Shared Solutions

[JaneK1975]

I have been on Copaxone for a little over 2 years. I have some slight lipoatrophy issues, including some difficulty injecting into my arms (resistance against the plunger). But I've kept at it since I've had good MRI results. Tonight I couldn't get the plunger to move at all. It wouldn't budge, even after I tried pulling the needle out a bit.

I was super frustrated so I called a Shared Solutions nurse and instead of offering me any level of human compassion, she wasted my time trying to sell me on the 40mg prescription. I told her no way, but she kept on it trying to quote research and telling me that since their clinical trial lasted a "whole year" they have really good data. I cannot belive her audacity. I ended up having to tell her I wasn't interested three times before she shut her piehole. And the last time I said it I wasn't exactly nice about it.

I wasn't thinking much about the pill before, but I sure as h@ll am now! Nice work Shared Solutions nurse! Pffffft :P

[rendean]

Hi Jane,
I think Guitar Grrrl has given you sound advice! Just so your research before changing  DMDs so that you chose one that fits your lifestyle best ( no doubts there :-).

Sorry about about the lipoatrophy.  I, too, have lipoatrophy from the year I was on Copaxone.

Sending best wishes on your continued journey with this disease,

Ren

[JaneK1975]

Thank you, Guitar Grrrl. I've been avoiding the switch because Copaxone has given me good results. I'm afraid to switch, have a relapse and then feel like I asked for it because I wussed out on the shots. But I think it is almost time.

[Guitar_grrrl]

Sounds to me like it's time to switch meds. Maybe one of the orals? I've heard good things about Tecfidera and Gilenya.

Good to see you!

[JaneK1975]

I finally had a SS nurse out and she confirmed my dimples and lipoatrophy (which for some reason I had been busily trying to delude myself into believing were a figment of my imagination). She could even see one of my thigh dimples THROUGH MY FRIGGING JEANS. F@ck. This is so not okay. It's only been two and a half years. How are some people able to stay on Copaxone for a decade? I won't have anywhere left to shoot in another two years.

[HVAC]

I took my arms out of the round up because it was too painful. They have to use those areas because they used them for clinical trials. They have to do everything exactly like clinical trials. My MS nurse told me different things.

Sounds like the plungers were defective and you need new ones. I think they manufacture them in India.

Alex

[Lulu54]

Those scripts are infuriating and I wish there were a way around the legal issues these companies must abide by.  that said, there's never an excuse for being rude or disrespectful.  

There are alternate sites that you can use for your copaxone injections - it's not just those prime seven areas that have been identified to us, according to a few doctors I have heard speak about this.  You might ask your neurology staff - doctor or nurse - for their thoughts.

Its good to hear you are committed to your therapy and it seems to be working for you. `laura

[JaneK1975]

Yes, this "nurse" was clearly on a script. Her delivery was downright rude. I had a 6-month MRI just last month, and it really looks like Copaxone is working for me. Also, I have had very few symptoms.

My neuro asked me when I saw him if I had heard about the new pill and I told him that while I know I can't keep taking the shots forever, I'd like to stay on Copaxone a bit longer since it looks like it's working :/ We'll see what happens at my next MRI and follow up.

It's good to see you all, by the way. I hope all is well. I've been swamped with grad school and haven't had the energy to do anything but school/work for the last year and a half. I miss you guys.

[HVAC]

Unfortunately all the SS nurses can do read a script. I actually had their financial aid person call me stupid. I quit Copaxone then and there. They called me all the time trying to get me back. I think personally the hassles between SS and Medco Accredo were doing me more harm than good. I have been off Copaxone for four years. Luckily and I take full responsibility but my MS has nor progressed at all. I was waiting for Tecifedara but my MS Specialist will not put me on anything because of my Cancer.

Alex

[ksrn19]

I was ordered the 40 mg copaxone and shared solutions called me and said they would talk with my insurance company and to call them if they hadn't called by the following week. So I called back and their response was "No we haven't called them yet, honestly so many people are switching to the 40 mg dose we're so backed up on going through these claims for every one." I was like...I'll call the ins company myself if that's all you need... long story short, I was on the phone all day with my insurance, my neuro, and shared solutions and FINALLY got it ordered and sent to a specialty pharmacy who will call me when it comes in then I have to call the nurse to come over and teach me (an ICU nurse) how to give myself a SQ injection. lol. This whole thing is silly to me. I'm sure I'll be coming here to gripe about the injections soon, and I'm sorry you're having a hard time with it right now.

[kwarendorf]

"Still doesn't seem right to me for a nurse to be not helpful, "

I don't know JJ. My sister is a nurse and she is often a bigger pain in the a**  then she is helpful.  :-)

Jane - while "better the devil you know" may work in many situations, it might nit work here. the availability of oral options coupled by the RN sales spiel might get me looking elsewhere too!

Kyle

[essdipity]

In my brief time on Copaxone I found the Shared Solutions staff to be pleasant but ultimately very unhelpful. They must stick to a script and are not allowed to deviate, which natch makes for weird conversations, and probably accounts for her repeated statements which did not address your issues.

Since they were of no help, had to revert to my neuro, and maybe that was for the best. He determined that my skin reactions were way beyond normal (hives, lumps, welts, rashes, unbearable itching which defied all lotions, salves and allergy meds), and were thus an allergic response. So, so much for Copaxone for me. Between the staff and the reactions, I'd had enough.

I want to emphasize, though, that Copaxone is a fine MS treatment for a great many people, few of whom have the very sensitive skin that I do. If it's tolerable and it works, I say go for it. But if not, time to move on. Jane, that sounds like you. Gilenya, Aubagio and Tecfidera have now been around a while, and there's a lot on the web about them. If your neuro is decent, have a consult, and ask around. Good luck.

ess

[supermum_ms]

Wow Jane, definitely wrong for a help line nurse to be selling, that does not sound good at all!

I'm not sure if this is well known with telephone sales across the world, and she definitely sounded like she was trying to sell you their new product.......there is a 3 'no' rule. Until they hear no 3 times, they are suppose to keep trying to persuade you, because they may say something that gets you interested in the product, despite you already saying no but after 3 no's the potential of turning it into a sale, is less likely to happen. Depending on the company guidelines, most will get their phone sales people to stop their sales pitch after hearing the 3rd NO.

In a way the pitch is working on you, you didn't automatically get the help you needed straight away for your needle issues but after listened to the sales pitch, and even after saying no you actually are thinking about the pill form now, which you may not of thought about with out their sales pitch.  

Still doesn't seem right to me for a nurse to be not helpful, no matter what the reason, selling to patients is very ugly business to me!

Hugs.............JJ