Hi, I'm interested in any personal experiences from those who have used interferons for MS over a period of 10 or more years. Did you stop them? Did you discover any side effects that developed late in treatment? Have you changed multiple times?

I was on Betaseron for about 5 years and developed severe depression which is very much out of character for me. I then switched to Copaxone and have been on it for almost 6 years. I don't feel it is helping and even wonder if it is making me worse. Please tell about your long-term experience with interferons.

I was on Interferon,but not for MS,it was for Hepatitis C,and I was supposed to go 11 months.This was just last year,2006.I started it at the end of January,because I had the chicken pox through January.By May,they had to stop the treatments in order to save my life.It gave me a side effect of Hemolytic Anemia,and the doctor overlooking my labs and treatment knew the whole time,and didn't tell me,because he was so excited to see my viral load dropping at the same time.He sat and watched as my hematocrit dropped rapidly,my RBC's dropped,WBC's dropped,hemoglobin dropping,it was like I was a lab rat that was expendable to him.I was unable to walk from February 2006,until December 2006,then in May my labs showed my hematocrit at 27,and I guess he didn't want to go to prison for manslaughter or worse,so they stopped the treatments immedietly! But I was so weak,and sick,and my insurance would not pay for the medicine to bring my RBC's back up,so I had to ride it out until they rebuilt up on there own in my body which took about 2 1/2 -3 months,but I was a germ catcher,because of my immune system being so depleted for so long.
Now they are saying that the treatment will kill me faster than the disease.So I have to wait until science comes up with a new one.
I hope your luck is much better than mine,when dealing with anytype of interferon,cause I'm still sick,I still haven't gotten better,even though my bloodwork has stabilized! I wish you the best!

Hi! I have not been on it for that long, but I wanted to make sure you knew that the Copaxone is not an Interferon like Beta, and others. It is a synthetic drug. I THINK that would mean it may be better for longterm use, but please don't quote me on that. I just wanted to be sure you were aware of the difference I do know someone on BT that has been on "B" since it has come out. If you would like me to copy/paste your question to her, I can, just let me know

YEAH,IF YOU KNOW SOMEBODY THATS GOING ON THE SAME KIND I DID,OH,DEFINATELY COPY/AND PASTE MY STORY TO THEM! I WOULD APPRECIATE THAT,CAUSE THAT DOCTOR DIDN'T WARN ME AT ALL,AT THE RISKS.HE JUST SAID IT WOULD FEEL LIKE THE FLU! BULL ****!! IT ALMOST KILLED ME,I HAVE A CASE AGAINS'T THIS DOC. NOW FOR NEGLIGENCE! THANKS!

Justice, it sounds like you may have had a severe allergic reaction (anaphalaxis?) I am not sure what actually happened to you, or if it happened the first, second, etc.. time you took it, but the se's really are just flu-like sx's. I am on Betseron, but I do not get much of the se's. Maybe just some hot flashes during the night and next day.

But, like any drug, there is always that chance you are allergic. I had several IVSM treatments over the years, but when I got it last year after my relapse, I went into anaphalactic shock. So now I am allergic to the very medicine they use to treat people with severe allergic reactions, whooda thunk!

You might want to explore that possibility first... just a thought

I was taking a shot once a week,and 5 pills a day,of something else combined with the shot for treatment.If it was an allergic reaction,I think the Doctor should have stopped before I got 1 point away from needing a blood transfusion,because he was watching my blood tests once a week,and seeing my levels drop rapidly,and when I would ask how my labs were,he would say fine,you're just dehydrated,he would use the words"bone dry"!Once he left the room,and I looked at the labs myself ,and I couldn't believe what I saw.So from that day on,I requested a copy of my labs to take with me to my PCP.It was my PCP that picked up the hemolitic anemia!So when I mentioned it to the other Doctor ,he said he knew I had it,and that he told me I was sick.I told him that next time to be a little more specific,because sick is a pretty general term,it could mean "the common cold",or "Cancer"! The following week was when my labs dropped into the danger zone,and it had to be discontinued.I requested a copy of all my records throughout the treatment period,and signed for them.It's been a year,and they still haven't sent them,but a few months ago I did get a letter in the mail saying that they would no longer be treating me for my gastrointestinal needs in the future,and gave me no reason,theyt even said they wouldn't treat me in the ER either! And the signature at the bottom was not the head of the department,it was the NP the treated me through the interferon treatments!So a few months ago when I went to the ER for vomiting blood,thats probably why they just sent me home without examining me.They still won't tell me why they won't treat me,but they told my doctor that it was because I threatened to sue them.I didn't say anything to them about sueing,I didn't even mention a laywer,I just asked for my records ,that's all!They're hiding something,or afraid that if I did sue,I'd win.

Oh my, are you serious that they did not even touch you at the ER? If that is so, you need to write a letter to the head of the ER, EMAIL IT or send it CERTIFIED. letting them know what happened, in detail, and how very unhappy and flabbergasted you are at the treatment you received (or didn't receive!). I would most certainly let them know that you have already spoken to a lawyer, and you will move forward if there is no good reason they can give you for what happened, AND assure you in writing that you will never go untreated again if you are ever in the ER!

As for the Doctor, well, I would certainly not let that go either. I would either get a lawyer and see what they say, or keep calling their office until you get answers! Letting them know that you ARE considering a lawsuit if you don't get answers!

Of course, if anyone has a better idea, please jump in!

The treating physician at the ER,only had me pee in a cup,and they drew blood,then I fell asleep.But I had a friend in the room with me as a witness that I was not examined at all.Then they woke me up and said I could go! Well the ER Doctor sent an ER report to my PCP that there was an examination done,and everything was normal! Plus he listed my best friend(which happens to be a doctor)as the consulting physician! I asked her about it,and she said she never even spoke with the ER doctor.but called the nurse as a concerned friend to see how I was doing! CRAZY HUH!