experienced travel delays, missed flights, having to scurry to another gate, rerouted and canceled flights, on the fly changes, and questionable resources/support for disabled travels.  Adjusting, regrouping, and managing these changes require energy, which eludes me since LEMS diagnosis.

[DCarpenter]

I asked several doctors about Using CBD and  all were not in favor— good to hear that you found helpful-

I never get a good nights rest and wondered if it were the disease or meds. I also have so many dreams every night which awakened me—have never had this before LEMS

breathing exercises help, but never a sure thing

Deborah

[DCarpenter]

I applaud your efforts to travel—seems overwhelming to me but I know I would take advantage of carts to get from gate to gate, I know the CLT airport—a daunting trek.. I also remain concerned about Covid variant surge—esp if on immune suppression meds.

eager to hear about the program plans, and your successful travels

deborah

[DCarpenter]

I absolutely struggle with the heat, which exacerbates my weakness and fatigue. I tried to walk in heat and didn’t last a few minutes. I try to get out early, but tough to choreograph when meds kick in with walking early. I’ve thought about the neck fan but see mixed reviews about their effectiveness and placement— any feedback on brands? I have the profuse sweating symptom. Thanks for sharing information about this exasperating issue! Deborah

[DCarpenter]

Thanks for your helpful insight Joyce, especially since you have first hand experience in home care. Nurse # 2 came this past weekend and I gave her a test and asked her to please use it. She adamantly refused.  I did call nurses’ supervisor, same company. She said that CDC didn’t require it and it was complex operationally—false positives who will pay for them, etc. I’ll pursue the toll free home health number—assume Medicare?  Thanks again! Deborah

[DCarpenter]

I had my COVID vaccine booster the day after IVIG, and was ill for over a week, conjunctivitis, full body rash, body pain, vomiting, diarrhea, was horrible. I had asked my doctor if it were OK to have them near and he said yes—HE WAS WRONG. I was on steroids for rash and conjunctivitis for over a week.

My hematologist said never have it near IVIG and wait mid-way, which I have done since the horrible reaction I had and have not had any issues since the timing.

Price, your intuition was spot on.

[DCarpenter]

Hi Price, I could have written your narrative.  I have complained about hip/thigh pain since my diagnosis, and my neurologist dismisses my complaint, and esp. since the Left is worse than the Right. Suggests it is orthopedic related, but I tell him I did not have this until LEMS.  I had a reaction to Mestinon? or Firdapse? 30 min after taking the higher dose he prescribed… My severe reaction included entire body pain/numbness/paresthesia Head, back, legs, ears, chest arms, BP 170/110, extreme diaphoresis. He said that he had not seen this in his 35 years of practice, and suggested it was “anxiety”. The ED doctor (not surprisingly) did not know about LEMS, but suggested I hold the dose, which I did. It eventually went away, and I started adjusting my own dosage, which as helped thus far.

My issue is balancing a compassionate bedside listener, to someone who has extensive experience treating LEMS, which is a rarity. He has been much more aggressive than the hospital where I was evaluated and diagnosed, added two other therapies, so I currently am staying with him.

[DCarpenter]

I have had the Pfizer vaccinations with two boosters,  My neurologist is now suggesting my taking the Evusheld injection at least one month following my last booster, because I am on IVIG immunosuppression.  Has anyone taken this or discussed it with their doctors?  thanks Deborah

[DCarpenter]

Hi Price, my cardiologist wants me to go on statins, how long were you on the drug before your LEMS symptoms were exacerbated?  Are you currently on one now?  See below the options she is posing. Also has anyone had trouble with medically induced stress testing drugs? see below

Cholesterol medications

• –Atorvastatin or rosuvastatin; though any statin OK
• –PCSK9 inhibitors like Repatha or Praluent

Meds for stress test

• –Regadenonson; or
• –Dobutamine

thanks to all.  Deborah Carpenter

 

[DCarpenter]

Yes, I am available on the 19th at 5 pm ET, thank you for organizing.  best, Deborah

[DCarpenter]

Yes, I am available on the 19th at 5 pm ET, thank you for organizing! best, Deborah

[DCarpenter]

Hi all, listed below is an NIH url with drugs to avoid

Table – PMC (nih.gov)

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7457047/table/T1/?report=objectonly

hope helpful.  Deborah Carpenter

[DCarpenter]

thank you…reinforces that my concern is legit.  Today I offered another home nurse a rapid test when she arrived, and she vehemently declined.  We both wore masks.