Medicine: I have some questions for you... - My MSAA Community

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Medicine

Jackjosh
Jackjosh

I have some questions for you guys i was diagnosed with ms may 2011 and i tested positive for the jc virus. I was on rebif rebidose 22mcg but the made me stop it. They said it was messing with my blood work. Im scared to change medication, completely terrified. I dont have many options. Im really scared with that pml stuff n all that i dont know what to think i cried all last night cause im scared and sont know what to do i dont want to be on them drugs that cause pml i told the dr that

14 Replies
Fancy1959
Fancy1959CommunityAmbassador

Jackson, it's Fancy1959. First I would like to welcome you to this awesome chat room since I haven't spoken to you before. We promised here to be a safe place for you to come to seek information, ask questions, voice concerns, like you just did, and simply speak to others who truly understand what you are going through. To top this off you will get the joy of dealing with some of the most compassionate, caring, and kind people I have ever had the pleasure of working with.

Next I will ask you to take a deep breath and understand that this isn't the end of the world. Many of us in the chat room, including myself, deal with having JC+ virus in our body that has elevated its count. I too, had to come off of a DMT because it was elevating my virus count. I had to stop taking to Sabri because I could sense that my body was not dealing well with the virus inside my body, my count was going up, and I showing symptoms that I believed was directly linked to PML.

Understand please that we are not doctors here and we only share experiences that have happened to us that correlate to what you're asking us. Trust in you neurologist because he or she is a trained professional and will take into account your elevated viral count and put you on the DMT that's best for you. If you don't have faith in your neurologist to know what is best for you on a new DMT it is time to find a different neurologist, or at least get a second opinion.

Many drugs on the market today, even some that are not related to MS, carry the PML warning on them. It's like a coverall safety net that keeps the drug manufacturers legally less liable because PML was a possible side effect during research. I am currently on ocrevus and my neurologist was very involved in the clinical trials and strongly, strongly told me that I needed to get on this drug and not get off even though it had a PML warning tagged on it. So again I trusted him and I'm on ocrevus and so far so good. He said During trials there was only one lady that developed PML but she had come in off of different DMT and was already sick and showing signs that they later figured out was the start of PML.

I hope this helped. We are so glad you found us and we are here anytime you need us to vent on or simply voice your concerns. Please keep us informed of how you are doing and what's your neurologist decides to change your DMT to. Until we speak again please take care and remember together we are stronger!

There are many other medicines, I use Tefidera and before that Betaseron, for years and years. No issues at all. There is absolutely NO reason to take a pml risk drug. Take one of the others and TELL the neuro that, it is your body after all.

I have taking Rebif 44msg for 2+ years. I spoke to MS Lifelines nurse and was told to inject around the middle of the day and to stay well hydrated.

Jesmcd2
Jesmcd2CommunityAmbassador

Hey Jackjosh easy there. I can understand how scared you are. Believe me I get it. ☺

So take a breath and relax for the weekend. And take a look at mymsaa.org/ms-information/s...

It will give you alot of info on the DMTs out there. And help you talk to your Neuro. ☺

Ok? Ok.

🤗💕

Jes🌠

I was sent to the Cleveland MS Clinic because Im also jcv positive. My neuro wanted to make sure Copaxone was an OK DMT to be taking since I was positive JCV the Cleveland doctor said Copaxone was totally acceptable and this was February, 2018.

My point of view: Neuro's really need to take the time to explain what the JC virus is and they should know in advance what DMT's are safe with a positive JCV test. Instead of sending an MS patient home totally freaking out and causing increased stress when it does not need to be this way. I was that MS patient that was told I tested positive for JC virus and needed to go to Cleveland MS Clinic. Very stressful time waiting to get to Cleveland only knowing what I researched on the Web. Two months of freaking only to be told I had no reason to be freaking out and my own Neuro should have known and saved me the 4 hour trip to Cleveland. Yes I'm venting I guess I have held this in a little too long and the pot just boiled over. Everytime I read posts from MS patients who are already dealing with enough then their JCV test comes back positive they need their Doctor to take the time to explain about JCV and what medications are safe to take and make sure their patient understands and is not FREAKING OUT. Failure to communicate causes so damn much grief and don't we have enough grief to deal with.

Whew thanks y'all I feel so much better getting that out of my head.

Take Care of You :)

KC

Iona60
Iona60 in reply to KC0808

Hope copaxone works for you. I was on it for ten years.

Jackjosh
Jackjosh in reply to Iona60

No Copaxone didn't work for me :-(

purpletustin
purpletustin in reply to Iona60

I was on Copaxone for 7 years and only had slight skin irritation from the inject site. To counter that, I bought Benadryl SPRAY which also comes in a generic from Walmart, and sprayed it on the skin just after the injection. I tried Tysabri, but I decided it was not my DMT of choice. I'm in my 70's now and still managing. Two years of MRI's show no new lesions. Been off any DMT per doctors' request. What issues I have appear to me to be age related.

Iona60
Iona60 in reply to purpletustin

That's great. Some studies are starting to show minimal DMT benefit after age 60.

Jackjosh, just talk to your neuro about how to monitor your progress, eat fresh, organic fruits & veggies, or u could try the Dr. Teri Wahl's PProtocal & see if it wrks. For u, i am trying to manage my PPMS with it, whatever wrks. Out, much Prayers for u & Blessings to u!😍💪---Jazzyinco

Welcome to the JC club! My MD is limiting my options at this time and we chose something together recently. It sucks to have to change meds. There’s a lot of information available online that you could do some research and have questions ready at your next appointment.

Hi Jackjosh,

I’ve been on Refiff 44mcg for the past 10 years now!

How are you doing on it, or have you changed to another medication?

Take care!

Lakiee

🤗

Jackjosh
Jackjosh in reply to Lakiee

They switch me to the 22 for blood work issues now they're taking me off the 22 I don't know what they're switching me to yet something about if it got too low and I can't fight off infections

Hi! Hope you find out something soon, as I know all to well how it is having to wait.

My Neurologist tried me on 2 different meds. Which I had some sort of reaction to.

That’s when he put me on the Rebiff, and have been on it ever since.

I do have several other health issues so some times seem to get rough.

You hang in there, and be interested in knowing what your doctor is going to say.

Lakiee

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