I got the official today, What meds do you like for maintaining MS?
I got my official diagnosis today, that it is MS. The doctor wants to talk to me face-to-face monday to discuss treatment options.
From what I've read online it is going to take alot of injections for maintenance.
What do you like?
I'm starting to see the depressison side of this I think.
I told my mother what the doctor said today and she told me I was lying, I'm not really sick, I'm making all this up and just wasting their money, all the tests that the doctors did I faked.
At least my father friends and family are supportive, It just stinks that one of the people who should be your biggest support is the most hurtful, but that's how it's been my whole life. Nothing new there.
Hi - I have not seen johnniebear's post yet, but I can tell you there is no need to apologize here. You have just been dealt life changing news and it stinks that your mom had this type of reaction.
We talk here about what a climb to diagnosis this can be - so let me welcome you to the other side of the mountain. Take a few days to absorb this news - it will take more than a few but it sounds like your doctor has you on the fast track.
Start by making a written list of your questions - it is hard to remember them all under the pressure of a doctor appointment.
As for the DMD's there is asite I recommend often that walks you through the different variations of the injectibles ...
We're here to talk through any quesitons you might have. I'm sorry you have MS - welcome t o the club.
What dmd you use and other treatments is really a very individual thing between you and your neuro and what he/you think is going to be the best thing for your particular medical condition and even history. An example is that since I have lupus, I am limited to copaxone because with lupus, my body makes interferon so I can't take the interferons...whew that was a mouthful, but I think you get my drift.
You're pretty young, so there are a few things to consider. While the interferons look nice because they require less injections, your body can develop anti-interferon antibodies (sometimes called neutralizing antibodies.) There is also a flu like reaction associated with interferon therapy. This is not an issue with Copaxone, but you have to stick yourself every day. Copaxone has some side effects too, My big one is itching after the shot for about half an hour. Other than that, no big issues. They do warn you that after six months or so, there is a immediate reaction that some people get if they inject into a vein that can feel like a heart attack or panic attack for about 15 min. Still, it is not all that common.
I started with Copaxone, that leaves the other interferons till later, if I need a backup plan. The needle is a 27 gauge and 1/2 inch long. Docs typically prescribe an autoinjector, that I don't use. I'm more comfortable handling the small syringe.
The Copaxone is prepackaged and easy for me to travel with. I can keep it unrefrigerated for 30 day at up to 86 degrees.
Thanks alot for the feedback COBOB, I am a vet nurse and I am comfortable with needles, I like the idea of Copaxone because I think i read its SQ instead of IM even if it is every day.
is the dose small? Maybe like a dose of insulin?
I'm sorry for your dx and for your mothers reaction, though to be frank, your mothers reaction is for her and not so much about you, denial maybe how she copes with life's unpleasantries. Totally unfair to you and so wrong, though there isn't much you can do but inform her of the facts and with rational, explain to her how selfish and hurtful she is being when you are dealing with a life long disease without the love and support of your mother.
Please try and not let your mothers words bring you down, stand tall and strong in the supportive arms of others, eventually your mother will come to accept the dx and hopefully make amends for her initial reactions.
I'll add my welcome to Lulu's. Your mom will realize soon enough that this club doesn't take volunteer applicants. We get drafted into this upside down world when we fall down a hole. She'll have to figure things out for herself as you will be busy sorting out your own feelings for quite some time.
Depression is real and will likely come and go as it mingles with lots of up and down emotions, including a few good doses of denial that are all your own. It's an expected response to the diagnosis but it can also be part and parcel of the disease itself. Don't delay getting some help to talk those feeling out or chase them away with medication. They don't have to rule your life.
Actually, you are likely to hear this claim that you don't look sick repeated by more people than your mother. It's one of the things we learn to deal with. Lots of chronic illness doesn't show even when it's making it's host miserable. I suppose it's a good thing. If we must have MS, we may as well look great while having it! May your brain's lack of communication with your body never give you away!
Now, as hard as some here had to fight for injections, NOBODY LIKES any of them. We do appreciate the potential they represent though and the feeling we are doing something to detour the MS path of destruction.
I've been to the site Lulu posted. I found it very helpful a year ago when I was standing where you are now (and looking great standing there). I decided to go with the Copaxone when my doc recommended it for me. There are some site reactions to deal with but not side effects really. It's an adjustment initially and a daily reminder of the diagnosis even now. I try to deal with it one dose at a time and not look down the road too far in advance. There are too many side roads and I can't see over the hill of an unpredictable future anyway.
Sorry you got sucker punched and sucked in here but glad to have you all the same. Hope you'll stick around awhile to learn and teach and share.
My brain is slowing down and took so long composing that posts sneeked in before mine. lol So now there's a question on the table.
Yes, Copaxone is SQ. It's a bigger volume than the usual dose of insulin -- 1ml in each prefilled syringe. I also am comfortable handing the equipment and can give myself a 'naked' injection. I've found that I prefer to use the autoject as it gives me easier access to hard to reach areas and offers better consistency in technique and depth of injections.
Naked cost of Copaxone is around $35K a year. I haven't met anyone here that pays that. My copay ends up costing me $50 a month. Quite a few people here are fortunate enough to have the entire cost covered between insurance and manufacturer deductable assistance programs. Shared Solutions (from the makers of Copaxone) will help you figure it out after they receive the prescription order. Believe me, they want you to be able to take their drug!
Sorry to hear of your definitive diagnosis but at least you know what you are battling. Selecting a DMD needs some thoughtful consideration. Be prepared for the roller-coaster of emotions that will follows this dx . We are here to support you through vents, and rants and meltdowns as well as the achievements and a few laughs along the way.
We are glad to have you here, sorry about the reason why.
I feel much better knowing that insurance does help. I looked on my insurance website tonight and it says"$$$$$$!" Ouch!
I have BCBS, in my book it just says co-pays of 20, 40 and 60 I think.
I already signed up on shared solutions, now I guess maybe I'm just waiting for a script.
A copay of 60/month would be much better than a 20 percent of the naked cost.
I hope my insurance doesn't drop me!
Just to say that I am so sorry that your diagnosis of MS has been confirmed, but hope that it opens doors to help you find the right support, understanding and treatment to help you.
I was diagnosed in March this year and think that I took the news very well and have just got on with it. I had not cried until this morning (9 months later) and have no idea what triggered it but think it was something to do with driving over a beautiful common covered in snow as small snow flakes were falling. Something inside me just went "ping" as I finally allowed myself to face the enormity of what having MS is about. So I have shared this with you to say that it may take time for the diagnosis to sink in.
I am sure that you will be an asset to this site, but i regret the reason that has brought you to this forum. I wish you a very Merry Christmas and hope that your family will make a fuss over you.
I understand how you feel about your mom's reaction. I was dx earlier this year. When I told my mom, she said, oh honey, are you sure? and about 3 months later, asked me how I was feeling and if I was taking any meds......and that is the only time she has asked me anything about my dx, and we talk 1-2 times a week.
My sister (who is a RN) had a very similar reaction, and said.....maybe it is really something else, She too does not talk to me about it.
At this time I have chosen no DMD, and I am taking an off-label drug called LDN (low dose naltrexone) Most medical persons and well as most people on this forum, do not recommend it, but after reading all the info on the DMD, and realized that they are at best 29% effective other then Tysabri, which is up to 68%, but comes with greater risks....My neuro agreed to allow me to try LDN. He agrees the antedotal evidence is amazing.
And there is new evidence that 25% of patients may not benefit from beta interferons, and treatment may actually make you worse. The study is from Stanford....very interesting read.
By the way, if your Copaxone copay is $60/month, You can sign up for Shared Solution Shared Commitment Program that will pay up to $50 per month to help off set your copay.
You typically get hit with the first full copay and if you apply for Shared commitment, they will help out after the fist fill.
Depression and fear are normal at this stage. Try to be like a dog and live in the moment. I look at my five animals when ever I get to serious. Worry is trying to control what you can't.
I am sorry about your mother. It could just be denial from fear. My husband had to hear it from the Doctor before he would believe it. He just did not want to believe it. It took him longer to really accept it. He still waits outside when I see the Doctor. I went through my two years of testing on my own. It was awfully lonely. I got help from the MS Society they have info for the newly diagnosed and for families. My husband has done the MS bicycle ride since before he met me but was embarrassed to tell anyone I have MS. It is fear on his part. If we ignore it it will go away. He used to not want me to take my service dog when we were out together. I finally said okay I will only go out by myself with my dog. He is great now that he has accepted it. Some days I still think I will wake up and be fine.
Shared Solutions has an income based needs assistance program where they pay your whole copay. This is different from the discount program and you have to ask for it. You have to apply and be accepted before you get your prescription filled for them to pay. I would fax the information to them once you get the application. They do not reimburse even if they approve you the day after your script is filled. Some on line pharmacies will not participate in the regular $50 discount program from Shared Solutions. I had a big mess with the discount program being denied and then getting on the needs based assistance on time to fill my second script. I had to pay the $300 for the first three months myself.
I worked as a Veterinary assistant on and off from my teens up into my forties with MS. You probably will have a long career. Take care.
The DMDs are proven to slow progression in those whose MS is caught early and at your age I would say you would be in the high percentile. They are not made to necessarily make you feel better. They can help you feel better by slowing the disease.
LDN works on the brain to make you feel better so it is different all together. None of the MS Specialists in my area will prescribe LDN. I can't take a DMD anymore because I have a progressive form of MS but no Doctor would give me LDN. I do not fault anyone for taking LDN but I have done tons of research on it and it works on the endorphins to make you feel better which is great but the MS progression happens while someone is just taking LDN. Progression happens without symptoms.
There are two parts to MS treatment slowing progression and treating symptoms. This is confusing at first. The interferons, Copaxone, Tysabri, and the new oral medication (which is hard on the immune system) all slow progression. Then there are a variety of medications for symptoms. For flairs sometimes steroids are used they do not alter the course of MS they just sometimes help relieve symptoms but have some unpleasnt side effects.
So sorry to hear of your dx - but glad you found a great site with great support and people who understand. I was dx Feb, and am on REBIF. I inject 3x/week and as long as I take advil pre (and sometimes next day) the flu like symptoms are manageable.
I have BCBS and only pay 5.00/month. I am very lucky.
Has your doc talked about the new oral meds? Seems like many docs are not prescribing yet - want to wait for more time to see about side effects. But it may be worth the conversation to see what your neuro has to say about them. They were just approved a few months ago.
This MS stuff is a process - be patient and allow yourself to feel whatever comes your way. AND put yourself first - Take care and I wish you the best!
I've been on Copaxone for about 3 months. One of the reasons why I chose it is because it doesn't come with the flu-like symptoms like most of the others. And another reason is that it's not suppose to be damaging to your liver.
If I didn't have insurance, it would cost about $3200/month. With the Shared Solutions commitment taking care of my co-pay - these injections end up being free.
well she i imagine is in denial- its tough, but you are you they say thats a better outcome-i have seen that anyway, might get some papers that explain it- heck i have it -and i still dont understand it! im sure that would help get her on the net- i remember when i was told i had it -i immediantly -ha i cant spell- thought wheelchair!! yeh read up on it with her.
hugs tick- and welcome!
You've already received many welcomes and wonderful feedback from my fellow forum members so there's not more for me to add except that I'm sorry you had to join us over here on the "other side of the mountain" as Lu calls it. But you are here and so join in as much as you feel comfortable and know that you are amongst friends. They were there with me before and since my diagnosis and honestly, you won't find another more caring, compassionate and smarter group of individuals anywhere who will be there to help you throug this.
Thanks for sharing your story and finding your way to this forum.
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