My Neuro PA appt...

[Jesmcd2]

This about summed it up! Oh, and what about?... Cant... PML😐 Although my Neuro is pretty happy about O, ugh. 🤗💕🌠

[bxrmom]

Sorry to hear your appointment didn't go so good. Hugs my friend.

[Jesmcd2 CommunityAmbassador in reply to bxrmom]

Eh, it went about how l expected... 🤗🤗💕🌠

[Amore55]

Hi Jes! I’m sending you love and hugs 🤗. Think about you often. Feel better girlfriend. We miss you.

[Jesmcd2 CommunityAmbassador in reply to Amore55]

Ma Amore55 🙂 l miss being here, just sometimes life, MS can be to much ya know? 🤗💕🌠

[erash]

Interesting

Nearly 100 Treatments for MS and Other Conditions Increase Risk for Progressive Multifocal Leukoencephalopathy

neurologylive.com/view/near...

[Greentime in reply to erash]

I didn’t know what having JVC meant with regards to tysabri. I understand now.

[Jesmcd2 CommunityAmbassador in reply to erash]

How did your appt go erash ?? The pa tried to say l could try other meds, but they all have the pml risk. The ony other med my neuro will put me on is copaxon🤗💕🌠

[erash in reply to Jesmcd2]

Bone marrow Bx wasn't bad. I've had dental work that was worse. Besides, the oncologist who did it thinks he's a comedian, "I looked at a YouTube video last night to remind me how to do these things." 😜 Results by 2 weeks...Thanks for asking

I was on Copaxone soon after diagnosed. Not bad as far as side effects but certainly not as powerful as Ocrevus...or so they say.

[Jesmcd2 CommunityAmbassador in reply to erash]

Gonna have to let me know the results! Cause l will forget to ask😢 l forget everything... Copax didnt do me any favors thats for sure. 🤗💕🌠

[carolek572 CommunityAmbassador]

What? No more Ocrevus for you, Jesmcd2 ?

[Jesmcd2 CommunityAmbassador in reply to carolek572]

Ugh😢 yeah lm taking it again in dec, they are giving me morphine for the pain🤞🤗💕🌠

[erash in reply to Jesmcd2]

Ok, well hope Ocrevus + morphine give u a smooth painless ride 🤞

[carolek572 CommunityAmbassador in reply to Jesmcd2]

I am confused, Jesmcd2 , but that’s not hard to do these days. 😆

[Helpmeup]

I know exactly what you mean! My neurologist was frustrated with me and my long list of DMT's. After enduring almost 25 years of Avonex, Rebif, Copaxone, a second round of Avonex, Tecfidera, Vumerity, and Kesimpta, I announced to my neurologist last month, that I officially quit. I'm 64 now, and will see how things go without a DMT. Hang in there, Jesmcd2!

[Jesmcd2 CommunityAmbassador in reply to Helpmeup]

I could understand your frustration Helpmeup ! Thats alot of meds to go thru! 🙁 l hope you stay stable!! 🤗💕🌠

[Cwright170994]

I get you! Was on copaxone for 5 years, then tried on tysabri. But the bloods I had done before they hooked me up, so about 10 mins, showed I have high JCV levels. So, back on copaxone I went for just a few months because I had my 1st status epilepticus event, which got me admitted into hospital for 27 days. The only good thing that came out of that was me getting a call from my MS nurse telling me my neuro had enough evidence to get me on ocrevus. I needed to stop my copaxone on X date.I'm now looking at moving onto kesimpta later this year! I got a letter from my hospital saying they're happy to move me onto kesimpta, and so offered me that. I'm going to try it out, and if I don't get anywhere, I'll just go back on ocrevus 🤷‍♀️

[Jesmcd2 CommunityAmbassador in reply to Cwright170994]

Why are you stopping Ocrevus, if you dont mind me asking? I hope Kesimpta works for you!! 🤗💕🌠

[Cwright170994 in reply to Jesmcd2]

I've looked it up on the BNF, and it works the same as ocrevus. It's easier, as you don't have to wait 6 months for your next dose because you inject it yourself once a month. You don't have to get veins either! As it's injected in the same way that copaxone gets injected (subcutaneous, if I remember correctly). Plus, the "no immunisation" period is 2 weeks after your last injection, so you've still got 2 weeks open before you do your next one!

Kesimpta: bnf.nice.org.uk/drugs/ofatu...

Ocrevus: bnf.nice.org.uk/drugs/ocrel...

[Jesmcd2 CommunityAmbassador in reply to Cwright170994]

You dont worry about the pml risk? 🤔 mymsaa.org/treatment/kesimpta/

🤗💕🌠

[Cwright170994 in reply to Jesmcd2]

I have done, but only briefly. Ocrevus has a similar warning, and I think it's more towards people who have been on tysabri for a while before switching to ocrevus/kesimpta as they're a greater risk. I've only had the 1 dose of tysabri, and I'm on my 6th dose of ocrevus. My recent MRI showed no further damage, so my brain's pretty stable, as far as I'm aware 😁🤞

[falalalala]

I hope you get the help you need.

[Jesmcd2 CommunityAmbassador in reply to falalalala]

🤣😂🤣 There isnt enough help out there! 🤣🤣🤗💕🌠

[starlight5]

Hoping you feel better🥰

[Jesmcd2 CommunityAmbassador in reply to starlight5]

More at ease l think 🙂🤗💕🌠

[DM0329]

Sending hugs, love and positive energy your way! 🫶🙏✨

[Jesmcd2 CommunityAmbassador in reply to DM0329]

🤗🤗 Back atcha!! And lm really sorry your brother is a dick.. can l say that? 🤣 You are loved! 🤗💕🌠

[kdali]

Lemtrada? Mavenclad?

[Jesmcd2 CommunityAmbassador in reply to kdali]

The mavenclad can cause tummy issues, which l already have🙁 and he was going to put me on Lemtrada after copax, but decided not to after l coded at his office🤷‍♀️🤗💕🌠

[kdali in reply to Jesmcd2]

The injection form might not cause gut issues 🤔 Yeah, I can see why he said no 😱😵‍💫

[kycmary]

I have been on O for 5 years now & other than the last 3 or so weeks before my next infusion I am doing great!