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Coming off the Solumedrol...how fun

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Posted 1/24/2009 9:36 PM (GMT 0)
I did 3 days over last weekend of Solumedrol and started the prednisone taper on Tuesday.  My doctor had also told me to try Zanaflex instead of Flexeril.  By Thursday night I had reflux so bad I woke up and thought I was having a heart attack.  I had also had muscle spasms in my right calf since Wednesday.  After thinking about it, I realized the reflux was just getting worse.  I hadn't been tolerating the Zanaflex well anyway and I am sure even with taking Pepcid that the steroids were doing a number on my stomach too.  My doctor wanted me to keep trying the zanaflex in hopes it would get better.  I just can't tolerate it. As of yesterday I stopped the Zanaflex and the predisone and actually slept last night and had no chest pain.  I still have some stomach upset but that too seems better.  Today I feel like I have no energy and have some of the MS tingle sensations going on.  I figure this is all part of the lovely withdrawl from the steroids.  At least the chills I had are gone!  I am hoping that I don't just keep feeling worse.  I have been told that the full effect of the solumedrol treatment is after about 7-10 days.  Please let me know what some of you out there experienced.  I am looking for a little bit of sunshine behind all the clouds.  I have quit one of my part time jobs and am now just doing my own practice because I just don't have the strength in my legs anymore to do the other job.  I am hoping it will get better.  Copoxone called yesterday so I should be starting that in the next couple of weeks as well.  Does flexeril work for anyone else?  I seem to tolerate it ok.  Sorry so long winded, just like to hear from others that have already experienced this stuff.  Thanks...

Cindy

Posted 1/24/2009 10:09 PM (GMT 0)

Hey Cindy,

I am so sorry!!  This is rough stuff.  I hated coming down off the solumedrol.  Hang in there, it does get better.  Give it some time. 

The flexeril never worked for me.  I like baclofen when I need it.  If flexeril is working for you, stick with it!!! 

The sunshine will come, just give it some time.  In the mean time, spoil yourself.....you deserve it.  Rest a lot, eat well and healthy.  Try hard to manage your stress.  Do something to make yourself feel better; listen to your favorite music, watch a favorite movie, eat a really good piece of delicious dark chocolate.  You know your body best, take good care of it.

Let us know how you are doing.  I am thinking of you.

Posted 1/24/2009 10:14 PM (GMT 0)

Hi Gretchen,

You always know the right things to say.  Thank you so much. 

I think that Flexeril works in a different way than the Baclofen and Zanaflex.  Both seem to upset my stomach.  The doctor had said Zanaflex is a more effective drug however, it is only effective if I can tolerate it.  When the side effects out weigh the benefit, I cross it off my list.  I will get the right combination. 

I know you said you take Copaxone.  Have you had any other side effects other than the IPIR thing?  I am encouraged that you can just do your shot and continue on with your day.  I spent most of my time trying to get away from the side effects of interferon, so this sounds better.

Thanks again for the support.

Cindy

Posted 1/25/2009 12:28 AM (GMT 0)

Cindy,

Thanks for the kind words.  I am just like everyone out there, trying to find my way with this disease.  I am glad you feel supported here.  I LOVE copaxone.  I know you are worried about the IPIRs.  I keep thinking about that and how you can deal with that.  The only thing I can think of is to (if you can) see a counselor/therapist that is experienced with anxiety disorders.  If you could explain your situation, perhaps this person could give you some really good tools (skill, techniques) for managing the panic that comes with an IPIR if you have one.  While it is a miserable reaction, it really is your perception that you are dying.  I used my lamaz/birthing class training - relaxation breathing (which is cool since I never got to use it during the birth of either son......c-sections lol!) 

My only other side effects are occasional bumps.  I don't use the auto-inject which some say makes the lumpy/bumpy thing worse.  I manually inject and I go very slow. 

With copaxone there are none of those flu side effects.  There is a bit of pain.  That is something you get used to pretty quick.  It is a bit like a bee sting.  Again, the slower I inject the less pain I have. 

I work full time and I didn't want to deal with the interferon side effects so I chose copaxone.......so far so good.

Posted 1/25/2009 1:45 PM (GMT 0)

Gretchen,

I plan to manual inject as well.  The only thing I will have a problem with is under the arm.  I might have to have my husband help me with that. 

Thanks again for all the kind words.  It is hard, as you know, when you are first working through this darned disease.  It is so nice to be able to turn to people who know how you feel.

Have a great Sunday

Cindy

Posted 1/25/2009 5:32 PM (GMT 0)

Cindy,

My husband is not very good about needles.  He is our needle phobe!!!  I just look in the mirror......also they teach this neat technique for your arm; you lay it on a chair back or couch back to sort of get that little fat on the underside to lay out flat then you can inject.  You do learn to become ambidextrous.  I am fine injecting with either hand.  Just know, it will all work out.  It takes about three injections to feel like an expert.  It is really very easy.

I am glad to be of some help and support.  It is exactly how I felt when I found this place.

Posted 1/25/2009 6:22 PM (GMT 0)
Cindy,
Hope you are doing well on Copaxone, that's a treatment that I didn't mind, taking the autoinject, it just didn't do any good for me. Wish you the best on it and I hope it works for you!  :-)
Posted 1/26/2009 12:58 AM (GMT 0)
Hi Cindy,

I'm a newbie, but I wanted to chime in. I hate coming off of steroids, and my husband knows I'm going to be a b*tch when I taper off with Prednisone. Just know that it IS going to get better. And within a week you will feel a lot of relief, and all will seem worth it.

As for Copaxone, I use and am a fan too. The side effects from the other options seemed dreadful. I am not familiar with the term "IPIR" though? It doesn't sound pleasant though -- sorry!! One thing that I think helps me is I ice only "meaty" areas (sorry...sounds gross) like my thighs, bum, or hip before I inject. Also, I warm up the shot in my hand for about 10 minutes and it feels like it goes in nice and smooth. It's not so intrusive. When I get steroids, I also sit on the bag like a hen and warm it up so my veins don't freeze.

Saying a prayer for some relief for you
Posted 1/26/2009 1:01 AM (GMT 0)

Thanks so much for the input.  I am hoping the Copaxone will be no problem.  As for the steroids, I quit taking the prednisone as it was giving me terrible stomach problems and I am already feeling better.

Have a good week,

Cindy

Posted 1/26/2009 2:46 AM (GMT 0)

Oh yeah!  I forgot about warming the shot.  I put it in my arm pit.......sorry sounds gross.  I just put it there, not against the skin, and let it get really warm.  I can go do other junk while it is warming as long as I remember it is there.  It just takes five or ten minutes to warm.  DO NOT inject that stuff cold.......ouch!!!

Thanks for that reminder, Andrea!! :)

Posted 1/27/2009 6:52 PM (GMT 0)
Cindy,
Hope you have a good week also my friend! Love all of the girls here! They are so awesome to fight this battle against MS with me! Thanks my lovely lady friends! You Rock!
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