lewyyb 02/06/17
Last reply 8 months ago
Tysabri

Hi all, first post on here. I was diagnosed late February after experiencing first symptoms (numbness from waist down). Fully recovered from that now which I am thankful – at least on the outside 🙂 had another MRI showing 3 mor lesions in brain in April and at my meeting with the consultant in May was offered a range of medications but have gone with the advice of the consultant and opted for Tysabri. What are people’s experiences of this? I’m worried about PML and what I read on the internet doesn’t help me only scares me more. We had a little boy in January and I am unsure of the risk as I want to be around for him.

Apologies if asked elsewhere but would appreciate advice and experience of how closely risk of PML is monitored.

Thanks in advance and hope you are all well.

Lewis 🙂

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californiadreamin
8 months ago

Do you know if you are jcv positive or negative? I think that’s probably to single most important factor. When was your prior MRI and how did that look?


lewyyb
8 months ago

I’m not sure yet, they have taken blood and urine samples. I think that is what I am whittling about. I had MRI scans in February and then again in April which showed three new lesions in the part at the top of the spinal cord. If you were positive would you still opt for that treatment?


wahlswarrior
8 months ago

@californiadreamin is 100% right, the most important factor is to find out if you’re jcv positive, before you start Tysabri and during. Congrats on the baby and you will be around for him. Put serious effort in modifying your diet. Stay away from food that feeds pathogens, like sugar, processed food. Personally I think if you develop PML there is a higher risk of death than MS, but what do I know? If you are newly diagnosed, you should look into Minocycline, a less expensive and less dangerous drug that is making waves as of late. There have been studies in U.K and recently in Canada conducted with positive results.


wahlswarrior
8 months ago

I would definitely not opt for that treatment if you are positive. But then again, confirm with a professional neurologist, as sometimes the risk is worth the benefit? Only you know your pain.

Question: did you take solumedrol or another steroid during your relapse before your second MRI?


lewyyb
8 months ago

Thanks. I’ve been altering my diet since I’ve been diagnosed and have been working on making my legs stronger in the gym.

The neurologist asked for the second MRI as I was getting vibrating in my legs which came after when I moved my neck forwards.

You’re right! I will speak to the consultant when the blood samples come back. Copoxone was ruled out as it was suggested it would take too long to work effectively.

Yes I was given steroids for three days when I was in hospital. I’m not sure if the name though. Would that make a difference to MRI scans?


avrilt
8 months ago

Hey @lewyyb welcome and congratulations on your baby boy! I am on Tysabri and have been for a year now. I am JC positive so yeah there are more risks, I was having constant relapses since my diagnosis in June 2015. I went a year without treatment (maybe a mistake, who knows but it is what I decided at the time), but I had a big relapse in Feb 2016 and was told I needed to start treatment, and it had to be one of the more effective treatments as I have highly active MS. But I have had two new lesions, I am having another MRI later in the year to see where we are at. In terms of the treatment it has been fine for me just get tired and sometimes a sore head on infusion day but other than that it has been fine. I do wonder what state I would be in if I hadn’t started taking it. You need to do what’s right for you and your family. Personally I don’t worry about the risks, I worry more about what MS will do to me if left uncontrolled.

I wish you well, if you have any more questions I am happy to help!

Avril x


californiadreamin
8 months ago

@lewyyb of course you have to check with your dr but I think from what you have posted so far I wouldn’t feel great doing tysabri until you had some more data. Can you help me understand your MRI results better? You had two? Both with contrast? Do you know how many enhancing and non enhancing lesions you had in each?

I think both gilyena and Tecfidera are good options of a more effective treatment then copaxane and wondering if you considered those.

My wife and I follow oms (overcomingms.org) consider starting something like that right away while you get this sorted out.


kea21
8 months ago

Hi, I agree with the others, the most important thing to know is if you are JCV positive.
I have been through a few of the treatments and have now had one Tysabri treatment,next is 7th July! So far so good, but still having mild morning headaches.
I could not handle Gilenya, seems any of those that lowers your red blood count is a No go for me? (Gilenya, Techdifera)
I was very concerned about Tysabri and PML risk, but after running out of options in this part of the world I grudgingly agreed! But so far so good!
Only issue is I see is a large majority cannot stay on this past the two year mark? Hopefully something else is available by then?

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