This post has a little good, bad and ugly...
I will start with the good. I had a great vacation in California. The weather was lovely and the beach was awesome. I got plenty of sun but not too much. I also never got too hot.
We had a great time with my husband's family. We got to meet and hang out with our new baby niece for the first time. She is one of the cutest, sweetest babies I have ever seen and I have known a lot of babies. The whole famiy spent a good deal of the time just watching her. She was a great source of entertainment. This week's joke: "How many adults does it take to care for one baby?" We found it took at least four or five. Our time with her was really special. I may post a few pictures in the next few days.
Vacation was extremely relaxing and enjoyable. That was a good thing because now I will get into the bad...
I got the results from my MRI and I have three new lesions. My neurologist is suggesting that I go on a DMD. He wants me to choose between Copaxone, Rebif and Avonex.
While the results of my MRI were not surprising, considering this summer's symptoms, I am bummed. I have long been hoping that my diagnosis might miraculously change. I was also hoping my lesions would shrink or at least stay the same. My neurologist told me not to worry too much about the fact that I now have five lesions because MRIs can vary a lot from one time to the next but he did say that these results indicate that my lesions are active. My initial diagnosis was benign MS but alas, that is out the window now. I am sad to know my MS is progressing because I have worked so hard to treat my disease without meds. I eat healthy and get plenty of excercise. I still have full physical function and I work full time. I am afraid that going on a DMD is going to further complicate my life and make it harder to keep up with my rigorous full time job. I am now giving careful consideration to how I should proceed from here. I am hoping the MS community will sound off on the questions I have posted below.
Here are my questions.
1) Why did you choose to go on DMDs if you are on one?
2) Which DMDs have you been on?
3) What were the side effects with each drug you tried?
4) How much did the drug/s cost?
5) Based on your experience, which drug would you recommend and why?
Thanks so much for your help. This is a hard decision for me and frankly, not one I ever planned to make. I know, denial is not a river in Egypt :)
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21 comments:
I sent you an email - too much to say to fit in the comment box!! Take Care - Courtney
When originally diagnosed in 12/2000 I began my weekly injections of Avonex which I took for 2.5 yrs. The side effects of severe flulike symptoms and extreme fatigue were too much. Then Copaxone, similar S.E.'s. I opted for no treatment. I think the response to the DMD's are individual. So sorry to hear you are have active lesions.
The cost of my drugs were covered at that time by my insurance so I didn't have that worry or hassle.
I am sure you will do your research and make the right decision for you. Good luck.
Hi,
first of all I would like to thank you for your blog! I was diagnosed in February this year, and it helps me so much to read about your experiences with ms! You are a really good writer, and you seem like a very nice person as well! :)
When I got diagnosed I was set on medication straight away. It was a choice I made in agreement with the neurologist, since she said that instead of having an attack each year (as example), hopefully I would only get one every three year or so. I chose Copaxone as it does not have any flulike symptoms, and since I need to set the injection every night, it becomes a routine, and not so easy to forget.
The side effects for me are that it gets really red and itchy, but it goes away pretty fast. I work full time (also as a teacher), and the medication has not made my work days any more complicated. I live in Norway, where health care is fully covered, so I can't say anything about the costs. But just wanted to tell you that I have good experience with Copaxone (haven't tried the others though). My only symptoms, together with an optic neuritis that first caused my diagnosis, are tiredness and dizziness. So I'm hoping the Copaxone helps keeping all the other symptoms away. Good luck with your choice!
Karen
Thank you all so much for commenting and helping me out. I am sorry I can't say more but I'm feeling super-emotional about this today.
Everytime I have an MRI I hope for a miracle. I hope that it will be a big mistake that I was diagnosed with MS. We have to believe in something.
I have been on Refib for 13 months. The first few months were rough. I basically would feel really hungover during the night and the next morning. I had a really bad headache and felt really nauseaus. It doesn't happen that much anymore. I feel like if I get any side effects they usually occur on a Friday.
1) Why did you choose to go on DMDs if you are on one? My neuro put me on one as soon as I was diagnosed, probably because I had been sick for a solid year before being dx.
2) Which DMDs have you been on? Copaxone at first because I have depression, then Rebif, and now Tysabri.
3) What were the side effects with each drug you tried? C- I had 5 IPIRs, major injection site reactions and constant fevers. R-liver issues, constant fevers. T- I seem to get a lot of colds.
4) How much did the drug/s cost? C and R were ten dollars a month.
5) Based on your experience, which drug would you recommend and why? I love Ty for its ease and believe it or not liked C even though I had so many issues with it.
Thanks for the heads up (I have been quite remiss in checking on all the blogs I follow).
I was diagnosed in January of this year. I had an episode in 2005 and misdiagnosed by the insurance company supplied neurologist (with an MRI in hand I might add). It was decided I should go on meds immediately because this episode in January put me in the hospital.
I chose Copaxone because it would be daily and the same type of injection like my insulin (subcutaneous). It was mainly a convenience thing for me. The listed side effects are minimal. Mainly injection site reactions which are temporary. The itching is a pain in the arse but workable. Copaxone is thus far the only one I have taken.
The cost is nothing at this point. My insurance uses a mandatory pharmacy-by-mail system. The co-pay would be $750 for a 3 month supply but I got assistance that covers that. Lucky me.
I wish I could provide more details for you. Let me know if you have any questions.
Here are my questions.
1) Why did you choose to go on DMDs if you are on one?
I decided to go on a DMD because I was told it would slow the progression of MS
2) Which DMDs have you been on?
I first tried Avonex because it was a once a week injection. I personally could not give myself the shot because the needle had to go into the muscle. I was too squeamish, my husband or daughter did it for my. I now take Copaxone and I have been on it for six years.
3) What were the side effects with each drug you tried?
I experienced the side effects of flu like symptoms with Avonex. For me the flu like symptoms and fatigue lasted four to five days. I only had two to three good days before my next injection. It was depilating, after about four months and it was not getting better, I switch to Copaxone.
4) How much did the drug/s cost?
Although the drug itself is expensive, I am one of the fortunate Americans with good prescription benefits for now and I only pay a $9.00 co-pay for my DMD.
5) Based on your experience, which drug would you recommend and why?
I cannot recommend one or the other for you because we all experience drugs differently, but based on my experience I will not take Avonex again and I have questioned Copaxone three times because of my IPIR experiences. Nonetheless, I still prefer to be on Copaxone because since I have been on it I have not had any new lesions. I am use to giving myself the injections using an auto injector and I have learned the tricks of the trade to ease the site after an injection.
Although I have experience three IPIR’s it is very rare, but I am one of those people who is acceptable to side effects easily. I am continuing Copaxone because I honestly believe it is slowing the progression of MS for me and I have a somewhat normal life.
The bottom line Nadja, do what you think is best for you to sustain a normal life.
Hello! Love your blog, have been reading it for some time now and find it quite helpful. I was diagnosed in April of this year, and after getting a second opinion, my Neurologist and I settled on Copaxone. Ultimately, this decision was based on the efficacy of the drug in trials (in line with the interferons, but with potential for great longer-term results as well), combined with the limited side effects associated with Copaxone.
Based on what my doctor told me, my understanding is that the interferons are basically injecting yourself with something similar to what your body produces when you're coming down with the flu--hence the fever, chills, and flu-like side effects. I have a very active lifestyle, and much prefer the injection site reactions to the potential flu-like symptoms. I recently met a woman who has been living with MS for 8 years, and has been on Rebif, Avonex, and Copaxone--she said that Copaxone is the only one she did not have side effects with, and she has been on it for 4 years now.
With my insurance, the cost for Copaxone is $60/month (without insurance it would be more than $2,500/month). However, Shared Solutions, the company that distributes Copaxone, has a discount program that covers up to $50 per month for the patient (assuming you refill your prescription on time and are able to go through one of their specialty pharmacies)--leaving me with only $10 a month to cover. If you choose to go down this path, I would definitely recommend asking Shared Solutions about this and other assistance programs available.
I have only been on the treatment for a few weeks now, but it has been pretty easy to adjust, and is becoming quite a routine for me. I have posted several entries about my experiences with Copaxone on my blog at http://www.dwennimmen09.blogspot.com/.
Good luck with your decision--I know it wasn't easy for me, at least not until I had spoken with "the right" people (I switched doctors, and am 100% more confident than my initial neurologist who recommended Rebif). I hope the info I provided above was helpful!
Hi,
I just found your blog after you commented on another blog.
I recently started Betaseron and have taken Copaxone before.
Here are my questions.
1) Why did you choose to go on DMDs if you are on one?
I choose to only because I didn't want to look back and say "Why didn't I try it when I could". Now I can never say I didn't try it.
2) Which DMDs have you been on?
Copaxone and Betaseron
3) What were the side effects with each drug you tried?
With Copaxone I had the everday reminder of "I have MS" because you take the injections everyday...that's how I felt anyway. I also had injection site reactions (red, itching, puffy and then dips...I forget what they're called...in my skin at the injection site). I hate needles so having to get one everyday was a bit too much for me.
4) How much did the drug/s cost?
I have benefits through my husband's work so I only pay the $8 despensing fee.
5) Based on your experience, which drug would you recommend and why?
Out of the two, I would recommend Betaseron. I only take it three times a week (Mon, Wed and Fri) instead of every other day as per my doctor. I haven't had any reactions to it and since it's only three times I week, I can handle that.
Good Luck!
Thanks again everyone. I am overwhelmed with gratitude for all the time you took to respond. I hope others with my questions will find your comments and benefit as well.
Hey Nadja--
1) Why did you choose to go on DMDs if you are on one?
When I was diagnosed, I entered a study for Betaseron. I was going to try that or Rebif initially because there is a school of thought that the interferons have a bit of a better effectiveness than Copaxone.
2) Which DMDs have you been on?
Betaseron for 4 years
3) What were the side effects with each drug you tried?
Betaseron gives me some flu-like side-effects, but they are generally manageable. However, I am home and not working full-time, so if I have some "flu-iness" I can tend to it.
4) How much did the drug/s cost?
I think the drug is over $2K a month now. I have no copay, but our premium (with a small company group insurance plan) is over $800/month.
5) Based on your experience, which drug would you recommend and why? I don't recommend any specific DMD. But I recommend trying each and maybe finding one that will help you. I have had great results with Betaseron-- an average of a relapse every 2 years now, and less severe at that--- but I know that the side-effects can be daunting if out in the workforce. I like taking the injections less than every day, but I have site reactions and scar tissue nevertheless.
Oral meds are coming in the near future, so that's something to look forward to. Some of them are supposed to be as good or better than what is already available. I myslef can't wait to ditch the needles. But being on a DMD has really been a lifesaver for me. And it is believed that the sooner you begin (after diagnosis), the better the chances of one working for you.
Thanks Jen. I too am looking forward to the oral medications.
*sigh*
boo to new lesions. down with spotted MRI's!
I started a DMD because I need to know that in 10 years down the road, I will have done everything I could do.
I have been on Copaxone and Rebif...Rebif being the later. I stopped Copaxone because of injection site wells, and tears during injections (too painful).
I have had very few side effects with Rebif (limited to limb achiness which ibuprofen handles).
Copaxone takes up more room in your fridge, and if you travel, you have to take more needles =D
I loved the support through...oh crap, I can't remember the company name...that I got with Copaxone. The nurse on the phone would listen to me whenever, about whatever was bothering me.
While Rebif also has phone nurses, they aren't as available and interested.
Good luck.
Oh yes, if you use the auto injector - the Rebif machine is much quieter...not quite as much of a "bang".
Thanks Emms. I didn't know that the auto-injector made a bang. Yikes!
Hello! I started on Betaseron but was unable to tolerate interferon. Not to say you wouldn't be able to tolerate it- I have thyroid problems so that made it hard. I am now on Copaxone and doing well but it took awhile for me to get used to the stinging but I did, finally.
As far as cost, it really depends on what type of coverage you are on. I get mine free since I'm rock-bottom poor. Shared Solutions provides it to me.
It is a personal decision as to which DMD. I'd never choose a DMD for another.
I also found it easier to remember a daily DMD rather than one that was every other day like Betaseron unless you are good at coming up with a system.
Good luck!
Thanks Myelin. I think I'm going to do the Copaxone. It is only going to cost me $30.00 or $40.00 a month. Yeah!
wow...these are such informative comments...I might print these out to save for later. :>)
Although we communicated through email about this, I thought that I'd include this information for your growing collection. We've got a great community here.
Hi Nadja,
Sorry to hear about the new lesions. I just had MRIs conducted today and expect to see new lesions too. However, I replaced my PC computer with a Mac and can't view the pictures. :-(
Let's see if I can answer your questions.
1. I chose to use a DMD because I had gone blind in 2000 (but no lesions) and when I started developing lesions in 2005, I had already made up my mind to fight back with meds.
2. I started on Copaxone in 2005 and have been on it since.
3. I had the common injection site side-effects: burning, lumps, redness, but these lessened over time and by following some tips. No flu-like effects, but I did begin to experience PMS for the 1st time in my life. My hair has thinned a little but that would be a side-effect of other drugs I take.
4. The drug costs somewhere between $28,000 and $32,000. Your out of pocket cost would depend upon your insurance coverage.
5. I eliminated the beta-interferon drugs from my choices because of their potential side-effects of increased depression and flu-like symptoms, which left Copaxone. My first recommendation would be Copaxone (just cause I have experience with it and it seems to work well), followed by Rebif.
6. You could talk to Amy http://mslol.wordpress.com/ who has just recently switched from Copaxone to Rebif. In fact, depending upon the radiology report, I might be switching meds myself. Don't know yet.
I know that it can be a tough decision and I'm sorry that you have come to the point where you need to make it. Good luck.
Lisa
Merely, I thought you would be interested since I know you face the same choice.
Thanks for posting this here too Lisa. I think that along the way there will be others with the same questions and I hope everyone's comments will be of help to more people than just me.
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