Last reply 1 month ago
Help needed

I need my ms buddies to give me the run down on what med they take. Tysabri was great I only had 1 infusion a neuro gave it to me while I was recovering from a relapse in March (he took me under his wing so to say) but I moved to Clarksville and the after effects of not having it for about three months landed me in the hospital with multiple lesions and gallbladder removal surgery. It came back to knock me down hard. Even tho my dr Is apart of the 1 touch program he doesn’t like prescribing it. Avonex caused my legs to not legs to not work not because I didn’t have strength but because vertigo had me all out of wack (I only took it 1 time as well) I see alot of things about people going all natural and they are symptom free. I’m at a drawing board with it and could use advice. I didn’t feel a change within myself on tysabri but Brian mentioned he saw improvement in my walking. I’m just scared of pml and becoming JC + and my dr. Having to take me off of it again. I don’t want all the side effects of other meds. I can deal with alot but vertigo is a hard no for me the flu like symptoms I don’t like but can deal with. This all is about to drive me mad. I’ve been studying and reading anything I can get my hands on. If it helps I take Gabapentin and hemp oil. Thinking of weaning off of the Gabapentin not because it doesn’t work. It works great but I’m afraid of becoming addicted to it unintentionally as it has been scheduled now. The nurse in the hospital was not worried about me becoming addicted and felt it truly helped in my case. But, when I didn’t take it for a few days in the hospital I was in alot of pain and had withdrawal symptoms. Ugh advice please. Pointing me in the right direction would be helpful.

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brando
1 month ago

At the end of the day the drug you take is your choice they test me bi-annually for the JC virus.

I am probably bias here but tysabri has done nothing but good for me. I would never consider going natural I hate medication and I’m the kind of person who hates taking cold and flu tablets and mild pain killers. But I dont think I could ever consider going off my Medication it’s almost a phobia for me to consider not being protected.

You will find what suits you best though contact an MS nurse or a Neuro that specializes in MS and ask them for options.

all the best.

Brando


rachschader93
1 month ago

Thank you so much. Any input is great. My dr will not prescribe tyabri maybe he knows more than I do. I asked for them to but got waved off. He’s a good neurologist but his ignoring me really upsets me (he’s scatter brained) I’m not so much afraid of becoming jc + but the rebound effects of not being able to have it anymore. I am forgetful with any meds. I hate taking them for anything. I guess I will talk to my neuro and if changes aren’t made I will request a new one. I’m a firm believer in pushing until I get results.


stumbler
1 month ago

Hi @rachschader93 and welcome.

In the UK, we have this tool which we can use:-

https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid

It will be useful for you, but you’ll have to pretend you’re resident in England. It also doesn’t include Ocrevus, which has only recently been approved in the UK.

You do have to be your own advocate to obtain the treatment you want.

Lifestyle changes, e.g. diet, may also be of benefit. Mainitaining a food diary would help you determine what is and isn’t right for you. You may want to consult a naturopath for advice too.


mamawals
1 month ago

For the vertigo, have you tried Dramamine? Actual Dramamine or antivert/meclezine, not a store name generic? I get vertigo, sometimes so severely that I can’t walk and have lots of vomiting. The first time I was prescribe meclezine I went to the pharmacy and they told me to buy it over the counter. I bought the CVS store brand and it was not the same thing and did not work (I think it was the active ingredient in Benadryl instead). Then when I followed up my doctor pointed out the difference. Meclezine/antivert work very well for me but the other stuff not at all. Also, zofran really helps me with nausea until the motion sickness meds can work.


londonlad
1 month ago

@rachschader93

I wanted to say hi, and share some of my experience with things, including Tysabri.

Firstly, I know firsthand the dread of vertigo. My introduction to MS was a brainstem lesion that quickly gave me the inability to walk without my feet 5 feet apart, the world was spinning, vomiting, double vision, blurred vision and all sorts of “fun things”.

Vertigo was easily the worst of any of them, or anything else I’ve ever experienced.

The good news is, while it took an awful long time ( over 6 months for me) it has resolved and I am left with juts a few things that I can live with.
I say this not to worry you it will take 6 months to recover. It might not take that long , but I want to reassure you the chances are things can get better over time are very high. But I know it’s hard now.

I didn’t take any medication for the vertigo, besides the steroids I was given for the relapse itself.

With Tysabri, it’s important to know that there is something called a rebound effect. So if you stop, you can have a very serious relapse, and so it’s important to be aware of this. Given you had only 1 infusion seems unlikely it’s a rebound and just a conincidence, but that’s my only opinion and I’m not a professional. So may be worth discussing this with your doctor. Are you aware of the rebound effect?

Tysabri has been great for me. I was lucky to get started with medication fairly quickly after my first relapse and I’ve not to my knowledge had any more, and the first yearly MRI showed no new lesions.

I’ve had no adverse side effects whatsoever and the biggest issue is having to go to hospital monthly. Which is minimal impact. So I can’t complain and happy with the treatment.

Am I worrried about turning JC positive. Not really as much as I am not taking medication at all. That scares me more.
And from being on this forum a long time, it’s obvious that many of our friends who choose not to take medication, are often worried about that. And that seems a lot of stress to carry around.

Monitoring JC status is key, and if you become JC+ then it’s importnt to have a backup plan. As you don’t just stop taking Tysabri. You have to move to a new DMT, and there are plenty of options out there these days.

My advice, would be decide what’s best for you, find a doctor that supports you and helps guide you, but ultimately will listen to your needs.

There’s a whole bunch of knowledgeable and friendly folk on this site. It’s a great resource and community.
We also have an oracle called stumbler, who really is the cohesion of the site.

So please don’t feel alone, and bounce ideas off the group as they come up.
But do the things that you can to help such as eat well, exercise if you can (I know it sucks with the vertigo) but I think pushing through it helps the brain rewire itself and finds a way to reach a new equilibrium.

Take care


rachschader93
1 month ago

Thank you all so much for the tips I have Meclizine in my nightstand drawer but it doesn’t seem to help Valium helps I only had vertigo when I first got diagnosed. It was horrible. Then it came back when I tried avonex I wasn’t sick but couldn’t walk I felt as though id fall. I’m still recooperating. I have a limp now which my children find funny. I’m like a baby returning to walk. We joke around about it but not knowing what medicine to best take is really stressing me out. I should know more at 3pm CDT when I go see my neuro.


rachschader93
1 month ago

My neurologist passed me to vandy and is talking to them about tysabri.


grandma
1 month ago

Hi @,rachschader93, I’m on Tecfidera, 23 years on Avonex, started off when there was nothing else available. Worked fine for all those years, became sp last year, since Jan been on Tec. After 23 years of injecting myself, taking a tablet twice a day is a breeze! Tec is supposed to lengthen time between relapses and make them less intrusive. Been on it for 8 mths now, used to relapse 2/3 times a yr, nothing so far end we’re at the end of Sept. so I’m going for a full yr relapse free ar Christmas, then I’ll say it’s working!😍


rachschader93
1 month ago

That’s great! My new neuro should be able to help living in Tennessee the Vanderbilt neuro specialist are the top of the line for my area. I’m excited! I’m glad your doing so well. I’m gonna educate my myself on all the meds and ask tons of questions when they give me an appt. Lots of love to every one who answered. I am grateful I found this site. My neuro put me at ease giving me to someone who was better equipped to handle my case.


rachschader93
1 month ago

I am going to the new neurologist tomorrow at Vanderbilt for the tysabri. Im so excited. Who who have thought they would get excited over a doctor’s appt? It’s the little things.

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