Intense pain with copaxone

[teresakane]

I started my injections 2 weeks ago now, and i dread them each day.

I am a larger lady, so i have plenty of skin to hold before injecting, i inject straight in as i was taught, but i have pain.

My abdomen isnt too bad, slight stinging after i have injected the full syringe that lasts 5 mins and a red mark.
My thigh is a totally different story, stinging as i insert the needle, which progresses to a fire like burning and stinging for approx 30 mins. The lump that appears looks like the fluid i have injected is just gathering in an oval shape under the skin. Cold compresses dont help at all, and i have to just sit and breathe over and over talking to myself to keep from screaming. My kids cant come near me, and i cant knock the thigh for the rest of the day.
This cant be normal surely???
The only thing i can think of different between abdo and thigh is i can grab alot more loose flesh on my tummy.

I have talked to my nurse and she is doing a home visit next week, but i wondered if anyone else has had this??

[Redwings]

Hi teresakane:
You're not alone. There have been many posts here about how painful injections of Copaxone (and Rebif) into the thighs can be. I started on Avonex and had absolutely no trouble with the deep muscle injections into my thighs. But when I switched to Copaxone and later to Rebif, the thigh injections were SO painful that I gave them up right away. The only places I could inject were the abdomen, hips and bum (that's buttocks here in the US ). I hope your nurse is able to come up with some less painful solutions for you.

[twisterred]

Hi teresakane,

Glad you are asking questions.

Do you inject with an autoject or manually? Surprisingly, injecting manually into an area with lots of muscle is less painful from what I hear. I've been injecting manually since autojects were not around when i started.

It really can be painful to inject, especially in the beginning. Consider getting some Benadryl anti itch gel lotion to apply to the injection area. It's cooling and helps a little.

In the beginning when my body was getting accustomed to the Copaxone, I sometimes would rub more anti itch gel on the injection site a day or two later, too.

Some have been told to take an OTC Benadryl to help with the reactions. Please check with your DR before doing that.
(I've been doing this over 10 years, but it does get better over time, I promise!!)

From the swelling an all that you are describing, it sounds normal to me, except for the pain.

Take a pain reliever before the injection.
Cold compresses only helped me for a few minutes in the beginning, so I started skipping that all together. In fact, a warm washcloth helped me more, so I did that until my body got more used to the medication.

I'm sorry that your children can't touch you like they had before. My hubby seems to magically touch my freshest shot areas, so I understand how that it ... Maybe make a game of it and tell them what areas are safe. It made me less stressed to tell my hubby.
What I do is show him or tell him my recent injection areas. Then he know where he can touch me instead of just hoping he doesn't hurt me.

Really, it does take a long, long (3 months or more) for the reactions to get better. When i started, I was skeptical of Copaxone, but it was my only option, so I continued.

I had two flares within 6 months of taking the med. So, I had to have 3 days of IVs and inject myself. That was a bummer, but things got better and now I've gone over 5 years without a flare.

A fellow MS friend of mine uses the auto inject only for backside areas she can't manually inject into.

When I inject manually, I can inject more slowly (or quickly) and not as deeply, which gives me control to adjust for what hurts. I've read about many who have dreaded the pain, so I understand.

Many people (me included) rarely inject in the arms because because there isn't as much fat to inject into. My friend skips the legs because that is where she has less cushion.

Shared Solutions didn't give us many approved sites to inject, but going off the chart and finding areas that don't hurt as much is OK.

Hope that gives you a little good news.

[justacowgirl]

From reading posts for the last year I think that everyone's pain tolerance and pain level with the DMD's is different.

I am sorry it is so hard for you.

Everyone tries different methods.

I quit using the autoject and inject manually. It is SO much easier. You can control the speed and depth of the shot. Makes a huge difference.

I also take a hot bath just prior to injecting and at night. Then I inject and just go to sleep.

Good luck. Don't forget why you are doing this.

[Kimba22]

I had the same issues on Copaxone. I finally skipped my stomach, because that is my most sensitive area. The actual injection didn't hurt much (using autoinjector), but I had the pain your are describing after the medicine was injected. I also saw the area under my skin swell up quickly once the medication was injected. The following day, the site swelled up like a humungous mosqitoe bite and itched for a few days.

Shared solutions will send you two hot/ cold packs ... call them and talk to a nurse. Hot before and cold after the injection helps some people. This reaction should subside by six months (I know what you are thinking - what, SIX months??? That was mine after I told my MS Specialist! ). I was also told the reaction was most likely from the mannitol that is in the medication.

It began subsiding for me around 4 months. By 8 months, a sporadic injection could cause those intial problems, but it became much less frequent. I just reminded myself each time, minutes of discomfort was worth slowing down my disease and a future confined to a wheelchair &/ or my bed.

I also did my injection before bedtime, so I could lay down after my injection and keep still until the pain eventually subsided (up to 2 hours initially). It was also easier to endure than the high fevers I got that lasted 24 hours after my Rebif injection.

Best wishes to you and hope you will continue to "stick" it out, knowing it should get better.

[HereIam]

Sorry to hear that your injections are causing so much pain. I was on Copaxone for a long time, and I know some of the injections hurt like mad.

When you grab the area to be injected, then put in the needle, you are remembering to let go of the pinched skin, right? Stupid question, but thought I'd throw it out there.

I stopped injecting into the areas on my thighs recommended by Shared Solutions. Instead I made good use of my saddlebags, although it's not a recommended area, my neuro suggested using that area instead of the front of my thighs. Huge difference.

[Sir-Voor]

You don’t have to use every recommended sight; in fact I no longer use my arms of thighs.

Shared Solutions told me to check with my doctor to find other injection sights for me to use.

So I did ask and basically I was told any fatty area on my body, but check with your doctor.
Even though everyone’s build in different, and I’m sure alternate injection sights will be recommended.

I was sometimes injecting into my thigh muscle, because of little fat there.
But luckily I have more then enough fat in other places.

[inmoni5]

Thighs are horrible for me too

I use Copaxone and I do not inject my thighs!! I did one when I first started and I said never again. Then the Shared Solutions nurse told me to set the autoinjector to less depth so I went from a 7 to a 5 and it was even worse!! Then I was told from one of the nurses that use the Copaxone herself for many years that sometimes the less depth you use hurts much worse then setting it a little bit deeper.

I too have enough fat to pass around. I have noticed on my thighs that my skin is tighter I can still pinch the amount needed to but I really have to pinch it kinda hard. I just think maybe there is not enough fat tissue on my thighs to inject there so I don't.

I have noticed in other areas though that when my brain tells me to lighten up on the depth that it actually does hurt worse. So I keep it the depth the nurse told me too if not a tad bit deeper and they don't hurt near as bad.

In my arms I use a 7, my tummy and hips I use an 8. Also when I inject my tummy I always make sure that I am seated...there is more cushion that way I hope this helps.

[Alicious]

That is the exact problem I have on my abdomen (and there is plenty of flesh to grab; I'm not hitting muscle). some days it made me cry. It is much better as the weeks go on, however.

If you are seeing an oval from the actual liquid beneath your skin, you may bot be injecting at the right angle. I was pushing the needle all the way in on my thighs, but the angle was so shallow that the meds were right under the surface of my skin, and OW!

I was going to recommend the nurse coming back out, but you're already on it--that was how I figured out my thigh issue. Things still aren't fun, but they are WAY better now that I have the right angle.

[agate]

Hi teresakane,

I was on Copaxone for nearly 3 years and never missed a shot. Time will be in your favor, I'm almost sure. If you can just hang in there for a while, after 3 or 4 months you'll find the shots much easier to take.

You're right--the shots that go into the fattier areas hurt less. A lot of people can't do the shots in their arms because those are too painful, and I've heard of quite a few people having problems with the thighs as well.

Putting a heated gelpack over the injection area for about 5 minutes before you do the shot might help. After the shot I put Benadryl Extra Strength over the area too.

Switching to manual injections also helped me to cut down on the pain.

[teresakane]

Thankyou to everyone who replied

[Alicious]

Any new ideas come from your nurse visit?