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Interferons-How do you decide?


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Old 02-26-2011, 09:03 PM   #1
Afspmichelle
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Interferons-How do you decide?

So, I just spent 3 days in the Hospital after 3 months of increasing symptoms. I'm scared out of my mind, but the good thing is, is that I left with a Dx. So, where do I go from here? After I finish these mass amounts of steroids to tame this flair I guess I need to choose a treatment. What have been your experiences with interferons and other supressing meds? I'm so afraid I'll make the wrong choice! They all sound pretty much the same. How do you decide?

 
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Old 02-26-2011, 09:56 PM   #2
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Re: Interferons-How do you decide?

A diagnosis! I am happy that you got a diagnosis- sorry that you have to join the MSers, but you have plenty of fellow MSers here.

I do not do meds, but the path you choose needs to be one that fits you. Your doctor should be able to provide you with a list of the meds available if you decide to go that route. Read- Read- Read- this is the best way to make an informed decision. Also, please discuss your options with your doctor. Inquire about the side effects as well as any medical tests you need to have (such as checking your liver).

Your life starts anew with MS. I hope you stay strong and stay positive!
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Old 02-26-2011, 10:24 PM   #3
Afspmichelle
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Re: Interferons-How do you decide?

I'm just so curious. How do you control this without meds? This was my first known flair up, but it was often debilitating! I tried stretching and meditation (hoping to relieve a pinched nerve or something to that effect), but with no relief. I just read that the interferons are only effective in about 1/3 of patients, so I would truly like to know your strategy.
I have to add that while this is overwhelming, I do feel blessed that I was dxs rather quickly. Now I know what I'm dealing with.

 
Old 02-26-2011, 11:37 PM   #4
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Re: Interferons-How do you decide?

I found that the best thing for me was to follow my first neuro's advice. He told me that stress was my worst enemy and that if I did not control my stress, I would not go far. I found, for me, that there are triggers which cause many of my MS problems to pop up. I have found that if I avoid these triggers, I have some control over my disease.

There are things over which I have no control. When that happens, I let it go and rest until I recover. Stretching does help, for me at least. My neuro put me on passive exercise. I use an Exercycle. For my nerve pain in my back and legs a heating pad has really helped me.

I do not dwell on what could have been because God did not place me on the path to what could have been. I am happy to walk the path I now trod upon because I am certainly blessed.

When I was diagnosed, there were steroids. My neuro did not recommend that route to me. He told me that I would heal without the steroids and that I would not have to worry about the side effects. I am progressive and I have to deal with MS as a daily thing. This is my "normal". There are no meds for progressive MS. There is no cure for MS.

You may find that the med route will not help. Nerve pain does not always respond to pain meds. You have to decide what is best for you. I hope that you find the path that fits your life. Whether you choose meds or no meds, you are in good company.
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Old 02-27-2011, 05:15 AM   #5
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Red face Re: Interferons-How do you decide?

Hello Afspmichelle,

MS is the only disease I am aware of where the patient gets to choose which Disease Modifying Drug (DMD) to use. As far as effectiveness they are all about equal. Many will base their choice on which one fits into their lifestyle, how often do you want to inject. You really can't make a wrong choice and you can always change to a different DMD.

Avonex, Rebif, Copaxone, Betaseron do not suppress the immune symptom but are considered immune - modulating. There are some medications that do suppress the immune system but they are not the first line of defense.

The DMDs are to HOPEFULLY slow progression, HOPEFULLY decrease relapses, HOPEFULLY decrease the severity of relapses and to HOPEFULLY decrease lesion load. A lot of HOPE...

Unfortunately, there is no guarantee with or without the DMDs. Some still progress, you can still have relapses and you can still show more or less lesions on a MRI. Some do well on the drugs, some do not.

I do not nor have I ever used any of the DMDs. I have been diagnosed for 26 years with symptoms that go back to childhood. I have had a total of 5 exacerbations (relapse, attack, flare-up) in all of these years. To this day I am still considered Relaping/Remitting, I have not (yet) transitioned to the next stage (secondary progressive).

My choice (no DMDs) is a personal choice. Not everyone will have my experience.

I wish you all the best in your choice of DMD and remember...there is no wrong choice.
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Old 02-27-2011, 08:00 AM   #6
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Re: Interferons-How do you decide?

hi there. I am on Rebif, and I wanted to give you my input as well.

First of all, if you were diagnosed with MS more then 14 years ago, there were no disease modifying drugs, so many people never went that route to begin with. Also, if you have anything but Relapsing/Remitting MS, most of the drugs are not available for any other type. There are some studies being done with progressive MS and the existing DMDs, however at this point in time, unless you are diagnosed with Relapsing/Remitting, nothing is FDA approved and proven to work.

The studies DO show that they are not alike. Each drug has its own studies and its own rates of effectiveness. Betaseron is the first drug which was brought out. Avonex came second. Betaseron is injected every other day. Avonex is once a week. They are both interferons. The problem that many people have with only injecting once a week, is it takes SO much longer for the body to get used to the drug, and the side effects can be wicked...so, they came out with Rebif. Rebif, is given 3 times a week, thus keeping your blood levels more even. You tend to get used to the drug MUCH quicker, and therefore its easier to manage. Also, with Rebif, there is an autoinjector, for those of you who are needle phobic (you never see the needle) and its the smallest needle on the market. Rebif and Avonex are identical as far as the actual drug being injected into the body.

Copaxone is another choice. This is NOT an interferon and works differently. Its injected daily....some people like Copaxone, I was deathly allergic to it. I stopped breathing after the third shot....and switched to Rebif where Ive been very happy.

It really is personal choice. I can answer any questions you might have about Rebif...I travel with it. I actually really LIKE being on it....I feel so much better on Rebif, and after 5 years have not had ANY new MRI activity and not one relapse since month 5 of the drug. WIth any of the drugs, it takes about 6 months for it to really start to work, so dont think youll instantly feel better or that you will never have another relapse. You might in the beginning, you might even after being on it, however it should reduce progression and should reduce the severity of any relapses.....

Snoopy is right in saying it is a crapshoot as to which drug works best for you and that you can always change to another drug....you do have to be monitored on any Interferon. Blood tests the first year, every 5 months, after that only yearly.....MRIs should be done at least yearly, more often if possible (if your insurance allows it) for the first 2 years to be sure no new activity is happening.

If I can help more- ask! Congrats on your dx.....its a very manageble disease.
Nikki
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Old 03-02-2011, 01:39 PM   #7
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Re: Interferons-How do you decide?

I agree that I think the important thing is to get on a drug and they all will help improve your chance of reduced relapses etc. I too wonder if I made the right choice but I don't want to dwell on it. I think the important thing is that I am on one...all of which have good stats to back them up. I opted for copaxone and have been on since May 2010. I didn't want the flu symptoms and larger needle of avonex (rebif wasn't suggested). My side effects, all skin issues, are starting to improve. Best to you and stay in touch, Jodi

 
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