Having a hard time with dmd
 

Ive been on copaxone for 3 months. Im use to the burning and the occassional bruising I get, but I have had a rough 3 months. I have had several IPIR's, but neuro said to keep taking the med, so I have. The one thing I really am having a hard time with is that every time I inject, I get the lump under the skin.

The past 8 shots, all lumps! I have enough MS pain, I dont need any more! Im getting so frustrated with this dmd, Im ready to quit!! I have done everything SS has recommended, heating the area by heating pad or bath or shower, applying pressure to site for a full minute, dont rub the site for a full 24 hours, you can do that after 24 hours. I try to rub the site after 24 hrs but it hurts so bad I can barely touch it. My neuro suggested spraying on lanacaine spray before/after injection, that did nothing! Wits end... I am there :mad:

You've had SEVERAL IPIR's in 3 months?? Holy mackerel, you're tougher than I am!

My first IPIR was me passing out cold on the floor. I woke up to my dh shaking me and trying to pull me to a sitting position saying 'honey honey, you ok??"

Thats about the time I would have said bye bye to Copaxone. I's not that great of a DMD and, obviously, you are allergic to it.

You must be one of your Doc's acceptable risks..:rolleyes: :mad:

To be honest, I really dont want to do ANY dmd's. But, I made a promise to my dh that I would at least try. I wont go near ty or gilenya! Had a reaction to beta so Im pretty limited on the dmd's I can try. Idk...:confused:

I'd have stopped right then. You tried it.....you kept your end of the bargain. I wouldn't let anyone "guilt" me into taking anything that didn't agree with my system or made me sick.

What about a second opinion?

I think it might be a good idea not to let anybody talk you INTO or OUT OF Copaxone. I'll confess that I'm scared to take it and scared NOT to.

You can try injecting deeper. if your auto inflictor is set too shallow it will leave a lump. That angry bees on steroids feeling does get better with some time. It can also take up to one full year for C to start showing that its working. its a long haul med, not a short sprint. it takes commitment to pick that one.

Try ice before. if that doesnt work, try heat. DONT RUB! There are sharp crystals in that drug, and when you rub or press hard, it shatters the crystals and causes those dents.

Pick a time when you know you can sit back, and relax for at least one hour after the shot. its a med worth trying, but if you continue to have IPIRs then it means you are either shooting into a vascular space or its a huge panic attack from the injection itself.

I used the outter edge of my thighs instead of shooting straight on. Each time I poked the top side of my thigh I got huge lumps and ended up with IPIR. I couldnt shoot deeply enough. So, I switch to the side wall which has much more fat to choose. I sometimes would shoot the back wall.

Call the Copaxone folks and ask them for tips, tricks or retraining if you are really committed to doing this. Its a tricky drug and it doesnt take much to throw you into the lumpy/stingy/IPIR/im gonna quit this lane. In the end if you decide you simply cant/wont do this anymore then at least you know you tried hard.

good luck. ((Hugs)) :hug:

Thanx Dejibo. Ive contacted SS more times than I can count, Ive done everything theyve told me to and nothing is working. So, 2 days ago I spoke with SS again, and they said Ive been on it long enough to start experimenting. Go in on an angle, try the autoject (I only do manual), try other areas of my body, etc. My neuro has approved several other areas because I am limited to my left side only for injecting. Im trying. When I really get frustrated I will skip a few doses and get my nerves under control and then start again. Sometimes that small break helps me out, mentally at least. Neuro said it wont me at all to skip like this, so he knows I do this.

I don't know what an IPIR is. Apparently something that causes you to pass out or almost pass out?
It seems you have tried enough, but I'm prejudiced against these drugs. I wish I could take LDN (have you thought of it?) but having Porphyria probably means no go on LDN.
I may give up taking p32 again for my other disease, Polycythemia Vera. It worked beautifully to lower my platelets, but they are now starting to increase, after about two months. That means another shot would be required in four months. It costs me about
$2300 in co-pays, air fair to mayo and motel, and if I do it twice a year it would be around $4600. And it has a small risk of leukemia. The doc at Mayo says that at my age, better to have 3 years of less pain and then die of leukemia than do without p32.
So I too may be giving up all drugs that are DMD, whatever that means. All drugs intended to help a disease process. I will continue with phlebotomies every 6 weeks for the red cells, plus l/4 aspirin a day rubbed into skin in cream.