Thanks for the reply. I value all of the opinions we can get. I hope your treatments go well with Copaxone and I wish you the best. I dont post alot, but read frequently. Please post how you are doing once on the Copaxone.
I chose Copaxone (not yet started it) because it seems to have the least side affects and appears to be very effective. Also, it does not need to be refrigerated and can stay out of the frig for 30 days. Problem is, it will cost me $510 a month with HealthNet insurance, OUCH!!!! Sometimes I feel like just taking my chances with this MS but my wife wants me to treat it.
You are very welcome, Magoo. I wish you and your wife peace, with your decisions.
FYI - just an update. It's the day after last night's full dose. When I woke up this am, I was worried because I had a lot of aches in my arms and I had to go to work. They subsided this afternoon, and all I had (still have) to battle is the tiredness. I'll take it over the body pain, and just wanted to let you know, since like you said, it's not far from where you are starting.
I'm grateful for the time both of you took to answer.
I am beginning to think ultimately our choice of will come down to the three reasons Que stated. I just hate the fact that for at least a while, she will have these flu side effects three times a week. At this point, I'm probably just too hung up on it.
Good luck to the both of you with your Rebif. With this being your 5th week on the drug, sllowe, I suspect you and your husband are not too far off from where we are...changes abound. We have been trying to be conscience of adapting certain aspects of our lives, but not letting the disease become an easy out or excuse for not doing things or letting stuff slide. It seems that could be a dangerous rut to get caught in.
Again, thank you for your help. I appreciate your thoughtfulness.
Well, the decision, in the end, I left up to my Neuro. I was not sure what one would be best, so I felt he should choose for me.
I'm in my 5th week. My husband just gave me the 1st of the 44's (which is the full dose) tonight. The syringes are pre-packaged and they gradually increase it to the full dose, which helps the body get use to it. I experience a fever and aches and headache the next day after. It's thought that if you take it at night, you'll sleep through the symptoms, but mine seem to come on the next day (not sure at night, if so, I have slept through them so far).
For me, it seems that, I adjust, just in time to get next shot, and I'm hoping eventually even that goes away. Like Que03 said, they advise pre-medicating w/tylenol, naproxen, or advil etc. I think that is a good advice. A lot of my aches are in my arms, but I had pain in the left arm, neck and shoulder before I started treatment.
My nurse was really good. If your wife ends up w/Rebif, the nurse will have her do it herself, which I think is best for the 1st time (I chose stomach and glad I did). I have my husband do those that are hard to grab and position (rump). Also, I tried the arm, it was painful, I pulled it out and haven't gone back.
It is best she doesn't get too worked up, the most you get (with the shot) is burning and a pinch (once you get past the brain telling you not to push in the needle). I think the symptoms are worse than the shot. They will teach you both everything. I hope she isn't spooked by needles. I don't like them, and tried not to think about them. When they were delivered, I didn't even look in the box until the nurse was scheduled and came out - she opened them. That may be a good for your wife too. The meds will come before the nurse does. Just leave them in the fridge.
I still have a hard time adjusting to the MS, the limitations, the change in lifestyle, and still looking the same ,and everyone's expectations.
It's very difficult, but I think you will make that easier for her. . .
I'd be glad to answer any other questions you have. . . . hope you have a good night.
I chose Rebif for a couple of reasons: 1)it had lower number of relapses than Avonex 2)it is a subcutaneous injection which is less painful in my opinion and mentally easier for me to do to myself 3)I wanted the most aggressive drug b/c I am young and have 3 busy kids to keep up with. After almost 3 years I still have some side effects but am vigilent about taking tyelonol or ibuprofen before injection at bedtime.
I think it is awesome and shows tremendous support for your wife that you are reading up!!
Don't fret too much. You can change meds if you feel like you have made the wrong decision.
Thank you for the kind words and the response. I'm glad to talk to somebody taking Rebif since that is likely where we will end up. How is it that you wound up on Rebif vs. the other DMDs?
How long have you been taking the drug? I didn't realize that a person was started on a lower dosage then increased ( I suppose the Nureo will go through all of this ). How long did it take for your body to adjust to the symptoms?
Thank you for the advice about the needle vs. the auto-injector. I don't know what her tolerance level will be as far as actually seeing a needle though. The day of her lumbar puncture and blood work
This is denfinitely a new lifestyle.
Re: the symptoms. I did get them the next day. . .they started on the lowest dose, but then my body did begin to get use to it, until my next increase. I just finished up the 22's, and start the full tonight. My symptoms were, fever, which didn't come back w/the 22's, and aches and headache, which I still get, and then it subsides for me, until the day after the next injection.
I thought mentioning would be helpful, since you seem you want to watch out for her. . again, it's wonderful.
I wish you and your wife well with the new lifestyle. I'm on the Rebif, and wanted to mention, that I have not used the auto injector. I've found that using the needle straight up, is less invasive (allows you to do it at your own pace). I bruise and mark easily, and figured I'd avoid the abrupt insertion w/the auto injector.
Also, even though I thought the stomach injection would be horrible (just in my head), it's the best area for me, even though I alternate. Needle is very thin, and sharp, so it's not so bad.
This is wonderful, how supportive you are and willing to learn about the disease.
Thank you for the thoughtful responses.
As soon as we found out about the auto-injector that was a given for her. It was also a given that I was going to be giving her the shots.
It is encouraging to hear that the "flu like symptons" rarely give you the hang-over effect the next day.
Emotions swing from one extreme to another every other day. If anything, she has been there for me as much as I try to be there for her. It is difficult sometimes when you run out of words of comfort, or don't have the answer to "fix" it. Every time we think we sufficiently grasp an aspect of this disease, it changes or we learn something new. Frustrating.
Thanks again to all of you.
I think its great that you are helping your wife,your a very inspirational spouse.
I am on rebif, I have SPMS but willing to give the meds a try.I have had 3 relapses since march each requiring solu-medrol infusions.Since being on rebif my attacks have lessoned.I know 3 seems to be alot but thats been good for me.
With rebif there is site reactions,but rotating the sites helps.The rebif comes with an auto-injector and you don't even see the needle.Its quick and virtually painless.I take tyelenol before hand,do the shots before I go to bed and sleep through any side effects.I have only had a few occassions of feeling yucky and sluggish the following day.
This has been a shock to you and your wife.It takes time to absorb,but this disease is liveable and with todays meds its manageable.
Another thing you might give some thought to is complication rates. I've been on copaxone for a year. My doctor recommended Novantrone (a chemotherapy drug), but I believe it's associated with some risk of cardiomyopathy. Since I had a heart attack a couple of years ago, I didn't want to risk that. And since I seem to build up antibodies readily, I was apprehensive about interferons. Now Tysabri had been mentioned. But, I've heard that if you stop taking it for any reason, it seems to accelerate symptoms. There's no clear right choice.
I can sympathize with your wife's situation. I, too, was diagnosed when I had an MRI for another reason. Now that I'm aware of it, I do notice some symptoms that I would have disregarded previously.
One more point I'd li:ke to make: I am very pleased that you are getting as involved as you seem to be. And I'd suggest that, if your wife hates needles, you administer her shots, at least for awhile. My husband did mine for the first few months, until I worked up the nerve. And I did have some depression; actually I think for about a year, every morining when I woke up the first thing I thought about was "I have MS". So, be patient; this is a big deal for her to cope with.
Hi Shawn. Thanks for sharing with me/us. Why did you choose Copaxone over the other DMDs? I am looking for any information and opinions that I can gather.
I have just been diagnosed with MS after having a CIS and my neurologist wants me to start therapy as it is important to treat early on. I chose Copaxone and start it next week. Check out www.sharedsolutions.com.
Hi, Magoo. There is one point you missed about the antibodies to interferon-beta. Once you develop neutralizing antibodies, the ENTIRE class of meds is OUT. You can't move up or down. You would be forced to Copaxone or one of the newer ones coming out.
Heather - glad to see the mood is returning, hehe. We'll treat you kindly, though for another little while, 'kay?
Thanks for the info. The link you posted was actually quite helpful. There are several other very helpful discussions accessible through that website.
I believe the answer to Heather's question is actually found in the link. And yes, it appears that the antibodies are tested for and should be tested for regularly through blood testing. The one thing that I now feel more comfortable with, is it seems practical to start with say Rebif, and if antibodies are developed one can move to Avonex that has the lesser rate of developing them.
My wife is deathly afraid of needles so Betaseron was more or less ruled out already just based on frequency of injection since an alternative of Rebif was presented.
Trying to learn about and digest all of the information makes me want to bang my head against the wall. I never dreamed that I would ever need or want to know about MRIs, lesions, DMDs, EVPs and the lot to the extent that I now know.
I appreciate the breadth of knowledge that many on forum have, and are willing to share.
Quix, How do you know if you have built up antibodies? Is this found during blood testing that I had every six months while on Avonex? Or was this just to test my liver function, etc.?
If you get a chance...would love to hear your response.
From "Not So Cranky Woman" today, feeling better..
I found a nice transcript from a webcast or something that provides a more coherent discussion of the topic of neutralizing antibodies that I could write. This was a huge topic a couple of years ago and hotly debated. They knew the antibodies could form, but there was debate whether they were clinically significant - that is whether they really abolished or diminished the effectiveness of the med. My neuro absolutely believes they can. And he is a researcher (as I said, with Avonex)
Here is the link to a brief and totally clear discussion:
In my searches for "real" comparisons of the meds, it is clear that Avonex is not as statistically effective as Rebif. But, I suspect that I actually have a progressive form of the disease and it is not clear if any would be helpful. So I went with my neuro's recommendation. Avonex is, however, very effective for a large number of people. And if it isn't as effective at diminshing relapses you can always move up, having had just a small chance to develop antibodies.
The rates of development of antibodies are: (depending on the study you read)
Avonex 3% to 5%
Rebif 20% to 25%
Plus, the side effect profile for Betaseron is not attractive to me. It would not be among "my" choices. This was influenced heavily by the distaste for it from my neurologist.
I certainly respect that your wife's non-wienie neuro (lol) wishes to be aggressive in her treatment. If I thought it would make a difference for me, I would likely choose Rebif. Also, since the development of antibodies usually takes 9 months or longer, there may be some even better therapies available by then. Unless you have strong opposition, I believe it is a good thing to take choose from the meds your neurologist prefers. He will have the best knowledge of and experience with them, and you don't introduce a "negative" into the relationship.
Good luck, and best wishes for feeling well to your wife. She's lucky to have you! Quix
I appreciate your experiences and information.
This whole thing has been just a whirlwind for us. My wife goes to the doctor the first of August with a little numbness in two fingers...probably carpel tunnel or pinched nerve. By mid September she has MS. At this point we just want to through our arms in the air and call a time out and ask what the h*** just happened. The last two months have just been a tad overwhelming to say the least.
Am I understanding this right that dosage of the medicines, meaning a choice between Rebif and Avonex, could or should depend on the severity of the MS? I did not ever think of it that way before reading the previous posts.
I believe our Nureo laid it out to us as he plainly believes Rebif or Betaseron is more effective overall than Avonex. He is a believer of more frequent, higher dosage injections as a better way to control the disease. All research we have done or can find is done by the drug companies so of course each company is giving only the positive portions of their respective studies.
It is very frustrating to have to choose something that potentionally will have a great impact on my wife's(our) life, and we are making that choice practically blind.
Quix, could explain the concept of "neutralizing antibodies" again. You probably properly explained it your post and I cant understand it. In plain terms, Avonex has the least chance of becoming ineffective and Rebif has a greater chance of becoming ineffective?
I hope and would greatly appreciate any others to jump in and share their experiences with Avonex, Rebif, Betaseron, etc.
Thanks for the help Quix and Heather.
I am so glad to hear that your side effects dimished over time. How lucky you are.
I also have a bleeding or clotting disorder. The doctor's have not put a "name" to it as yet. The slightest bump on my arm or scratch and it's visible for weeks. My pro-time was off and stays that way. All they tell me, is that if my rate goes any higher, they will do more testing. For now, I just live with bruises or should I say large red marks...
I don't particularly like this disease either and it's sure made me cranky over the past few days...I just I am tired of doctors and meds...no offense on the doctor remark...
Best Wishes, Heather
Thank you very much, especially with doing the homework on the heating of the Avonex. I will increase my warming of it. It really helped!
As to duration of side effects, my are short-lived and already lessening in 5 months. I would have quit them had I been you also. I'm impressed that you toughed it out so long. There is a big difference between prolonging life and simply making it seem longer, lol.
I have an advantage over you. Because I also have Von Willebrand's Disease ( a bleeding disorder) no matter how careful I am, I get a tiny pinpoint hemorrhage at the shot site. Nothing that hurts or anything, but in two weeks there is still a tiny marker of exactly where the previous injection was.
I don't think we should shy away from telling our real stories, just because they may concern someone. However, if we can scare someone away from getting MS, that would be great!!! lol. I've tried this disease and I don't particularly like it. For enquiring minds....Q
Quix, here is the info you requested from another post....
I will scroll back and forth between your questions, so I can hopefully answer them all.
To the temperature question first (heating pad, etc.) I took a thermometer and tested what temp my heating pad was on the low setting. It was around 82 degrees if only on for a few minutes, then it started to rise. I checked with Biogen support, when I started doing this. They told me that as long as the Interferon Beta 1A is not exposed to high temperatures for a prolonged period of time, that I would not reduce the effecacy of the drug. They never told me what the exact temperature was in degrees, but assured me that the short amount of time that I warmed it, coming straight out of the frig that everything would be alright. You will have to trust me on this... My side-effects from Avonex lasted 4-5 days. So I KNOW the medication was working. This is also one reason I stopped taking Avonex after three years...when Biogen said the side-effects would diminish over time, they were WRONG in MY case. I am hesitant to put this is print because Dude is just starting his therapy and I certainly do not want to scare him off, before he even gets started. So...let me add, the side effects are different from one person to the next. Just because I experienced side-effects throughout my treatment does not mean that everyone will.
My first medication: Solumedrol. I had trouble with my glucose levels (I am a diabetic) and my blood pressure shot sky high. My glucose rose to 414 while I took the Sol for three days. This was the first time I had to take a shot of insulin, to combat the high readings. I was not insulin dependent at that time.
I swtiched Neuro's for various reasons and the second Neuro took my diagnosis of MS away. He said there was not enough convincing evidence to diagnosis MS. So I went untreated without ANY medication for over 2 years. Good Lord, did I suffer...not even any medication for pain...He was a total idiot!
I then went to a teaching hospital in Virginia where I live and was "re-diagnosed" with MS, being told that I had a textbook case of MS. It was then that I was placed on Avonex. As I said, I took it for three years. I felt that the treatment was worse than the disease, so I stopped taking it. I couldn't tolerate having the aches and pains of the flu-like symptoms for 4-5 days, get to feeling better, than having to repeat the shot all over again.
I have been off any medication for about 5 years now. I only take medications for the symptoms, nothing to help prevent relapses. My disease course has not changed for over 12 years. I still remain RR with some permanent disability.
Now the question about the "same leg." I am also very numb in my one leg, so I DID use the same leg more than one week in a row. Unfortunately, what happened is that I hit the exact same spot several times, that I had used the weeks before and developed a small lump and some necrosis. Minor, but eventually it made it so I had to be careful not to give myself a shot near that area. Continually injecting the same leg and for me, it was normally on the side of my thigh where I am so numb; caused some scarring underneath the skin, as you probably are aware happening as a physician. This made it hard to get the needle to penetrate the skin at all. You talk about painful. Owwwiiiieee. More than once, I could not get the needle in and had to stop what I was doing, replace the needle and start all over again. By this time, I was pouring in sweat and nervous. So it made the whole ordeal even harder. This is why I suggest you do not inject in the same leg two weeks in a row. Less chance of this very thing happening to you.
If you have any other questions, I will do my best to answer them. I choose NOT to take any of the drugs available, Copaxone, Rebif, Avonex, etc., as a matter of personal preference. If I saw a drastic change in my disease, I might reconsider. At the present, I suffer from daily, chronic pain in my legs. I have some cognitive problems that flair up, heat, infection etc. and disappear when I cool off or get over the infection. I just had a tooth extraction a couple of weeks ago and noticed a couple of days ago, that my fatigue is back, some cognitive problems, balance problems, numbness and tingling in the strangest places, speech screw-ups, slurred words, you know that drill...BUT, I will recover, as I always do. Yes I know that the MS is doing damage, but for right now, I am not ready to start back on any more of the MS therapy's. As I said, it's a personal choice. I am 54 years old, by the way.
Hope I have helped with some of these answers and certainly hope I have not scared anyone away from Avonex....it wasn't my intention.
Hey, There!! Good to see you back and to know you've been lurking. I have not educated myself on this topic so my overall knowledge is shallow. I will say that for me "getting the flu" is way overstatement. I have had the flu and my stiff and slightly sore muscles for a night and half a day are NOTHING that a bit of Tylenol doesn't handle.
Three of the drugs are Interferons and are forms produced normally in the body. Interferon-beta-1a (Avonex and Rebif), and Interferon-beta 1b (Betaseron). Copaxone is synthetically produced random peptides resembing the peptide in the protein of myelin (I think)
Avonex 30mcg injected deep IM once a week. Fewest injection site reactions/# of injections. This means being able to slip a needle about a inch to an inch and a half straight down into the muscle. Very little discomfort going in, it's an extremely sharp needle. Some mild stinging as you inject 1cc. A little transient sting/ache for a couple minutes after, like any shot. ((About 5 hours later onset of some myalgias and then muscle stiffness. I prime myself with the tylenol, 1 hour before and 3 hours after. If I wake up in the night to pee, I take another dose. Early the next day still a little soreness (like I had worked out). If I forget the tylenol, I have significant stiff and soreness.)) Avonex may not "kick in" to be effective for 4 months or so. Lowest (by far) incidence of clinically significant neutralizing antibodies. Approved for RRMA and CIS (Clinically Isolated Syndrome)
Rebiff 44mgm Sub sutaneously three days a week. Higher dose, more often. Can't speak personally to the side effects. It has been shown to statistically increase interval between attack much more quickly than Avonex, but by 5-6 months Avonex has "caught up". I would consider this if the attacks were coming very frequently. Higher incidence of neutralizing antibodies than Avonex. Injection site reactions more common. Approved for RRMS, being studied in higher doses for SPMS
Betaseron 250 mcg SQ - Aprroved first 1993 Highest dose, highest side effects, highest incidence of neutralizing antibodies. Approved for RRMS and SPMS.
Copoxane Not an Interferon. 20,000mcg injected daily SQ. Injection site reactions with permanent skin changes not uncommon. Any side effects usually very brief, except for 1 in 8 may have an "Immediate Post-Injection Reaction" (usually a few months into therapy) of a frightening constellation of flushing, chest and throat constriction, anxiety, and heart palpitations, sometimes itching. This is felt to be benign. Passes within 15 minutes or so. A nurse is available to "talk you through it". May happen more than once.
Because I had only had one attack and barely got a diagnosis, I went with my doc's recommendation for Avonex. If it isn't effective, I can move up on the dosage ladder - I would definitely chose Rebif then. I have been on Avonex for only 4 months, no new symptoms or relapses, but my course has been very odd and poorly categorizable.
Once you develop neutralizing antibodies to an interferon that coincide with a lack of effectiveness, ALL of the interferons are OUT. Given that reasoning and my weird disease course, I chose the losest incidence. Also I have huge respect for my MS neuro. He chose Avonex and Tysabri to research and does work closely with Biogen Idec. His reasoning made sense to me, given my situation and, after a month of looking at them, went with his rec. He would have given me any of them, however he doesn't like Betaseron - has had bad experiences with patients having significant side effects and of it causing neutralizing antibodies and thus, removing all the interferons from play.
I think if I had had a very aggressive onset with back-to-back relapses I would have stepped up to Rebif for the initial med.
That's my semi-educated view. I haven't read many of the research articles, because I have been focusing here on the diagnostic side. Sorry