medication compliance

[meeegun]

is this an issue for anyone else? it seems like no matter what i tell myself, i can't seem to stay compliant.

i know the risks, i know the benefits. i have seen with my own eyes what can happen when this disease progresses, and how important it is for me to do everything i can to prevent progression. i'm not sure what to do to get myself invested in this treatment.

[LMG]

Yes. I've been on copaxone for a couple years and I took it every day without fail for about a year but then would forget sometimes. I stopped taking it about a month ago and actually feel better. It's probably psychosomatic but I do feel better. I need to talk to my neuro about that.

I don't generally have a problem with shots but I hate having to give myself a shot every day. I hate the dimples the shots have caused and the perma bruising on my arms. I am still vain enough to not want my body marred.

Now though every time I mention being tired or something my husband gets pissed at me because I'm not doing my shots.

I'm rambling but I know where you are coming from. I've never been good about taking medicine. I'll have a headache and go hours before finally popping some ibuprofen.

[Sara Angela]

Did you get the picture frame that says this is why I do Copaxone? Maybe, doing that might help. It seems to me just being on a regular schedule helps. Make it just routine.

Sara

[agsgmom]

I had the same problem, so earlier this week I bought myself a 7 day pill box, noy only do I know if I took my pills- I now what day of the week it is .

[MarkLavelle]

I'm pretty sure I haven't missed a shot yet, even though I'm not 100% convinced I really have MS and there's no way to tell if it's really doing any good.

Unfortunately, I'd guess that personal health scares are the best incentive for compliance with doctors' orders. I know I'd find it a lot harder to be compliant if 'modern medicine' hadn't already saved my life twice...

[Spydre]

About a year after my diagnosis, right after I got off of Avonex, I read about the number of people with MS who aren't any medication - because they aren't med compliant. Basically, it's a pretty high number. The usual cause was cited - side effects, and people not wanting to deal with needles.

[newbie but goodie]

I am having the same problem. Ive been prescribes Copaxone since Jan 2012 and only took it faithfully until June of this year. I've been averaging less than half-time since then. One thing that helped was that my neuro suggested I seriously look into other meds. It turns out I am terrified of Tysabri, horrified of flu-like side effects, and can't abide the thought of a long needle. That leaves... Copaxone. Sigh.

The frenzy of blood work (the JCV test, just in case I chan ge my mind according to the neuro) and thoughts of PML related obits was enough to get me more or less back on track. I keep telling myself it is temporary- BG12 is right around the corner.

I am sorry I don't have anything more earth-shattering to share about compliance. It's tough, but you are not alone!

[Spydre]

I was at the point of going non-complaint myself twice.

The first was with Avonex. If the bruising on my thighs wasn't bad enough, the being sick half the week was. Finally, I talked my doctor after a year, telling him how much WORSE OFF it made me (and no improvement), and he agreed to a medication break until I got in with the MS Specialist.

She put me on Copaxone. I was on that for two years, and there were nights where hubby had to talk me into giving myself the shots. I just couldn't face it anymore. But in the end, before I talked to my doctor about my issues, I had my first flare in about two years - the first on Copaxone.

That was enough to have her changing my meds. I'm on Tysabri now, and my only problem is getting the IV sticks....and I may get a port put in to help with that. If we don't go the port route, I may ask for BG-12 as soon as it's out.

Newbie, have you talked to your doctor about Gilenya?

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[newbie but goodie]

Spydre: I did ask my neuro about Gilenya and the new one, Aubagio. He is not keen on either and I am not crazy about the side effects/risks. I think I am not doing as well as he would like and he is pushing for Tysabri. I see him on Nov 19 and will find out my JCV status then. In the meantime I am trying to put my big girl pants on and do the Copaxone like I am supposed to

[gomer]

I don't think anyone likes shots, even if once or less a day.

That said, I chose Copaxone despite being on multiple insulin shots every day. SO, if you think one shot a day with a needle smaller than what insulin needles were when I started insulin....just be glad you are not an insulin dependent diabetic!

Gomer Sir Falls-a-lot (Le Human Pin-Cushion)

[emily06]

Newbie, why is your neuro not keen on Aubagio. I'm weighing in my mind what I want to take. I'm leaning towards waiting for BG-12. But as it is right now my neuro wants me to start Aubagio. Currently I am on nothing - just Solu-Medrol and prenisone for flare ups which are coming yearly now. Of course the mfg of Aubagio is going to have to come down on that $45,000 price tag!!

[newbie but goodie]

Gomer- I am glad about that and I try to remind myself that it is only ONE shot I've actually been 7 for 7 this week. I've been telling myself to be thankful that there is a treatment, I can afford it, and I have power to fuel my refrigerator to keep it cold.

Emily- I think my neuro feels the efficacy of Aubagio is not worth the risks in my specific case. But also, he said that I have some low level inflammation that the Aubagio likely wouldn't help but that the Tysabri very well could. Not to mention that he knows me well enough to know that if I experienced the hair thinning/loss I would be right back to non-compliance!