anyone improved from taking ABCR's?

[boston/maine]

I am just wondering is there anyone that has improved or stayed the same while using any of the ABCR's drugs? I have tried all of them and found no difference. I know everyone is different and maybe this is a stupid question, if no one reply's then I guess it was.

Have a great day :)

[SRKW]

I really don't think this is a stupid question at all.

I did improve and have been stable on Avonex 14 years. That said, Is it me or the Avonex? I really don't know, but not ready to stop.

I never had a problem with Avonex, my side effects were mild and now don't exist. But how will I ever know if its helping. I don't have have another me in a dual universe who didn't use it. I have no real yardstick to measure the differences. So I will stick with my either my good luck or Avonex. Its all I know.

[stillstANNding]

Jan-

I did not get worse on Avonex. I did get 1 new lesion but only one. I was changed to Rebif then.

I became depressed on Rebif but thought it was lack of energy from MS for a long time. I did not get worse on Rebif. I was switched to half-dose Rebif when I figured out I was depressed. I was still depressed and got a handful of lesions on that and was switched to Copaxone.

On Copaxone, I have had no new lesions. I can walk further and self-start projects and am upbeat. Fatigue is less. I feel better. It may be that I am just "off interferons" rather than "on Copaxone."

For sure, I am a "responder" to these treatments. I haven't needed steroids for the whole time I have been on them- over 15 years probably.

I think bladder and bowel are a bit more difficult- I have a urologist now and catheters to self cath if necessary. It hasn't been but this is worse than before the treatments. And the Trigeminal Neuralgia has been managed better w an add on drug but it hasn't improved any on its own.

Cog Fog, tinnitus, sciatic pain still come and go. Involuntary movements still come and go and are not affected by my injections.

Almost forgot- haven't needed to use scooter for 3 years.

That's what I can think of now, "Off the top of my head". ;)
ANN

[SalpalSally]

To be fair, I wasn't on avonex long enough(7 months) to make a judgement, because of the HORRIBLE side effects, for me. I was on Copaxone for almost a year and stopped because my progression was speeding right along with no help. LDN, for the last 11 years, seems to be keeping my now SPMS pretty stable.

So, my answer to your very good question would be NO!!!

[agate]

SRKW, since this was your first post, WELCOME!

It's wonderful news that you've improved while taking Avonex.

I wish I could say the same but improvement wasn't part of the picture for me. Maybe not surprising since I'd had SPMS for many years when Avonex was prescribed. I kept taking it for 3 years and later took Copaxone for nearly 3 years.

I stopped because of some unwanted side effects and because I don't think enough is known about how these drugs behave in someone my age or in someone with SPMS.

Jan, I can't say that I stayed the same while on the drugs. There has been a very slow worsening. If 100-degree heat wiped me out when I was in my early 40s, nowadays I wilt in 80-degree heat. If I could knit for an hour without stiffening up in my 40s, nowadays I might be able to knit for 20 minutes. It's been like that all along. I can't see that Avonex or Copaxone changed anything so far as the way I felt--except of course for the side effects.

[MS w/MS]

I took Avonex for 7 years, got worse, did Rebif for 3 years, got worse, did Tysabri for 1 year, got worse. Started taking Rituxan in '08. This has been a godsend for me. Since starting it, I have definitely stablized. The only thing I wish I could change would be when I started. I started after I needed a wheelchair to get around. So there are some who drugs have made a difference.

[Gary]

Around here there are no stupid questions.

Welcome SRKW. Please don't be a stranger.


I wonder the same thing I like to think that I would be LOTS worse without the meds. Despite the side effects. At least you feel like you are doing something. During the time I was on the various MS treatments I did get worse. and at one point I had so many new lesions that they could not count them as compared to a previous MRI. Some of the lesions are so big and bright (active) that they show up on a CAT scan causing them to thing stroke, which it isn't.

[boston/maine]

thanks for posts

Thanks everyone for the posts I don't know what I wanted to hear I guess just that I am not the only one they did not help.

[Parsi]

The course of MS is relatively mild overall. The exacerbations are a different story, but fairly fair between (like a year). But since injecting Betaferon, then Avonex, I haven't had another exacerbation.
Slow decline, more after stopping then during.
However, though I was fine between injections (though rough side effects lasting 24 hrs), the longer I injected the more overall feeling of unwellness. Much better since.

[Cherie]

I improved in my first year on Avonex then began to slide again. Switched to Rebif (4.5x the dosage of the same med as Avonex) and began to improve to the point less than a year later where I was walking unassisted (after three years in scooter and 7 years with canes) and no longer needed to cath after 4 years of needing to do so. Vision improved from "legally blind" to able to drive again and pass DMV eye test.

Yes they do help some of us. BUT...I also added a daily exercise program and totally changed the way I ate at about the same time I went on Rebif. So I am sure the whole package helped things to work for me and not just the medication.

[boston/maine]

Cherie, What changes did you make to your diet? If you would please.

[Virginia]

Jan, I feel that I have derived benefit from being on the interferons. I realize I can not know this unless I could somehow know what my condition would be if I had not been on them. I am basing this on the fact that I was progressing very rapidly when I was placed on Avonex in January, 2001. I have been on Rebif for over 11 years now. I went to Rebif because it was stronger. At that time, I did level out some and I stopped having episodes of optic neuritis (which in itself is enough to stay on the drug). However, your vision may not have been effected.

I have progressed in the past year or two, but I am older and have had MS a very long time. We all know that the drugs do not say they will stop the progression, but just slow it down. I feel that for me it has done that.

Also, I started exercising at the same time I first went on drugs. I was doing Yoga on a regular basis. In the past few months my Neuro sent me to a Physical Therapist who has been trained to treat MS patients. I am now doing her exercises. I believe this also is a help.

My concern right now is I might have built up antibodies to the Rebif. Some Doctors think if this happens they are no longer of any benefit and others believe they still help regardless. I have not been tested due to this difference of opinion among Doctors about this.

[agate]

Cherie, What changes did you make to your diet? If you would please.

I'd be interested in knowing about this too.

[Lazarus]

Hi Boston Maine

I am just wondering is there anyone that has improved or stayed the same while using any of the ABCR's drugs? I have tried all of them and found no difference. I know everyone is different and maybe this is a stupid question, if no one reply's then I guess it was.

Have a great day :)

No one really knows if the ABCR drugs slowed things d own or not. But, Novantrone was my favorite chemo and had obvious resultsFor the last 2 years I have been on Rituximab and again the improvement is spectacular. Bothd drugs give concerns and with Novantrone I took all the FDA allows and with Riyuxan I have developed the antibodies to the JC virus that leads to the possibility of PML so I am in trouble deciding what to use. I just did a Rituximab infusion so I have a few months. it could be as many as 8 to 10 months before I revert to my previous situation. I never had any side effects with the chemotherapies that I used and am still farming here in Western Massachusetts. By the way I did all of the ABCR drugs for many, many years and then did IVIG for 7 years.

[jendie]

I'm allergic to A,B,C, and R... Novantrone was a good one for me, but now it has been 7 years since my last infusion.