Hard lumps-itchy-painful-fever-headache

[thewildrose]

Not sure what to do - I've been on copaxone for 3 weeks now without too much incident other than a small lump post 2 days or so. Depending on the site, it generally goes away in about a week. Massaging day after is not doing the trick.

Today was the first I tried icing after injection due to the extreme pain I've had since day one. I normally heat site for 5-10 min before injecting, inject and count to 10 before removing syringe (autoinject), and gently press with cotton ball for 30 seconds post-injection, then apply my chickweed salve to keep the itch away. Today, I also added icing after this.

Throughout the day, I've experienced itching like never before even though I followed all steps. I now have an egg-sized, hard, itchy, red, hot lump at today's injection site AND every site I've injected this week is raised lump, red, hot, and itchy. On top of that, I have had a fever all day and slight headache.

Is something wrong, or is this normal? I also started gabapentin for pain three days ago - drug interaction?

I'm thinking I'm going to start every other day with the copaxone. Has this worked ok for anyone?

All I know is I'm NOT doing an injection tomorrow!

[Cat Mom]

I just hit something and my message disappeared so sorry if this has already been sent.

WildRose, you could be experiencing a reaction or intolerance now that 3 weeks worth is in your body so you might want to let your doc know.

Do you pinch the fat and inject into it? That helps me a lot as well as manually injecting, I feel likei have better control. I've never heard about leaving the needle in for 10 seconds after but sounds... Ouch!

Please keep us posted on how you're doing.
Jen

[thewildrose]

This morning - lump is 6 inches by 3.5 inches, red and HOT. I am wondering the same thing CatMom.

I discussed all this with my PCP on Friday. She can't believe I'm even doing the copaxone because I don't take allopathic meds usually (then I really blew her mind accepting the gabapentin! haha) She sees how bad I really feel by taking this, but my neuro doesn't really know me and doesn't get it.

I told my pcp that I am just trying to hold through 'crisis' mode (job lost, how to pay for house, how to get pre-attack renovation done before winter, etc) and then am going to really work on natural diet/supplement/herb routine and see how I do. I was hoping to get the three months the neuro wanted of copaxone in though.

My neuro won't really answer a call - I do talk to the Acreedo nurse frequently, but he will likely point me to the neuro who doesn't take the calls :/ Just not taking the shot today...OH and no, nurse told me not to pinch if using autoinject, but that sounds like a great idea to me

[thewildrose]

Stretch Marks

Has anyone had a reaction like this injecting where there are stretch marks? This was my hip, can't see it well, so didn't realize until dh told me how shiny red the stretch marks were (ugh)

I think I am just going to take the shot tomorrow and see what happens. I might just start every other day (would also stretch my meds so when I lose my insurance next month, I actually have two months left )

[22cyclist]

Wildrose: If the fever started right after the shot, that is absolutely NOT normal. Have you taken another shot since then and not had that reaction?

In my experience (I took Copaxone for 1 year), it didn't work for me, but when my neuro didn't call me back, I would just leave a message with the nurse that I was stopping my DMD. That is what I did with my Rebif when it nearly killed me. That got their attention. I was called back the next day.

You could also get your PCP to call them, that usually gets them to pay attention as well.

You may need another DMD, or the fever could have been random from another cause. Or, one thing to think about, it could be that the area of your injection site could be infected. Either way, you need to see someone about it.

I would try your primary physician if no response from your neuro.

Then, each of these DMD programs has financial assistance depending on your income. Since your insurance has, or is changing, you need to reassess with them and apply again. Copaxone has the best one. I got mine free.

Make sure you use all of your resources and don't cut down on your doses. Your health is more important.

Take care
Lisa

[thewildrose]

Hi Lisa - thanks I did call neuro, who predictably told me call SS, so called SS and they said, ready for this? It's normal - they think I rubbed the injection site after injecting (which I don't think I did) GRRR.

I did inject this morning with no problems, even did PT (likely 'rubbing the injection site') without incident. I found several studies showing every other day works just as well, so I think I will do this. I will also check out the financial assistance as soon as I know what's going on with the insurance for sure.

As for the fever - I'm a little concerned. Given I have no lesions on three MRI's (brain, c-spine, t-spine) I can't figure out how they dx'd me with MS (LP and Glycominds blood test positive) with 12 years of symptoms. T-spine MRI showed a hemangioma - a little worried about lymphoma I also have raynaud's and pcp always thought I had lupus.

I went to Hopkins MS Center for second opinion - waiting to hear back on that also - hopefully will know for sure if copax is even the right med.

Thank you again,
michele

[22cyclist]

Hi Lisa - thanks I did call neuro, who predictably told me call SS, so called SS and they said, ready for this? It's normal - they think I rubbed the injection site after injecting (which I don't think I did) GRRR.

I did inject this morning with no problems, even did PT (likely 'rubbing the injection site') without incident. I found several studies showing every other day works just as well, so I think I will do this. I will also check out the financial assistance as soon as I know what's going on with the insurance for sure.

As for the fever - I'm a little concerned. Given I have no lesions on three MRI's (brain, c-spine, t-spine) I can't figure out how they dx'd me with MS (LP and Glycominds blood test positive) with 12 years of symptoms. T-spine MRI showed a hemangioma - a little worried about lymphoma I also have raynaud's and pcp always thought I had lupus.

I went to Hopkins MS Center for second opinion - waiting to hear back on that also - hopefully will know for sure if copax is even the right med.

Thank you again,
michele

I understand the Glocomids testing, however, your total testing does not meet the McDonalds criteria, and I would also question the diagnosis. Here is the criteria as of 2010.

1. Clinical Presentation
* 2 or more attacks (relapses)
* 2 or more objective clinical lesions

Additional Testing Needed: None; clinical evidence will suffice (additional evidence desirable but must be consistent with MS)

2. * 2 or more attacks
* 1 objective clinical lesion

Dissemination in space, demonstrated by:
* MRI
* or a positive CSF and 2 or more MRI lesions consistent with MS
* or further clinical attack involving different site
* 1 attack
* 2 or more objective clinical lesions

3.Dissemination in time, demonstrated by:
* MRI
* or second clinical attack
* 1 attack
* 1 objective clinical lesion
(monosymptomatic presentation)

4. Dissemination in space demonstrated by:
* MRI
* or positive CSF and 2 or more MRI lesions consistent with MS
and
Dissemination in time demonstrated by:
* MRI
* or second clinical attack
Insidious neurological progression
suggestive of MS
(primary progressive MS) One year of disease progression (retrospectively or prospectively determined) and
Two of the following: a. Positive brain MRI (nine T2 lesions or four or more T2 lesions with positive VEP) b. Positive spinal cord MRI (two focal T2 lesions) c. Positive CSF


You may have more information and meet it from just the small info you have given me. You may need to ask for evoked potentials to confirm diagnosis.

Your doctor may also be treating you for CIS (clinically isolated syndrome), or "pre-MS" so to speak. If your brain or cord do not develop lesions, I would definitely question the diagnosis. DMD's are not to be taken lightly.

Have you thought of a second opinion from an MS specialist?

Take care
Lisa

[MarkLavelle]

I was hoping to get the three months the neuro wanted of copaxone in though.

If you're only planning on taking C for three months, you might as well save yourself the agony and stop now!

I don't know any research specifics, but the consensus is that C doesn't start to work until you've been taking it for 6-9 months...

[Angeldifferent]

ANY1 HAVE ANYTHING POSITIVE TO SAY BOUT COPAXANE?

I'm a newbie, and about to begin treatment. was going to go with the copaxane, mostly heard only good things, no severe reactions, etc.....but reading this reaction of calling the paramedics? ughhhh. I'm very med sensitive....this is why i have a hard time talking w/other ms patients at times...gives me more anxiety! (yes i checked out the newbie board) lol....

I would love to hear some positive feedback anyone?

thank you!

[Stacey van 1]

Its not so bad Angeldifferent

I've only been on C for not quite 2 weeks but even after calling the paramedics, I wont quit taking it because of all the positive things that I have heard & read here about it. Also I have been told some horror stories about some of the other drugs side effects. I too am horribly sensitive to most meds (homeopathic or otherwise) and allergic to quite a few.

I will take the burning/bee sting feel, some of the other things I dont like so much but I just keep thinking that if this can help me to not have as many relapses/flares (whatever you want to call them) & help me in the long run then I will take it (I had to spend 12 days in a wheel chair a few weeks ago, whew heck of a flare!)

I wish you luck & not so much fear, Stacey

Remember always: dont sweat the petty stuff & never pet the sweaty stuff! Keep your spirits high!

[Angeldifferent]

Thank you! : )

Thank you for the positive note, i really appreciate it! Sorry to hear of you bad flare-up...thankful your improving now. Yes i figured...I can deal w/the stings & itches over any of the flu like junk and etcs I've heard/read.

Now just to get "my brave on" and do it...lol. My "treatment appt/decision" is on the 29th. I'll be happy to get going on it already, i think part of my anxiety is the wait and "what will happen" game we do in our heads. I'm trying to remain thankful that will HELP not hurt me...I like your quote...

Good luck in all you do, thanks again : ) take care!!!!

[rfreshour]

Same exact thing happening to me!

Wild Rose,

I just posted almost the same thing to the med board, the reaction part anyway, because I am thinking of not continuing mine (stopped for almost a month now).

I don't know why the severe reactions, either, and have done everything shared solutions told me to. Went for a couple weeks (or more) leaving msgs for my neuro, and when she did call back and I said something about quitting copax, her only reaction was "ok" and she changed the subject.

So, don't feel alone, I am going through the same thing. Please let me know if you find something that helps!

[newbie but goodie]

So sorry youre struggling! I went through agony with those lumps from about week 3 til about week 7 then it was miles better. I did the opposite of what SS advised me to do and found almost immediate relief.

I shoot cold- no ice, no heat, just clean, engage, and shoot. I use the autoject but have heard that manual is easier on the skin. Anyhoo, I digress.

After I take the shot, and I mean right after, I jump in the shower. The lumps only really give me trouble with this method if I shoot into stretch marks or trouble areas (arms, certain spots on legs). However, I have also nixed the idea of shooting in my arms. There is simply not enough meat there for me to poke week in and week out so I religiously rotate without the arms.

Good luck

[ladibabe]

I get the bumps all the time.. Sometimes they get bad, sometimes they don't. I've had headaches since November.. way before the copaxone..

When given the choice of medicines my Doc said there are side affects to every medicine so pick your poison. I chose copaxone because I don't want to get the flu, and I think the site reactions are far less aggrevating then liver damage.