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Betaseron use

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Unread 01-05-2011, 08:36 AM   #1
msmom07
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Default Betaseron use

Anyone experienced any kind of withdrawal symptoms after stopping Betaseron injections? I had taken Betaseron since Dx in Jan. 07 and just stopped last week DT severe injection site reactions and necrosis. Now I have to be off tx for 4 weeks befor starting new therapy. I have had a terrible headache for 5 days now, thought it was sinus headache but sinus meds not helping. Was wondering if it was related to stopping the Betaseron. Another question is I have to decide about new tx ... once a month IV infusion with Tysabri with 1 in 1000 risk of PML which is brain infection that can lead to death or severe disabilty or the new oral pill taken daily which can cause a 60% decrease in immune protection. I work in critical care setting so I'm sorda leaning towards the Tysabri. Any thought???
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Unread 01-05-2011, 09:13 AM   #2
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I had headaches when I stopped taking Betaseron, but I was under extreme stress, and my liver function tests were off the charts. I was nauseous but not sure whether it was withdrawl or simply detox to get the stuff out of my system, as my system hated the stuff.

It could also be stress related, as stress is a huge trigger for MS events.

I hope you feel better.

I am currently not taking any meds to control MS. I failed off Beta, failed off Copaxone and am simply too scared to try Tysabri. The new pill also comes with some risks, and since I tend to be over reactive to all of the drugs they try me on, I have decided to go bareback.

I hope you find some answers.
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Unread 01-05-2011, 12:20 PM   #3
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Hi MSMom.

It could be withdrawal or just an MS stress headache? I hope you find relief soon and it goes away..

I too gave up on the MS meds and now take LDN and Prozac, only...A delightful combo, for me..
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Unread 01-06-2011, 08:37 AM   #4
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The new pill, Gilenya, does have much higher risk than Tysabri. And it does lower your immune system, Gilenya can increase your risk of serious infections, so I would choose Tysabri because of your work.
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Unread 02-11-2013, 02:36 PM   #5
GreenEyes
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Confused Betaseron withdrawl

Quote:
Originally Posted by SallyC View Post
Hi MSMom.

It could be withdrawal or just an MS stress headache? I hope you find relief soon and it goes away..

I too gave up on the MS meds and now take LDN and Prozac, only...A delightful combo, for me..
Hello! I recently chose to stop taking BETASERON Injections due to severe site reactions. I started taking NALTREXONE, 3mg. at bedtime on 1/8/2013. Is this the same drug you are now taking? The only negative symptom I am having is joint pain & weakness in my legs. Did you experience any of this? I put a call in to my Neurologist Thursday but haven't heard back yet. No big surprise there. I don't want to panic & rush back on BETASERON so I'm hoping what I'm experiencing is just temporary. I sure would appreciate hearing from you & ask for just your opinion on what I'm thinking/feeling. Truthfully I'm terrified I am going to lose control of my legs & be unable to walk. Thank you for "listening".
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Unread 02-11-2013, 08:04 PM   #6
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Hi Green eyes, Welcome to NeuroTalk.

The only thing I experienced, in the 1st month of taking LDN,
is leg stiffness, which went away. I still get spastic/stiffness,
but not as bad.

The pain and weakness can be symptoms of MS, but not a
side effect of LDN, as far as I know.

I understand your fear. Take a deep breath and take it
easy on yourself. Worry and stress will only make your
symptoms worse.

Are you experiencing any good effects of LDN? It isn't a cure,
and only slows the MS progression and relieves some of the
symptoms of MS, as it has for me, in the last 10 years..
(I hope)

Let us know how it goes for you.
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Unread 02-12-2013, 03:39 AM   #7
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Hello I did Beta for nearly eight years, and went off it because the side effects - the site reactions, the flu, depresson and the hangover became just too much to cope with. My doc suggested I try Tysabri, and I can't begin to tell you how much that improved my life, my mobility, fatigue and general health and wellbeing.

What I don't know, is if it was because I had become used to being completely smashed every second day, or if it was the 'miracle of Tysabri' - but I have (up until fairly recently) been very stable (and even now, I don't know if what I am experiencing is MS deterioration or something else).

You speak of the risk of PML - have you been tested for the JC virus? If not, then you should before you make this decision. That puts a completely new complexion on your risk profile, particularly if you have been using if for more than two years. My understanding is that if you are JC+ it then takes your risk from 1/1000 and drops it to a much less acceptable 1/250 (4/1000). Having said that, I am JC+, have been using Ty for more than three years and have decided to stay with this drug.

Am I doing the right thing? I have no idea - I do know however, that one person has contracted PML while using Gilenya (that was after previously using Ty though). I work in Adult education, often with socially and economically disadvantaged students, and I am frequently exposed to illnesses, and sometimes persons with hygiene issues - so I am somewhat reluctant to try Gilenya.

It is all a risk, none of this has been around long enough for us to make completely informed choices IMHO. We just do the best we can with what we know and cross our fingers.

I have no idea if this helps you or not. Just wanted to put it out there.

Lyn
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Unread 02-13-2013, 06:57 AM   #8
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Quote:
Originally Posted by SallyC View Post
Hi Green eyes, Welcome to NeuroTalk.

The only thing I experienced, in the 1st month of taking LDN,
is leg stiffness, which went away. I still get spastic/stiffness,
but not as bad.

The pain and weakness can be symptoms of MS, but not a
side effect of LDN, as far as I know.

I understand your fear. Take a deep breath and take it
easy on yourself. Worry and stress will only make your
symptoms worse.

Are you experiencing any good effects of LDN? It isn't a cure,
and only slows the MS progression and relieves some of the
symptoms of MS, as it has for me, in the last 10 years..
(I hope)

Let us know how it goes for you.

Thank you for your reply! A good effect of being on LDN is no more shots! Yippee! After being on BETASERON since 1990 I was still having site reactions to the point of an area of my skin becoming necrotic. I had to use special creams & it has alomost returned to normal but my body is full of red, raised areas from the injections. What a comfort to me to hear you say the leg stiffness was only temporary. You have given me the courage to continue on with the LDN & hope for the best. I do tend to be a worry wart & I know I must stop that! I am so glad I decided to check this site out again. I thought I was doing okay on my own but I was wrong. Thank you again for replying to me & for your warm welcome back to the group. I hadn't been here in so long. It's good to be back! Have a great day!
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Unread 02-13-2013, 07:28 AM   #9
Lynn
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Hi Greeneyes

As others have said, welcome and pleased to meet you. I remember all too well the 'hail damage' the Beta causes - the dents and lumps that stay for months/years and the angry inflammation and pain that goes with it.

So hope that LDN is fantastic for you - you deserve it (as we all deserve a break).

Let us know how it works for you.

Cheers

Lyn
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Unread 02-15-2013, 10:46 PM   #10
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I was on Beta for 7 years and stopped due to the side effects. Took a two year med break and went on Tysabri almost three years ago.

No regrets. Tysabri has been great for me. I haven't had to use a cane since I've been on it. Last year my MRI showed a reduction in lesions. The benefits have far outweighed the risk in my case.

Be well,
Ceci
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