Last reply 8 months ago
Drug choice

Hi all,
Being a 35 year old female RRMS patient since 2005, my doctor offered me three active ingriedents (Ocrelizumab, alemtuzumab, rituximab)
Now he wants me to evaluate among the drugs (mabthera, lemtrada, ocrevus)
I have on Rebiff 44 and gilenya. The side effects of autoimmune disease risks and tyroid makes me afraid. Moreover, not to be able to shift for a while I have high jwc so tysabri is out of choice for me. Doctor warns that gilenya is not effective for me since I had 2 relapses on gilenya/fingya. He thinks that gilenya is not effective for me after 2 years.
Anyone like me? Please let me know your thoughts if you have used using these drugs or have info about these drugs. What would you do if you were in my shoes?
Looking forward for your comments,
Missist

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vish
8 months ago

Hi dear
I’m vish.new I the blog
Been diagnosed for 3year is very hard .
Had 6relapse every time the prescribe steroid
Was on tectdira. 2years
Last year in November consultant switch me on gilenya after 6days course I stop it had a serious attack now I’m not in any med ATM.I’m boiling turmeric honey boiled it 25minute just started n I’m feeling ms is earasing. Finger cross .


stumbler
8 months ago

Hi @missist and welcome,

There are three drugs that you have been asked to consider. Each has two names, Ocrelizumab/ocrevus, alemtuzumab/lemtrada and rituximab/mabthera.

Each drug is powerful and each affect your immune system, either removing it and allowing it to regenerate without the MS or modifying aspects of your immune system to remove the MS.

If previous drugs have failed, then these options are the next logical steps. Yes, they come with risks, but so does aggressive MS. It’s just that the risks associated with the drugs are known risks and can be treated, whereas, MS is just unpredictable………..


hollylb10
8 months ago

Boiling honey and turmeric? Tell me more?

I drink turmeric tea everyday, the more I drink the better I feel! I also take flaxseed oil.

Just had a bad day, feeling tired and heavy but then every other Mum on the school run tells me they are tired and stiff….so sometimes I don’t what is ms and what is just life in general!


missist
8 months ago

Haven’t tried turmeric although I had heard before. I did want touse after consulting the doctor. How do you make tea?


mermaidia11
8 months ago

Tumeric is a good anti inflammatory! Taking it with piperine enhances its effectiveness. That’s easy done by taking a whole peppercorn with it.

The drugs sound hardcore. ‘If in doubt, leave it out’ is my maxim.

As an insurance policy for the future, it seems like a rough deal as I don’t know of anyone who has held it off for long enough for it to be worthwhile. Or not been troubled by massive side effects.
But that’s my SP view.
I’d research LDN chick while you are deciding. The meds don’t sound like they agree with you. LDN is a tiny dose and doesn’t interact with anything.
The holistic approach is also empowering and with the right programme for you, you could keep it at bay a long while longer, and not suffer massive side effects?
It’s just obs view – i personally don’t think DMDs are the answer.

It’s a question of your quality of life and finding a way to live with it and adapt, until a cure is found(I would not be holding my breath anymore, now I know how the pharmas work)


andy365
8 months ago

Hi Missit
I am 9 months post round 1 of Lemtrada and it’s going well. I was like you very unsure about the DMT route but choose the one I thought gave me the best odds.

I understand your fear as once you have had it no going back. I have regular bloods every month I see my MS nurse every month so I believe I have better care on it.

I didn’t have this much contact before Lemtrada and I am monitored really well. Thyroid can be treated and the immune condition is rare and you know the signs to be vigilante about.

Cancer warming come with every DMT to some degree, I think it’s a gamble worth taking if I am Mobile and relapse free but we are all different and it has to be right for you.

I wouldn’t over think it though more and more people are having Lemtrada and it’s been a life saver for many.

Hope you get some peace and direction soon.

Andy


nutshell88
8 months ago

I wish I could advice you but I was daignosed 2005 took interferron one year then stopped and thats all I’ve ever took till now. I have same concerns like you.
But since im still not disabled i may think later or i may not im 30 years old have you ever thought of asking another neuro?

Be well
R


mcgilligan
8 months ago

I have been on Rituxan (rituximab) since May of last year. Before each infusion I must make sure that my vaccinations are current.

I have not had any negative side effects yet.

Before this I was on Tecfidera for 3-4 months and Avonex for five years.


marcyg921
8 months ago

I’m on Lemtrada and I had Round 1 back in February and I’m getting prepared for Round 2 in 3 weeks time. I know the side effects can be scary and I could’ve went the route of trying to control my MS through good diet and exercise (I still do these btw) but it would have never eased my mind about what MS was doing to my body. In 2016 I relapsed at least 3 times and my Neurologist told me I should go on Lemtrada to help try and stop the relapses and I can honestly say it was the best decision I’ve ever made. I haven’t relapsed since mid 2016, had no major side effects from the treatment and all my blood tests have come back fine and the symptoms I previously had have either gone or improved.

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