More DMD questions

[risnerrose]

As I gain info on the DMDs, I have the following questions and/or concerns:

1.  I have been avoiding NSAIDs for a couple of years, due to low GFR and hypertension.  
2.  Why do the warnings mention the thyroid and heart?  (I am hypothyroid, hypertensive, and am having issues with arrythmias.)  Will these cause a problem?
3.  Can you work while taking Betaseron or Rebif? How common are the flu symptoms and how long before most people adjust?

Thanks,

Sherry

[Mand125]

Hi Sherry/

To answer your question I don't have any thyroid issues. I have recently developed high blood pressure which my GP does not think is linked to the Betaseron.

I must say I wish I had been offered this drug a year ago - who knows how much better my MS might be now if that had been the case

Only only you can decide but I say go for it!

Good Luck
Mand

[risnerrose]

This entire process goes against the grain.  At one time, I wouldn't even take aspirin . . . now my counter looks like a drug store - and I'm about to add one more.  I watched Dr. Oz (on Oprah) talk about "blue zones" (areas where people live the longest).  The oldest people take the fewest medications . . . I find this rather discouraging : )

Thanks for the input.  I can read the medical information on the individual meds, but I am truly interested in the thoughts of real people.  This forum feels like I'm sitting down and chatting with friends, and I covet the advice of my friends.

Thanks again,

Sherry

[sllowe]

Hi there,

I take advil or naproxen, but you can take tylenol too. They only suggest pre-medicating due to the side affects, but you don't have to.

They mention the thyroid because the interferons can cause thyroid changes.  They put out the warnings based on what they have found to happen.  I do not know about the heart related issues.  But, I can check on it.  I just got my new precautions from MS lifelines and will look into what it says for you.  There is really no way of knowing in advance if you will have a problem.  But, what they will or should do is run a full battery of labs for you prior to starting.  If not, insist on it.  To include all of your thyroid T3 - T4, and the antibodies.  That way, you have something to monitor.

The only typical test they run (usually) after you start the meds are liver enzymes and CBC, but since you have thyroid this should be included.  

As far as work goes.  I worked.  I did get feverish during the day, but it comes and goes.  Kind of like when you were little and your eyes would get warm, and you'd get sleepy, glazed over and tired and a bit achey, this is what I experienced w/Rebif.

I adjusted after a couple months. But I did have a few other side affects too, but those I'm still not so sure were the meds, could of been the MS - hard knowing.

Hope this helps - I'm sure you are on quite a mission w/this decision - and I didn't think it was an easy one either.  
ttys,
Shell

[risnerrose]

Thanks. . . this just the kind of info I need.  Do you have any thyroid issues, etc?

[Mand125]

HI Sherry
re question 3: I have been taking Betaseron for 3 months now. I haven't missed any work and haven't needed to. Although I wouldn't say I had flu symptoms I did get headaches - which I don't normally suffer from. These headaches weren't bad and were controlled by paracetamol (sorry I don't know what the US equivalent is).
I probably got the headaches for the first 6 - 8 weeks, the day after my shot.
Doing the injections has become routine now.
Mand