Well, "shared solutions " called tonight and said that the Copaxone would be coming from "McK... Pharmacy". It is supposedly a nationwide pharmacy.
Does anyone else get the Copaxone this way, via fed ex?? We are supposed to hear from them in a day or so to find out what our co-pay will be. I was just wondering if this was our insurance requirement or does everyone get it this way.
Craig is pretty sad tonight. Starting the process is a big acknowledgement of your disease, right? A nurse already called to come for the injection teaching. I think there is a "rush" on this. We haven't even had the diagnosis for a week. But I am glad Craig is quickly getting treatment. But it is a lot for him to accept.
As always, thanks for your help and support!
I am glad that Craig's treatment is starting right away, but sorry he is sad, but I do understand. Eventhough I have not gotten to that point yet, I know I would feel the same way, and that is normal.
I think the toll of being ran through the ringer by all of those ignorant doctors must be taking it's toll on the both of you right now. I am truly sorry that Craig was treated this way for far too long! Tell him that I will be praying for him and keeping up on all of his updates. I will pray for you as well, for streghth to help you both get through this storm.
You are an amazing lady and a wonderful wife to your husband, and I admire your strength and courage that has shown through your words so clearly!!!!!!
Craig is Elaine's husband, the one whom we have come to know and care for through the forum. He has FINALLY been diagnosed with Primary Progressive MS, as we all suspected he would be, only after suffering terrible insults and disrespectful dismissiveness (he been dissed!) from the medical community at large for a period of years.
He used to post himself, in search of answers and to help support the rest of us. We are now lucky enough to have his wife, Elaine, aboard.
It's so hard to keep up with everyone!!!!!! Thanks for asking!
I bet those so-called docs are kicking themselves in the a%% now heh. Well, you tell Craig that BIG LEE is going to put in a special prayer for him tonight when I get to sleep, that's if I get to sleep...lol
I get my Copaxone this way. It is actually very convenient. It does come Fed Ex, on ice. They send it out next day service. I cannot get it from my local pharmacy because of some contractual issue, I think. (I think only certain pharmacies can carry it.)
I also use the "autoject" for my injections, and it is great. You load your prefilled syringe and push a button for the injection. Hope your nurse is bringing one. Don't be surprised if he welts up a bit, especially after the first injection. It's a great med as far as side effects, I pray it will work for Craig. Love, Amy
Craig hasn't had much time to let this sink in. I'm glad, however, that he's getting his medicine soon. The thing that made me very upset was a battle with the insurance company and/or the pharmacy. I was mentally ready, but had to put up with a run-around. I remember feeling pretty sad myself about that and even quite out-of-my-head angry that it took so long to finally get my treatment.
Like Amy said, be ready for some possible welting and pain. My husband does most of my injections, which really helps with that. The Autoinject, for me, shoots the medicine in there too quickly which makes the pooling of medicine greater under the skin. I would get the training with and without the Autoinject. You will need to get a prescription for the Autoinject from your doctor and call Shared Solutions to make sure it's sent to you before the nurse comes.
I get my medicine through Medco Speciality Pharmacy. However, I could have gotten it through Walgreen's close to my house, but I'm saving money through Medco in getting a three month supply. This is the pharmacy that is connected with my insurance company for mail-in orders. Each time it's comes, my husband has been here to get it and I've been at work, so I'm not sure if it's shipped FedEx or what. I think it actually comes DSL. II do know that it is put on ice packs, however, and shipped in a Styrofoam ice chest. I just make sure someone will be here all day, because I think the medicine for a three month supply is about $12,000--the price of a car!
I'm sure you will be told this, but in case your nurse forgets . . . lay out the pre-filled syringe that you'll be using at least 30 minutes before you inject it (before the Shared Solution nurse gets there) to minimize pain the first time.
I've never regretted going with Copaxone when I had to choose DMDs--I've been feeling better and haven't had side effects. Best wishes,
I'm glad Craig is finally getting some of the help he needs. It must be very hard for him (and you) to absorb so much in so little time. After fighting so long and so hard for a diagnosis, it's suddenly a reality. I hope that as a little time passes, he can focus his energy on treatment, PT, if he is still getting it. I pray these meds help him to stop his physical slide, and if not get better to stabalize him so that he can enjoy his family, and work.
Please take care of yourself also, as you are so valuable to Craig, and to us.
I get my Copaxone at my neighborhood CVS, very convenient. I do have to order it every month because of insurance but you may be able to get it on automatic refill .
I had my first injection three days after dx.. My friends who is a nurses and since I did not want to wait even one day for the Shared Solutions nurse app. , we got on their web site , saw how the injections are given and did it. ( oh and we also called them , talked with a nurse to be sure what we understood was right , it was ) They are pretty much just regular subcutaneous. You're a nurse , right ?? No biggie for you .. :)
One of their nurses suggested warm compresses before the injection and ice right after ... I can attest to the ice ... there is some stings for about 20 - 30 min. And have the copax. warmed up/room temp. before . I have no other side effects .
I had my big break down before hearing the words.. I really knew for nine months and was very angry with the whole world and incompetent doctors.. Maybe a some point I'll have more emotions but right now I'm processing .. And grateful that I was finally heard . Now there's hope and something to do about this .. Craig will get there .. Maybe he needs someone to talk to , professional . I got a life coach.. what a godsend ..
.What kind of PT does Craig do , is it painful ? I just started PT and speech and can see how much I have declined .. Its an eye opener, I have a lot of work to do . It's very fatiguing and painful. Strength and balance.
Tell Craig we are here for him , and we think he's doing GREAT... and of course you're the best .. :)
That IS speedy, wow, but sounds good! He'll not miss a beat - Dx, meds, and hopefully altering this progression. I pray the Copax does Craig well. He's in good hands, that is for sure.
My Rebif would come UPS, not fed ex. I believe it depends on the pharmacy. Since it's in a different class of drugs. The meds ad a nurse coming out this week sometime? I don't believe I had to pay the 1st shipment for some reason. Think it had to do with if I was going to do well with it. Once I stayed on it and received the 2nd one, then I started getting charged, if I'm remembering correctly.
Details of getting the DMDs seem to be entirely dependent on your insurance. For me it took seemingly forever for all the bureaucracy to be worked out, for both Copaxone and Avonex. Once it was, however, I was very fortunate. My insurance covers 3 months for only a $20 copay.
My insurance works through Walgreen's for meds to be delivered, and for big-ticket items such as DMDs, Walgreen's uses their specialty pharmacy known as MedMark. Overnight, refrigerated delivery is guaranteed. Soon you'll find yourself overrun with large cardboard boxes, loads of blocks of styrofoam insulation, and multiple icepacks.
Elaine, being a nurse, you're not likely to need all the "TLC" that Copaxone almost forces on you. They'll call Craig over and over, if my experience is any criterion, and they'll send you notebooks, tote bags, literature and the like till you want to scream Stop Already! So if that gets annoying you have to be firm. When it was clear that I was highly allergic to Copaxone they weren't any help at all, but they still called. However, don't be put off by my allergy, as I know you won't, since everyone is different.
Good luck, and let us know how Craig does with Copaxone.
Thanks everyone. I am going to go to Walgreens and Rite Aid with our insurance and compare prices to this pharmacy that Copaxone said will call. Thanks also for the help with the drug and getting the pre-filled syringe warmed up.
Well, I think our kids are getting by with the exception of our 17 year old daughter. We have six kids, but three are on the autism spectrum so they don't feel the full extent of their dad's illness yet. They have all sadly adjusted to the fact that he can't play sports where you need to run etc, but having the Shared Solutions staff on the phone last night kind of hit home with everyone.
My 17 yr old daughter is neuro-typical and was up all night throwing up. No fever etc, just a stomach ache and vomiting. Our dogs are sitting with her now to cheer her up. I am going to take her to a labyrinth maze at our art museum and some gardens this weekend. That is two of her favorite things to do.
Especially the labyrinth maze.....it is meant to "clear your head of worries" as you walk it. I know she will feel the full effect of Craig's illness the most out of all of our kids.
We will just keep praying that the Copaxone works.
And one good thing...yesterday the PT center where Craig has been going for the last four weeks changed their approach with Craig. Prior to NYU, they insisted that his spine was damaged because of spine disease, and MS "only damages the brain". So they insisted on putting Craig in traction and we were told to allow the traction or leave the center. The traction was really painful. I wanted Craig out of the center, but he really wanted to believe that his spine was fixable.
But yesterday, when he told them that NYU diagnosed him, they changed their opinion and gave him massage and stretching to the leg muscles. It helped alot to get rid of the pain and spasms. Today we go to the physiatrist and ask for more PT. The center wrote him a note saying they will agree to four weeks of massage and stretching if he wants to write for it. Boy, it is so hard for people with MS to get someone to listen, isn't it??
What Craig has been through with all those other doctors is so shocking to me. I am so glad to learn that your search for answers is finally over, and that now you can get on with dealing with the reality of MS. It sounds like Craig is grieving, which makes sense given how long he was in limbo, and is now entering a new phase of dealing with his illness. It is very difficult to accept a diagnosis that you know you will have to live with for the rest of your life. It's so final, to have this label of MS. I'm going on ten months now since dx, and many days I still don't think it has totally sunk in.
I'm also glad to hear that things are moving along quickly to get Craig on treatment. I have been on Copaxone for about two months, after an unsuccessful two-month run with Rebif. So far so good with Copaxone. My only side effect is the site reactions, which are not as severe as they were at the beginning. I use the auto-injector, and am not minding the daily injections at all. I didn't bother with a visit from a Shared Solutions nurse since I had already had the training for Rebif, and the auto-injectors are practically identical.
Here in Alberta, I can pick up my Copaxone at any local pharmacy, I just need to call one day ahead. I think the cost here is around $1400 per month. My employer plan pays 90%, and my non-group plan through the provincial government pays the remainder, so I am fortunate to have no co-pay.
I mentioned this a while ago but I'll repeat it again, in case Craig or anyone else can benefit from this suggestion. If you have the choice of which pharmacy you want to use, try to find one that has one of those preferred customer programs. I buy my meds at the Safeway pharmacy, which gives out Airmiles on all purchases. So even though my insurance plans totally cover all my meds, I still get the Airmiles as though I paid for them myself. I get about 600 Airmiles per month, enough for a round-trip ticket to Vancouver every other month. Many retail stores have similar programs where you get points for the value of your purchases. Since the meds are so expensive, you can accumulate points pretty quick, and then use these towards discounts on other purchases, travel, etc. Might as well get some measly perks for everything we have to go through!
Keep us posted and let us know how Craig is doing on the new med. There is eventually some peace of mind that comes with finally knowing what is wrong, and having something within your control to be able deal with it.
You are obviously a very strong and supportive partner, and Craig is very lucky not to have to go through this experience alone.
My situation is different because I am on Medicare. But, the pharmacy that my Medicare Advantge plan uses does send my Avonex to me via FedEx.
My MS Doc who is also an MS researcher said the same thing about himself and his family about Avonex. He isn't a fan of Copaxone. I'd ask him why, but he doesn't take questions from me very well. I don't think he is comfortable with my being a physician. He gets defensive like my questions are criticizing him.
From what I have read, I don't see why anyone would have a problem with Copaxone's effectiveness or side effect profile.
Just be sure that you have completely read about the occasional "immediate" side effect of Copaxone. This is an effect that about 12% to 15% (about 1 in 8) of users have, usually a few months into the treatment, but it can appear at any time. It may happen once or repeated times. It is a sudden feeling of chest pressure, shortness of breath, heart pounding (palpitations) and often sweating and flushing. Several people I have met online have had this and it often seems like it "must be a heart attack." This reaction lasts less than 15 minutes and the Phone Help Support RN's will talk you through it. KITTEN, who hasn't posted in a long while, was so frightened by this, that she thought she was dying, stopped the med and refused any other.
On the Copaxone website, it is not talked about openly. When KITTEN told us about her experience I went on the Copasone site and hand to go down 4 levels, before I saw a discussion of it. I thought this was poor form on part of the company. Even though this is not common and is not serious, they should admit it and speak about it openly. No one should be on this med and not know about it. It is much easier to have a known reaction and undertand that it will pass than it is to have it suddenly occur and for you to wonder if you are having a sudden heart attack or something.
Thanks for the info. Wow, Quix, one in eight. That's enough for me to be watching Craig very closely. And to make sure I have the Copaxone RN help phone number close to the phone.
The mail order pharmacy called yesterday and they are reasonable. Their price for the Copaxone is 200 dollars a month cheaper that Rite Aid. So of course we will go with them. But when you talk about a 2,200 dollar a month drug the whole thing is scary. Good thing is that Craig already paid so much money this year that he is at his co-pay limit and the Copaxone will have no co-pay till January. One blessing.
I was warned about this sudden, severe side effect of Copaxone, from the very beginning. I was told that one in 8 sounds like terrible odds, but really it isn't. I have been on Copaxone for 8 months and knock on wood have never had this kind of reaction and hope I never do.
I keep a Benadryl tablet where I give myself a shot. My Neuro told me that Copaxones reaction of this sort, is like an allergic reaction. She advised me to immediately pop a Benadryl in my mouth, if I felt this coming on. I have no idea whether this is correct information, but since I trust my Neuro, I do what she says. She said that none of her patients on Copaxone have ever reported this strange side-effect, so that gives me hope.
All of the DMD's have side-effects. It's a choice you have to make when you decide on which drug to use.
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