any good interferon experiences

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Zoe Butterfly
Regular Member


Date Joined Jun 2007
Total Posts : 134
   Posted 8/1/2007 8:24 AM (GMT -6)   
in case i have to try interferons since i reacted badly to copaxone and don't know if i can find someone to prescribe the alternatives-- has anyone tried the interferons -- which was easiest-- depression or suicidal thoughts as side effect or the flu-- i need help
Zoe Butterfly3
MS-- Diagnosed August 2006
 
 


uppitycats
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Date Joined Jun 2005
Total Posts : 2135
   Posted 8/1/2007 9:11 AM (GMT -6)   

I have been on Betaseron -- an interferon, for probably 14 years now (I don't remember exactly when I started it..but at least that long ago..)

I never had any problems with depression or suicidal thoughts.

The "flu like symptoms" are typical for any of the interferons.  Everyone is a bit different, but here is my experience:

When I started on the B, I started "full strength".  These days some doctors start people on 1/4 doses, or 1/2 doses, and then build up to full strength.

I took two ibuprofen at the time of injection, and injected right before I went to bed.  For the first 2-3 months, I would wake up about 4 hours later with a fever, chills, body aches. I'd take two more ibuprofen, and after they "kicked in" (about 20 minutes later), I'd fall back to sleep.  I'd wake in the morning with a headache.  Another ibuprofen, that would be gone, and I'd be about my day.

At the time I started, I was working full time.  I never missed any work because of problems with side effects, although there were a few days when I felt a bit "hung over". Usually another ibu, or a second cup of coffee would take care of it.

After the 2-3 months, I found that if I remembered to take the 2 ibu's at bedtime (along with the shot), I slept through the night.  Sometimes I'd wake in the morning with a headache, sometimes not.  Another ibu and I'd be fine.

Now, 14 or so years later, I take one ibu at the time of injection, and nothing more.  If I forget to take the ibu, I'll sometimes -- not always -- wake in the middle of the night feeling poorly. An ibu at that time, and that is resolved.

What has all this DONE for me?  I am absolutely convinced that, had I not gotten on the Betaseron when I did, I'd be MUCH more severely impaired than I am, now.

Prior to starting the B, I was experiencing 2-3 exacerbations a year, major flares, leaving me more and more disabled.  After starting the B, I had just one major exacerbation, about 2 years into it...and then none.  Note that I haven't experienced any significant improvement: I still have all the symptoms I had prior to starting B (use a wheelchair full time, bladder problems, weakness, fatigue, etc., etc....)  but none of them have worsened, many of them have diminished in intensity, and I'm still rocking along, 14 years later. (I've had MS for 24 years..at least, it was diagnosed 24 years ago. Probably had it long before that.)

 


...I am not a doctor, nor health professional, and don't pretend to be one, here.....


Zoe Butterfly
Regular Member


Date Joined Jun 2007
Total Posts : 134
   Posted 8/1/2007 9:46 AM (GMT -6)   
i am glad it did good for you-- how were the shots-- the copaxone shots have given me tissue damage everywhere and were super painful and swollen and stuff-- i am not up for that again either
Zoe Butterfly3
MS-- Diagnosed August 2006
 
 


Tertle
Regular Member


Date Joined Jul 2007
Total Posts : 108
   Posted 8/1/2007 11:00 AM (GMT -6)   
I was dx about 4 months ago, after about a year of the guessing game.  Optic neuritist was my very first symptom, and now I have numbmess and pain in my feet and legs along with pain that jumps all over my body, one day it will be my back and another day it will be my neck. Also severe fatigue at times. I've been on Betaseron for about 2 months now and they did start me off low and increase it over a 2 week period. It seems to be finally starting to work. The very first week I got sick and was throwing up, doc wasn't sure if it was from the meds. Otherwise besides for injection site problems I think its a good medication.

uppitycats
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Date Joined Jun 2005
Total Posts : 2135
   Posted 8/1/2007 11:38 AM (GMT -6)   
Zoe Butterfly said...
i am glad it did good for you-- how were the shots-- the copaxone shots have given me tissue damage everywhere and were super painful and swollen and stuff-- i am not up for that again either

The needle used to inject B is very small, about the size of needle that my friend, who is a diabetic, uses to inject herself with insulin, several times a day.
 
At first, the injection left large red spots, the size of a half-dollar. It was a bright cherry red, and a bit puffy and dry.  They took forever to fade.  I will still get them if I inject in my arms (so I don't), or in the tops of my thighs, but for some reason, NOT in my belly - -where I do most of the injections now.
 
After the first 6 months, that reaction slowed tremendously (at first it was with EVERY shot...) Now it only happens -- as I said above-- in areas where I don't inject regularly,
 
or if I happen to inject in an area where clothing will rub, like along panty lines, or belt line, or something...so I try to avoid doing that.
 
I find that rubbing the area (gently!) with an aloe-based handcream makes the redness appear less, helps the drying.
 
I also stopped using the alcohol wipes, YEARS ago.  They'll tell you to thoroughly clean the area you're going to inject with the alcohol wipe..then inject.  I found the wipes to be very drying, and causing even more skin difficulties.  When I saw that my friend injected her insulin *through her clothing!* at times..and never had any sort of negative reaction (like an infection), I started to ask my doctor about it.
 
At first he "spouted the company line" "ALWAYS clean the area well with alcohol before you inject!!!"  And then he got real. 
 
Bottom line: I thoroughly wash my hands, and the area where I'm going to inject, and make sure it is thoroughly dry (my belly).  Then I prepare the injection on a clean surface, trying hard to keep my inquisitive cats off the counter until I can get done.  Then I inject, and toss everything away.  So far -- at least the last 12 years since I stopped using the alcohol wipes -- I've not had any infection or problem because of this technique.
 
But you neeed to follow YOUR doctors orders...at least until you've talked with him about this.
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


Zoe Butterfly
Regular Member


Date Joined Jun 2007
Total Posts : 134
   Posted 8/1/2007 11:57 AM (GMT -6)   
wow-- you sounded just like the copaxone nurse-- it sounds exactly the same-- auto inject right??  anyway you did help me to realize that i am gonna just say no-- i do not want to go through this again and their is alternatives -- it's been 2 months and my old shot sites are still bruised and sore and stuff
 
Zoe Butterfly3
MS-- Diagnosed August 2006
 
 


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 8/1/2007 12:05 PM (GMT -6)   
Zoe Butterfly said...
wow-- you sounded just like the copaxone nurse-- it sounds exactly the same-- auto inject right??  anyway you did help me to realize that i am gonna just say no-- i do not want to go through this again and their is alternatives -- it's been 2 months and my old shot sites are still bruised and sore and stuff
 

No, I don't do the autoinject. That really DID leave massive bruising, just the first few times I tried it.  I just use the regular needle.
 
The red spots did take forever to fade -- 6 months or so, in the early years of injecting. But now if they occur at all, they're usually gone within a week or 10 days.
 
You say "their is alternatives"...what might those be?  Except for the FDA approved drugs, there is nothing else out there..even the "alternative medicines", or "complementary meds" that offer the promise of slowing the course of the disease, slowing the progression.  Even LDN which may have some possibilities of helping symptoms doesn't hold that promise. And of course LDN isn't FDA approved yet, either...
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


Tertle
Regular Member


Date Joined Jul 2007
Total Posts : 108
   Posted 8/1/2007 12:44 PM (GMT -6)   
Just wonder uppitycats, do you have scar tissue build up from injecting in the same area's. My MS pathways rep told me to always rotate. I hate doing it anywhere else but my stomach.

Zoe Butterfly
Regular Member


Date Joined Jun 2007
Total Posts : 134
   Posted 8/1/2007 12:44 PM (GMT -6)   
sorry to offend-- i  am just frustrated-- yes i consider ldn the best alternative-- it is fda approved just not at that dose or whatever and i may not be allowed to do interferons and the copaxone is a definite no cause of the severe allergy-- and tysabri well i don't know -- the doc is iffy-- i am sorry if i did offend i am just so frustrated right now i am not myself-- i did not mean anything by it-- i think i am jealouse of people who are tolerate of these tough meds-- and a tad bitter since the steroid poisoning and stuff-- i have to keep an open mind because the alternatives may end up being what save me
Zoe Butterfly3
MS-- Diagnosed August 2006
 
 


Tertle
Regular Member


Date Joined Jul 2007
Total Posts : 108
   Posted 8/1/2007 12:45 PM (GMT -6)   
What is LDN?

uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 8/1/2007 1:09 PM (GMT -6)   
Tertle said...
Just wonder uppitycats, do you have scar tissue build up from injecting in the same area's. My MS pathways rep told me to always rotate. I hate doing it anywhere else but my stomach.
Yes, the nurses/doctors will tell you to rotate..  but no, I don't have scar tissue built up. I am very careful to not inject in exactly the same spot, and if there is any sign of skin irritation or dryness I won't inject there, but otherwise haven't had a problem.  I do inject primarily in my stomach, and only occasionally in my upper thighs, and nowhere else.
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 8/1/2007 1:15 PM (GMT -6)   
Zoe Butterfly said...
sorry to offend-- i  am just frustrated-- yes i consider ldn the best alternative-- it is fda approved just not at that dose or whatever and i may not be allowed to do interferons and the copaxone is a definite no cause of the severe allergy-- and tysabri well i don't know -- the doc is iffy-- i am sorry if i did offend i am just so frustrated right now i am not myself-- i did not mean anything by it-- i think i am jealouse of people who are tolerate of these tough meds-- and a tad bitter since the steroid poisoning and stuff-- i have to keep an open mind because the alternatives may end up being what save me

You didn't offend me at all. I just want to be clear: LDN has not been approved by the FDA in the low dose that it is being offered as a treatment for MS.  There are many doctors who will not prescribe it for MS because of that, and you have to go to specific proprietary doctors and pharmacies to get it.  While it is rather inexpensive, insurance companies generally won't pay for it for non-approved uses.  And again, while those who use LDN claim that it has helped with various symptoms, primarily fatigue, and some of the sensory stuff like numbness and tingling, there is no proof (as there is with the CRABS) that it will indeed slow the progression of the disease. That's all.
 
The National MS Society (and many others) is funding research and testing of LDN to see if indeed it does help with MS, but those tests are not yet complete.  Someone asked what LDN is: Low Dose Naltraxone.  Naltraxone is a drug used in much higher doses to treat some forms of cancer, among other things.
...I am not a doctor, nor health professional, and don't pretend to be one, here.....

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