Copaxone tips from my neuro

[Lulu54]

I saw my MSologist today and as always had a great time discussing various things.  He quizzed me about the copaxone and how it was going and was I having any problems - which I'm fortunately not.

He said he has a growing number of patients who have taken to giving their copaxone injections in the shower.  Yes, you read that right.... in the shower.  He said it I wanted to try it, take my syringe in with me and set it on the ledge or soap dish and let it come to room temp while I shower, then soap the area, rinse and inject.

The secret to this is the skin gets nice and warm and supple in the shower and the injection site reaction is diminshed.  He also said we won't ever hear this from Shared Solutions since it is not an approved protocol.

Also he added that Tucks Medicated Pads make a great post injection aid - the witch hazel works as an astringent on the site and immediately reduces inflammation.  He said those patients inject and immediately put a Tucks pad on the site to stop the reaction.

I've told you this before, but I love this guy and his willingness to think outside the box to make life better for all of us.

best, Lulu

[Lulu54]

Katie,
I was wondering the same thing.  you definitely don't want to immerse the autoinjector in water.....

eliminating the alcohol prep in exchange for old fashioned soap and water might also make a big difference in the stinging.

-L

[katie4242]

Thanks so much for the tips.  I will definitely be trying the witch hazel.  I have had dreams of injecting in the shower, but never knew it was truly possible.  Do you think I could use my auto injector in the shower?  Thanks again!

Katie

[Lulu54]

Thanks for letting me know, Kelly.  I hope it keeps working for you.  I wish I had known this tip when I first started copaxone.

Funny, with all we go through that something like buying Tucks Medicated pads would be embarassing.  I know what you mean though - somethings are just too much like that 20 something male checking out my Poise pads.  Why can't that middle aged woman be working instead?

We'll have to track this tip and see if others have the same luck.

you'rre welcome, Lulu

[anon07072023]

OK, this is my 3rd evening trying the Witch Hazel right after my Copaxone injections. (I couldn't bring myself to buy the Tucks pads - haha - I get embarrassed REALLY easily. So, I bought a bottle of Witch Hazel, instead).

Anyways, enough about me and my rosey cheeks...
I ALWAYS get fairly big welts & stinging after each injections. Since I started using the Witch Hazel, I have noticed a big difference. My welts are definitely a lot smaller. And the whole area just seems less inflamed or something, and there's less stinging.

Thanks for the tip!!!  
Kelly :-)

[Lulu54]

A long time friend (almost 40 years) who is also a cardiac ,was my ride-along companion for this appointment.  She has lots of experience with those doctors at the top of the pecking order, including heart surgeons and neurologists.

She walked away tellng me repeatedly what a great doctor I have.  She told me it again as we got closer to home and she now understands why I drive 90 minutes each way to see him.  

I don't know about the house calls, but I do have his cell phone number and his private email (his blackberry is always on!) and used it when I was hospitalized.  He was answering my questions and giving me lots of gentle reassurance before 7 AM.  


SS can't give these tips because they are not studied through the rigors of scientific proof and are purely anecdotal.  

FWIW - We also reviewed my use of Ampyra and decided to stay on it - I had just finished my 30 day hiatus to see if it made a difference.  I have no seizure risk history and my liver enzymes are good.  He said the evidence is fairly strong that this drug also helps with the problems of heat degrading the signals - I am heat sensitive and decided it was worth trying this off-label use in addition to the walking.

There are lots of reasons why we need a good relationship with our doctors.....  these are just two examples.

L

[twopack]

I love these tips so figured I give them a bump to the top.  

I don't know why SS wouldn't embrace these tips.  If it's good to wash your hands and/or the site before injection then spiffin' up the whole body beforehand seems prepo supremo.

And wow, a doc who discusses injection technique with his patients.  What a novel idea.  Next thing you'll be telling us he makes the occasional house call too Lulu.  What a gem you've got.

Mary

[Lulu54]

I hope everyone who tries these tips will let us know how it works.  Right now my shots are not bothering me at all.  For a while they were back to stinging and small welts.  And then it cleared up - touch wood it stays that way.

[coffeeom]

Thank you...I am going to try the tuck pads...I still get welts..not as bad as when I first started ..they are about half the size and they really itch  bad the next day or two!!!!

[meg321]

Those are great tips, i still have all the same reactions that I have always had.  I will try the shower and the tucks pads.

Also like the MSologist title too...

Thanks Lu..

hugs, meg

[Lulu54]

Kelly, that's exactly right about the witch hazel- and the Tucks pads are presoaked so it is an easier way to apply it.  He said use it immediately after the injection and don't wait for a welt.  It's worth a try if you are having problems.  Yes, they come in strips of 5, and I take mine out of the refrigerator 5 at a time, too.  

DV - as for the lipoatrophy, he said it doesn't seem to matter what you do.  Some of his patients have that problem within a year of starting and others never develop it.  I joked that I have enough body fat I would like some of it sucked off, but he said that body size doesn't seem to matter, either.

[anon07072023]

Hmmm, very interesting. I wonder if the witch hazel would make you not have a welt afterwards. I always take my Copaxone needles out a packet of them at a time - I think that's 5 of them (I'm not at home to look right now). So they're always at room temperature when I need to inject.

[doublevision1]

Thanks for sharing this, Lu.  Did he indicate whether this approach could reduce the risk or severity of longer term damage, ie: lipoatrophy?