Need help managing Rebif side effects...

[jenandherboys]

On March 10th, I had surgery to place a screw in the fractured bone in my foot which hadn't healed after 3 months.  Starting 1 week prior to that, I had to stop taking all anti-inflammatories.  I am still not allowed to take any NSAID's, as the surgeon says they interfere with the process of bone formation.  The biggest problem I am having is a dramatic increase in post-injection body aches following my Rebif dosing.  

Previously, I was taking a prescription anti-inflammatory twice daily, which minimized my post-injection symptoms.  I haven't been allowed to use that, or any other, NSAID for 5 weeks now.  I have found that acetaminophen(Tylenol) is not adequate to manage the intense body aches that linger for 24 hours or more following each injection.  I don't know how long this will continue, so I must find out if there are any other options for managing the debilitating body aches(and accompanying fatigue).

Any suggestions anyone can make would be most appreciated!

Be well!

Jen

[sllowe]

Hi Jen,

What Mike says makes a lot of sense to me. Ask the doc if it's ok that you knock it down to 1/2 or 3/4 of the med (squeeze a bit out and inject as you regularly do) to see if you get any relief in that. If so, once you get through the healing part you can bring it back up and you'll likely not notice it.

Also, I would ask for something from the neuro temporarily. Maybe tylenol w/something else in it would do the trick.

I would be a mess w/out my nsaid for sure.
-Shell

[jenandherboys]

twopack-     Thanks for the details and the support; and, yes, I am hopeful that summer will bring relief from both my foot and my Rebif side effects.  You are correct about the non-weightbearing being an extended period of time-8 weeks, actually, which is 4 more weeks from now.

Mike_Shuswap-     I will keep your suggestion in mind.  I see my surgeon again on the 18th of this month, and will ask him again about the NSAID's and how much longer I must remain off of them.  If he insists on a longer term, then I'll check with my neuro about reducing to the 22mcg dosage until I can resume my diclofenac.

Thanks for your help! Be well.

Jen

[Mike_Shuswap]

Would decreasing to 22mcg be an option? A fellow Rebif user on another MS site who never had any side effects sudenly had terrible reactions post injection. He reported no further side effects after dropping the dose in half.

This is just a temporary solution till he gets in to see his Neuro in a couple of weeks.

I manage my side effects OK with extra strength Tylenol, which you've already stated don't cut it for you.

Good luck to you

Mike

[twopack]

Wow Jen, it sounds like you're between the proverbial rock and hard place.  Since the surgery was done to treat a non-healing fracture I can see why the surgeon doesn't want to take any chances.  Not much sense in making a repair that won't heal either.

NSAIDS are like a mini-steroid.  They can make us feel so much better because they decrease inflammation.  That means the heat produced by dilated blood vessels bringing extra cells to an area decreases.  It also means less swelling from increased fluid and therefore less pain.

The problem is, inflammation is the process the body uses to heal.  It may look very similar to infection (as we see it on the skin) but is actually the body fighting infection.  Inflammation is a general response and will sometimes jump into high gear when risk is minimal or even non-existant.  It is also part of what makes us feel so miserable when autoimmune diseases jumble the work orders calling for an inflammatory response.

The NSAIDS that help when threats to the body aren't real (or particularly dangerous, Will Robinson) can work against us in other situations.  That is why we can feel wonderful while taking steroids and get whammed with an infection 'out of the blue'.  Bugs run rampant when defenses are down.

I'm sure this explanation doesn't help you feel any better physically.  Hopefully, you can see why your surgeon is insisting you not use what could seem to be a minor risk drug.  Perhaps he thinks your body is sensitive to NSAID effects.  Maybe he doesn't think any risk makes for good betting sense right now.

I don't take Rebif but I can hear that you are miserable following injections right now.  I'd ask the surgeon (and your neuro too) if there is anything else you can do to encourage bone growth and healing and/or counteract the Rebif reactions.  How debilitating is this?  Would it be worth interrupting the Rebif therapy while you heal?

I thought I remember you saying this surgery would mean no weight bearing for many weeks.  Have you been able to return to work already?  How possible is it to melt into misery for a time?  I know that sounds harsh, especially from someone who isn't feeling your pain.  My thinking is to keep in mind that the pay-off down the line can be a healed foot and a restored ability to walk without risking an early return of MS symptoms.

Wish I had something better.  I'll keep healing thoughts in mind for you and expect the summer months to offer rewards for all you're enduring now.

Mary

PS - I realized in writing this that a surgeon is the only specialist I know of who isn't an -ologist.  Imagine that!