Ongoing reactions to copaxone

[37kf80]

I posted my reactions to copaxone a few months ago and now that I've been using copaxone my reactions seem to be getting a bit worse. I'm wondering if anyone else is having this issue or has dealt with this type of thing? I cannot see my doctor until January. The shots are becoming very discouraging.

[Juleigh21]

I wish I could send you pics of my reaction that ended Copaxone for me. My doc finally looked at them and immediately stopped the meds, put me on oral steroids, and prescribed an epipen. My questions to you- Does the reaction site get hot, flaming red, and then a few days later hard? Is the shot getting more and more painful to administer? I was running out of locations on my body to put the shot b/c I wasn't healing fast enough. If you think you're developing an allergy please don't wait until January! You could be in serious trouble if you do. Be your own advocate!!! There are at least 12 other meds you can try. GOOD LUCK🍀

[Juleigh21 in reply to Juleigh21]

Shared solutions and/or your speciality pharmacy are also other sources that could help you besides your doc. I wouldn't administer another shot till speaking to someone!

[37kf80 in reply to Juleigh21]

Yes the site gets red and hot and then turns into a hard white bulge and yes it seems like the shots are becoming more painful

[Juleigh21 in reply to 37kf80]

The last shot I gave myself was in my thigh and it was so painful I couldn't keep it in the whole time and some of the serum ended up on the floor. My leg still swelled and got hot. Please consider talking to a professional before giving yourself another shot!

[CalfeeChick CommunityAmbassador]

Wow, just a beginner in all of this, but that definitely looks like an allergic reaction. IF you can't see your regular doc maybe you can see a partner or associate. Sorry to see your discomfort. Feel better soon.

[Royjr]

The majority of the replies here states they have some sort of bad reaction to Copaxone.

[Hidden]

Hello 37kf80, this is MSFighter saying welcome back! I wish having that reaction to your Copaxone injections wasn't the reason that brought you back. We always need another person in our large extended family to add their wisdom to the group as a whole.

Looking at that reaction around your right upper forearm and elbow makes me wonder if your reaction seems to be getting worse with each injection. Typically I believe, but I'm no doctor, that the reactions do gradually get worse. With that thought in mind I would get back into my neurologist as quick as I could to show him or her your reactions to Copaxone and request you be put on a different therapy for your MS. Remember you are in charge of your own health care decisions. Nobody knows what affects your body and works for your body as well as you do. If the neurologist is unwilling to take you off the Copaxone ask him to do so.

Please keep us in the loop and let us know what new therapy your neurologist put you on. Remember together we are stronger!

[AngieRowe]

Looks scary to me! Did you develop this reaction over time? I am on month 3 and I usually have no reaction except stinging and I don't always have that. Sometimes can't even find where I gave it to put on ice pack.

[HostMom-1]

Please call Shared Solutions, 800-887-8100. Ask for an RN to come to your home to evaluate these reactions. They don't want you using it if you're having an allergic reaction.

Two comments, one is perhaps you are actually hitting muscle rather than it being a Sub-Q injection. I also had a similar reaction and found I was going too deep. When you hit muscle, you'll get a raised, red, hot & painful spot that seems to take forever to take forever to go away. Having that nurse come out to do an exam & eval will help a lot.

Second, your doc won't see you? Is there a PA or Clinical Nurse Practioner that can see you ? If not, then think about finding another doc. If you are having a reaction to the med, & your doc can't /won't see you, then it's time to re-eval the doc. That MD behind his name doesn't stand for Me Devine. He should have SOMEONE in his practice that can see you immediately.

Hope you're able to see someone ASAP to get this evaluated. I stopped using the Auto-Ject and did manual injections which solved my problem almost immediately.

Keep us posted & good luck.

[plosed06]

I had reactions also. I had raised red welts that took more than one week to go away. My legs felt weaker after injection. And I felt so cold that I could not stop shivering. Neuro switched me to aubagio.

[Jesmcd2 CommunityAmbassador]

37kf80 l agree with everyone here. No way should you wait to see your neurologist. You need to call them a tell them what is going on, and if they won't see you, go to the ER. Maybe then he will take you seriously, and if you have to do that, go to you PCP and find a new one. My neuro called me at 10 at night once when l had a problem.

They are there to help us not hurt us

Best of luck. Jes

[cassielynn71]

I have/had the same reaction on my arms but that welt on me went from my armpit to my elbow and covered the entire underside of my arm. In the other sites I just got the typical half dollar size hard ball kind of welt w/ redness about the size of my palm and wicked itching for about a week. Then it goes away and leaves a bruise for about 2-3 weeks.This is listed as one of the side effects and Shared Solutions concurred. After showing my Neurologist the pics of my arms she agreed to stop using the arm as an injections site. We discussed switching to the everyday injection, since it is a lower dose, and also taking Zyrtec for a month and trying the arm again. I'm giving it till January to see if the Zyrtec helps w/ the itching, and if not, I'll switch to the daily injections. From everything I've read, Copaxone is the least harmful to your body, ie liver, kidney, cancer, etc..

Best of luck!!!!

[ddeadred]

Have had MS since 1986 which started with Betaseron, the only thing available when first FINALLY diagnosed in late Dec 1993--yeah, a Happy New Year surprise in late December). Betaseron ate the tissue under my skin for over 8 years until it required surgery to clean out the necropic tissue under my right thigh. Tolerated open sores on top of my skin.

So, Copaxone was a walk in the park! That said, I've been on it nearly 8 years now and have not done arm shots in years. I do four spots in rotation: right hip, right thigh, left thigh, then left hip and repeat. I'm on 3 dayz a week, my hips have a little extra padding so to speak leftover from being nearly 300 lbs! Have been 150 lbs. after discovering Weight Watchers also in the early '90's so maybe I'm just a stubborn redhead, but I just keep on keeping on taking the lesser evil KNOWING that Copaxone is keeping me walking after all these years abeit slower but hey, I'LL TAKE IT!!! Better living through chemistry, pills morning, noon and night, and shots 3 dayz a week--PRAISE THE GODDESS, this old filly keeps pushing it!!! Somebody has to take care of my 3 pupz afterall! Love my independent living and am NOT giving up... Keep on keeping on just like Gladys!!!

[Outlander1]

I was told to use a hot compress before injection and then to ice it afterwards. I usually have the worst reactions on my arms as well. I take a daily allergy pill and My doc told me to switch from Allegra to Zyrtec. From what I have been hearing, seems this may be common for Copaxone. Everyone is different so your doc may switch you. Take pics and make sure you show him!

[marktwinter]

Hostmom-1 is giving good advice. I have been on Copaxone for ten years and do not give injections in my arms. Only thighs,hips,and stomach. My reactions like yours are from going to deep. Nurses tell me to go manual but I just use the lowest setting. I hate to admit that I am chicken . Good Luck.

[Bygonelines]

I get that same reaction on my arms and thighs. So I only do shots in belly, hips, and doc added buttocks. For the itching I use a little hydrocortisone cream works like a charm. I used to do the daily shots but my reactions got to be too much. I do much better on the 3x a week. I also find if I take my shot right after my shower I have the most success. Usually no itching or swelling or anything. Definitely call Shared Solutions. The nurses are great to talk to and usually have some really good tips. Also ask them to send a nurse out to you. There is no cost to you. It is totally free (we should get something for our $5000/mo. drug cost). The nurse can evaluate your reaction and check your injection technique (They bring a ball like thing and syringes filled with saline to demonstrate and check your technique). I actually have them come out every 6 months to a year just to do a re-eval and to make sure I don't get sloppy on my injections. Shared Solutions will usually try to set you up with the same nurse each time that way you can build a repoir. My nurse actually gave me her work cell # so I could call her anytime with a question. It's great!

[37kf80]

I do the warm compress prior to my injection and the cold after. I get the same reaction on every injection area and it seems to be getting worse. The area swells up with a welt and gets red and hot then turns into a hard white bulge. The injections are becoming more painful as well.

[kdali]

Ugh, that looks awful! It looks like you stuck your arm on the stove. I am so sorry!

Yes, I have had issues with it, and I have been using 40mg for 2 months. I have areas that react in giant hot red welts that become hard lumps and the skin stays hyperpigmented for about 3 weeks. The pain after injection for me lasts an hour sometimes. A few weeks ago I had severe itching, and nothing topical worked. Otherwise, I'm pretty sure copaxone is made from fire

I took my lovely skin lesions to my dermatologist and he said nothing topical would work anyway. I take benadryl one hour before I inject and I've been taking claritin for 2 weeks (because they plowed the corn fields here, but it could be the reason that I don't hate life right now). I started injecting deeper and following the "5min of heat before, one minute ice on and off after injecting" rule. I read from others that your skin/immune system gets use to it and stops freaking out eventually.

This won't help your skin, but I find that a glass of red wine and watching something funny makes shooting myself more palatable!

I hope you find something that helps, and please share what it is <3

[purpletustin]

I really liked being on Copaxone. I felt very safe with it. Your reaction area looks sad.

I am presently off Copaxone as it was felt I'd moved on to SPMS. But, new tests reveal zero change in lesions. I'm going to try to get back on Copaxone. I was on it about 7 years and did very, very well with it.

A few things I did that stopped most of the reactions:

Before each shot, used hot pack (put into microwave a few seconds) and cold post shot.

Rotated location every shot. Identified the areas that were most prone to irritation and after checking with nurse, never used those areas again. Never could do the thigh area top.

Most important for me: Sprayed the area after shot with a Benadryl type (or generic) spray which is a antihistamine spray I ordered online from WalMart for about 4.00. One small spray bottle lasted me close to a year.

I did few minutes of icing after.

This is what enabled me to use the daily shots and then the 3 X weekly shot. I know it's difficult for many of us to do shots, but IMHO, safest.

[Sara2000]

When I was using Copaxone, I used to have the same type of reactions off and on. I think this is normal and they go away over time. It helped a bit if I put a cold pack on the area though. Under your arm has pretty sensitive skin. I usually used my stomach area, that seemed to handle it much better than my arms or legs. Wherever you have more "fat", try those areas - they don't seem to react as much to the shots. Good luck!

[Hjr4]

Sorry you are experiencing this. I too was getting very similar welts that took over a week to get smaller, were red and inflamed, felt hot the touch. I also starting getting something that is not that common, but the skin was getting necropsy, which means it was getting destroyed and looked like dents. I was only on this 3 months and when I finally went in to see my doctor and showed her my reaction, she had me stop that day, I would get these welts every place, but were worse on my arms.

I have been on Avonex now for 7 years. I actually welcomed a once weekly shot rather than every day. The needle is longer because you have to go into muscle, but it's only once a week.

I would call your doctor and see if he/she can see you right away, or see if you can send an email to her and send the photo. I would not wait to see anyone. This isn't normal. Good luck

[PatMelnikow]

Had to quit Betaseron because of similar reactions. I find Copaxone with daily injections better. I believe the every other day dosage was too strong. Are you using the daily dosage

[37kf80 in reply to PatMelnikow]

I'm on the 40mg 3x a week.

[Iona60 in reply to PatMelnikow]

Just wondering if you are using the regular copaxone daily injections or the generic. I was on Copaxone daily for 8 years, then had to switch to the 3x weekly. I didn't do well after that and have been switched to Gilenya. I miss the Copaxone.

[PatMelnikow in reply to Iona60]

Using Copaxone not the generic. My neurologist would not prescribe the generic even though insurance company was pushing it. The copay is more but I feel it is worth it. My doc feels when something works why change it.

[lauranell2u]

I was on it just over 2 years, it never got better for me, but it got to where the whelps didn't last as long or sting as much over time. Don't be discouraged. Out of all the DM drugs, it's the least immunosuppressive. I never had any infections or issues in that department.

[Iona60 in reply to lauranell2u]

Hi Laura, Did you start Tysabri yet? I'm not liking the Gilenya, but still on it.

[lauranell2u in reply to Iona60]

No ma'am. With the immunosuppression of all the other medications, I have decided to not be on therapy for a while. If given the chance I would go back on the Copaxone but for right now I am choosing no therapy. I'm a nurse and I want to work as long as I can and I can't work if I am sick all the time.

[Dmjansen]

You could contact a Shared Solutions nurse.

[Lindy53061]

What about calling the on call nurses at Shared Solutions Copaxone support the number is 800-887-8100

[Lindy53061]

Did you call Shared Solutions and talk to Copaxone clinical nurse support? The number is 800-887-8100.

[lightweaving]

I had bad reactions to it also. I has so angry all the time. Betaseron made me a diabetic

i am no longer on any of the DM? forgot

[Jesmcd2 CommunityAmbassador]

37kf80 what did you find out about the shot situation? Did you call the Dr? Or Shared Solutions?

[TracyBelle]

I have been on it since 2001. What you show in the photo is that the Depth Setting you are using is not deep enough. You probably have muscle in the area which keeps it from being "fleshy" enough. The warm patches, itching and hard bumps are eased (according to My Dr) by taking Benadryl at the same time. (I take my shot about an hour before bed, so the Benadryl works like a sleep aid.) I have still had hard, red itchy patches day's later. I took interferon (Avonex) the first year I was diagnosed and the "flu symptoms " got worse for me each week instead of disappearing. I missed days of life every week.

The good thing about Copaxone is that the next day you forget you had a shot. You have to sleep on the opposite side but by the time you roll over in your sleep you don't notice it. I have indentation from destruction of fat in all the injection sites (except my stomach- mental block to injections after C section). However, I am also still able to walk unassisted and I was diagnosed in 1999.

Every new medication since then has had way,way too many dangerous, deadly and irreversible side effects for me to find acceptable. I keep getting my shot because I want to be here for my son and I have no intention on switching to something dangerous just because of my "dents". I don't like them, but if someone asks what happened I say "hey it's better than not being able to walk"! The Copaxone shots hurt. It sucks but so does worsening symptoms. When you take the shot before bed, you sleep through the most painful stage.

Don't be discouraged or let this alone run you away from Copaxone. Set your auto injector to a deeper setting and aim for flabbier areas. (Easier said I know.) My husband always says "well if you weren't so damn skinny" if it is a particularly painful or slow injection. I am not skinny but don't have much fat left on the injection sites.

Don't give up or think other treatments are free of injection site reactions.

Get your shot take your bedtime meds (&Benadryl only if your Dr oks it). Watch a DVR of your favorite show. You will be sleepy by the time your show ends (& it distracts you from the sting). In the morning you will be free for the day.

[Boston2024]

That is not even the right spot to inject per the directions or what nurses say but maybe your doctor told you to inject on that spot and that mark goes away in 30 min normally. But copaxone can leave permanent indent in the skin.

[BlondiePink]

I had a bad reaction to my last Copaxone shot.

I felt faint and weak, like I was going to pass out. I had been on it for a while too. Needless to say after my ER trip I stopped it and my Neuro put me on Tysabri. Best decision yet. No problems and no flare ups in 12 years.

Best of luck to you!