Anyone happy with the 40mg dose?

[VikingKitty]

happy

I'm happy with the 3x week 40 mg shots. Sure beats the daily 20 mg shots I was taking when I originally went on C.

[Imagine]

Yes

I was on the 20mg, 7 days per week for approximately a year. Because of the sites that were painful, I was inconsistent with my treatment. I started the 3 day per week in 2013, and now I am consistent with my treatment, and have no episodes of "throwing in the towel." I am thrilled with the 3 day per week change [Shalom,Suzanne

[DianeD]

I really do want to stop and see what happens.

I've been on Copaxone for more than 5 yrs. I started out with the daily 20mg., so the 40mg sounded good to me. I hate taking it and am so weary of injections. I've not experienced any improvement and it's difficult to really know if there are changes. My lesions are almost always the same, prior to and after Copaxone.

I cannot inject my arms or my stomach, so I'm stuck (ha, ha) with the thighs and hips. It is hard to find a spot that isn't hard or doesn't hurt/bleed.

I'm seriously thinking of quitting all DMD's. Maybe if I were younger (I'm 71) I'd be more optimistic, but this is getting so stressful. Even thinking about injecting hurts.

[DianeD]

Inconsistent

I was on the 20mg, 7 days per week for approximately a year. Because of the sites that were painful, I was inconsistent with my treatment. I started the 3 day per week in 2013, and now I am consistent with my treatment, and have no episodes of "throwing in the towel." I am thrilled with the 3 day per week change [Shalom,Suzanne

You are the first person here that I've ever heard mention that they were inconsistent. I am too and I often wonder if other people are?

I thought the 3 day per week would be better, but I just have trouble anticipating the pain.

[Mamabug]

You are the first person here that I've ever heard mention that they were inconsistent. I am too and I often wonder if other people are?

I thought the 3 day per week would be better, but I just have trouble anticipating the pain.

I've not ever been inconsistent. When I was on C20, I used it only 4x per week, with my MS Specialists' permission, due to really bad site reactions in 3 out of 4 sites, even after multiple conversations with Shared Solutions and being trained a second time, in doing my injections.

Even at a reduced dose, my MS flares were much less frequent and less severe, than when I'd been using Betaseron. So, I truly believed Copaxone was working for me, and didn't ever want to go back to the severe and frequent flares that I used to have. That was enough motivation to keep me compliant.

Now, I'm glad to be on C40. 3x/wk injections are easier to remember the schedule (M,W,F for me), and I am now getting a full dose, so I'm hoping for even better results with my DMD.

[VikingKitty]

still happy

I'm 3 1/2 months into C 40mg and the injection sites are lessening. Lumps aren't as bad and itching is lessening. Guess my body is adjusting to it.

[mom 2 4 cats]

After a year on 40mg I was given 20 mg qd and was on it for about 4 months when my mail order pharmacy started sending me 40 again. Less than 2 doses in I had a relapse.

I have been injecting myself in the rear end because I have a couple of large fat pads in that area I never have problems with, injecting myself anywhere else causes the painful lumps I have to massage out.

[NathanL]

I was prescribed Copaxone by a team of neurologist and MS specialist who basically can't decide if I have MS or not. They took the opinion that it wouldn't hurt to take even if I wound up not having MS. Long and complicated story.

What is the deal with Shared Solutions? I had the prescription called in and set up a delivery. The nurse from shared solutions called to make an appointment which was OK. Now shared solutions calls multiple times a day to do nothing but annoy the crap out of me. Nobody that has called has had a "reason". They ramble and finally when I get tired of it I will clearly say "Why is it that you called and what do you want from me. I never get an answer. This is getting old fast. All I have ever gotten so far is they are contracted with the maker of Capaxone and can't give a reason for the call. Honestly it sounds like people on some serious medication/drugs if you catch my drift. It's to the point of being very annoying and wanting to block their number. I finally told one girl to stop, think hard, concentrate, and now tell me why you called and still just rambling about who knows.

Any ideas, still don't know who they are other than tied in with the drug company and set up the nurse to teach me how to give an injection. Luckily I do that multiple times a day for the last 40 years for something else. Not a lot of "confidence" in the entire company so far.

[Ikaika]

I was prescribed Copaxone by a team of neurologist and MS specialist who basically can't decide if I have MS or not. They took the opinion that it wouldn't hurt to take even if I wound up not having MS. Long and complicated story.

What is the deal with Shared Solutions? I had the prescription called in and set up a delivery. The nurse from shared solutions called to make an appointment which was OK. Now shared solutions calls multiple times a day to do nothing but annoy the crap out of me. Nobody that has called has had a "reason". They ramble and finally when I get tired of it I will clearly say "Why is it that you called and what do you want from me. I never get an answer. This is getting old fast. All I have ever gotten so far is they are contracted with the maker of Capaxone and can't give a reason for the call. Honestly it sounds like people on some serious medication/drugs if you catch my drift. It's to the point of being very annoying and wanting to block their number. I finally told one girl to stop, think hard, concentrate, and now tell me why you called and still just rambling about who knows.

Any ideas, still don't know who they are other than tied in with the drug company and set up the nurse to teach me how to give an injection. Luckily I do that multiple times a day for the last 40 years for something else. Not a lot of "confidence" in the entire company so far.

Shared Solutions is the company that Markets the drug. Teva Pharmecuticals manufactures the drug. Shared Solutions is the company patients can go to for questions on the drug (but not your questions evidently , how to use, and financial assistance, etc.

I know what you are saying about their constant calling! You can definitely tell them you would like to be removed from all call lists, including the six month check in from a nurse. They will remove you and stop calling. Make sure to tell them ALL lists in ALL departments.

I have been taking Copaxone since 2007 and absolutely love it- well, as much as you can love taking a drug for an incurable disease - but point being, I no longer get calls from them like I did early on.

They will help if you call them, as well as get the medicine to us, and for that I'm very grateful. Since you don't need their calls, OPT OUT!

Hope this helps and also, have you went to another neurologist, not in same office, that could actually DX you or not? I wouldn't want to take anything if I didn't have to.

Wishing you blessings and please don't let their marketing practices deter you from something that may actually be a huge help!

[NathanL]

Thanks for the info. I could never get the connection as to why they were callng, they all said contracted to Shared Solutions. At least now I have an idea.

Yes I've seen multiple neurologist. Very long story, one day healthy. Get the shingles and then look like someone with very advanced MS. The first diagnoses was ADEM and in the 2-1/2 years since then I have had multiple issues which really don't fall in the MS spectrum which was the hardest part chasing down. What could/could not be MS. Stuff like heart rate jumpting to 160+ waking me up, re occuring infections over and over, extreme dehydration including dry skin all over my body to the point of pain and I drink 15ish 17oz bottles of water a day now with no help. Extreme shortness of breath to the point I can't walk from the bed to the bathroom without having to stop and such.

Finally a neurologist went down the list and said most of those are not something they would look for with MS and that's a pretty big MS clinic. She seemed to think something happened with the corticosteroids and immune system so now we go there while taking the copaxone. I had 134 lessions on my MRI (2-1/2 years ago) with no new lesions in the last 2-1/2 years. She seems to think I had MS for years and years, but I've never experienced any health issues and the last time I went to a Dr. in the last 20 years was for a sinus infection. She was really taken back when I told her I was much better off when I had the ADEM or MS relapse than I am now.

Anyway enough rambling, thanks for the info on shared solutions at least I know it's not life or death. I feel like I got trainee day or something. The nurse that called was professional. Then the office called and I really couldn't figure out the connection.

[TheBillLarson]

Started C40 in April 2016

Seeing as I was diagnosed at the end of March 2016 I"m rather impressed with the turn around time. Overall the experience has been fine, but I can echo the frustration of multiple calls that if you don't get to them, just start talking even when they go to your voice mail so by the time the message starts recording they are at the end of their schpeel. I called back once and they said they were just checking in. Okay, whatever.

Aside from the too frequent calls, I don't have any gripes against Shared Solutions. I wasn't overly impressed with Accredo, the distributing pharmacy (at least for me) initially because they messed up and delayed my delivery. I called my neuro's nurse who in a nut shell tore them (Accredo) a new one. I got three calls from them right after the nurse laid into them. They should have overnighted my prescritpion, but they didn't. C'est la vie.

The only issue I have with C40 is having to stab myself 3X a week. I don't have a needle phobia by any stretch of the imagination; I am one of those weird people that watch the phlebotomist as they stick me to draw blood. I"m just not fond of having to stab myself. I use the AutoJect2, which for me is a life saver because I don't know that I could do it manually. I now do rotate through all of the suggested administration sites. I used to only do five of the seven because the back of my arms don't have a lot of flab on them. The SS nurse came out for a 75 day checkup and gave me grief about not using all seven, even though I was not having any real skin issues at any injection site aside from the usual post-injection stuff. My preference for location is the abdomen, because I have plenty of padding there. In fact I would be pleased if the (fat) cells started dying there due to the injection because there are plenty more that can take its place.

At diagnosis my doc gave me C40, Avonex, and Tecfidera as his recommended medications. Long story short I chose C40 as it by far had the least side effects. I didn't care about the administration method.

[NathanL]

Ok thanks for the info. Doesn't look like I'll be starting copaxone. Not thrilled with shared solutions business model and not really thrilled with my doctor sharing my personal number with them without my knowledge. I have no patience for dealing with people who call multiple times a day to a business phone (I'm on call 24/7) and can't remember why they called and one dingbat couldn't remember her name when asked.

I asked my doctor to please show where I released her to give out any information other then my prescription and she was ummm ummm ummm. Oh well.

[Jules A]

How is everyone doing on 40mg? I was on 20s for 12 years and my insurance finally pulled the plug insisting I go to the generic. My doc wasn't in favor of the generic for me. I started the 40mg a week ago and continue having reservations that I'm only getting 120mg a week instead of 140mg a week. I have some 20s left over from getting it a bit early some months and am thinking about adding an extra injection and either continue the 140mg a week or come close. I'll discuss with my doctor and add an update. I'm very compliant with my medication I was 12h late on 2-3 occasions but never missed my daily injections. I never minded them but have to say I'm already enjoying the 3 days a week! Hope everyone is well.

[Ikaika]

How is everyone doing on 40mg? I was on 20s for 12 years and my insurance finally pulled the plug insisting I go to the generic. My doc wasn't in favor of the generic for me. I started the 40mg a week ago and continue having reservations that I'm only getting 120mg a week instead of 140mg a week. I have some 20s left over from getting it a bit early some months and am thinking about adding an extra injection and either continue the 140mg a week or come close. I'll discuss with my doctor and add an update. I'm very compliant with my medication I was 12h late on 2-3 occasions but never missed my daily injections. I never minded them but have to say I'm already enjoying the 3 days a week! Hope everyone is well.

I'm finding no issues with the 40mg compared to the 20mg. I was on 20mg for about eight years then switched to the 40, which I've been on for about a year now.

At first, I didn't want to switch because I thought I wouldn't be able to remember injection sites and what days, etc as daily was habitual. My head was going nuts trying to figure it out.

But turns out, it's actually easy and I not only remember my injection sites but I even remember where within the site! I chose MWF and only once I had a week where I did TTthSat and no prob.

I haven't ever had side effect or site issues with Copaxone and it's no different for me with the 40. (Thank you Lord!)

Now...I've done a lot of research to show that this is NOT from switching to 40, and through many tears, learned that all of a sudden on my annual MRI, I have numerous, new, active lesions. (Along with a concussion from fall- which came first, who knows.)
Point being, after nearly ten years on my beloved Copaxone- which I truly consider a loyal friend- I need to switch DMT's and am looking at Gileyna, poss Plegridy, but Gileyna is stronger and a better option for me.

So I'm coming to terms that with SOOOO many things we deal with the MS, the one thing that was not even an issue and I am very thankful for, has to change too. It's just time for a new sheriff in town to keep the MS in line.

All in all, I LOVE my Copaxone and once I finally made the switch to 40- it's even easier than the 20!! I didn't think possible so yay!! Hope you have great results on yours too!

[Mamabug]

Jules --
When I was on Copaxone 20, I only used it 4x per week, with my MS specialist's approval, due to site reactions. So I was only getting 80 mg per week, and it was much more effective, for me, than when I'd been on a full dose of Betaseron. Some studies have been done that indicate an every other day dose is just as effective as a daily dose.

So, if 89 mg per week worked for me, probably 120 mg will be fine for you.