Aa
Need opinions on treatment
Haven't been on here in a few months, seems like everything that could happen has happened. Anyway, today I went back to see my neuro and got the results of a spinal tap he had me take. It shows my IGG INDEX CSF is 1.03, and I guess it's supposed to be lower at 0.66 preferably (have no idea what the heck it means lol). Plus my Oligoclonal CSF shows bands (once again no clue). So believe it or not he said it is definitely MS. Which I hate to say this, but I'm relieved to have an answer at something finally regarding my health. He wants me to think long and hard over the weekend and read up on all the injections available and make a decision on one to start. He said there were 3 of them, which range from 3-4 times a week. I've read about the ones I have found on pretty much every MS site on the internet. But I wanna know people who have taken them, what you think about it. Good and bad things. Any help would be appreciated, and I hope everyone is getting along fine and life is great for ya.
I got my Copaxone in two weeks. I get a delivery every three months. I am only allowed to use Accredo to fill it because of my insurance. I had to go with Copaxone because of my depression. I am o.k. with injections every day.
Good luck. I am glad you know what you are dealing with. Sorry it is MS.
Alex
Good luck. I am glad you know what you are dealing with. Sorry it is MS.
Alex
It depends on your insurance company and prescription plan as to how you get your medicne and how often you get it. I could pick mine up at the pharmacy, but it would be more expensive that way, so I receive three months of it all at once. It is sent with a prearranged overnight FedEx delivery packed with iced gel packs.
It took forever for my medicine to arrive when I first got it. I don't think I've heard anyone else on this forum complain about this, but for me, it was very frustrating. There was always a tie up. The right paperwork wasn't sent, or the correct person wasn't contacted. It took about six weeks after the doctor wrote the prescription to when I gave myself my first shot. I personally think with my plan, there is a bean counter set up to how many times I called them. It was that way when I first got my Provigil, too (another costly medicine--btw a VERY GOOD medicine). Anyway, you'll probably have no problems, but I thought I'd share this with you so you won't be totally shocked if it does. I've not heard of anyone else on this forum complain about this. My sister, who had the same plan, complained of the same problem (giving me proof that there was indeed bean counting going on).
If you do go with Copaxone, a Shared Solutions nurse will come out and show you how to do the injections. She'll show you how to do the injections manually or with the autoinject (if you want to use it). It's a little awkard getting to some of the sites you'll be injecting; especially if you haven't injected yourself before, so you may consider using the device. If you want the device, you need to ask the Shared Solution people to send it to you before the nurse arrives.
I never regretted going with Copaxone. My sister went with Rebif, but never adjusted to the flu-like symptoms. It's not like that for everyone. Most people after gradually increasing the dosage with interferons, don't have much trouble, but she felt lousy the next day. That was another reason for my decision to go with Copaxone.
As far as remember the Copaxone, a lot of the Copaxonators (hehe) give their injections after they take showers. If you take your shower at the same time every day (like when you wake up or just before you go to bed), that may help you remember it. Your skin will be clean and heated--perfect for the injection.
Okay, I can write an epic about this subject. I'll stop talking your ear off.
It took forever for my medicine to arrive when I first got it. I don't think I've heard anyone else on this forum complain about this, but for me, it was very frustrating. There was always a tie up. The right paperwork wasn't sent, or the correct person wasn't contacted. It took about six weeks after the doctor wrote the prescription to when I gave myself my first shot. I personally think with my plan, there is a bean counter set up to how many times I called them. It was that way when I first got my Provigil, too (another costly medicine--btw a VERY GOOD medicine). Anyway, you'll probably have no problems, but I thought I'd share this with you so you won't be totally shocked if it does. I've not heard of anyone else on this forum complain about this. My sister, who had the same plan, complained of the same problem (giving me proof that there was indeed bean counting going on).
If you do go with Copaxone, a Shared Solutions nurse will come out and show you how to do the injections. She'll show you how to do the injections manually or with the autoinject (if you want to use it). It's a little awkard getting to some of the sites you'll be injecting; especially if you haven't injected yourself before, so you may consider using the device. If you want the device, you need to ask the Shared Solution people to send it to you before the nurse arrives.
I never regretted going with Copaxone. My sister went with Rebif, but never adjusted to the flu-like symptoms. It's not like that for everyone. Most people after gradually increasing the dosage with interferons, don't have much trouble, but she felt lousy the next day. That was another reason for my decision to go with Copaxone.
As far as remember the Copaxone, a lot of the Copaxonators (hehe) give their injections after they take showers. If you take your shower at the same time every day (like when you wake up or just before you go to bed), that may help you remember it. Your skin will be clean and heated--perfect for the injection.
Okay, I can write an epic about this subject. I'll stop talking your ear off.
The eye is what originally started this whole process of finding out about the MS. I think they said it was optic neuritis, but I barely remember what I had for dinner yesterday lol.
I think I've decided on the copaxone. Just seems like it would be the better fit for me. How often will I receive my medicine? Is it the same as if I go to the pharmacy to get a prescription filled?
I think I've decided on the copaxone. Just seems like it would be the better fit for me. How often will I receive my medicine? Is it the same as if I go to the pharmacy to get a prescription filled?
I wanted to ask before, but didn't want to pry into your personal life. But, how is your wife and kids handling this news?
Hi, Huff,
I'm so sorry you got this diagnosis. It truly *****. On the other hand, you got answers to what's going on.
FWIW, I take Rebif. The flu symptoms are pretty minimal for me. I take a couple of Ibuprofen just before I inject at bedtime, and if I'm still feeling cruddy the next morning, 2 more Ibuprofen have me good to go. I work 3 days a week, and try to get in 1 - 2 bike rides and 1 - 2 Yoga classes a week.
I'm coming out of a balance - issue flair, right now, so I'm going to hold off on the bike until I'm more sure of myself. Maybe I ought to mount the bike on a trainer.....hmmm.
Cheers,
Guitar_grrrl
I'm so sorry you got this diagnosis. It truly *****. On the other hand, you got answers to what's going on.
FWIW, I take Rebif. The flu symptoms are pretty minimal for me. I take a couple of Ibuprofen just before I inject at bedtime, and if I'm still feeling cruddy the next morning, 2 more Ibuprofen have me good to go. I work 3 days a week, and try to get in 1 - 2 bike rides and 1 - 2 Yoga classes a week.
I'm coming out of a balance - issue flair, right now, so I'm going to hold off on the bike until I'm more sure of myself. Maybe I ought to mount the bike on a trainer.....hmmm.
Cheers,
Guitar_grrrl
Have you had optic neuritis? It took me a while before my vision improved. My vision improved, but it never came back 100%. I do have a permament black spot in my eye. From time to time, my vision is very blurry, too. The double vision thing is pretty much gone, but it will come back when I'm really tired or too warm. My hearing, unfortunately, is getting worse. It is uncommon for MS to cause hearing problems. Are you experiencing problems with your hearing, too?
I had the same problem just after my diagnosis. For me, I knew I should read about the medicines and about the disease, but just couldn't for a while. Then gradually, as the shock wore off, I could. The trouble was, that I didn't have all the time in the world because my neuro wanted to see me again a couple of weeks later to decide on the medicine I wanted to take. I was still debating between three of the medicines (I ruled out one of them) just two days before my appointment! A pros and cons list helped me because I forced myself to concentrate on what I was reading. I had tons of questions about the medicines after doing this, and found almost all my answers on the Internet through research and an MS forum.
I know it's hard, and getting diagnosed with a chronic illness is something that usually takes some accepting time. You can always ask others what they think of the medicines they're on, why they chose what they did, and what some of the things they like and don't like about the medicine. Did your neuro give his/her preference as to the treatment?
I had the same problem just after my diagnosis. For me, I knew I should read about the medicines and about the disease, but just couldn't for a while. Then gradually, as the shock wore off, I could. The trouble was, that I didn't have all the time in the world because my neuro wanted to see me again a couple of weeks later to decide on the medicine I wanted to take. I was still debating between three of the medicines (I ruled out one of them) just two days before my appointment! A pros and cons list helped me because I forced myself to concentrate on what I was reading. I had tons of questions about the medicines after doing this, and found almost all my answers on the Internet through research and an MS forum.
I know it's hard, and getting diagnosed with a chronic illness is something that usually takes some accepting time. You can always ask others what they think of the medicines they're on, why they chose what they did, and what some of the things they like and don't like about the medicine. Did your neuro give his/her preference as to the treatment?
Thanks again everyone for icommenting. I'm still just as confused as I was before I wrote the original message yesterday. Not cause of your opinions, which I do appreciate big time, but I keep reading and reading but it's not registering in my head. Crazy I know lol.
At this point I'm just scared about my eye. I honestly don't know what the heck I'm going to do about it. It's so much better than the point it was at its worst, but it's not 100%. Glasses or contacts won't help me, so it looks like next year when I have to take a hearing and vision exam, I'm screwed!
Right now I am on so many medication for the MS, and a couple other things I don't know how I am gonna keep up with it. Be a lot easier if I worked an 9 to 5 job, then I could have some sort of schedule.
At this point I'm just scared about my eye. I honestly don't know what the heck I'm going to do about it. It's so much better than the point it was at its worst, but it's not 100%. Glasses or contacts won't help me, so it looks like next year when I have to take a hearing and vision exam, I'm screwed!
Right now I am on so many medication for the MS, and a couple other things I don't know how I am gonna keep up with it. Be a lot easier if I worked an 9 to 5 job, then I could have some sort of schedule.
I had a really hard time deciding on the medicines, too. Read all you can about the drug choices on this site, the drug companies' sites, other forums, and any literature your doctor gives you. I watched the DVDs that the doctor gave me and read the fine print on the inserts that are usually put into the drug packages. That was actually what helped me make up my mind on which drug to take.
Most of the CRABs (Copaxone, Rebif, Avonex, and Betaseron) cause side effects. For me, the quality of my life day in and day out is what helped me make my decision. Plus, I prefer not to have some possible side effects that have to be monitored closely by blood tests. I also have thyroid disease, and the literature said that it could affect the thyroid. That is why I chose Copaxone.
However, many people report few side effects (if any) to interferons. Plus, the drug starts to take effect within three months in keeping relapses from occurring. With Copaxone, it takes longer.
I'm happy I went with Copaxone, the shots aren't as bad as I thought that they would be. It is every day, but I take my medicine with my other medicines at night. It's just a routine now.
I first started out with the autoinject and found that this thing was like a dart gun. My husband then volunteered to help, which he did every day. Now, I give most of my shots and my husband wants to help, so he does some of them. It helps, somehow (I think it's kind of a mental thing).
I'm sure others will pipe in with their drug choice. I've not taken an interferon (my sister has, though), so I'm not completely objective. I can only give you what I think about the drug I'm taking and why I chose it.
You may be dreading starting a medicine that requires injection--I was. But like I said, it isn't nearly as bad as I thought it would be. I rarely think about it--even when I'm giving myself shots, now.
Best wishes,
Deb
Most of the CRABs (Copaxone, Rebif, Avonex, and Betaseron) cause side effects. For me, the quality of my life day in and day out is what helped me make my decision. Plus, I prefer not to have some possible side effects that have to be monitored closely by blood tests. I also have thyroid disease, and the literature said that it could affect the thyroid. That is why I chose Copaxone.
However, many people report few side effects (if any) to interferons. Plus, the drug starts to take effect within three months in keeping relapses from occurring. With Copaxone, it takes longer.
I'm happy I went with Copaxone, the shots aren't as bad as I thought that they would be. It is every day, but I take my medicine with my other medicines at night. It's just a routine now.
I first started out with the autoinject and found that this thing was like a dart gun. My husband then volunteered to help, which he did every day. Now, I give most of my shots and my husband wants to help, so he does some of them. It helps, somehow (I think it's kind of a mental thing).
I'm sure others will pipe in with their drug choice. I've not taken an interferon (my sister has, though), so I'm not completely objective. I can only give you what I think about the drug I'm taking and why I chose it.
You may be dreading starting a medicine that requires injection--I was. But like I said, it isn't nearly as bad as I thought it would be. I rarely think about it--even when I'm giving myself shots, now.
Best wishes,
Deb
I wanted to add something about the injections. I never would have believed I could do injections especially every single day. But, you know what? It is really a piece of cake. Once you get the hang of it, which takes maybe 2 weeks more or less, you really only think about it for 5 minutes - the time it takes to get the syringe, load it into the injection device and shot the medicine in.
And about having someone come to your house to show you how to use it...It's just a part of the process for the drug company to make sure you are educated properly on how to do the injections. It may take about an hour at the most, but better you learn the proper way right from the beginning. It's only one hour and then you are on your own.
Julie
And about having someone come to your house to show you how to use it...It's just a part of the process for the drug company to make sure you are educated properly on how to do the injections. It may take about an hour at the most, but better you learn the proper way right from the beginning. It's only one hour and then you are on your own.
Julie
Hey Huff,
Seems the positive CSF speeds the dx process - did mine too.
I'm glad you are considering the dosing schedule and how it fits into your life. There are differences. I was not sure I would hold myself to the daily injection either when in the decision phase. I went back and forth with each one and ultimately left it up to the Dr. who said Rebif @ 3 times a week. You may consider the Avonex which is once a week.
You really can't make a bad choice like Julie says. I don't have flu-like symptoms - I was reminded of the real flu last yr. I did get headaches, some minor aches and some weakness but found the pre-medicating helped like the nurses suggest and it does wear off like most meds once your body adjusts.
I'll share with you that after my 1st attack simmered I was then dx'd quickly and started the meds soon after. That did make it hard to distinguish between med related side affects and MS symptoms. And though some big ones backed off, daily ones persisted, and I didn't know if I was coming or going.
Since then, I tend to lean toward and advise to take a little time to make a decision if you are dx'd quickly, just not so long that you think you don't have to -- if that makes any sense.
Sorry for the dx, but please ask anything. Don't you go making your brain sore over this decision process - can make you batty.
-shell
Seems the positive CSF speeds the dx process - did mine too.
I'm glad you are considering the dosing schedule and how it fits into your life. There are differences. I was not sure I would hold myself to the daily injection either when in the decision phase. I went back and forth with each one and ultimately left it up to the Dr. who said Rebif @ 3 times a week. You may consider the Avonex which is once a week.
You really can't make a bad choice like Julie says. I don't have flu-like symptoms - I was reminded of the real flu last yr. I did get headaches, some minor aches and some weakness but found the pre-medicating helped like the nurses suggest and it does wear off like most meds once your body adjusts.
I'll share with you that after my 1st attack simmered I was then dx'd quickly and started the meds soon after. That did make it hard to distinguish between med related side affects and MS symptoms. And though some big ones backed off, daily ones persisted, and I didn't know if I was coming or going.
Since then, I tend to lean toward and advise to take a little time to make a decision if you are dx'd quickly, just not so long that you think you don't have to -- if that makes any sense.
Sorry for the dx, but please ask anything. Don't you go making your brain sore over this decision process - can make you batty.
-shell
Hi huff, welcome back but I hate the reason for your revisit here. A dx is never fun, even though it does finally givey ou some answers.
Julie said it well when she told you to try one and if it doesn't work for you, try another one. All 4 of the DMD's work pretty much the same effective rate - they don't cure our MS but merely slow the relapse rate. It doesn't matter which one you take, as long as you are on something to try to manage this MiSerable disease.
I am also using Copaxone - the non-interferon choice. I thnk that doing daily injects are not any different than if I were diabetic and had to shot insulin every day. We do what we have to do to stay healthy. I didn't pick one of the others, because the flu-like symptoms, depression and regular blood tests didn't sound particularly appealing to me.
If you go to the search box on the page (right side) and type in the name of the drug you want to know more about you will find multiple postings here about avonex, rebif and betaseron too.
On the UK MS website the have a very good DMD decision making tool - you may want to step through their decision guide and see what it comes up with for you.......
I'll look for that address and post it when I find it.
Anway, I'm sorry you are joining the ranks of the dx'd - we're here to answer any quesitons you might think of.
my best,
Lulu
Julie said it well when she told you to try one and if it doesn't work for you, try another one. All 4 of the DMD's work pretty much the same effective rate - they don't cure our MS but merely slow the relapse rate. It doesn't matter which one you take, as long as you are on something to try to manage this MiSerable disease.
I am also using Copaxone - the non-interferon choice. I thnk that doing daily injects are not any different than if I were diabetic and had to shot insulin every day. We do what we have to do to stay healthy. I didn't pick one of the others, because the flu-like symptoms, depression and regular blood tests didn't sound particularly appealing to me.
If you go to the search box on the page (right side) and type in the name of the drug you want to know more about you will find multiple postings here about avonex, rebif and betaseron too.
On the UK MS website the have a very good DMD decision making tool - you may want to step through their decision guide and see what it comes up with for you.......
I'll look for that address and post it when I find it.
Anway, I'm sorry you are joining the ranks of the dx'd - we're here to answer any quesitons you might think of.
my best,
Lulu
Terry, I didn't think it was possible to say thanks once more to you after the 10000s of time I have already, but THANKS lol. I am shocked the DX happened so quick, not sure if that is a good thing or bad thing.
Julie, Thank you also. I thought about doing the every day one if it was something the doctor agreed with. Problem is with my lack of a schedule, never home and never knowing when and how long I can sleep. I'm scared that theres gonna be times I may have to skip one for a day, or it won't be around 24 hours between. Either a lot sooner or a lot later than scheduled to be taken. I did see a lot of flu symptoms with most meds, I have that constantly anyway with allergies and such a bad sinus that I've never been able to smell anything. So not sure if its something I wanna deal with on that basis.
The thing that puzzles me is that I have to have someone come to my house to teach me how to do it and everything. I can't understand why I just can't go to the office of the med supply or whatever it is.
Julie, Thank you also. I thought about doing the every day one if it was something the doctor agreed with. Problem is with my lack of a schedule, never home and never knowing when and how long I can sleep. I'm scared that theres gonna be times I may have to skip one for a day, or it won't be around 24 hours between. Either a lot sooner or a lot later than scheduled to be taken. I did see a lot of flu symptoms with most meds, I have that constantly anyway with allergies and such a bad sinus that I've never been able to smell anything. So not sure if its something I wanna deal with on that basis.
The thing that puzzles me is that I have to have someone come to my house to teach me how to do it and everything. I can't understand why I just can't go to the office of the med supply or whatever it is.
I am so sorry you got this diagnosis. But, it sounds like you were not surprised. It is quite a shock nevertheless.
I was diagnosed back in May and my neurologist took time to explain the 4 main DMD treatments. His nurse sent me home with all the booklets and binders with DVDs to help with my decision, but I pretty much already decided on Copaxone the daily injection. My main reason for taking this DMD over the others was to avoid the flu-like symptoms the Interferons give you. I am too busy with trying to keep working that I couldn't afford the couple of days each month for being sick.
That said, I have friends taking the interferons and they are doing fine on them so really you should think about what would fit in your lifestyle and that you feel you can stick with. It doesn't matter really which one you take as they all accomplish the same goal. Just get on one and remain compliant on it and you'll be fine. IF something doesn't work out with the one you decide on, you can try one of the others.
I hope this is helpful and I hope you can come to a decision over the weekend. I'm sure others here on the forum will be by to offer their suggestions aswell.
Best of luck.
Julie (Sarahsmom)
I was diagnosed back in May and my neurologist took time to explain the 4 main DMD treatments. His nurse sent me home with all the booklets and binders with DVDs to help with my decision, but I pretty much already decided on Copaxone the daily injection. My main reason for taking this DMD over the others was to avoid the flu-like symptoms the Interferons give you. I am too busy with trying to keep working that I couldn't afford the couple of days each month for being sick.
That said, I have friends taking the interferons and they are doing fine on them so really you should think about what would fit in your lifestyle and that you feel you can stick with. It doesn't matter really which one you take as they all accomplish the same goal. Just get on one and remain compliant on it and you'll be fine. IF something doesn't work out with the one you decide on, you can try one of the others.
I hope this is helpful and I hope you can come to a decision over the weekend. I'm sure others here on the forum will be by to offer their suggestions aswell.
Best of luck.
Julie (Sarahsmom)
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