Itching......the rest of the story!

In the analysis of this blog the number one web search that brings people here aside from being newly diagnosed themselves are keywords labeled Itch and Copaxone (usually linked to each other).

This is no surprise to me because when you have tried everything short of gnawing your (insert whatever body part is itching at the time) off you "Google" right?!  Of course you do! 

If you take Copaxone you are given the long laundry list of side effects that you are given with just about any medication these days.  Yes, I read them.  Yes, they freak me out.  Yes, I still take the medicine.  I realize due to liability reasons the manufacturer has to list every occurrence of everything that may have happened during the drug study whether they can prove that it occurred because of the medicine.  I remember reading these types of drug disclosures before I gave my consent for my first child to have her immunizations.  Don't think that I didn't have second thoughts that day, I did!  But I also know that the benefits outweigh the risks and so yes, she is immunized.  But I digress.

I vaguely remember reading about itching and red lumps as injection site reactions but that seems kind of standard with a shot........right?

I took my Copaxone without a hitch for several months before IT started.  IT came on suddenly and furiously.  It is what I lovingly call the Copaxone Itch!  (When I am not in a loving mood I have another name that rhymes.)  It made me miserable!  I went to bed slathered in Hydrocortisone cream only to awaken in the night with blood under my fingernails from the scratching in my sleep.  I wore long pants in the summer to keep from clawing my legs.  I caught myself rubbing my belly in polite company.   I used hot packs. I used cold packs. I clipped my fingernails.  I took oral antihistamines.  I did everything that was suggested and then some.  And then..........

 

IT STOPPED!  

Yep, pretty much just like that!  

It was just over.  It lasted a few months.  I was not happy during that time.  I finally just told my nearest and dearest what I was going through and scratched.  Those who loved me didn't care anyway and I really was not too worried about the rest, as it turns out!  Occasionally, I will have it happen for a day or so without rhyme or reason but it doesn't stay long.  

So there is hope!  This too shall pass!  In the meantime, try all of the above.  Hopefully something will help you manage until it does stop, but mainly just keep the faith.  It will be over soon and then you can chalk it up to a past experience!

If you have had any luck with getting rid of it more quickly please share because there are many out their looking for answers.

Good luck!

The Copaxone Itch

So I have been on Copaxone for eight weeks tomorrow.  I know because I just checked.  It seems like longer than that.  I have gotten over the fear of needles.  The idea of giving myself a shot every day does not really worry me too much now.  The actual shot is not so bad anyway.   Everyone told me that it would be okay and it really is.   However, the site reactions are about to drive me crazy!  

I did okay the first five weeks I guess.  I had a little swelling and bruising but the swelling went away quickly (usually within an hour) and the bruising was really my fault just learning how to use the little injector thingy.   Now, however I have developed itching at the injection sites and lumps that sometime take weeks to go away.  The itching begins on the second day at each injection site.  When they start to itch they become red and warm.  After about three days they stop itching.  That is great but at any given point I have three that are driving me crazy.  Once the itch subsides a hard knot remains under my skin for sometimes weeks.   

These are all classified as a normal reaction, but that doesn’t make me feel any better when I wake up at night clawing at myself.  I do pretty well at not scratching during the day when I am consciously aware but apparently in my sleep I am not too worried about anything but stopping the itch.  I have scoured the internet and pretty much what I have found is that I will eventually get used to it or it will subside some with time.  Hopefully quickly!  I have tried all the tricks that Shared Solutions suggests to no avail.  I did just read online a few minutes ago about manually taking the cap off the syringe before inserting it into the autoject thingy to prevent any tiny drops from being on the tip of the syringe.  Since the medication is an irritant the theory is that the tiny drop gets on the skin at the time of the injection and causes the itch.  The only part about that that I don’t understand is that the itch usually begins on the second day at each injection site!  I am going to try anyway.  The lumps are not painful, but not very attractive.  

Having said that, I have not missed a dose in all of those eight weeks nor do I intend to miss one!  I am so thankful that there are medications out there that offer a possibility of reducing relapses!  I can deal with the itching and the unsightly lumps if it means that I might not develop any new MS lesions.  I am looking forward to my next MRI to see the results and see how this Copaxone is working for me!  Oh and if you pass me on the street and I’m scratching, well sorry!  Sometimes I just can’t help myself!

UPDATE JULY 4, 2011:  I DO think taking the cap off and making sure there is no medication on the tip of the needle prior to placing it into the Autoject has CUT DOWN on the itching for me. I have also had better luck with the lumps recently by icing them PRIOR TO injection AND THEN AGAIN AFTER. I still have itching but it does not seem to be as extreme as before and the lumps seem to be better (they don't get as big or last as long) with the ice before and after. I was almost to the point of doing manual injections but if this continues to work I think I am not going to go to that just yet.   ****** If this confuses you and you would like to know more please do not hesitate to contact me.  I will find the link to the page that I got the instructions from about taking the cap off of the syringe prior to placing it into the Autoject and put it on here for clarification!******