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Posted 4/18/2007 1:46 PM (GMT 0)
Hi all,

I am just finishing my 5th day of IV solu-medrol in an attempt to put the breaks on my first flare since dx.  I have been on copaxone for seven months and was just really surprised that I flared and even more surprised at the severity of the flare.  I found myself so frightened that I couldn't post for a week.  So, here I am.  How many of you did not have success with copaxone?  Is a flare this soon a bad sign or might it just be typical?  The doctor is considering more MRIs and maybe a change to rebif (waaaaaaa love copaxone).  If you take rebif, how are you liking it - hating it?  Thanks for your help. 

Love and prayer,

Thanks in advance,

 

Posted 4/18/2007 4:07 PM (GMT 0)

Gretchen,

 

I am so sorry to hear that you are having such a hard time right now. When we were chatting on Monday I had no idea you were so sick. That’s got to be really rough, and especially while on the Copaxone. How are you doing on the roids?

 

I just wanted to post to wish you well, (I can’t really offer any advice as I’ve only on Copaxone for a little over 4 months, and now of course I’ve discovered that my medical records are so screwy that I don’t even know if I am even officially diagnosed at this point). However, I think I was told that it takes about 6 months for the med to start “working” and it will then only reduce, not eliminate exacerbations….but, I am not certain about this or about the particulars of your situation, so hopefully someone else with more experience with this can confirm or correct.

 

I really hope that you start feeling better soon!

 

Sunny

Posted 4/18/2007 5:26 PM (GMT 0)

I think Sunny is right -- I've heard that Copaxone takes about a year before doctors can begin to decide whether it's "working" or not.

And then there is this: None of the drugs, none of the interferons or Copaxone, has promised to stop ALL exacerbations...only reduce the number and intensity of those that do occur.  This early in your doing the medication, it may just be that you had this flare.  And won't have others. Or that you had ONLY this flare, and might have had more had you not been on the drug.

I was on Betaseron for 2 years before having another flare....but since prior to starting Beta I'd had 2-3 a year, it seemed miraculous to me that I had only that one...and none since, 12 or so years later.

The bad news is that you've had a flare. The good news is that there are meds available now to treat flares, and maybe slow the course of the MS, and indeed if the doctor thinks that Copaxone isn't right for you, there are other possibilities.  I hope you feel better soon!

Posted 4/18/2007 8:40 PM (GMT 0)
Hi Gretchen,

 

    Most doctors like to do a repeat MRI at the one year mark to determine if Copaxone is indeed working.  These meds dont totally elimate flares or progression just slow them down so having one flare since your dx 7 months ago (I hope that right) isn't that bad really in the big picture.  Who knows, you might have had more flares during that timeframe if you hadn't been on anything at all.  The fact that your flare was severe though might play into the decision on whether you might need to switch.  But, the decision to switch meds really comes down to how you are doing with each clinial exam and what the new MRI shows compared to the old one. 

 

    I do hope you feel better and you show some improvement with the steroids.  Maybe some of our Rebif users can help you with the Rebif part of your question.  To my understanding its similar to Betaseron side effect wise.  Best wishes!  Keep us updated on your progress.

 

Kimber

Posted 4/18/2007 10:32 PM (GMT 0)
Hey Gretchen- wanted to ask what kind of MS do you have? Have you ever thought of avonex? That is what I am on and it does have bad side effects but besides now I have had no relapses (or dx relapses) in 2 years. My last MRI showed no new lesions... Well I really hope you get through this soon and start feeling good again!
Posted 4/19/2007 3:22 AM (GMT 0)
Hey everyone,

Thanks for all the support. 

Uppitycats, I wanted you most of all.  Thanks for just the right post.  You gave me the perfect mix of support and info and I am so grateful.  Bless you girl!!!!  You are such a wealth of knowledge for us newbies.  Thank you, thank you, thank you!

Sunny, I was having a tough time on Monday and wanted to keep it light.  Sorry to keep you in the dark on that one.  Thanks for the kind words.  No real relief yet but it seems to have stopped progressing.  I will wait it out with positive thoughts.  Got through the "roids" just fine.  They just didn't seem to do much.  Oh well - back to prayer.

Tkelly, the doctor won't commit yet on my type of MS.  It hit hard and kept hitting for several weeks and lots of symptoms.  Hospitalized twice.  Too soon to say.  Thanks for the kind words.  They were greatly appreciated.

Kimber, what can I say.  You and Rhonda gave me some powerful glue to keep me together.  I am forever grateful to you both.  Love you big.

Fight!!!!!!!

Posted 4/19/2007 2:51 PM (GMT 0)
Hi,  I just wanted to let you know that I'm sorry to hear about your problem. I know you have been very helpful to everyone here including myself, and i always read your posts. I wish i could help but i have only been on Copaxone about two weeks, however i just wanted to let you know I'm thinking about you and wishing you the best.

:-)  

Posted 4/19/2007 4:19 PM (GMT 0)
Hi Gretchen,
So sorry you are feelin down. I hope you are feeling better real soon. I have been on rebif for 5 months now and i feel really good. If you have any ?'s let me know. Its only been a short time for me too, but i will help any way i can.
The side effects were bad at first however now, i take advil before i inject and i really don't have anymore side effects besides the attractive red welts i get at the injection site (they do go away tho). You take care .Feel better!
Thoughts and Prayers for ya!
Lynn
Posted 4/19/2007 6:20 PM (GMT 0)
Gretchen- hospitilized twice! What made them dx you? Did you have an easy time getting dx? Ignore my questions if they are intrusive, I'm always curious about how people figure out what was going on..... I hope you are feeling better....
Posted 4/19/2007 10:08 PM (GMT 0)

hey Tkelly,

Maybe you should e-mail me.  You seem really interested in my case heeheehee.  It reallly isn't that remarkable.  It started with vertigo and balance issues.  I had that foggy head some complain about.  I thought I had a sinus or ear infection.  Went to the doctor and got anitibiotics which of course didn't help.  I thought it was stress related as I am a teacher and it was the end of the year and really busy.  I woke up the last day of school and felt really awful but it was the last day of school and so I went.  I made it about 3 hours and went down hill so fast that I could not walk without a wall to support me.  Went to the hopital and was admitted.  Spent four days there where they told me that I had had stroke.  (guessing from a lesion found on an MRI)  They did lots of stroke and heart type tests and sent me home to learn to walk again. I got a bit better in the next 2 -3 weeks.  Then one morning the whole problem was back again.  Back to the hosp. thinking another stroke or brain hemmorage.  More MRIs and that is when they found the 2nd lesion on my brain which formed during that 3 weeks.  They then knew it was never a stroke and went from there.  This is really much too long.  Sorry everyone, are you all asleep?????  Then it was tests for lyme, brain cancer, MS, aids, meningitis and anything else they could think of.  After more tests they found the spinal lesion and I went to UCLA MS specialists for a second opinion.  MS confirmed there.  So there you are.  Really, if you have more quesitons e-mail me.   I never tire of talking about myself.  hehehehehehe. 

I am feeling a bit better everyone.  Thanks again for all the support.  It has been much appreciated.

love and prayers,


Posted 4/19/2007 10:17 PM (GMT 0)
Yay! Gretchen's feeling a little better, good news! 
Posted 4/20/2007 12:34 AM (GMT 0)
Glad you are feeling better Gretchen. I haven't posted, but I have been thinking about you. Hope everything continues to get better... Only 30 something days till the end of school again, right? ;o) Hang in there!
Posted 4/20/2007 3:22 AM (GMT 0)
Hey Gretchet!

I haven't posted yet because u know we've talked about this elsewhere, but i wanted to let u know i'm here and i support u and am praying u'r going to be better and better each day. U'r quite a strong person and u have already gone the longest mile...now u'r on the downhill. U can do this!!! Hang tough stud!!! ;)) Call on me anytime u want and we'll get u thru this!
Posted 4/20/2007 7:07 AM (GMT 0)
Hey Crochet!

glad to hear you're on the up! Like we've said before you're a hard a@#%se.
Thinking of ya.

KAS
Posted 4/27/2007 12:03 AM (GMT 0)
THis has been a rough week. THen I found this topic. I've only been on Rebif since January. I guess in spite of everything I was expecting a miracle. I think I'm going through my first major flare. What great timing. This is my first anniversary! My feet are burning like crazy. I wake up in the morning feeling as bad as i normally feel at the end of a bad day. Should I call my neurologist? The symptoms aren't new. confused
Posted 4/27/2007 12:06 AM (GMT 0)
Hey Vickie

YES...u should call u'r neuro and at least just let them know it's happening. There may be some meds he'd like u to try to help u get thru this flare. I'm so sorry! I know u'r in a bad place now, but we're all here with u and hoping and praying this goes easily for u. Do call u'r doc and at least let them note this in u'r record. Take good care friend.
Posted 4/27/2007 12:11 AM (GMT 0)
Rhonda,

Thanks. I will call tomorrow. Looking forward to the next chat!

Vickie
Posted 4/27/2007 12:11 AM (GMT 0)

madlou said...
THis has been a rough week. THen I found this topic. I've only been on Rebif since January. I guess in spite of everything I was expecting a miracle. I think I'm going through my first major flare. What great timing. This is my first anniversary! My feet are burning like crazy. I wake up in the morning feeling as bad as i normally feel at the end of a bad day. Should I call my neurologist? The symptoms aren't new. confused

Yes, you should call your neuro. He may not want to see you, but it should be recorded in your file that you're experiencing some new symptoms.

Remember -- "remission" does not mean a COMPLETE absence of symptoms.  You may just be experiencing residual symptoms from damage caused by a previous flare.  I've never been completely free of symptoms, even in the early stages of my diagnosis, and even during the few best years I had. There was always some burning and numbness and tingling in my legs and feet -- a pretty common area to be the primary target of MS related stuff.

Posted 4/27/2007 1:54 PM (GMT 0)
Uppity, you missed your calling. YOu should have been a doctor. Or a counselor. Thanks. I will call this morning.
Posted 4/27/2007 3:28 PM (GMT 0)

madlou said...
Uppity, you missed your calling. YOu should have been a doctor. Or a counselor. Thanks. I will call this morning.

Hahahah...actually, in real life I AM a counselor...but for people with developmental disabilities (mental retardation, cerebral palsy..disabilities that occur before/at birth..)  But thanks. :)
Posted 4/27/2007 8:17 PM (GMT 0)
Howdy folks. Another rough day but making it. I called my neurologist's office. His nurse called back. He's out of town but she will mention me to the doctor covering for him. Nurse Nancy (not kidding!) thought they might want to do a round of solu-medrol. I asked about the oral but "doctor" prefers IV infusion. I'd have to go to the Clinic for three days. If it helps I'm all for it. Thanks for the help. The nurse also said it might make me feel better right away, or take a week.
Posted 4/27/2007 9:10 PM (GMT 0)
Uppity,

I work with the developmentally disabled also. We actually have a lady that lives with us full time and hubby manages 3 homes. I can't imagine what it takes to "break through" to them and get them to open up. I get to be their friend and take care of daily issues, but you get to find out their inner thoughts. How wonderful!!!

KUDOS to you Uppity, I always new you were special!!!!

Lysha
Posted 4/30/2007 2:02 AM (GMT 0)
I am sorry about your flare. I know they can be very frightening you are in my prayers. You asked about Rebif. I was dx (8/06) and started Rebif 9/06. At first I used to have terrible flu like symptoms. They advised me to do my shots at night so I could sleep through the side effects but that didn't work for me, I was up and down all night because I felt like I had the flu and then down the next day from being tired from not getting any sleep!!! To combat that I started pre-medicating 1 hour before each injection. I tried Tylenol and Motrin and Advil - none of which worked so now I take an Aleve and it has been great. I no longer have the flu like symptoms at all. I take it anywhere 30 mins to 1 hr before my shots.

Now the Rebif does seem to induce my MS fatigue.. I tire much quicker on shot days, just feel totally drained. I don't nap during the day which might help with that, just can't sleep if it is not dark outside LOL. I don't have injection site reactions or anything. Small lumps at most when I inject that dissolve quickly. I had a repeat MRI in February and it showed that I had NO NEW LESIONS, a blessing. However I have continued to have back to back flares/exacerbations which has been discouraging, I was told Rebif was the strongest, most aggressive of the drugs and would decrease the length of and time in between my exacerbations but that has not been the case. I am having more complications now than before I started taking Rebif. My neuro says to be patient but if I don't see some improvement by summer, I am going to look into another drug.
But overall Rebif is working, hasn't been too bad.
Posted 5/1/2007 12:43 PM (GMT 0)
My neurologist is still out of town.The nurse said I should go to the emergency room. But my primary's nurse says she doesn't know what they will do for me and "doctor" can't comment because he just helps me manage everything. I don't know what i should do. I think I need a course of steroids and I hate to wait until next week. I'm so darned uncomfortable. There isn't mch of me that isn't feeling a buzz or spasm right now. what advice can anyone give?

Help!
Posted 5/1/2007 1:04 PM (GMT 0)
Madlou -
Can you call your PCP and see if he/she can get you in for steriod therapy? Just let them know the circumstances. That might work.

Hope you find relief soon!
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