[Sandra Günther]

Hello Ashley! I’m very happy for you that you could start with your in-home SCIG this week. I started IVIG in the hospital, 50 km from my home, in May 2019. I had to go 5 days in a row every 4 weeks, which was extremely time consuming. The first week after IVIG I felt really good, the second week was also ok, but afterwards my symptoms were getting worse, especially in the morning. Now I do my SCIG 2 times a week (2 times 15 grams a week, 120 grams IG per 4 weeks), which gives me a very stable amount of IG and makes that I can get up in the morning without to much weakness. The first 3 times I was instructed by a nurse, since then I do it myself. It takes 1.5 hours and I can choose a moment that suits me. I also travelled with all the material without a single problem at the airport. I order all the stuff online and it is delivered the next day. I found out that I am less sensitive to put in the needles in my belly (in my case 4 needles at a time) in the morning or afternoon than in the evening. My skin supports it very well.
I find it extremely convienent and hope to never have go back to IVIG in the hospital.
I wish for you that it will work out for you, too!
Best regards from Switzerland.

[Sandra Günther]

<p style=”text-align: left;”>Hi everyone!</p>
Unfortunately, I will not be able to join you today for the Zoom meeting.

My days start very early on Tuesdays and Wednesdays (5 AM) , so by 11 PM (European Time) I will not only be out of Firdapse, but literally out of order;)

I really want to thank Ashley and Price, not only for organizing this meeting, but especially for all their contributions to the blog and their very useful tips and tricks. You guys help me a lot, as I don’t know any other LEMS patient in Switzerland. I also like to thank Lori for her always very interesting column.

I wish you all a great meeting today and hope to be able to join you next time!

 

 

[Sandra Günther]

Hello Price and fellow LEMSies,

I would like to join you for the next Zoom conference on November 9th.

My name is Sandra Günther, I am 54, Dutch, but living in Switzerland for over 30 years. I was diagnosed with LEMS in October 2018, I’m using Firdapse since December 2018 and having IVIG since May 2019.

I have never met another LEMS patient, so I am really looking forward to meeting you all!

Could you please just inform me what I have to do to join the meeting?

We will change to winter time this weekend. You’re changing on November 7th, right? So the time difference will be 6 hours?

Best regards from Switzerland

Sandra Günther

 
<p style=”text-align: left;”></p>

[Sandra Günther]

Hi Dawn,

Thank you for your warm welcome! I’m Dutch, but living in Switzerland for over 30 years. I was diagnosed with LEMS in October 2018. Looking for information, I searched the web in Dutch, German, French and English and I really want to thank you and the other people behind Lambert-Eaton News because it’s the most complete and up to date information I’ve found.

I started Firdapse in December 2018, which worked very well in the beginning, but the effective duration decreased. In May 2019 I started IVIG. I think the protocol here is different from the US. It’s devided over 5 days in a row, every 4 weeks. I felt the difference immediately. The effective duration of Firdapse was prolonged again in the first 2 weeks, but decreased in week 3. I started sub cutaneous immunoglobulin treatment 7 weeks ago, 2 times a week (as the volume is to big for once a week). I am SO happy about it! It takes about 1.5 hours each time, it’s easy to handle, you can do stuff in and around the house, no trips to the hospital (in my case 50 kms away, so 500 kms for 5 days…) and the level of immunoglobulins stays steady, which is a big difference in my energy- and muscle force level. It allows you to travel (with IVIG I had to plan my trips long ahead, because of my appointments in the hospital) as the pump is very small. Mine came with a medical certificate/travelling form. It allows to take the pump, the bottles with immunoglobulins, syringes, needles, etc. as cabin luggage.

For me, sub cutaneous immunoglobulin treatment is a huge increase in life quality!