multiple infections related to Avonex?

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nursekatb
Regular Member


Date Joined Apr 2008
Total Posts : 43
   Posted 6/4/2009 7:57 PM (GMT -6)   
Hey!  Sorry I haven't been on in a long while so I am not sure if there has been a post about this recently.  I apologize ahead of time if someone already asked this question.  I have been having one infection after another it seems since November.  I was dx. and started Avonex last year.  I was wondering if there is a correlation between the Avonex and the increase in infections.  My PCP was concerned that the Avonex was suppressing my immune system too much.  I ended up with acute pharyngitis/strep throat again two weeks ago and ended up in the hospital overnight for steriods and fluids and such.  My doctor had put in a call to the neurologist to ask him about my therapy, but the neurologist said he didn't feel it was related.  Anyone on Avonex or other therapy that has noticed an increase in infections? 
 
Thanks for listening!  Kathy
Diagnosed with MS March 2008
Avonex         


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3539
   Posted 6/4/2009 8:53 PM (GMT -6)   
YES!!!!  Kathy!  I am not impressed with your neuro!!  This is a quote (below in blue) I stole from the MS Society's info. on Avonex.  It seems you need some blood work done!  I am sorry I can't post a link.  The MS Society notoriously has link issues.  I am such a techno-dummy, I don't know a way around it. 
 
Kathy,
You might want to ask the MS Society to give you that info so you can take it to your neuro.  Please look into that blood work!  I am very worried for you.
 
 
Blood problems
Avonex can cause a reduction in levels of infection-fighting blood cells, red blood cells, or cells that help to form blood clots. Severe changes of this kind can lessen a person’s ability to fight infections and cause tiredness. Periodic blood tests can identify changes in levels of these important types of cells.
 
 
Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


nursekatb
Regular Member


Date Joined Apr 2008
Total Posts : 43
   Posted 6/4/2009 9:28 PM (GMT -6)   
Thanks Gretchen! Don't worry about the link...I am a fellow techno-dummy! I just go to my husband when I need any help with the computer...which is often! I know! My PCP doctor obviously wasn't convinced either because he ordered bloodwork when I saw him for the strep throat. Of course since I was sick, my wbc was 25,000 and I haven't heard about anything else. He gave my a Penicillin shot (along with two others...steriod and one for nausea). I haven't had a PCN shot for strep since I was a kid but I didn't care because I don't think I could have swallowed the pills anyways. They repeated some bloodwork while I was in the hospital and the wbc had started to come back down. I am pretty sure that my dr. checked my liver enzymes, but I was in so much discomfort I can't be certain. I am definitely going to have a talk to my neurologist when I see him next week. I actually was supposed to see him today for my one year f/u, but I had to push it back since I was too sick to get my MRI done last week. It seems to me that I have been sick too many times in the last 6 months to not see some correlation. Of course I am not sure where that leaves me. Won't all the drug therapies cause the same immune suppression?

Anyways, thanks for talking with me. I am praying for no more illnesses at least for the next month...my family and I are going on vacation the week of 4th of July and I just want to enjoy it! LOL...okay...guess that was a given...wanting to enjoy my vacation that is.
Kathy
Diagnosed with MS March 2008
Avonex         


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3539
   Posted 6/4/2009 10:02 PM (GMT -6)   
No, this is not a normal reaction.  I think you should ask about copaxone.  Avonex is so old!  My neuro only perscribes it if you have been on it for a long time and don't want to switch. She just does not love it.  Rebif is the same thing as avonex but a higher dose.  So I would not do rebif if I were you as it seems like you would get the same reaction.  It may be that you have a problem with interferons.  That is why you might want to try copaxone.  Don't let your doctor tell you that copaxone is not as effective because it is not an interferon.  Some docs think this.   
 
You are caught in a catch-22.  As a person with MS, you want to avoid all infections as that causes an immune response that can exacerbate MS, but it seems that your treatment is causing those infections.  I DO NOT have frequent infections and I am a teacher!!!  I am exposed constantly!!!!  I am almost never sick.  Your goal is a balanced immune system that does it job!!  You cannot suppress it so much that you are getting sick and then kicking your immune system in gear.  An active immune response system creates T-cells an B-cells running around....you never know when those are going to cross the blood/brain barrier looking for some myelin to munch on.
 
I think if your MRI shows anything other than very very mild/slow progression then consider switching therapies.  If you do switch therapies, you will have to wash out with avonex before you switch.  This does leave you at risk for a flare.  But you deserve to NOT be sick all the time!  You also deserve a neuro that takes your disease seriously.  Are you seeing an MS specialist?  If you are not........find one!!! 
 
Keep me posted kath.  I want to know how you are doing.
Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


nursekatb
Regular Member


Date Joined Apr 2008
Total Posts : 43
   Posted 6/5/2009 9:09 PM (GMT -6)   

Thanks Gretchen!  I will definitely keep you posted.  I go see the neuro next Thursday and will know more then.  I did see a MS specialist over a year ago but he is a couple of hours away.  I am going to ask him about possibly changing drugs.   How long do you have to be off one before starting another?

Maybe a tonsillectomy would do the trick, since my throat seems to account for most of my illnesses?

Kathy


Diagnosed with MS March 2008
Avonex         


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3539
   Posted 6/5/2009 10:30 PM (GMT -6)   
Hey Kathy,
 
I am not sure, I think you have to be off of it for a couple weeks.  I would drive several hours to see the doctor I have now.  We are considering eventually moving out of state.  I have already decided that I am keeping my doctor.  That will mean an 8 hour drive to keep her.  I truly believe that is worth it.  We currently drive about an hour and a half.  My husband always takes me.
 
I would not do a tonsillectomy until you have seriously discussed avonex as the culprit here.  Tonsil are very vulnerable to infection however they are also able to withstand infection.  I have heard that if you are susceptable to infection and you remove the tonsils, sometimes those infections move to a more critical place.  You can develop infections in your heart etc. 
 
 
Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


nursekatb
Regular Member


Date Joined Apr 2008
Total Posts : 43
   Posted 6/6/2009 8:59 PM (GMT -6)   
That's what I am afraid of.  I certainly don't want to have a tonsillectomy if the infections are just going to find a different location.  After I discuss this situation with the nuero, if I don't feel he has adequately listened to my concerns, I might go to my PCP to talk about my options.  Thankfully I trust my PCP implicitely...I feel he truly listens to me and has my best interest at heart.  I really appreciate your concern about this.  I've been concerned too, but being fairly new to this, I was wondering if the infections just came with the territory.  It's good to know that they are not. 
 
Will keep you all informed later this week.
 
Kathy
Diagnosed with MS March 2008
Avonex         


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3539
   Posted 6/7/2009 12:32 PM (GMT -6)   
Hey Kathy,
 
Some people don't see a neuro.  You could just use your PCP for all your care.  The point is to have a good/compassionate/smart doctor.  If you have one of those, then he can manage it all for you.  Some doctors are willing to do a bit of learning and research for their patients.  Keep that as an option.  I know we had a member here a while back that had not been to a neuro in years.  She did it all through a very competent PCP. 
 
I am very blessed to have a wonderful PCP and a neuro.  The two of them e-mail/fax each other their exam notes on my visits.  My PCP is extremely well versed on MS and I use him for all my symptom management drugs.  I see the neuro for the copaxone and progression checks once every six months.  If I flare, I don't see her, I deal with it all via email and by going to the PCP. 
 
I am very concerned for you.  You have to stop getting these infections. 
Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


nursekatb
Regular Member


Date Joined Apr 2008
Total Posts : 43
   Posted 6/8/2009 9:16 PM (GMT -6)   
Gretchen,
 
That's a really good suggestion.  I guess since my dx. is fairly new, I just hadn't considered it as a possibility.  It's definitely something to think about.  My PCP has a doctorate(sp?...just doesn't look right) degree and so I think would be capable of handling it well.  He probably wouldn't have a problem taking on the symptomatic problems like you were saying yours does.  You know, it is really terrible that you can't trust that a dr. that has gone on further in his/her education to become a specialist such as a neurologist is fully competent.  But as everyone surely has experienced at one time or another, no two doctors are equal just like with anything.   I am certainly scared about the effect of the infections, but I have faith that God will protect me if that is His will (not even the sparrow falls down apart from the will of the Father...Matthew 10?)  I just want to make sure I am doing my part to take care of myself...
 
 
Diagnosed with MS March 2008
Avonex         


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3539
   Posted 6/8/2009 10:13 PM (GMT -6)   
Kat,
 
You deserve the best.  Your faith is inspiring.  I am glad you have that.  Just take it one day at a time. 
Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


sonny66
New Member


Date Joined Nov 2012
Total Posts : 10
   Posted 11/15/2012 5:31 PM (GMT -6)   
November 15, 2012
Hi
My name is Don. I have MS. I see that you use or think of using Avonex. I’ve had nothing but problems with it short and long term. I’m gone to starting a class action suit. Would you be interested? Don dsc4441@hotmail.com
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