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MS meds - your choice?
Hello everyone,...
I have been diagnosed with ms in mid August this year. I have seen 2 diffferent consultants,... second one yesterday to talk about meds. He was extremely understanading and all we talked about I found very informative,... however when it came to recommending any meds, he said my eposodes and any other symptoms (luckily next to none at the moment) have been so mild that even if I was on b/interferons for the last 2-3 years, in his opinion it would not have made much difference. He said to me it is entirely up to me if I want to take interferons (think he mintioned copaxone) . My dilema is surely if I start interferons it should help in the long run, for example lessen the number and velocity of the episodes,etc...
Slightly confused,.. and grateful for any thoughts anyone may have
Janey1
I have been diagnosed with ms in mid August this year. I have seen 2 diffferent consultants,... second one yesterday to talk about meds. He was extremely understanading and all we talked about I found very informative,... however when it came to recommending any meds, he said my eposodes and any other symptoms (luckily next to none at the moment) have been so mild that even if I was on b/interferons for the last 2-3 years, in his opinion it would not have made much difference. He said to me it is entirely up to me if I want to take interferons (think he mintioned copaxone) . My dilema is surely if I start interferons it should help in the long run, for example lessen the number and velocity of the episodes,etc...
Slightly confused,.. and grateful for any thoughts anyone may have
Janey1
I was dxed with SPMS two years ago and although I decided not to take any meds, the Neuro specializing in MS recommended that I should take Rebif as "it packs a bigger punch" in his words and is more "aggressive". Other than that I have no experience with meds for MS.
Marcie
Marcie
It is very confusing and frustrating at the beginning...what if I choose the wrong drug.. what if I would have done that.. what if I would have listened to the first doc.. what if what if..... thats what I went thru at the beginning.....I wish I had "wonderful words of wisdom" for you both... but I dont....Just dont WHAT IF yourself to death...no one can tell you for certain rebif is the right drug.. or avonex or whatever.......but I do agree that research shows when using a modifying drug it slows the progress down.. thats what i feared the most at the beginnig.. I had 2 kids..and my mom was dying so I needed to be able to help others.. I didnt have time for this MS THING lol...........
Janey...my story is a long one...my email is rox 0818 @ sbcglobal . net (no spaces.. I think this forum deletes email.. not sure......but if you are interested.. email me.. and we can talk......i still have symtpoms of MS.. like last few weeks Ive had left eye pain (which is new), burning to legs.. feet feeling like they were on fire.. extremely tired and thinking was a problem.. i put left over food in cabinets.. messed up bank account etc etc....so i did get IV solumedrol last week and it helped alot.......Dummy me didnt get the films from 1999-2000 and the hosp destroyed the films.. so this doc im seeing doesnt have the mri to look at.. he wont take the reports word.. he wants to see it himself.....the lesion on my spine he said doesnt think it is MS related... so I am having tons of blood work done.. and another spine MRI done to see if anything else is new.. which he is suspecting there is.....he also said that after 2 yrs of being on rebif.. it looses its effectiveness... he also said if I had MS...im very lucky that I dont have more lesions more disabled.. which I KNOW i am lucky.... thats part of the story.. thanks for listening... its frustrating no matter where a person is at being dx...
take cre
Roxanne
Janey...my story is a long one...my email is rox 0818 @ sbcglobal . net (no spaces.. I think this forum deletes email.. not sure......but if you are interested.. email me.. and we can talk......i still have symtpoms of MS.. like last few weeks Ive had left eye pain (which is new), burning to legs.. feet feeling like they were on fire.. extremely tired and thinking was a problem.. i put left over food in cabinets.. messed up bank account etc etc....so i did get IV solumedrol last week and it helped alot.......Dummy me didnt get the films from 1999-2000 and the hosp destroyed the films.. so this doc im seeing doesnt have the mri to look at.. he wont take the reports word.. he wants to see it himself.....the lesion on my spine he said doesnt think it is MS related... so I am having tons of blood work done.. and another spine MRI done to see if anything else is new.. which he is suspecting there is.....he also said that after 2 yrs of being on rebif.. it looses its effectiveness... he also said if I had MS...im very lucky that I dont have more lesions more disabled.. which I KNOW i am lucky.... thats part of the story.. thanks for listening... its frustrating no matter where a person is at being dx...
take cre
Roxanne
I don't know, because it's so hard. . .even when the Dr tells you he/she recommends going on DMT.
I struggled w/the decision to even begin therapy, it was terrible, so I understand (I'm only 3 wks in and still wonder if I've made the right choice sometimes). In the end (since each pharm. company will claim theirs the best) I went w/my Neuro's recommendation. But, I did ALOT of reading on them all (mostly from the net, studies, etc.)
If I remember correctly, there may also be a thread on our forum discussing DMT's and their differences. You may find them if you are interested in digging back a ways.
This surely is a decision you should not have to make on your own, and I wish it were presented differently to you. . .I don't think it would make it any easier, but at least you would not feel it was ALL yours, and that you were taking the Drs advice. . .
I wish I could be of more help - SL
p.s. You may find a "talking to" Quix gave me. . .I needed it, asked for it, and maybe something in there will help too
I struggled w/the decision to even begin therapy, it was terrible, so I understand (I'm only 3 wks in and still wonder if I've made the right choice sometimes). In the end (since each pharm. company will claim theirs the best) I went w/my Neuro's recommendation. But, I did ALOT of reading on them all (mostly from the net, studies, etc.)
If I remember correctly, there may also be a thread on our forum discussing DMT's and their differences. You may find them if you are interested in digging back a ways.
This surely is a decision you should not have to make on your own, and I wish it were presented differently to you. . .I don't think it would make it any easier, but at least you would not feel it was ALL yours, and that you were taking the Drs advice. . .
I wish I could be of more help - SL
p.s. You may find a "talking to" Quix gave me. . .I needed it, asked for it, and maybe something in there will help too
For those of us not on meds, but expecting to go on meds soon . . . how do we decide what is best for us? (I have had less than positive experiences with the neurologist and need to be very informed when faced with these decisions.)
I'm on Rebif. I have all the info on all of them, and prior to starting, I thought Copaxone was the one for me, but in the end I went w/my Dr's recommendation, and so Rebif it is for me.
You'll find it's difficult to compare Rebif and Copaxone side-by-side because Copaxone is not an interferon.
You'll find it's difficult to compare Rebif and Copaxone side-by-side because Copaxone is not an interferon.
Why would you choose Rebif over Copaxone?
It sounds like your docs are very conservative or aren't aware of the benefit of early treatment to keep your disease process as mild as possible. General neuro's can be woefully ignorant of current recommendations in MS, we have found.. :(
I chose Avonex. It's track record is good. It's the lowest dose (so it take s a little longer to begin modifying the disease. It's problem with neurtralizing antibodies is the least, and it's only once a week. The injection is IM (into the muscle). That's what stops most people, but it is not a painful thing to do. My reactions are lightly sore and stiff muscles and I sleep through most of it. The next day I feel a little stiff and sore for the first several hours, then all is okay. I'm not needle-phobic.
In reading, I'm most impressed with Copaxone and Rebif. If I have problems on the Avonex, I would probably choose Rebif, if the problem does not appear to be neutralizing antibody-related.
Good luck, Quix
I chose Avonex. It's track record is good. It's the lowest dose (so it take s a little longer to begin modifying the disease. It's problem with neurtralizing antibodies is the least, and it's only once a week. The injection is IM (into the muscle). That's what stops most people, but it is not a painful thing to do. My reactions are lightly sore and stiff muscles and I sleep through most of it. The next day I feel a little stiff and sore for the first several hours, then all is okay. I'm not needle-phobic.
In reading, I'm most impressed with Copaxone and Rebif. If I have problems on the Avonex, I would probably choose Rebif, if the problem does not appear to be neutralizing antibody-related.
Good luck, Quix
Hi there,
Big thank you for your contribution,...
I have clear lesions on mri (unfortunately) both brain and spine. Neuro did not want to do lp to confirm, she was happy with dx and my first symptms like numbness and some tingling were clear sign of ms. Yes, for now my symptoms have been exremely mild in comparison with other people on the forum. I count myself v lucky. I am having slight problem with my left eye currently, which is getting better and have slight heaviness (sometimes) in right arm. Also, forgot about the occassional tingling,... presume sign of potential permanent damage, unless my body is still working on it. Second neuro said if I was on drugs in the last 2-3 years it would not have made much difference. Maybe he is right, maybe not.
I do not fancy having to make a decision on my own, he suggested I read some info they are sending me and meet up again within 4-5 weeks. Yes my worry is I do not want to get further episodes and obviously this is where meds should help.
Roxie, you had lesions,... how can the docs not be certain it is ms,... gosh. What are your current symptoms? What have you experienced in the last 7 years? Very interested to hear.
Everyone is for drugs,... I really do not understand why my lovely docs are so uncertain,...
Thank you all.
Janey1
Big thank you for your contribution,...
I have clear lesions on mri (unfortunately) both brain and spine. Neuro did not want to do lp to confirm, she was happy with dx and my first symptms like numbness and some tingling were clear sign of ms. Yes, for now my symptoms have been exremely mild in comparison with other people on the forum. I count myself v lucky. I am having slight problem with my left eye currently, which is getting better and have slight heaviness (sometimes) in right arm. Also, forgot about the occassional tingling,... presume sign of potential permanent damage, unless my body is still working on it. Second neuro said if I was on drugs in the last 2-3 years it would not have made much difference. Maybe he is right, maybe not.
I do not fancy having to make a decision on my own, he suggested I read some info they are sending me and meet up again within 4-5 weeks. Yes my worry is I do not want to get further episodes and obviously this is where meds should help.
Roxie, you had lesions,... how can the docs not be certain it is ms,... gosh. What are your current symptoms? What have you experienced in the last 7 years? Very interested to hear.
Everyone is for drugs,... I really do not understand why my lovely docs are so uncertain,...
Thank you all.
Janey1
well....now the new neuro Im seeing isnt for sure if its MS or not... but 7 yrs ago, I was dx with RRMS......now I'm back to square one with dx... I'm not too sure about anything anymore lol so, I am no longer taking rebif....or any shots for now...
I agree with SL... its always a good idea to get second recommendation.. if u are able to....
take care
Roxanne
I agree with SL... its always a good idea to get second recommendation.. if u are able to....
take care
Roxanne
Hi Janey1,
I'm surprised that you were dx'd w/Definite MS and that DMD's were not recommended. It puts you in a bad spot, to not have a recommendation, and have to make the decision yourself. You must feel anxious and worried about making this yourself. Have you gotten a second opinion on your Dx? Sorry if you've already mentioned this on the forum, I'm behind on reading.
A second recommendation, would confirm the dx and afterwhich would include the meds discussion. I'm glad he was thorough w/his explanation, but it's the mention that your symptoms are mild part that confuses me, since the meds are thought to prolong further damage, not just reduce episodes.
SL
I'm surprised that you were dx'd w/Definite MS and that DMD's were not recommended. It puts you in a bad spot, to not have a recommendation, and have to make the decision yourself. You must feel anxious and worried about making this yourself. Have you gotten a second opinion on your Dx? Sorry if you've already mentioned this on the forum, I'm behind on reading.
A second recommendation, would confirm the dx and afterwhich would include the meds discussion. I'm glad he was thorough w/his explanation, but it's the mention that your symptoms are mild part that confuses me, since the meds are thought to prolong further damage, not just reduce episodes.
SL
Thank you both for your replies,...
it means a lot to me. Can I just ask are you both RRMS?
Thank you muchly
Janey1
it means a lot to me. Can I just ask are you both RRMS?
Thank you muchly
Janey1
I have been on all the sq injections... and now on Rebif for last 2 yrs. Of course everyone is different, I for one LOVE the rebif... My MS has been "mild".. which neuro's think its coz I was started on one of the injections at the very beginning 7 yrs ago. I had 2 kids after the dx of MS so I had to stop them in between pregnancy's...but rebif is the least one with side effects FOR ME and so far, no new lesions.
Thats my 2cents! :)
Thats my 2cents! :)
The latest research that I read suggests starting on a platform drug as soon as you're a "possible MS" patient. If you've been diagnosed for sure, I would think that it would be good to start on something.
As for the drugs; I elected to use Copaxone, which is not an intenrferon. Even though it's a daily injection, I decided it was best for me. The reason I decided against interfrons is that sometimes people develop antibodies to them, and then they cease to be effective. Since I seem to be extremely autoimmune, I figured my luck I'd do that.
My doctor mentioned Novantrone, but, besides being a little apprehensive about taking a chemotherapy drug, I understand that there is some risk of developing cardiomyopathy with that. Since I've had one heart attack, I didn't want to take anything that might endanger my heart.
And that's my $0.02 worth!
The Wreck
As for the drugs; I elected to use Copaxone, which is not an intenrferon. Even though it's a daily injection, I decided it was best for me. The reason I decided against interfrons is that sometimes people develop antibodies to them, and then they cease to be effective. Since I seem to be extremely autoimmune, I figured my luck I'd do that.
My doctor mentioned Novantrone, but, besides being a little apprehensive about taking a chemotherapy drug, I understand that there is some risk of developing cardiomyopathy with that. Since I've had one heart attack, I didn't want to take anything that might endanger my heart.
And that's my $0.02 worth!
The Wreck
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