Gilenya

[opie74]

Wednesday is teh big day.  I went this morning for the liver pannel and the CBC.  I was suposed to get the first dose last Monday, but alas, paperwork!  It took me 10 minutes on the phone with my insurance and the drig company nurse to get things on track.  I don't know why it takes "professionals" so long to get anything done.  

Sorry for the rant.  I will try to keep you all updated as to how things go.  I had the baby on the 17th and began solumedrol on Monday the 20th.  I had 1 gram every other day for three treatments and then 250mg every other day for 3 treatments.  My last dose of solumedrol is Thursday.  I am ready to get that stuff out of my system.  Post0partum hormones and steroids make for an interresting time.  Rich is such a good husband and father. I told him last night that if I can't figure out how to get some sleep, that the migraines would be soon coming.  He took both feedings last night and I got the 5:45 this morning.  

The reson that I am swithching to gilenya:  I was on Betaseron for a year after Dx.  In that year, I had three relapses that required steroid intervention.  My local neuro (an optho-neuro who is my promary treating physician) did not think that this relapse rate was acceptable.  I went to my Ms clinic last December and that dr concurred that the interferrons were not effective enough.  The MS clinic had hoped that onother drug would have been approved by the time that I conceived and delivered, but that did not happen.  So they both think that my MS, though RRMS is porgressing to quickly to wait around to see if I get better resluts from another year of interferon.  My symptoms are not as severe as many of my friends on this sight.  They are annoying and not terribly detremental to my every-day life.  I have a heave leasoion load.  Most (all but one) are in teh deep greay matter.  So, I am not affected in my legs or such.  I have one possible leasion in the neck.  thisgives me some weakness in my right arem from time to time.  Since delivery, I have had more amd nore numbnessin my right forefinger and thumb.  My tri-geminal nerve is sometimes buxxing, sometimes numb,and sometimes painful.  I have some spasisity in my right neck and jaw.  It comes and goes ant no certain interval.

I iwll go for now.  I will answer anything that you might want to knwo reguarding the new treatment and or my symptoms.

Best to you all my frineds, and mreey 3rd day of Christmas.  (yes, the 12 days START, not end, on Christmas
day!)

Ann

[Lulu54]

Hi Ann,
You are smart to realize that this could be a combination of things - MS , new baby, lack of sleep....  yikes! I'm tired just typing those things.

Unfortunately we know that often with MS, post-pregnancy can be a horrific period while the mom's body readjusts.  I hope whatever you are going through doesn't last much longer and you can get back to being over the moon with that sweet baby girl.

hugs, Lu

[Sparkysarah]

I think you are amazing to go through all this in just 3 weeks and you should be immensely proud of all that you have achieved and I am sure that little Vivien is worth all the challenges that you have been through. Rest when you can and hope all goes well and that she is one of those ones that sleeps through the night soon.

Love and hugs

Sarah

[cainer]

AHHHH!!!!  She is a cutie!!   hugs   tick

[opie74]

Well, it has been a week tomorrow!  The first dose of Gilenya went ok.  MY heart rate was sky-high when I arrived (90+).  If fell to 58.  I was told that it was not bad.  It has been staying in the low 60's; which is low for me, but still quite normal.  

I feel like poop!  I jdon't know how much of it is a 17 day old baby, mega doses of solumedrol with prednazone step down, or the Gilenya.  I guess only time will tell.  I got up at 3 to give the baby her bottle, and NEVER went back to sleep last night.  I had to get  in the shower at 6 to make it to the baby's dr.  No napping today, as my in-laws played golf and the 3 children were loud all afternoon.

I have a huge moon face and have gained 4 lbs in the last 3 days.  For some reason, the prednasone is much wose at this than the higher dose solumedrol.  :-(

I will confess, I feel aweful and am getting worse, but the baby is totally worth i!

catch up again when I can.

Happy new year!
Ann

[opie74]

Thanks Lulu!  We are living in a time warp around here.  A good friend of mine came over just now.  She is going to go with me tomorrow so that I won't be alone.  Looks like the bloodwork came in ok today.  

[Lulu54]

Shell - while you were mopping your basement, Opie was birthing vivian.  You can see her picture at

http://www.medhelp.org/posts/Multiple-Sclerosis/Vivian-Pictures/show/1419970?personal_page_id=366027#post_6473343

[sllowe]

Opie!

What did I miss? YOu had the baby? And, already gearing up for Gilenya? Oh my.
Point me to your update if you posted it. If my memory serves me right, you were juuust about fixing to deliver!

(((Hugs)))
shell

[HVAC]

Good luck I hope it helps.

Alex