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8437409 tn?1403680696

New MS patient on Copaxone

So today was my very first injection with the copaxone 20 mg once daily. As per normal reaction it did hurt liek hell. First started like a bad bee sting and continued to get worse and worse. It did eventually go away but arm is still tender 7 hour slater. I have been doing a little reading and seeing how some have chosen to totally disregard the auto-injector and have gone with manually injecting. Can anyone else tell me their experiences and what to do? I will be turning 30 in 5 days on May 7th. Just got diagnosed on March 10th and have had symptoms for 13 years. All the doctors just stopped at the thyroid issues which was fully removed on November 3rd and I just continuously got worse after the removal. I had both hashimotos and Graves at same time, as well as tested positive for both at the same exact time as well. Had headaches for 13 days straight that never went away that brought me into doc, then fast Cat scan, which revealed a centimeter lesion on brain. Then that led to an MRI which showed over 30 lesions on brain. Sure many of you MS patients have had similar stories. Anyway I have a major phobia of needles and cried before I could even inject myself with auto-injector. Can anyone tell me how to correctly pinch your skin to see how deep to set the depth on the auto-injector? Anyone have any helpful hints? On top of all this I was also recently diagnosed with PTSD in April 2015 and have high anxiety and panic attacks as well. Have not had a major panic attack in over 6 months but yea... any advice is greatly appreciated. Also anyone have any advice for the overwhelming fatigue and horrible cognitive thinking and memory crap??
8 Responses
Avatar universal
I can't help you with Copaxone as it's been many years since I did those injections. I do have a couple of comments, though. Has a nurse come to your house to demonstrate and explain? Shared Solutions always used to provide this service, and as far as I know they still do.

Also, I'd thought that most Copaxone users have switched to the 3-times-a-week plan, with stronger dosages. At least that's not every day. And if you don't want to do shots, there are several treatments in pill form on the market.

There are also treatments for fatigue--provigil/nuvigil, amantadine, even adderall. Give you neuro a call and ask. I don't know of any helpful medication for memory. Most people just keep a lot of lists and sticky notes everywhere.

Best of luck to you.

ess
572651 tn?1531002957
I used that autoinjector for the three+ years I was on copaxone - the bee sting feel gets better but the 'ouch' doesn't.  Many people swear by not using the autoinjector and you might give that a try. -Laura
667078 tn?1316004535
To do a manual injection you pinch an inch of skin then put the needle straight in no angles this is important. Likewise take it straight out. My MS nurse not the Shared solutions nurse told me I could skip the alcohol if I did it after a shower. I did mine while watching TV so I had something to pay attention to after the injection. The brain will not zero in on the pain if you are distracted. You can also experiment with heat or cold after. I was scared the first few injections. I got used to it. The other thing about injections is they make the disease real. Some people also take an antihistimine like Zyprexa. Hopefully you will get into a routine.

Alex
8437409 tn?1403680696
Sadly my insurance denied the 3 times a week dose. Had to send in another one and that was sadly for the 20 mg daily. I did not realize that was it till the shared solutions nurse told me. I thought it was still going to be 3 times a day. And I read all over that people say do not use the needle on other areas unless nurse tells ya the depth.... uuum she was gonna leave without showing me. Thank god my mind worked well enough for me to ask her the depth setting. I still dont even know how to pinch my skin correctly to figure out the depth :(
8437409 tn?1403680696
Yes having the nurse here and actually having to do it was also setting in. But of course once she was gone my mind went back into denial. I have yet to accept this disease. I am like on auto pilot for now doing all of this. It just does not seem real top me at all. I have all the stuff here, I filled out the huge magnet thingy, even added my own diagrams on magnet and such. Yet my brain says I dont have it... but the needles and stuff when they arrived was a hard day for me and I cried. Then i went back to denial.... how long will it take before I accept this?
8437409 tn?1403680696
Oh and I forgot to tell ya. There is this line of treatment for me and only one other that works which is a pill form :( I tested positive for the JC virus, and I Have heart issues so basically it was widdled down to copaxone or the pills. The pills I opted out of due to the fact that if I take it the chance of me having another kid go way down. Basically she (my neurologist( told me if I am even having a slightest want to have kids to not take the pill. It takes so so long to get back out of yur system its ridiculous. So sadly if I cant handle this injection then I take the chance of having kids away. I have 2 yeas but I have always wanted my third. Thing is in a few years age gap will be too much as it is already. Youngest is 8. Ugggh. Darn life any way.
382218 tn?1341185087
I had never heard that the MS treatments in pill form affected fertility. If you have a heart condition then yes I can see why Gilenya isn't for you. Not sure about Tecfidera and Aubagio's side effects.

I was on Copaxone for several years until switching to Gilenya last year. Copaxone was tough initially to get used to but in hindsight probably didnt take long to adjust. If anything, that's the upside of doing it daily, it just becomes a normal part of your routine: shower, brush teeth, do shot. I used the auto injector initially but switched to manual merely to drop a step in the routine. I didn't find the auto injector or manual any different in terms of discomfort. That first shot did hurt like hell so I was pleasantly surprised to find that it got less uncomfortable with each passing week. After a while I didn't even feel it neither the needle which is so tiny, or the medication itself. I would still get swollen site reactions from time to time but they didn't hurt. At first it creeped me out doing the shots. Not needle phobia but putting something strange into my body. Best advice is just to grit your teeth, be quick about the process (once you're more used to it) and get on with your day. I switched from doing it at night to the morning because a) I got it over with and didn't have to think about it or worry I'd forget to do it later, and 2) on the off chance I did have a post injection reaction, I could deal with it during daylight rather late at night.

Don't worry about how exactly much to pinch or the perfect depth setting. Just pinch from your cushier areas and try different settings till you find what's most comfortable. You're getting the medication in, regardless.

It IS all very surreal at the start. Everyone comes to terms with it on their own time. There's no right or wrong, but if it is affecting your ability to get through the normal things in the run of a day and you're really struggling with functioning, you might find counselling helpful. But I think for most, it is just time that will make it more real and less scary.

Re: fatigue, talk to your doctor about strategies to manage it. Energy conservation techniques (occupational therapists can be helpful), dietary changes and medication can help. Even exercise, when/if you can manage it, can make a huge difference. I would try other methods before medication, as you may not need it. However, if you need it you need it, and you'll understand that better if you try lifestyle changes first. If they don't help, you should even consider a sleep study to rule out any contributory sleep disorder, as medication may mask an underlying problem. This is especially important due to your cardiac issues, as disorders like sleep apnea can cause cardiac complications.
667078 tn?1316004535
It took me over a year to accept MS. The funny thing is I have had it since I was two. One day I just realized I was not waking up and thinking oh yeah you have MS. It also helped when my husband accepted it. He used to be embarrassed if I told anyone.

Also don't set your autoinject deep and then do your arms if they are thin. I hit the ulnar nerve a couple times because I did not realize how deep I was going.

Alex
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