Saturday I started back on Copaxone. I am still not sure how I feel about it yet. I am glad to have something to take that will hopefully work for me. The thing is, I don't remember it being so painful. I was on Copaxone when I first was diagnosed and really my only complaint at the time was that I had to do an injection every day. Now that is not a big deal. At least this one is not supposed to have some of the side effects...make me sick, like the others can.
So, Saturday a nurse came and did the training to make sure I remembered how to do everything. I had my first injection which was not too bad. It hurt, stung, and itched but that only lasted a little while. The first one was in my abdomen, and maybe that made a difference...I'm just not sure. As recommended by Shared Solutions, I am following their suggestions as to where to do the shot each day (in other words switching injection locations). Sunday I did the injection in my right thigh. I did the heat for about 5-10 minutes then the injection then pressure and ice. It was very painful, stung, and I got this huge lump that lasted until yesterday afternoon. Is that normal??? Although the initial pain went away after about an hour, the area is still tender.
I called and spoke to a nurse at Shared Solutions because I was just not sure. I don't remember this much pain with the injections and I don't remember being SO fatigued and weak with it. She said the Copaxone side effects are usually the site reactions (like the pain, lumps, bruising) but that the severe fatigue and weakness is probably just a coincidence. I'm not sure. Sure, I always have some level of fatigue, but it has increased over the last couple of days. Plus, each morning I have gotten a headache. I also have noticed that I am quite irritable....what is that about? The only thing I can think of is that if it's not because of the Copaxone it must be because of all the traveling I have been doing, between the holidays and all my appointments. I guess only time will tell.
Anyway, last night I had my third injection in my left thigh and it was so painful that it brought me to tears. So I am really starting to wonder. I mean, the pain lasted for several hours, I am still sore today, have a headache again, and have no energy. I have so much that I need to get done and just no energy to do it. Frustrating. I know I am doing things right because I am using the autoinjector so how hard could it be? I sure hope it gets better. Have any of you had that type of reaction with Copaxone? Just curious. Hopefully it will get better.
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12 comments:
Hey Jaime,
When I first started Copaxone, I noticed that I got more irritable and actually experienced PMS for the first time ever. It was very disturbing at the time, but has since lessened greatly.
About the pain and using the autoject, have you tried adjusting the needle depth or tried injecting without the autoject? It's possible that you're injections are too shallow. You'll want to get the medicine well under the skin, into the fatty layer, but not so deep as to accidentally hit a muscle.
I like injecting after my morning shower when the skin is warm and soft. It makes the whole process easier. Also, try NOT using ice afterward, nor pressure. Use your cotton ball to keep any medicine from leaking back out (will burn) and to help seal the 'wound.' Then no additional pressure for at least a day.
Hope that helps even a little bit.
Jaime, I've been on copaxone for a little over a year, so I am no expert by any means. I, too, follow the recommended rotation sites for the shots, plus one addition - my "muffin top", or upper abdomen.
It has been my experience that the most painful sites are my thighs - especially lower, for no apparent reason. Also, the reactions vary, so I never know when I am going to have a painful shot, or a lump, or a red blotch, or tenderness that lasts longer than about 20 minutes.
I don't do the warming or the ice. I just think it makes an onerous task take that much more time and probably isn't that much more beneficial since it is a fairly recent recommendation by Shared Solutions.
Good Luck, and I hope it works for you. I have had just one relapse in the last year and a half. But I may be changing from RRMS to SPMS (or as my neuro puts it "worsening" RRMS!)
Lisa,
I am glad to hear the irritability gets better over time. I'm guessing this must just be one of those things that gets better as our bodies get used to the medication.
I have not adjusted the needle depth...that is new since I was on it. The nurse told me to start at 8 and when calling Shared Solutions they told me that would be the best place to be. I suppose this will just be a trial and error thing. I can't imagine going any deeper and would expect that at 8 it should be well into the fatty area.
Doing the injections after my shower does sound like it would be a good idea, my problem is that I was told by the nurse to do the injection at the same time everyday. She said that was very important. Mornings are the hardest part of the day for me and so I don't always function as well in the morning and I don't always get up and take my shower at the same time. For that reason I have been doing them when I get ready for bed around 9pm.
I find it interesting just how much time and work goes into something that should be quick and easy... Oh well, I am sure I will get the hang of it.
Thanks for your suggestions. I will try going without the pressure and ice (these were the recommendations of the nurse that came out).
Take care,
Jaime
Webster,
I am right there with you. My doc calls my MS "worsening MS" and although in my records she has mentioned SPMS I don't think she really wants to call it that yet. I did the Novantrone for two years and it really helped. Studies have shown some success after the Novantrone with the Copaxone so I am remaining hopeful.
I think I will stick with the heat because it just feels good. I'm not so sure about the ice though and think I will go without that to see what happens.
Although I don't wish pain on anyone, I am glad to hear I am not the only one who is experiencing that type of pain and you know, these two injections were on my lower thighs so maybe it will be better next week up a little higher.
I hope you are well. Take care.
Jaime
I've been on Copaxone for nearly 2½ years. Early on, I had a lot more site reactions than I do now, but never fatigue associated with the injections (just "regular" MS fatigue). I used to do the heat before and cold after, but found that it didn't really make a difference. In time, I think I just got better at them, or my body got used to them.
I assume you're using the auto-inject?
I've had weird reactions, including the 10% heart attack special; taken it since 1997---indents remain, and you DON'T have to put the needle in so deep it hurts. I would barely put the tip in, sometimes the skin rises, but the med settles in. I cold pack it b4 and after, Shared Solutons even sent me a free litle one. Good luck.
I've been on Copaxone for about a year. The first few months were no fun, luckily I was too sick at that time to care. After about 4 months, the feeling that makes you hit the ceiling (lol) suddenly went away...so hang in there!
The itchy lumps however, still remain. Sometimes two days, sometimes five.
I gave up shooting my legs, there are blue bruises that remain there, even though I haven't touched them for months.
As far as the reluctance of shooting after a shower because you don't shower at the same time every day goes....the timing doesn't matter!
Your copaxone nurse only wants to make sure you use the same time every day, so you don't forget (as hard it is to imagine right now, while the shots are troubling you, that won't last).
BUT...if you make a habit out of taking your shot after your shower, that's good enough, even if the time you take a shower differs a lot every day (1 hour, or 5 hours later, it really doesn't matter)
Hope the shots get easier on you soon.
hi -- I've been on Copaxone for over six years. Hang in there, it really does get better!
At first I had really bad injection site reactions. I used hydrocortisone and that seemed to help with the itching and redness. Also, adjusting the needle (not so deep) and icing after the shot helps. But yeah, it still hurts.
Bottom line, it sucks to do an injection every day. I just remind myself that it's better than the (potential) alternatives.
I also notice that my reactions are less/better when I'm being diligent about working out and eating as "cleanly" as possible -- just say no to Diet Coke and Ruffles!
Best wishes and luck to you!
I ve been taking copaxone for 4 years now. i don shoot up in my thighs any more. the muscles are to tight and close to the surface there. you cant help but give youself and intermuscular shot if you do it there. i never used the auto injector. i like knowing how fast and how deep the meds are going in. I havent experienced the fatigue or any worsening symptoms with the injections. i have moved to injecting in my left and right butt in stead of the thigh more fatty area there and less nerves it really doesnt hurt much in that area.
Jamie i dont know you and you dont know me so please take this as an anonymous encouragement. eat right. stay away from wheat, hydrogenated oils, refined sugars, and corn syrup. keep your diet clean. get in shape. walk, jog, ride a stationary bike, yoga anything to get yourself healthy. You stand such a better chance in fighting this bastard if the rest of you body is working the best it can. I was diagnosed 6 years ago. was bed ridden for 3 months. I know that the disease hits us all differently. I have a very heavy plaque load. a legion in my cervical spine. nearly blocking the whole chord. this thing is coming for you trying to claim your calling. this disease is trying to steal our life from us. dont make friends with it. dont associate who you are with this disease. You are entirely seperate from this disease. do not claim it. it will jack with your Psyche. naming your blog My MS Blog is defeatest because you are giving the disease a place in your identity. Fight this thing. We all have to fight this thing. its hard but we have to fight it. we cant give into it. we cant.
Thanks for all of the advice guys! I am still struggling with the whole Copaxone thing and now with this current relapse...well I am just not so sure. I have an appointment with my Neuro on the 18th, so I will just have to see what she thinks.
Fortunately we do all react different and so I am glad you have all found a way to manage. I am right there with the last comment about the need to exercise and eat as "cleanly" as possible. There are always those days where you just gotta give in, but for the most part I do well. No Diet anything for me....if I go for a soda it is better to go with Splenda and when that is not available than the real thing. Aspertame is quite neurotoxic and NOT our friend. Fortunately I do alright in that area (unless I am traveling...haven't quite mastered how to eat out super healthy and inexpensive...I usually either just give in or spend way too much trying to be healthy...one of these days I hope to master that). My BIG downfall is the exercise...when you only have 36% function of your lungs it makes it quite difficult to do much of anything without having major lung issues.
Thankgs again for all of your comments. I so appreciate it and hope this finds all of you doing well!
Take care,
Jaime
Hi Jaime,
I have been on copaxone for 1 week now and i am just so grateful for every blog you have posted here, because I am in the exact same position as you. Its certainly given me more hope reading the helpful comments from all the others. All the side effects you are experiencing are exactly as what I am. I have just done my arms and got a severe site reaction so going to stick with the muffin top and thighs. I have read so much about reactions in last few days and I wonder whether it would be worth trying without autoinjector. I going to give auto another few days and if no better flag it for awhile to see if it make a difference.
Have been on beta and avonex as well and boy those injections certainly were not as painful.
Guess we just have to suck it up for a while longer and believe it is going to get better for us!
Anyhow take care, you are not on your own. All the best. Tania from New Zealand
I have been on Copoxone for 3 years. Recently I have been experiencing tighting of the chest, breathing problems.This lasts for a while then I start shivering like crazy. The first time I couldn't breathe I wound up in the emergency room. My Dr cut me back to 3 injections per week and I am still having these issues. I take 2 benedryl on the onset and it seems to lessen the attack. I am now having these attacks about twice a month. We are discussing changeing my meds but, I couldn't tolerate the Rebif either. Is anyone else having these issues?
Tina
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