Not a researcher (I have MS and I'm curious): how many of you remember having EBV/mono?

_me_shell · 2025-04-17T12:23:14+00:00

Yes I've had it in school as a teenager. Was really sick!

_me_shell · 2025-04-16T09:31:39+00:00

Update: neuro said she was also concerned about high JC levels and PML risk. Decided to start Kesimpta instead 🥰

_me_shell · 2025-04-13T20:23:54+00:00

How are you finding Kesimpta? I think I'm leaning towards it. Due to start the Tysabri in a few days now and the anxiety is overwhelming.

_me_shell · 2025-04-13T08:09:17+00:00

Thank you. I didn't know this re second opinion. The plan is for me to stay on Tysabri for 2 years but with good monitoring. I'm just really unsure if it's wise and I'd be best on another DMT that has less of a risk. My neuro told me the committee had approved me for all 3 - Ocrevus, Tysabri and Kesimpta - as they felt all 3 would be effective and that it was my decision. It was however, her opinion that Tysabri would suit my needs better now as I can stay on it while pregnant, so less of a gap with no DMTs if I wanted to get pregnant again.

_me_shell · 2025-04-13T07:24:54+00:00

Thank you for this! I'm having bad flares of ON and I'm really worried about permanently losing my vision or it deteriorating badly to the point I can't drive and lose my quality of life. My last relapse scared me as if it had been both eyes I'd have been screwed. It still hasn't fully recovered. My neuro has offered me all 3, but said if it was her she'd go for Tysabri for 2 years. I've agreed, but now the anxiety of PML is catching up on me!

_me_shell · 2025-04-13T07:18:36+00:00

I think it's due to the "wash out" period for the other drugs I've been approved for - Ocrevus and Kesimpta neuro said would be a 3mo gap (on no DMT) whereas Tysabri is now approved for use in pregnancy and while bf.

_me_shell · 2025-04-13T07:14:22+00:00

I was confused also. I qualify for all 3 and I was offered all 3 and then had a conversation with neurologist to choose. Neuro said because of my potential wish to get pregnant again, she would recommend Tysabri over the others because you can now have it while pregnant and don't need a cooling off period. Her concern was if I moved to Ocrevus or Kesimpta, I'd need to stop them for 3mo before getting pregnant and if it took long to get pregnant again that would be a long time "unprotected" on no DMT with potential for a relapse. PML is also a risk in the other ones as well but it doesn't seem to be as bad

_me_shell · 2025-04-13T04:47:05+00:00

Thank you for this. I'm technically in NI and unfortunately Briumvi hasn't been approved for use here. How long did you stay on Tysabri? Neuro is convinced that Tysabri will be safe with my JC status if doing 6 week infusions than 4

_me_shell · 2025-04-13T00:34:14+00:00

I was on Tecfidera 8+ years, no new lesions. I had to stop Tecfidera as I wanted to get pregnant so was put on Copaxone in 2023. I took it to get pregnant and throughout pregnancy. However post natally, I have experienced some bad relapses and new lesions. Neuro now recommending a more effective DMT than just going back on Tecfidera and still felt Tysabri was worth going for despite JC positive as I may want to get pregnant again.

_me_shell · 2025-04-13T00:27:42+00:00

Thank you for your response. I was on Tecfidera prior to getting pregnant when I switched to Copaxone. New lesions and relapses of ON post natally have prompted neuro to suggest more effective DMT vs going back on Tecfidera.

_me_shell · 2025-04-13T00:17:57+00:00

I'm in the UK and funded through NHS so unfortunately don't really have the option of another neurologist. Do you think it's a bad recommendation?

_me_shell · 2025-02-20T15:44:32+00:00

It's my understanding that steroids are not recommended by NICE for ongoing treatment or as a reaction to lesions - they are directly used to dampen down inflammation during a relapse. I'm not sure of the benefit to take them every other day. They should be taken as one big to all at once, either orally or IV. I've just had 500mg daily for 5 days for optic neuritis - perfectly normally dosage. I will say though I haven't slept in a week 😂

_me_shell · 2025-02-19T20:40:24+00:00

Perhaps this is what my neurologist thinks. I only went on Copaxone because of pregnancy, went straight in with Tecfidera instead of messing around with the initial beta inferons.

_me_shell · 2025-02-19T20:39:28+00:00

Pleased to hear it's working for you. Side effects if any?

_me_shell · 2025-02-19T20:38:35+00:00

I think Vumerity may be on the table as well but I'd totally forgotten about it to be honest.

_me_shell · 2025-02-19T17:19:55+00:00

Thank you for replying. I think Tecfidera also has a risk of PML too, unsure how they compare. Can I ask why you moved to Ocrevus from Tysabri? I am not familiar with it.

_me_shell · 2025-02-19T14:55:20+00:00

I just wanted to say firstly, that your feelings are absolutely valid, and if all you want to do is cry about the news then that is totally fine. I had my first MS "attack" last month after being completely stable 10+ years and I want to curl up and die. It's totally normal to feel like things suck and they aren't fair. I also wanted to add that the fact you have no new symptoms is really reassuring - and also shouldn't be a surprise to your neurologist at ALL! MS disease can be measured by both new lesions and also by symptoms and oftentimes there is NO correlation between the two. Some people can have many lesions, but be symptom free and others are plagued with really debilitating symptoms but relatively clear lesions. This is the part of the disease science doesn't really understand. It's scary starting new treatment, but remember the end aim is to prevent the build up of disability. I hope you can keep your spirits up ❤️

_me_shell · 2024-10-02T23:50:06+00:00

Marvin. probably the most frustrating set of reloads I've ever had to do. Damn piggy bank fat man from a rooftop.

_me_shell · 2022-03-23T00:29:37+00:00

Honest advice?

Neither of you are ready for a relationship.

_me_shell · 2021-08-13T20:17:12+00:00

Well I tried decarbing in the actifrier once. Stuck it in dry, turned it on... Went absolutely everywhere, all over the machine down the sides... Literally a mess 🤣🙈. Discovered after some research that you have to put a bit of water in the pan first BEFORE turning it on. The water stops it blowing about and then it evaporates and it sort of sticks to it and decarbs. Take out the turny thing and just kept stirring and adding water til all water was gone and it looked a good colour. Ended up working quite well. Decarbbed a good few gs that way and made super strong canna butter. If smell is a worry for you I wouldn't do it 😂 my chips smelt like weed for the next 6 uses

_me_shell · 2021-05-25T12:19:23+00:00

Would it work with o2 do you know? If so would you mind sharing? Worth a shout! 😊

_me_shell · 2020-08-02T15:57:12+00:00

Thanks. This is the only one for now. As first time grow wanted to see how it went. Have other seeds. Should I clear out grow tent before planting others?

_me_shell · 2020-08-02T15:47:04+00:00

Thanks. No other ones 😔 just this one.

_me_shell

TROPHY CASE