Hi Guys. I need some advice on what to do about what seems to be a post-injection reaction.
I did my Copaxone injection an hour ago in my left buttock. Warm pack, pre-injection, and ice-pack, post-injection. I'm careful not to let the are get too hot or too cold. After my shot, I had the usual immediate burning/stinging, but no big lump or redness like I had with some other sites. I did my right buttock yesterday, same short term reaction, then I felt fine.
But today, after injecting into my left buttock, I very soon afterwards developed a very achy pain starting in my buttock and running down through my whole leg. It aches like when you've been in bed too long with the flu or something. I can walk fine on it but aches more when I do that so I am resting. It's not agony, but it's quite pronounced.
Do you think this is a site reaction? It's not listed in the common ones for Copaxone as far as I can see? Could it be due to the needle itself, ie: could I have hit a nerve?
There's no swelling or discolouration, so I'm not freaking out or anything. Just wondering what might be causing this and at what point I should think about visiting outpatients and get it checked out. I prefer to wait it out, as it's not unbearable and I hate seeing doctors unnecessarily. I can't imagine what they would do for me anyway.
I have never experienced that kind of pain before but I never gave myself a shot in the buttocks either. I always gave myself the shot in the back hip area, right above the buttocks. When you give yourself the shots try pinching about an inch of skin while you give yourself the shot. I found that useful to not hit any muscles. Try just above the butt the next time you have to do that area.
I agree with Deb that if the pain doesn't go away I would give Shared Solutions a call and see if they have any advise.
Thanks you guys for your quick replies. The achiness eventually subsided after an hour or so, maybe a little longer. I have no idea what that was about. I have no reaction at the site of the injection. So weird.
Crisis over but I will call the Shared Solutions nurse tomorrow to let her know about it. Hopefully this was a one time event, whatever it was.
I will try the pinching the skin approach. I haven't done this for a while but will give it a go and see if that helps.
I agree with both Debs. I do NOT inject into my butt area. I only inject just a couple of inches below the waist and make SURE that it is injected in fat. Do you have any fat on your hiney like the rest of us, or are you skinny as a rail? LOL
After 6 months on Copaxone, I find that the sides of my thighs are the most painful and sting the most. I have welts for days. I do not inject the front part of my thighs, since that is where I used Avonex sites for three years. The skin and fat there is filled with scar tissue.
Shared Soutions told me to only use my tummy once a week. Not right side AND left side. I guess it's because I used to be an insulin dependent diabetic and used my tummy all the time for injections.
The itching can sometimes drive you crazy, but it does pass. Hopefully as I get further down the line with the injections, I won't have so many welts and itching. To this day, Shared Solutions cannot tell me the what is in the medication that makes you itch. I don't really think they know.
I also do not find Shared Solutions all that great at answering my questions. They ho-hum around my questions and never really answer them. When I first started Copaxone they were always calling me; now they barely call. You would think since the medication is so extremely expensive, they could afford to contact me a little more to see how I am doing.
I am still excited for the day that we can take a DMD by mouth and not have to inject at all. Hope it doesn't cause stomach upset and other intestinal problems. Don't know if I could deal with that. Still don't know if it will be like an Interferon drug, that has nasty side-effects for me. We'll see what they come up with.
Hang in there. Inject FAT, no muscle...be careful now...
I'll try stay away from the butt from now on and aim higher. And yes, thanks to my good old MS, I had packed on 20 lbs or so since last Sept (OMG!!!!) so have lots of fat areas to choose from for shots. I've lost about half of it so far, but believe me there'll be enough left over even after I get the other 10 lb off.
I still need to check re: doing right and left side abdomen injections with days of each other. I won't do that again if they tell me not to. So far I have had no itching whatsoever, but I guess this may appear later. The warmth pre-injection and cold post-injection seems to be working like a charm for me, no more big lumps like day 2.
I'll now take this on a different tangent, re: what you said about Shared Solutions not answering your questions well. I have found that with them too, as well as with the Rebif nurse, the visiting nurse, and the MS clinic nurse. All seem to dance around the answer, whatever the question, because clearly they do not know the answer. I wish they would just say, I don't know, I'll ask the doctor and get back to you. Instead, you ask a question, and get an answer to a totally different question, like they didn't even hear you.
For example, when the Rebif nurse came to visit, I asked her whether alcohol wipes make injection site reactions worse, because the MS nurse said some people have found this to be the case. She answered "if you don't want to use alcohol wipes, you can just carefully wash the area." To which I said, I'm not saying I don't WANT to use them, I'm asking you if what the MS nurse said is true; will alcohol wipes make the site worse?
Well she danced around it and never did admit she didn't know. And this is just a simple example. I know we all have more complicated questions than this, and it is so obvious when they aren't equipped to deal with them.
I think we become so educated ourselves with our condition that, while not many of us here seem to have any medical training, we do seem to know more than some of these professionals do about certain aspects of what we're dealing with. My MS nurse always seems so surprised when I throw out terms like "medial longitudinal fasciculus." Well, I'm the one with the lesions, so you can be sure I'm going to educate myself. Just because I'm not medically trained doesn't mean I'm a moron incapable of learning about my own body.
Oh, my MS nurse's favourite answer to almost everything is the non-committal "not necessarily." Never Yes or No. Not necessarily. This covers all the bases, I guess.
Wow apparently this has been bugging me for a while. Good to get that off my chest!
I must say my neuro is very good at answering questions and discussing technical details, but most often at my request. He did spend two hours with me at my last visit, most of the time spent talking. I sense that I may be a bit more curious than some of his other patients, but I have a strong need to understand . I seriously have considered auditing a class in neurology just to get a better grip on all of this.
I have lots of comments here. First, do stick to the injection sites recommended by Shared Solutions. One nurse told me their rule of thumb is don't inject anywhere you can't see. And no cheating with a mirror! I really hope you get used to this soon and that the reactions are bearable.
I did find too that Shared Solutions danced around questions. I didn't attribute that so much to their not knowing, but to their not wanting to be held liable for anything they said, so in reality they said very little. It was as if they were always looking for a loophole. Very maddening.
Now I've started dealing with the Avonex people. My meds were delivered and here and I had heard nothing from them, a huge contrast with SS. So I called and they too sputtered and tried to make it seem as if I had failed to do something or other in the process. And once again I got all the dumb questions from them. I guess they have to presume that everyone just fell off the turnip truck, so they say a lot of obvious stuff. I was not feeling well at all when I talked with them, totally exhausted to the point of petulance, and not in the mood to humor them. So I said no, don't send me your kit, don't send me your video, just send me your nurse since I don't know how to do deep injections. You'd think that'd be a pretty simple proposition but not so. Lots more hoops to jump through, papers to sign and so on. The woman clearly didn't like it that I didn't want their stuff and don't want to get email from them.
But you're right, we're the ones with this dumb disease so many MS patients do know a lot about it now, relatively speaking, at least the less technical aspects. Reading up on it gives us at least the illusion of control (hah). I know that you have a lot of books and subscriptions and really get down to the nitty gritty, whereas I content myself with learning from the web, and am way behind you in this regard. Most of what I do know I've learned from Quix, or at least she gave me the ideas to explore further. But still, I'm not at all saying I personally am very knowledgeable, just more knowledgeable than they expect. And that is disconcerting to them. You're lucky that your neuro seems to meet you at your level. I have found that I generally have to tone down what I say and play a bit dumber than I am for fear of giving off the wrong vibrations. Once created, I think, these cannot readily be overcome. That then creates more problems than it solves.
Well, I have to say that this forum is a godsend for discussions like this, not to mention all its other advantages, so I'm really glad I'm here.
I agree, sometimes it does seem more like these medical folks don't directly respond to questions and concerns out of a CYA mentality. I have gotten that sense from some of the ones I've dealt with, esp the drug companies but sometimes the MS clinic nurse too. I have never gotten this from my neurologist, thank goodness. I really am lucky to have such a good relationship with him. I can deal with the lack of helpfulness from the other parties and save my questions for him. It's just difficult as sometimes I just want information promptly, and it's tough when I will only see my neuro a few times a year at the most. I wish he did email like some others do.
I also agree with your comment that some medical professionals are disconcerted when they realize they are dealing with a knowledgable and educated patient. The smoke and mirror tricks don't work so well with us. One does have to walk a fine line, between advocating for oneself, questioning, challengning, etc. AND not going to far as to insult, annoy, anger, etc them. You are right in that it is difficult to resolve a relationship issue with these kind of folks, so it is better not to go there in the first place. Couldn't afgree more.
I too am glad to be able to discuss this stuff here, with people who understand. There's only so much we can go on about it to our spouses and friends, before we risk getting on their nerves. It seems there is always at least one other person here who can relate to whatever the issue is.
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