I have just had my 50th dose of Tysabri, no relapses since being on it but there is a possibility that I will moved to Fingolimod if I can get funding.
Is anyone taking this drug and are there any side effects that I need to be aware of?
Thank you in advance.
Hello. I’ve just had my 58th dose of tysabri (also no relapses in almost 5 years) and a positive result for JCV means I have been advised to move onto gilenya as risk of developing PML has gone up! I am unsure what to do. Just wondered if you are in the same situation or have you just been offered it as an alternative? I posted a couple of days ago and had one response from soneone who has been one the drug for 3 years (she was also part of the trial). Hopefully you will get some more replys from those who are on the drug already! Good luck! xx
Thank you for replying to my post.
I am negative for JCV but I am having problems being canulated. It took ten attempts to find a vein and I am told that this can be a problem the longer I am on Tysabri. As far as I am concerned Tysabri has worked for me and I dont really want to come off it but happy to consider other options. I am concerened about the side effects.
I wish you well and let me know what you decide.
xx
Hi anonymous,
I’m the one who’s been on Gilenya for 3+ years incuding two years on the trial.
When I was offered the trial,it was either that or no treatment.I was so thrilled to have ‘something’ that I don’t think I worried too much about the side effects even though there was a 1 in 3 chance of taking the placebo.It turns out I was taking the drug and not the placebo.It is a bit scary to read about the various side effects,but I seem to have had very few.
Any side effects that I’m aware of:my liver functions tests were high for a while,but they’ve been fine for a fair while.My white cell count is a bit lower than it should be,but is stable.I had red rashes on my legs when i started taking it,but that didn’t last long.I get colds more easily.
I did worry about my eyesight,as there is a risk of macular oedema,but no worries there.
The very first time I took the tablet (you’re monitored for 6 hours) my blood pressure and heart rate dropped,but only for a very short while and I wasn’t kept in any longer because of it.You have a very thorough follow-up when you start taking Gilenya.
I’m curious to know if your medical team have considered giving you a Portacath which would solve the problem of you being difficult to canulate?
I can’t get a link for it,but it’s an implantable chamber that is most often put in the upper right chest area under local anaesthetic ,specifically for a venous access,which stays in place permanently (but can also ultimately be removed) into which a special needle can be inserted for infusions.Once the treatment has finished the needle is removed.
I’m a nurse and see a lot of patients with these for chemotherapy.It can be used for other treatments.It seems a shame to have to stop Tysabri when there are other solutions…
Have a look at:
I haven’t really looked here much myself.You might find it useful.
Please don’t hesitate if you have other questions.You can pm me if you want.
Take care,Brenda x
Hi Brenda,
I tried to private message you but could not.
Thank you for the information you sent me and the link. I found it really interesting.
I will speak to the MS nurse regarding the Portacath but this wasnt discussed with me at the time.I do worry about the eyesight issue and as I have low blood pressure this freaks me out aswell…
I am hoping that the next time I have my treatment that I will be canulated the first time.
Thank you once again.
xx
Hi,
Sorry you couldn’t pm me.I’ve checked my settings and nothing is blocked.
I hope that you manage to stay on the Tysabri.
I also have a low BP generally.When it was really low and I had taken the first tablet (when you’re monitored for 6 hours)I had been lying down continuously,which I’m sure also played a part. I believe that a possible side effect of Gilenya is actually a raised BP.So far my BP is still ok.
Good luck!Bye for now,Brenda x
Hi, I am just about to have my 87th treatment of Tysabri. I tested positive for the JCV 2 years ago, but recently I have been advised that I am at 1 in 118 chance of developing PML which I have to say is very scary…it would be great to hear from anybody in the same situation as I really to not know what to do :(…also I have to have an EEG test which measures the electricity in the brain, this will enable them to detect if there is any PML present. I have been experiencing what I can only call freeze frames but they only last for seconds. Would be great to hear from anyone X
Hi Babylynx - I have just seen your comment of the 5th Feb. I too have been on Tysabri for nearly 7 years and am JC positive. I have just had new blood test results that show the level of titre in my system - these indicate how likely I am to develop PML and the results are roughly 1 in 60/70. I have the option of switching to Fingolomid but either option seems terrifying. I have done well on Tysabri and although my MS has deteriorated it has been fairly slow. I am really concerned about going downhill very quickly if I do come off Tysabri and also understand there is a risk that I may develop PML anyway as once I come off an immuno-suppresant drug it could flare up. I don’t think there is enough information either abour the statistics of my MS deteriorating quickly if I was to come off or about the risk of developing PML if I do come off it. It all seems very uncertain. I would be really interested to hear your thoughts as I don’t think there are that many of us who have been on it so long. I hadn’t heard about the EEG test either - can they not tell if PML is present from the MRI scans?
Hope to hear from you.
The Barts & London blog covered the subject of switching today and probably worth reading.
Hi
I had several relapses whilst on Rebif so I was offered the choice between Tysabri and Gilenya (Fingolimod). I was JC+ so I chickened out and opted for Gilenya. I’ve been on it for nearly a year now and I haven’t had any relapses and no side effects at all. I feel better both physically and mentally. Of course everyone is different and it may not work as well for you but It’s given me a new lease of life.
Good luck whatever you decide.
JZ
Very interesting reading the article all be it a bit scary. The sooner there are more drugs rivalling tysabri the better without pvl the better x