Am I on the right medication?

[woodstock]

I was dx last year with CIS/RRMS at age 48. My first flair that led to this dx was a bout of mild numbness on one side of my face, hand and leg/foot without loss of strength that totally resolved within 7 days without intervention. The MRI showed 5 brain lesions (2 measurable) and the spinal tap showed less than 5 Ig bands.

The neuro that I saw at the hospital merely gave me a stack of info on each of the MS meds, told me to take them home and read them and come back and he'd tell me what he was going to give me. I never went back. Instead I went to a new neuro at an MS clinic and had a great first appointment.

The second appt in November where we were to discuss choices of medications didn't go so well. I scheduled it 4 months in advance only to get there and be told that they didn't have me scheduled for an appt and the next available appt was for Feb/March. I fell apart right then and there as I had been so stressed just waiting for the appt to find out if there were changes in the second MRI and what the 7 vials of blood tests revealed.

Because I was worked in, the neuro really rushed through the appt. She insisted that she'd already discussed the blood tests with me (she hadn't) and didn't cover much of the MRIs except to note that not much had changed. I basically made the decision to try Copaxone due in part to the fewer side effects so that I could stay working and the potential for depression with the other CRABS. But, there really wasn't any discussion.

Now, I have a follow up MRI and neuro appointment coming in mid-July and after doing more reading, I'm wondering if I wouldn't be better off on something like Avonex because of what it does compared with what Copaxone does.

Has anyone made a change like this and if so, what were the results?

[BigA]

So I had a terrible, quick, worked-in first visit with a neuro where the Dr. Gave me a stack of booklets and notebooks - seriously, my arms were week and they didn't even give me a bag.

My next doc refused to discuss the virtues of the different medecines with me, but saw fit to warn me against looking on the internet.

I eventually chose Avonex but then worried for over a year that I had chosen the wrong one and maybe I should have chosen copaxone, etc.

So you're doing just fine...

As far as the data is concerned, copaxone does slightly better in trials in the reduction of relapses. It's also said to be neuro-protective.

At the end of the day, they really all do end up being very similar in effectiveness. And since you've already started, I would just see what the MRIs and my doctor say before switching.

Here's a positive write-up of Copaxone
http://www.overcomingmultiplescleros...rug-Therapies/

[knuckle]

If you're female, close or near to menopause, I would not take Avonex or any Interferon. In fact, I don't think anyone over the age of 50, male or female, should taken an Interferon because it messes with your immune system and after age 50 your immune system can be in decline.

Your immune system protects you from cancer, and in women, specifically breast cancer. Considering the marginal efficacy of a drug like Avonex, and we have no idea whether it works better in men versus women, I don't think it's worth the risk.

I'd take Copaxone + LDN. The Copaxone decoys rogue T-cells and the LDN boosts endorphins and regulates the immune system. There is quite a lot of evidence that LDN protects you from cancer and it is often prescribed with the supplement Alpha Lipoic Acid for patients with difficult cancers with good results.

[annedocuk]

This is a very scary reply for anyone over 50 taking Avonex ( I just fall into this bracket).
I might stop if this is truly the case.....Do I take my shot on Friday? I have always had my doubts as to whether I was doing the right thing- I might stop until my next appointment with the neurologist. I certainly will do a bit of research.....and panic.

[Nabbosa]

What's your evidence?

All of the current DMDs "mess with" your immune system, because the current thought is that MS is an autoimmune disorder.

In other words, the thought is that an MS immune system is overactive. So the drugs make them less active.

Before you start scaring people off of interferons, please cite your research, or the published articles that back up this information. Such decisions should be made together with one's physician.

[TLC_31]

Are you compliant with the dosing schedule?
Can you handle the side effects (if any)?
Since starting treatment, have you had a relapse?
Since starting treatment, have you had progression documented on an MRI?

If the answers are yes to the first two questions, and no to the second two questions, I think you are definitely on the right treatment.

If your answers are yes to the second two questions, you still may be on the right treatment. Seven months isn’t necessarily long enough for a medication to get a fair chance, and no medication is perfect anyway.

Avonex might work for you, but it’s not likely to work better, at least based on your current apparent success with Copaxone. Stay the course and be confident knowing that many others have used Copaxone safely and successfully for long periods. You can too!

@annedocuk: Take your shot this Friday! The above questions apply to you as well. Don’t let an anonymous alarmist poster on the internet scare you into modifying the treatment you and your doctor(s) have determined is best for you.

[RoyalOne]

This is a very scary reply for anyone over 50 taking Avonex ( I just fall into this bracket).
I might stop if this is truly the case.....Do I take my shot on Friday? I have always had my doubts as to whether I was doing the right thing- I might stop until my next appointment with the neurologist. I certainly will do a bit of research.....and panic.

TLC_31 is right! Ihave been taking Avonex for sixteen years and have no ill effects from the drug. And if I haven't had any by now I doubt I ever will.
So don't stop taking Avonex because of what you heard here and don't panic!

[knuckle]

Nabuossa,

If someone scares easily, maybe they shouldn't be on this Forum. MS is a scarey disease.

It's also a mysterious disease and doctors don't know everything. In fact, they usually receive most of their drug prescribing information from salespeople who make the drugs.

I've had MS now for 25 years, have been on Avonex, Rebif, Copaxone, Novantrone and Tysabri. I've taken steroids, had blood tests, MRIs, heart tests, and four neurologists.

Over the years I've learned a lot of things. One is this disease effects men and women differently and by age. Another is the disease inevitably progresses and sex and age seem to influence the rate in which it does. Women often experience remission when Estrogen levels are high and men, when diagnosed early in adulthood, when Testosterone levels are high, experience rapid deterioration.
By rapid, I mean progression to SPMS within 10-12 years.

The FDA-approved drugs seem to ignore this link to Hormones and the clinical trials do not differentiate efficacy between men and women.

My opinion...is that Interferons are less effective in men when Testosterone levels are high and less effective in women when Estrogen levels are low. Women post-menapause, or diagnosed post-menapause, often experience rapid disease progression.

Estrogen and Testosterone are hormones and hormones serve to make our immune system function correctly - to defend against threats, like cancer. Endorphins are hormones as well and direct sunshine/vitamin D, exercise, pleasure, spices all produce Endorphins.

Biogen's BG12 drug and LDN both produce Endorphins. The clinical trial efficacy of BG12 appears far superior to Avonex, Rebif, Betaseron as well as Copaxone.

Do interferons raise the risk of breast cancer in post-menapausal women? I suggest you google: breast cancer avonex.

Does exercise, sunshine/vitamin D help lower the risk of breast cancer? Apparently they do. Not coincidentally, women with breast cancer find LDN helps significantly and guess what? BG12 (dimethyl fumarate) in research is being found to help in treating cancer.

So, there's a connection here. Interferons may raise the risk of cancer in women post-menapause and messing with the immune system, versus strengthening it, may have something to do with it.

[annedocuk]

Knuckle,
My comment was to do with the fact that I feel it is a very thoughtless comment to put on a site which, on the whole, is very positive and helpful. Your comment that anyone over the age of 50 should not be on interferons is not helpful to anyone. Each and every person taking an interferon will have given it a lot of thought and discussed it with their neurologist fairly thouroughly. MS IS a scarey disease, and taking an interferon is sometimes our best option to help reduce the relentless destruction caused to ones body by it.
Believe me, I think breast cancer is an even more scarey disease. Alright, it is often curable, but people live with the thought of " have I got a secondary" every time a cough or headache arrives. A close friend of mine in her 40s has just died of it, and her children had to watch her get thinner and iller and in pain for months.
Your posting is NOT helpful- anyone coping with the decisions of what to take, or of giving themselves the weekly shot, may then think -"am I giving myself cancer" rather than the more helpful "this is to give myself the best chance I can".
I have been taking Avonex for over a year now- I still work, and waddle and travel. No matter how sensible I am, your comments will always be in the back of my mind. Not helpful and scaremongering.
Do you consider this site to be only for those who do not want to be worried?
Anne

[knuckle]

If you go to DrugLib.com you will find there are currently 166 cases of breast cancer in females taking Avonex reported - most age 45 and up.

Now what percentage of total females of this age group taking Avonex I don't know. But what about adding-up Avonex, Rebif and Betaseron?

A quick google of "breast cancer rebif" yields similar results.

And these are just reported cases by doctors. Chances are the numbers could be higher for many reasons.

The point is, from my original post, there are alternatives to treating MS for older females that look less risky. Less risky even than Tysabri and Gilenya when you look at the stats and some people are quite "scared" about those drugs.

The "risk" is because Estrogen is in decline.

One of those alternatives (soon) is BG12, another LDN, both which seem to address this hormone connection to MS and it's progression implications to older females in particular. BG12 seems to have higher efficacy than the Interferons which supports female user reports taking LDN for MS.

[S 31]

Adrenaline

Knuckle

I found this article while searching excessive cortisol levels and adrenaline and it's effects on the body. I had a very, very stressful incident with a crazy next door neighbor about 2 weeks prior to my acute onset that completely left me shaking uncontrollably before I had to go to my night job. It's a long article with a lot of info...maybe you can make sense of it.

http://raypeat.com/articles/articles/ms.shtml

S

[knuckle]

annedocuk,

My next door neighbor just died at age 51 of breast cancer so I can appreciate your comments.

If you read Woodstock's original post she is 48 and, apparently, concerned about the quality of information she was getting from her doctors.

It's not scaremongering, just pointing out a risk that she probably should be aware of and probably wasn't.

Maybe she'll comment if my information was helpful or not.

[BigA]

Lots of information here. The important thing is not to make any quick judgements. If you have anxiety, remember that it makes things look more serious than they are.

Keep on your meds until you and your doctor decide together that they are not working, or that the side effects or risks are not worth it.

As for googling avonex + disease - be careful there as well. Doctors publish papers on one patient they suspect have had reactions to certain drugs. You will probably find at least one case where a doctor believes Avonex caused x or y, but that is only one example.

For fun, I googled avonex flatulence. Lots of stuff there. That's about the funniest thing I could think of, but there may be a better one.

While you worry about whether your meds are working. Stay on them and make a careful decision with your doctor.

[AnneLouise]

I do not believe knuckle's reply was "thoughtless" nor was he "scaremongering". I find knuckle's comments informative. Personally, I want to know all I can, whether I like it or not.

My neuro only gave me one choice, avonex. The second opinion neuro said they all work pretty much the same. I really don't know about that, but I went with copaxone ( I think to my neuro's chagrin)basically because I didn't want to potentially damage my liver and didn't want to test it every so often. Now, that was the choice I took.

Recently, I started LDN (with the copaxone) which makes me feel more energetic. I started "walking" more, taking in more sunshine. My symptoms are the same, but I just feel better, inside. My opinion? Hormones and endorphins have something to do with it. When I was a younger woman, I had very few and far between episodes. I had no idea they were neurological.

Nearly two decades passed with NO episodes. At 43, in the midst of peri-menopause, I had an episode that didn't go away, only got worse. Now, 4 years later, I continue to decline, slowly. I take copaxone, ldn, compounded progesterone, supplements galore, eat as well as I can, exercise as I can, everything I can to maintain this "ability" as long as I can.

I didn't change meds. So, really I can't relate. But it is your show. You know what you need to do. Ask away but don't be harsh on anyone, especially one that wants to help.

[BigA]

Interesting point about Breast cancer. However, there is lots of breast cancer.

In any case, if you really want to limit your possibility of other diseases, get on a vegan or vegetarian or pescetarian diet. Many of the "normal" diseases people get around us are non-existant in cultures that eat very little dairy or meat.

Watch "Forks over Knives" on Netflix or renting or online somewhere.