Joanne Evans
Forum Replies Created
-
I have had 3 repetitive nerve studies. It is a bit uncomfortable but not painful.
Firdapse has given me a chance to be mobile and allows me to have a fitness schedule in the morning. I am not so good later in the afternoon. I live in canada and the drug is very expensive so I limit my intake.
I have had a number of cancer tests. No positives yet but they keep checking. They think my LEMS is due to autoimmune deficiency. -
hello from British Columbia, Canada
I had to transition from ruzugi to firdapse last fall due to the law suit in canada. I actually found firdapse was more effective for me. I am trying to take as little as possible due to the cost but it helps me a great deal.
I am trying celcept right now to hopefully take Firdapse’s place.
Does anyone have experience with that drug? -
After my diagnosis in 2019 I had a CT scan and then a PET scan at the cancer clinic shortly after. Results were negative. I am going to ask for further screening as nothing is booked.
-
I first received ruzurgi from a distributor in the USA. It was sent to me through my neurologist request. It was at a cost manageable as it wasn’t covered in Canada. Then I heard from the pharmacy in Ontario that the Supreme Court of Canada stopped the distribution. Firdapse became another option. I have been on it now for about 6 months and haven’t had to pay under a special warrant. Unfortunately this has come to an end. The cost will be prohibitive for me to continue.
I’m extremely depressed and wonder what’s my next step. I am trying to get an appointment with a neurologist. Perhaps there is something else I can take. It is not an approved drug under our insurance. -
I have had very high liver enzymes counts but my neurologist thought it was from taking azathioprine. I have stopped taking it and now I am presently on 60 mgs of firdapse and 180 sr mestinon twice a day. My counts are better now.
Good luck
Joanne Evans
-
Happy birthday to you from the hot coast in British Columbia. Thank you for your help and I hope you had a great day 🎉
-
Hello from Vancouver Island. A few weeks back I had a scare that my ruzugi had been discontinued in Canada. A wonderful pharmacist found the company that distributed firdapse and I started taking it about 2 weeks ago
I find the drug fairly similar and I may have a bit more strength.
We are having a heat wave here and I do find it reacts negatively to LEMS. I stay out of the sun and I am lucky enough to have an air conditioner in my home.
If there is anyone out there in British Columbia with this disease I would like to connect.
Thank you for your newsletter.
-
That would be amazing. Being on the west coast I am probably 4 hours ahead of those on the east coast. I can be available!
-
Julia
I started ruzugi last June 2020. I was diagnosed with LEMS that January 2020.
the drug has just been approved by the Canadian government and prior to that it was sent to me through the USA. I feel very fortunate.
I was on prednisone but could not tolerate that drug. I then went on azathioprine and have just taken myself off it. It wasn’t helpful to me at all.
Good luck and be kind to yourself! Keep us updated!
Joanne Evans
-
Hello Julia
I have been on the drug ruzuri which is similar to firdapse. I have had great success and I take a slow release mestinon to give it a boost.
I feel a tingling sensation and am very sensitive to cold. Other than that the drug has given me a new lease on life. I do believe I would need care and be in a wheelchair without it. I like you had never taken drugs before my diagnosis of LEMS.
Good luck to you!
Joanne Evans
-
Hi everyone. My name is Joanne Evans and I’m from Duncan, Vancouver Island, British Columbia, Canada. I was diagnosed January 2020. I have been dealing with symptoms for 8 years prior to that.
-
I was diagnosed in January 2020 but had symptoms for 8 years prior. Was forced to leave work early.
I am thinking our numbers would be much greater because the percentage of cancer and LEMS.
-
<p style=”text-align: left;”>Where do you live Mary?</p>
Canada has recently approved ruzuri/firdspse for use in Canada and I am now getting it free -
Hello from Joanne in Canada
I had a left shoulder injury a few years ago and put it down to yoga. My physio said it was a rotary cuff injury. It did get better and now I am experiencing pain in my right shoulder. Going to physio again and they say it a rotary cuff injury. I haven’t been doing anything lately to cause that. Hmmm sounds like LEMS?
-
Hello from Canada. I have been on ruzurgi/Firdapse since June of 2020. It has allowed me freedom to get up in the morning. I take 20 mg before I get out of bed and wait for about 1/2 hour for it to work. I then take 15 mg at 4 hour intervals during the day. It has been a miracle drug for me.
-
I am unable to have ivig because of Leiden factor v and the risk of a clot. I am presently on azathioprine a immune suppressant drug. Not sure if its the same as Rituxan, but it doesn’t seem to be working. I will certainly ask my neurologist about Rituxan. I am also on ruzurgi which I am now getting through a Canadian pharmacy.
I have also been recently screened about cancer with negative results. The only autoimmune disease I know that I have is celiacs.
-
Yes I have shoulder pain and weakness. I haven’t talked to my neurologist about it but I am seeing a physiotherapist. I had thought it was injury from pulling and pushing myself because of my weakness. Maybe it’s LEMS. Thank you for that information.
-
I am doing ok. Depending a great deal on my medications. I have been taking azathioprine in lieu of prednisone. Much more tolerable.
I also started with slow release mestinon at bedtime (thank you Price) which has helped with my strength.I am concerned about the vaccine due to my immune suppressant medication. Hopefully I I will get directions from my neurologist.
-
Hello
I am seeing a specialist about ivig. One question I have is can you take other drugs like ruzurgi when your transfusion is wearing off? Do you think I could get off my immunotherapy if I actually get the ivig?
what are your thoughts. I do not have anyone with LEMS information.
Joanne
-
I am on ruzugi (55 mg) and azathioprine. I could not tolerate prednisone. The side effects were to severe.
I am taking 75 mg of azathioprine and have broken out in a rash. I am a bit about worried taking it at this time.
any thoughts?
joanne Evans
-
I can’t say for sure whether the mestinon is causing the double vision. It seems to happen though when I started supplementing my ruzurgi.
Is it slow release mestinon you are taking?Maybe I will wake myself up at 2 am and take a dose.
-
Yes it does lead to stiff and sore muscles. Trying to find a way to exercise more. I am going to plead to my neurologist for a plasma exchange. I’m sure that would give me the strength to be active every day.
-
I am on ruzurgi as well and it has helped a great deal. I had added mestinon but it gave me double vision. Anybody else have that problem.
I am also wondering what you do when you wake up in the middle of the night? I can barely walk to the washroom and I have had to put bars around the toilet.
-
I was on prednisone previously but the side effects were to harsh.
I am really trying for an ivig but my doctor doesn’t seem to want to go that route.
thank you for your information. I would of course talk to my neurologist before changing any medications.