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Introduction & Drug Choice question
Hi all,
I just wanted to introduce myself. I'm a 38 year old woman from Michigan that was just diagnosed in the last several weeks. Two months ago I ended up in the hospital due to severe double vision. While in the hospital for 5 days, the neurologists said I had MS, and this was eventually confirmed since then. Some of my test results were also giving indications of lupus, but after all results were in, MS was the final dx.
I also have well-controlled epilepsy, and the drugs I take for that cause depression.
At this point I'm trying to decide on a course of treatment. My doctor has told me to choose between Avonex, Betaseron, Copaxone and Rebif, and she has given me almost no direction.
My question is: How do I go about choosing a drug?
I'm leaning toward Copaxone since the others have side effects of depression and seizures. I don't mind needles, so it wouldn't be a problem with me taking daily shots. But aside from that, I don't have any other factors to go on.
Does anyone have advice on how I should make a decision?
I'm glad to be here and I welcome any advice!
Jean
MS dx March 2010
Epi dx 1995
I just wanted to introduce myself. I'm a 38 year old woman from Michigan that was just diagnosed in the last several weeks. Two months ago I ended up in the hospital due to severe double vision. While in the hospital for 5 days, the neurologists said I had MS, and this was eventually confirmed since then. Some of my test results were also giving indications of lupus, but after all results were in, MS was the final dx.
I also have well-controlled epilepsy, and the drugs I take for that cause depression.
At this point I'm trying to decide on a course of treatment. My doctor has told me to choose between Avonex, Betaseron, Copaxone and Rebif, and she has given me almost no direction.
My question is: How do I go about choosing a drug?
I'm leaning toward Copaxone since the others have side effects of depression and seizures. I don't mind needles, so it wouldn't be a problem with me taking daily shots. But aside from that, I don't have any other factors to go on.
Does anyone have advice on how I should make a decision?
I'm glad to be here and I welcome any advice!
Jean
MS dx March 2010
Epi dx 1995
Hi there,
Adding on a belated welcome. You've received such good info - I just wanted to say hello and thank you for joining us.
I'm on Rebif. Your spot on w/your thoughts on avoiding anything that could possibly cause depression considering your current meds do that already. Though it doesn't happen to all, why take the chance especially considering you don't mind injections.
I've found that dosing is an important factor, so if you are the type that would do it everyday faithful Copax is a strong contender. For me, the 3 a week is very tolerable as are the side affects (hardly any after the 1st couple months) and needles (very thin).
Regardless of your choice, you can always switch after you've given any of them a go. I struggled to w/the options too, instead of thinking, hey - if I can't tolerate it I can move on to another!
Anwho, now I'm rambling. Just glad you found us and hope you enjoy being here.
-Shell
Adding on a belated welcome. You've received such good info - I just wanted to say hello and thank you for joining us.
I'm on Rebif. Your spot on w/your thoughts on avoiding anything that could possibly cause depression considering your current meds do that already. Though it doesn't happen to all, why take the chance especially considering you don't mind injections.
I've found that dosing is an important factor, so if you are the type that would do it everyday faithful Copax is a strong contender. For me, the 3 a week is very tolerable as are the side affects (hardly any after the 1st couple months) and needles (very thin).
Regardless of your choice, you can always switch after you've given any of them a go. I struggled to w/the options too, instead of thinking, hey - if I can't tolerate it I can move on to another!
Anwho, now I'm rambling. Just glad you found us and hope you enjoy being here.
-Shell
Jean,
the most important part of almost everyone's message here is that your best chance for delaying the progression of this disease or avoiding the permanent disabilities, comes from being proactive with your health and that includes picking a DMD and taking it regularly.
It is a big gamble that our MS will remain quiet and do no harm and decide to not take a DMD. For most of us, that just isn't an option.
be well, Lu
the most important part of almost everyone's message here is that your best chance for delaying the progression of this disease or avoiding the permanent disabilities, comes from being proactive with your health and that includes picking a DMD and taking it regularly.
It is a big gamble that our MS will remain quiet and do no harm and decide to not take a DMD. For most of us, that just isn't an option.
be well, Lu
hi Jean--
I've been on Rebif since Sept 2009. Never had any side efx at all;
I also have history of depression, but no effects from Rebif there either.
I
will say that I have stayed on the 22 mcg dose, not the 44 "full" dose. I've had no relapses since starting Rebif.
My neuro gave me huge books on each of the meds -- they were, of course, provided by the drug manufacturers, but were very informative.
Decided on Rebif because I'm very slender, almost NO fat -- and all the drugs except Avonex are injected into the fatty tissue -- Rebif is less frequent injections than Copaxone, and given my limited fat, would have the least chance of tissue necrosis at injection sites.
My neuro did say that with Copax, the most frequent reason his patients drop it or change to a different med (he says over 1/3 of his patients drop Copax) is injection site tissue damage/ tissue death -- which can be serious. With daily injections that problem is far more common than with 3x per week shots.
Just remember: it's not unusual to try a med, and then change to a different one. The path to finding the right one for you -- limited side efx, with maximum effectiveness-- can take a little time, but don't give up!
I've been on Rebif since Sept 2009. Never had any side efx at all;
I also have history of depression, but no effects from Rebif there either.
I
will say that I have stayed on the 22 mcg dose, not the 44 "full" dose. I've had no relapses since starting Rebif.
My neuro gave me huge books on each of the meds -- they were, of course, provided by the drug manufacturers, but were very informative.
Decided on Rebif because I'm very slender, almost NO fat -- and all the drugs except Avonex are injected into the fatty tissue -- Rebif is less frequent injections than Copaxone, and given my limited fat, would have the least chance of tissue necrosis at injection sites.
My neuro did say that with Copax, the most frequent reason his patients drop it or change to a different med (he says over 1/3 of his patients drop Copax) is injection site tissue damage/ tissue death -- which can be serious. With daily injections that problem is far more common than with 3x per week shots.
Just remember: it's not unusual to try a med, and then change to a different one. The path to finding the right one for you -- limited side efx, with maximum effectiveness-- can take a little time, but don't give up!
Thank you all for your insight. I feel so much more in control now that I have some places to get answers and not just "guess" about which drug I should take.
As far as getting a fast diagnosis -- I am blessed with that. I think I've actually had it for years (my MS doc said at least 5) -- but it was not really 'jumping out" as a problem because my MRIs were already showing lesions from the epi, and my fatigue was blamed on the epi drugs.
I talked to my epi neurologist about 6 months ago and told her I was feeling slow -- mentally slow and not as "snappy" in my thinking as I used to be. She just said I was just getting older. Hah! Ok, yes, I agree. I'm getting older. But at least I know that it isn't all about me getting older and it is in part because of the MS.
At any rate, after I was given the tentative diagnosis, I then read the symptoms of MS on the NMSS website. I had 12 of the 20 symptoms over the last 10 years or so. So at that point everything kind of clicked in my mind.
Luckily the double vision was the first significant event--wherein I couldn't function normally. So hopefully I'm still getting in early on the treatment. I know I have several lesions in my brain, but I don't know how many. Hopefully the drugs will stop any more forming or the existing ones from getting bigger.
Well, I'm just rambling now, so I will close this post.
Take care all,
Jean
As far as getting a fast diagnosis -- I am blessed with that. I think I've actually had it for years (my MS doc said at least 5) -- but it was not really 'jumping out" as a problem because my MRIs were already showing lesions from the epi, and my fatigue was blamed on the epi drugs.
I talked to my epi neurologist about 6 months ago and told her I was feeling slow -- mentally slow and not as "snappy" in my thinking as I used to be. She just said I was just getting older. Hah! Ok, yes, I agree. I'm getting older. But at least I know that it isn't all about me getting older and it is in part because of the MS.
At any rate, after I was given the tentative diagnosis, I then read the symptoms of MS on the NMSS website. I had 12 of the 20 symptoms over the last 10 years or so. So at that point everything kind of clicked in my mind.
Luckily the double vision was the first significant event--wherein I couldn't function normally. So hopefully I'm still getting in early on the treatment. I know I have several lesions in my brain, but I don't know how many. Hopefully the drugs will stop any more forming or the existing ones from getting bigger.
Well, I'm just rambling now, so I will close this post.
Take care all,
Jean
Hi Jean!
I live in MI also :)
I've been on Copaxone for about 6 months now. I chose it because I work full-time and I didn't want to have to deal with the side effects the other drugs can have (flu-like symptoms, having to monitor organ functions, etc.)
Copaxone takes some getting used to for the body. I had phases of itchiness and welts but that has all calmed down now and it's smooth sailing.
Good luck choosing! Have you checked your prescription formulary for your health plan to see what meds are covered? If Copaxone isn't one of the covered ones, you can apply to NORD which is an assistance program.
I live in MI also :)
I've been on Copaxone for about 6 months now. I chose it because I work full-time and I didn't want to have to deal with the side effects the other drugs can have (flu-like symptoms, having to monitor organ functions, etc.)
Copaxone takes some getting used to for the body. I had phases of itchiness and welts but that has all calmed down now and it's smooth sailing.
Good luck choosing! Have you checked your prescription formulary for your health plan to see what meds are covered? If Copaxone isn't one of the covered ones, you can apply to NORD which is an assistance program.
Sorry to hear of your dx and so glad you found us. I just wanted to add my welcome.
As for a DMD, it is YOUR choice. I chose Copaxone even though it's a once daily injection. I have had few side effects: those being bruises and bumps left from injections and the "bee sting " felt after the injection , which in all honesty is a hornet's nest when the shots are done on the thigh. Otherwise , it is relatively painless and no other side effects have been experienced. Still it's your decision and take your time making this decision. A week or two one way or another will not change things.
Again, welcome! Don't be hesitant about asking questions even if you"think they're silly or stupid" This is uncharted territory for you as it was for each of us at one time. We're here for any questions, sharing or venting.
Ren
As for a DMD, it is YOUR choice. I chose Copaxone even though it's a once daily injection. I have had few side effects: those being bruises and bumps left from injections and the "bee sting " felt after the injection , which in all honesty is a hornet's nest when the shots are done on the thigh. Otherwise , it is relatively painless and no other side effects have been experienced. Still it's your decision and take your time making this decision. A week or two one way or another will not change things.
Again, welcome! Don't be hesitant about asking questions even if you"think they're silly or stupid" This is uncharted territory for you as it was for each of us at one time. We're here for any questions, sharing or venting.
Ren
hi, i'm sure you are realizing this as you spend time here, but a big congrats is in order..you got a diagnosis fast and that's wonderful!!! limboland sux; you're at a great advantage being able to slow the progression from here on out
welcome to the community and much love to you, dear =]
welcome to the community and much love to you, dear =]
COMMUNITY LEADER
Hi and welcome to our little corner of the web, it is a great place for friendship, information, understanding, fun times and hugs when things are rough. :-)
You sure have a dilemma, epilepsy and MS are not so uncommon that there wouldnt be an already established preference, one that doesnt interfere with your epilepsy drugs. If you cant find enough information on the site Mary gave you, i'd contact your MS society and ask for any information they have, they might have something helpful.
Other wise there maybe a few members who have already been in your shoes and will chime in, if and when they can.
Cheers......JJ
You sure have a dilemma, epilepsy and MS are not so uncommon that there wouldnt be an already established preference, one that doesnt interfere with your epilepsy drugs. If you cant find enough information on the site Mary gave you, i'd contact your MS society and ask for any information they have, they might have something helpful.
Other wise there maybe a few members who have already been in your shoes and will chime in, if and when they can.
Cheers......JJ
This forum is totally awesome! You were totally right, Meg.
I'm so glad I'm here. Thanks so much to those of you that have helped me so much already. Know that you have made my day!
Jean
I'm so glad I'm here. Thanks so much to those of you that have helped me so much already. Know that you have made my day!
Jean
Hi Jean, welcome to the forum...I found you !!
My MS specialist chose copaxone for me, not sure but I think it is the easiest to use also.
Some can chip in here and possibly add to that, i can't find the correct words..I am having a somewhat worse morning than usual...lol
I told you that this is the greatest forum that exists..or did I say that?...well, its true !
hugs, meg
My MS specialist chose copaxone for me, not sure but I think it is the easiest to use also.
Some can chip in here and possibly add to that, i can't find the correct words..I am having a somewhat worse morning than usual...lol
I told you that this is the greatest forum that exists..or did I say that?...well, its true !
hugs, meg
Welcome. A doctor gave a talk to the SM Society last week and he said they are all equally affective. It just depends on which fits you the best. I did Copaxone and had no issues. I chose it because I am predisposed to depression.
Good luck let us know how it goes.
Alex
Good luck let us know how it goes.
Alex
Hi and Welcome....I too am fairly new dx on Jan 20th.
I have decided on LDN low dose naltrexone. It is an FDA approved drug used off label for many autoimmume diseases. It virtually has little to no side effects. You can read more about it at www.losedosenaltrexone.org The site is written by a neurologist.
Here is another site written by a medical Doctor who has MS himself.
http://www.msrc.co.uk/index.cfm/fuseaction/show/pageid/650
I know I am in the minority. As most people do choose a DMD....but my reasearch on the DMD's and their side effects versus the percentage of reduction in the disease process was not enough to convince me to use such a strong medication. Not to mention that recent reasearch has shown that only some 'MS case' actually responds at all to DMD.
Just my opinion. I do wish you the best as I know how hard these next few months are going to be for you. Please stick around and ask as many questions as you may have.
I have decided on LDN low dose naltrexone. It is an FDA approved drug used off label for many autoimmume diseases. It virtually has little to no side effects. You can read more about it at www.losedosenaltrexone.org The site is written by a neurologist.
Here is another site written by a medical Doctor who has MS himself.
http://www.msrc.co.uk/index.cfm/fuseaction/show/pageid/650
I know I am in the minority. As most people do choose a DMD....but my reasearch on the DMD's and their side effects versus the percentage of reduction in the disease process was not enough to convince me to use such a strong medication. Not to mention that recent reasearch has shown that only some 'MS case' actually responds at all to DMD.
Just my opinion. I do wish you the best as I know how hard these next few months are going to be for you. Please stick around and ask as many questions as you may have.
Welcome to the MS forum. Sorry about your diagnosis.
As for me, my neurologist didn't give me any choice. She just told me Copaxone is what I was to take. Perhaps my past history of Post-partum depression was a factor?
I dont know,but good luck on whatever you choose.
Michelle
As for me, my neurologist didn't give me any choice. She just told me Copaxone is what I was to take. Perhaps my past history of Post-partum depression was a factor?
I dont know,but good luck on whatever you choose.
Michelle
I took a break to shower and see that you have now been properly welcomed. Let me add my hellos.
Picking your treatment is often difficult and they almost always seem to leave it up to the patient to make the final choice. Why? Probably because they are all proven to be about the same in effectiveness in slowing the progression.. These drugs don't stop the MS, but slow the rate of relapse down significantly, according to their studies.
Mary gave you my favorite link for people new to the world of MS drugs - the decision maker in the UK walks you through the choices, what is important to you, and helps you compare all the CRABs (copaxone, rebif, avonex and betaseron) side-by-side.
Welcome again to the forum here - when you have questions, feel free to ask.
my best, Lulu
Picking your treatment is often difficult and they almost always seem to leave it up to the patient to make the final choice. Why? Probably because they are all proven to be about the same in effectiveness in slowing the progression.. These drugs don't stop the MS, but slow the rate of relapse down significantly, according to their studies.
Mary gave you my favorite link for people new to the world of MS drugs - the decision maker in the UK walks you through the choices, what is important to you, and helps you compare all the CRABs (copaxone, rebif, avonex and betaseron) side-by-side.
Welcome again to the forum here - when you have questions, feel free to ask.
my best, Lulu
That should read COPY and paste. I can't seem to stick with a thought as long as it sticks with me lately.
http://www.msdecisions.org.uk/
http://www.msdecisions.org.uk/
Hi Jean and welcome. Sorry you had to join us but it's good you have the diagnosis and can get to work on treatment and control. Too many people have to linger in the diagnostic limboland.
Only a fraction of people actually experience the many listed side effects of a given drug. Of course, if you are one of those people your life can get miserable for a while. So potential side effects do influence what drug is chosen, especially when you have preexisting conditions.
Personally, the depression isn't something I would want to tinker with unless I had tried other choices first. It's just sometimes too hard to get back to balance. IMO
Lulu has linked a site that helps take you through the desision process to choose a DMD. It's a UK site. I found it informative and the questionnaire format usually peeks my attention. Cut and paste to get there. http://www.msdecisions.org.uk/
I started Copaxone about two months ago. I think we do have more members taking Copaxone than the other drugs but maybe we're just more 'vocal'.
Again, welcome and please join us often.
Mary
Only a fraction of people actually experience the many listed side effects of a given drug. Of course, if you are one of those people your life can get miserable for a while. So potential side effects do influence what drug is chosen, especially when you have preexisting conditions.
Personally, the depression isn't something I would want to tinker with unless I had tried other choices first. It's just sometimes too hard to get back to balance. IMO
Lulu has linked a site that helps take you through the desision process to choose a DMD. It's a UK site. I found it informative and the questionnaire format usually peeks my attention. Cut and paste to get there. http://www.msdecisions.org.uk/
I started Copaxone about two months ago. I think we do have more members taking Copaxone than the other drugs but maybe we're just more 'vocal'.
Again, welcome and please join us often.
Mary
Hi Jean
I was also dxed recently on 25 March and I am aged 47 and live in England. My dx has still not sunk in properly and I think it takes time to absorb it all. I am still finding out about treatment and currently considering a drug trial for an oral tablet that my Consultant has suggested i think about (I live in England).
I am also still considering interferon treatment and suggest that you use the "search this community" search engine on top right hand side of this forum and maybe put in "interferon treatment".
There are many experts on this site who can give you their own personal experiences but you will find lots to read from search engine and also look on health pages.
Take your time as it is your choice and if you do not mind needles then at least that is one worry off your mind (I hate them!)
My impression is that many people on this forum seem to favour and use copaxone but the only thing I would say is that what works for one person may not be right for another and you will only know when you try a treatment.
Best wishes
Sarah
I was also dxed recently on 25 March and I am aged 47 and live in England. My dx has still not sunk in properly and I think it takes time to absorb it all. I am still finding out about treatment and currently considering a drug trial for an oral tablet that my Consultant has suggested i think about (I live in England).
I am also still considering interferon treatment and suggest that you use the "search this community" search engine on top right hand side of this forum and maybe put in "interferon treatment".
There are many experts on this site who can give you their own personal experiences but you will find lots to read from search engine and also look on health pages.
Take your time as it is your choice and if you do not mind needles then at least that is one worry off your mind (I hate them!)
My impression is that many people on this forum seem to favour and use copaxone but the only thing I would say is that what works for one person may not be right for another and you will only know when you try a treatment.
Best wishes
Sarah
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