Is this all from taking Avonex?

[duh]

I often find myself frustrated with the choice between staying on Avonex and stopping treatment completely. I am looking for advice/opinions on alternatives.

I have been taking Avonex for 3 1/2 years, and have experienced all of the common side effects - flu symptoms, night chills, night sweats, hair thinning, muscle pain .... I have been taking my shot every week since it was prescribed and have only missed 4 shots during that time. I have progressively been developing migraines, eye pain, vision trouble, and what seems to be a slight sense of depression. I am starting to wonder if all of this is due to the Avonex. Of course, my specialist attributes these issues to the MS itself, but I am not convinced.

Most recently, I started to experience blurred/double vision while I exercise and any other time my heart rate goes up. I do not take this issue lightly, and do not feel that the answer, "It's your MS" is good enough. I am currently working with my family doctor to rule out vascular disease. However, all of this has got me really thinking about what is going on with my body and what may be causing this.

I am wondering if anyone out there has had a similiar experience? Has anyone had success with an alternative to Avonex?

[TLC_31]

You have "progressively been developing" several things, and you have new vision problems. Aside from the depression, which is commonly linked to interferons such as Avonex, my non-professional opinion is that it's the MS.

Of course, if it is the MS progressing (perhaps you would get confirmation from an MRI), it could mean the Avonex isn't working. You've given it a fair shake. Copaxone, Gilenya, and Tysabri give you plenty of non-interferon options for your continued treatment. Please continue to attack the disease with one of the many weapons we have available.

[duh]

Thank you for your input TLC. I guess it is difficult for me to accept that it is all due to MS, because each time I have a complaint I get an MRI of the brain and spine, but there has never been a change in the images.

[dpmich]

Not all damage is visible on the MRI's, so you know. My symptoms are progressing and yet no new enhanced lesions. There were new black holes though. So that is probably the reason for the progression. Talk to your Neuro about it. They have thoughts about the dmd's and what/how their patients perform with them.

[Redwings]

I guess it is difficult for me to accept that it is all due to MS, because each time I have a complaint I get an MRI of the brain and spine, but there has never been a change in the images.

Hi duh:
MRI is only one aspect of MS. There often isn't a one-to-one correlation between MRI and disease expression. MRIs are important because they give a "behind the scenes" view of MS activity -- which is especially relevant if the MRI shows more activity than the person's symptoms. But the other reality is that MS is a progressive condition, even when the MRI doesn't indicate that. And in that situation -- when the person is manifesting more problems than the MRI suggests -- there's a saying that applies: the doctor should treat the person, not their MRI.

I'm in agreement with poster TLC here. If you've been "progressively developing" new problems over and above the usual Avonex side effects, it's highly suggestive that what you're experiencing is the progression of MS, even if there's no change on your MRIs.

So it appears as if the issues now are 1) why you and your doctor are relying on MRI evidence only and 2) why your doctor seems to be accepting "it's just the MS" as an excuse to not change to a different treatment approach, as if Avonex is the only option. This isn't 1995 anymore. It isn't even 2005 anymore.

Progressive symptoms on a first-line MS med are an indication that the treatment approach should be changed. It's time to have a serious discussion with your neuro about doing that. If you don't believe that your neuro is capable of addressing your case as your progressing symptoms indicate, you owe it to yourself to find another neuro -- an MS specialist -- who is.

I agree here that what you're experiencing is not "all from taking Avonex" -- as if your increasing symptoms are side effects of Avonex. It looks more like much of what you're experiencing is due to you still taking Avonex when it appears like it's no longer the most appropriate medication for you to be on.