Aa
Which dmd?
Hi all, I have been on Rebif for about 18 months now and it makes me constantly feel like ****, sorry for the expression! What I mean is I just never feel normal. I came off it for 2 months in Jan to try for a baby, I have never felt so great, I had a relapse after 6 wks so my neuro said trying for another child was a bad idea for me and my family, so I went back on the Rebif. I was just thinking should I try another dmd to see if it makes me feel better or are they all gonna be the same?
I would appreciate any input
Thanks
Sam
I would appreciate any input
Thanks
Sam
Hi StudentPharmacist,
There are just a few people here on Gilenya (fingolimod). Although it has the benefit of being oral and not an injection, there are several down sides to this treatment, including the suppressed immune system. It may sound like a great choice, but the verdict is still out on the long term use for MS in most of our minds. Many neurologists are not moving their patients to Gilenya if their injectable DMD is working.
I hope you'll come around and learn more about MS and treatment. We can all use more informed pharmacists.
be well, Lulu
There are just a few people here on Gilenya (fingolimod). Although it has the benefit of being oral and not an injection, there are several down sides to this treatment, including the suppressed immune system. It may sound like a great choice, but the verdict is still out on the long term use for MS in most of our minds. Many neurologists are not moving their patients to Gilenya if their injectable DMD is working.
I hope you'll come around and learn more about MS and treatment. We can all use more informed pharmacists.
be well, Lulu
Hi Jeannie and StudentPharm, you may not realize that this is a very old post from 2008. I hope you will take the time to start a new discussion and introduce yourself. Most people won't stop to read these old threads.
welcome,
Lulu
welcome,
Lulu
Has anyone tried Fingolimod? It's better if you're afraid of/dislike needles because it is an oral formulation.
As for injection pains, you can try bringing the med to room temperature or ice the injection site prior to injection. Ask your doctor if you can start at 1/4 or 1/2 the dose for the first 2 weeks, then slowly increase to the full dose. That may help with the "flu-like symptoms."
As for injection pains, you can try bringing the med to room temperature or ice the injection site prior to injection. Ask your doctor if you can start at 1/4 or 1/2 the dose for the first 2 weeks, then slowly increase to the full dose. That may help with the "flu-like symptoms."
Hey Sam!
I am new here...Just started Rebif this week because my MS has gotten far worse, but I will tell you that I was on Copaxone for 2 years and NEVER had any nasty side effects from it. NOTHING :) If you don't mind the daily injections...that is your best bet honey! GOOD LUCK!!!
Oh Just to add...I had been off of MS meds altogether for a year before my MS started getting really out of control again due to losing my insurance and moving, so it wasn't WHILE I was on the Copaxone...(didn't want you to think that I was getting worse while taking it) :)
~Jeannie~
I am new here...Just started Rebif this week because my MS has gotten far worse, but I will tell you that I was on Copaxone for 2 years and NEVER had any nasty side effects from it. NOTHING :) If you don't mind the daily injections...that is your best bet honey! GOOD LUCK!!!
Oh Just to add...I had been off of MS meds altogether for a year before my MS started getting really out of control again due to losing my insurance and moving, so it wasn't WHILE I was on the Copaxone...(didn't want you to think that I was getting worse while taking it) :)
~Jeannie~
Hey Sam,
I've wondered how you made out from time to time. How the switch went, etc. Bet that brief time off of the DMDs was wonderful. I'm still not on any at this point, and was able to figure out during that time what was MS related and Rebif related.
Would love to hear your thoughts on if this was the case for you as well.
Jennio, glad the Copax is going well for you too...
-Shell
I've wondered how you made out from time to time. How the switch went, etc. Bet that brief time off of the DMDs was wonderful. I'm still not on any at this point, and was able to figure out during that time what was MS related and Rebif related.
Would love to hear your thoughts on if this was the case for you as well.
Jennio, glad the Copax is going well for you too...
-Shell
I just wrote a long post and then jumped to another page to look at something and the post disappeared. I"ll try to rewrite...... I've been on copaxone just over a month too. Important to find the right depth to avoid that pain you are talking about. I'm still working through it - depth is different based on the location, amount or absence of fat, etc. I get a bee-sting-like spot for a couple of days after the injection but it goes away. They just sent me a gel pack to heat up and then put on the site for 5 minutes before injection - I will try that today for the first time. I'm a little concerned that I feel as if I am still progressing with the MS - have more dizziness, forgetfulness, fatigue - but I read somewhere that it can take several months for it to start working, which is why it is so important to get going on it asap.
well, that's most of what I wrote earlier - can't remember the rest, but I am glad you switched to copaxone if it is a better fit for you, and of course I hope it does keep you from progressing in the MS.
Peace -
Jennie, dxd 8/4/08,copaxone
well, that's most of what I wrote earlier - can't remember the rest, but I am glad you switched to copaxone if it is a better fit for you, and of course I hope it does keep you from progressing in the MS.
Peace -
Jennie, dxd 8/4/08,copaxone
I have been on the Copaxone for just over a month now and I feel so much better. I never forget to do my injections like I sometimes did with the rebif, the pain just after injection really hurts for me but I would rather have that for 10 mins than the flu 24/7.
The only side effect I get is the pain, but I have realized that if I make little adjustments to how I inject, like different angles, or slighty higher or lower in certain areas, then it doesnt hurt so much.
I think I would recommend Copaxone over rebif, I know that everone has different side effects but I think anyone having problems with their dmd should try another one if its possible to do so.
Happier than I have been for a while
Sam xx
The only side effect I get is the pain, but I have realized that if I make little adjustments to how I inject, like different angles, or slighty higher or lower in certain areas, then it doesnt hurt so much.
I think I would recommend Copaxone over rebif, I know that everone has different side effects but I think anyone having problems with their dmd should try another one if its possible to do so.
Happier than I have been for a while
Sam xx
I reread my coment and it sounds brash to sound the least... when I was going through my year of flu symptoms my youngest was 5. (He turned 11 yesterday on Canada day) Different stages of life leads to different ways that we weigh out this personal choice of what DMD.
This site has made me able to instead of just focusing on my deficits ... of what I used to have.... see how how much I have that others do not.... Like a diagnosis... Sam I hope Copaxone is way better.. I never dared go on it for my fear of needles... Sorry for sounding hollier than thou... cause I am not..
Erin
This site has made me able to instead of just focusing on my deficits ... of what I used to have.... see how how much I have that others do not.... Like a diagnosis... Sam I hope Copaxone is way better.. I never dared go on it for my fear of needles... Sorry for sounding hollier than thou... cause I am not..
Erin
I've been on Copaxone for five and half months. I'm getting used to the injections every day. After starting the shots, do know that they get better. You will love the fact that it doesn't cause you to feel ill. Also, keep in mind that more than likely injections will be a thing of the past. I hear that oral medicines, with more efficacy, are right around the corner.
Deb
Deb
I stopped the Rebif about 2 weeks ago, its great I dont feel ill and I'm alot less moody. I'm hoping I feel better on the copaxone, not too bothered about daily injection.
To all of you that dont like needles, In honesty I dont think it gets any better, but if it changes our quality of life its a good thing right?
All the best to everyone x
Sam
To all of you that dont like needles, In honesty I dont think it gets any better, but if it changes our quality of life its a good thing right?
All the best to everyone x
Sam
When I was first DXed they refered to them as the ABC drugs because they were Avonex Betaaserum and Copapaxoaanne my speeling is terrible.
My Doctor explained it to me that while there was no cure for MS at this time that these drugs were our best bet in slowing the diseeases dissability. That it wasn't a question of weather I was going to someday be dissabled but a question of how disabled I was going to be by the time I died. I am scared to death of needles so first I weighed out how many times a week I had to stick a needle in my skin. THe First Drug I chose I only had to take once a week but the needle was bigger and it was inter muscular so it was more painful.
The next one was a smaller nedle same drug same side effects, I had to weigh out giving up 3 days a week to chills and body aches while I had small children but the percentage of dissability was 40% less dissability over the course of my lifetime.
This is a scary personal choice but thank god we have it... people who havent gotten thier diagnisis don't get the choice of which DMD.
I had a nieghbor who had MS years ago when I was in JR high. Her nurse used to push her in a wheel chair around the block.
Hugs Sam
Erin
My Doctor explained it to me that while there was no cure for MS at this time that these drugs were our best bet in slowing the diseeases dissability. That it wasn't a question of weather I was going to someday be dissabled but a question of how disabled I was going to be by the time I died. I am scared to death of needles so first I weighed out how many times a week I had to stick a needle in my skin. THe First Drug I chose I only had to take once a week but the needle was bigger and it was inter muscular so it was more painful.
The next one was a smaller nedle same drug same side effects, I had to weigh out giving up 3 days a week to chills and body aches while I had small children but the percentage of dissability was 40% less dissability over the course of my lifetime.
This is a scary personal choice but thank god we have it... people who havent gotten thier diagnisis don't get the choice of which DMD.
I had a nieghbor who had MS years ago when I was in JR high. Her nurse used to push her in a wheel chair around the block.
Hugs Sam
Erin
Hey I guess I am the "oddball" taking Betaserum :) I actually don't mind it of course the needle part isn't fun but for the most part taking Tylenol an hour before my needle and when I wake up ( which sometimes is around 3:30am for work lol ) and once at work it actually isn't so bad you have to gradually move up in .25 last night was my last night taking .75 as of Friday I am up to the full dose of 1.0 I have been blessed with the side effects just minor flu like syptoms and a couple headaches nothing major I was really scared the injection sites would have red circles but nothing but bruises lol I have to go for blood work every month to keep an eye on everything as this medicine attacks your liver so I stay clear of all alcohol as I don't need any more "issues" lol...hope this help good luck starting your new medicine!!!
I just started the paperwork to get going on Copaxone. What I've read in this forum has helped me decide, but of course I also studied the kit, watched the movie, talked to people, and googled... I can feel more symptoms now than when I was diagnosed on MOnday - that scares me and I am anxious to get going with the copaxone. Wish me luck!
Jennie
Jennie
Copaxone is best if you're diagnosed with MS early, and your symptoms don't involve either disability or cognitive impairment.
I'm on Copaxone right now, but considering a change because of how my disease is progressing. I may need to be on an interferon.
Did I mention I hate needles? ;-)
I'm on Copaxone right now, but considering a change because of how my disease is progressing. I may need to be on an interferon.
Did I mention I hate needles? ;-)
I was on Avonex from 2003- 2004 ... I had a Relapse that landed me back in the hospital and I had to relearn to walk Again.
The Avonex was the same drug but deep muscle shots long needle and once a week.
My doctor told me that he was switching me to Rebif which was the same drug different dosage different (subQ not as deep)
The Flu symptoms did subside. They lasted maybe 6 months with Avonex. They lasted maybe 3 months with Rebif. THey told me that they would have lasted longer had I not been on Avonex first.
Rebif is 3 times a week in the fat of your stomach butt thigh or arm.
Avoex is a longer needle in the muscle once a week of your thigh or butt
Both caused me injection site redness and lumps. Both drugs offer a nurse that will come to your house and teach you how to use the drug.
I went off of Rebif many times many many many many. I never had the flu symptoms after the first year. Nyquil helps. So does Tylenol before you take your shot.
I am scared to go on Tysabi cause of the possible deadly brain infection.
The Avonex was the same drug but deep muscle shots long needle and once a week.
My doctor told me that he was switching me to Rebif which was the same drug different dosage different (subQ not as deep)
The Flu symptoms did subside. They lasted maybe 6 months with Avonex. They lasted maybe 3 months with Rebif. THey told me that they would have lasted longer had I not been on Avonex first.
Rebif is 3 times a week in the fat of your stomach butt thigh or arm.
Avoex is a longer needle in the muscle once a week of your thigh or butt
Both caused me injection site redness and lumps. Both drugs offer a nurse that will come to your house and teach you how to use the drug.
I went off of Rebif many times many many many many. I never had the flu symptoms after the first year. Nyquil helps. So does Tylenol before you take your shot.
I am scared to go on Tysabi cause of the possible deadly brain infection.
Hey Sam!
Nice to see you back! I wish you all the best w/the Copaxone.
Keep us posted! Have you already stopped the Rebif? Are you feeling a bit better? Hope so.
See you around,
Shelly
Nice to see you back! I wish you all the best w/the Copaxone.
Keep us posted! Have you already stopped the Rebif? Are you feeling a bit better? Hope so.
See you around,
Shelly
I have been to see my neuro and hes gonna let me try Copaxone, I just have to wait for a month to get the Rebif out of my system. The neuro said if this doesnt help then we might start looking at tysabri. I'm kinda up for anything that helps.
Sam x
Sam x
Hi
Thank you all for your comments, I am going to see my neuro in a couple of weeks and I'm definately gonna ask if I can swap I just wanna feel kinda normal again. I cant just carry on feeling like this, I'm 23 and have a life. x
Sam
Thank you all for your comments, I am going to see my neuro in a couple of weeks and I'm definately gonna ask if I can swap I just wanna feel kinda normal again. I cant just carry on feeling like this, I'm 23 and have a life. x
Sam
Hi, again! I'm sorry you have been so misrerable on Rebif. To answer your question there are possibly two meds that might work and this is why.
Three of the DMDs are Interferon-beta meds.
Avonex and Rebif are Interferon-beta-1a. The difference is in their dosage, their frequency of administration and the route of administration.
Avonex is 33mcg given once weekly into the muscle. It has the lowest frequency of
side effects and of developing neutralizing antibodies.
Rebif is 44mcg given three times a week subcutaneously. It has a higher frequency
of side effects and antibodies. This is due to the dose.
Betaseron is Interferon-beta-1b. I forget the dosage but it is given SQ every other day. It
has the highest frequency of the side effects and antibodies.
Copaxone is not an Interferon. It is given daily SQ. It has the lowest incidence of side effects and does not make neutralizing antibodies. Flu-like side effects are rare, but injection sites reactions are more common, usually tolerable. There is also an occasional immediate reaction of chest tightness, shortness of breath, and often anxiety, that passes with about 15 minutes. Only about 13% of people get this once or multiple times.
I would say that Copaxone is your best alternative. But, it is quites possible that Avonex would also be okay for you. Avonex is a far lower dose per week, and since you have already acheived the immune response with the Rebif would kick in quickly. But, if you are very sensitive to the side effects of the Rebif, you might have them also with the Avonex.
Now this is based on what I have read and NOT on experience. I am actually pretty ignorant of how these meds react in different people. But, these are my thought anyway.
Quix
Three of the DMDs are Interferon-beta meds.
Avonex and Rebif are Interferon-beta-1a. The difference is in their dosage, their frequency of administration and the route of administration.
Avonex is 33mcg given once weekly into the muscle. It has the lowest frequency of
side effects and of developing neutralizing antibodies.
Rebif is 44mcg given three times a week subcutaneously. It has a higher frequency
of side effects and antibodies. This is due to the dose.
Betaseron is Interferon-beta-1b. I forget the dosage but it is given SQ every other day. It
has the highest frequency of the side effects and antibodies.
Copaxone is not an Interferon. It is given daily SQ. It has the lowest incidence of side effects and does not make neutralizing antibodies. Flu-like side effects are rare, but injection sites reactions are more common, usually tolerable. There is also an occasional immediate reaction of chest tightness, shortness of breath, and often anxiety, that passes with about 15 minutes. Only about 13% of people get this once or multiple times.
I would say that Copaxone is your best alternative. But, it is quites possible that Avonex would also be okay for you. Avonex is a far lower dose per week, and since you have already acheived the immune response with the Rebif would kick in quickly. But, if you are very sensitive to the side effects of the Rebif, you might have them also with the Avonex.
Now this is based on what I have read and NOT on experience. I am actually pretty ignorant of how these meds react in different people. But, these are my thought anyway.
Quix
Hi,
I totally understand....I have only been on Rebif since March and have felt the same way since I started it. I was diagnosed and my neuro immediately put me on it. "Flu like symptoms" sounds so mild doesn't it? LOL!
Like you, I always feel like ****. Persistent nausea...headaches....I get the fever/chills thing, and then sometimes get what my family refers to as the "malaria chills" - involves your whole body....really strong shaking. Very impressive.... :)
It's probably going to be all kind of moot for me soon though - at the beginning of this month when I saw my neuro he said it's just not working. The parade of new, old, and worsening things just keeps on coming...:) It's been 10 months since it all started with no relapse to speak of. He said it's time to look at Tysabri. Talk about a shock!
I guess we're in the minority - my neuro said most people don't have all these problems with Rebif. BTW, how has your experience with the Rebif people been? I have been underwhelmed...:)
Have a good one,
Rita
I totally understand....I have only been on Rebif since March and have felt the same way since I started it. I was diagnosed and my neuro immediately put me on it. "Flu like symptoms" sounds so mild doesn't it? LOL!
Like you, I always feel like ****. Persistent nausea...headaches....I get the fever/chills thing, and then sometimes get what my family refers to as the "malaria chills" - involves your whole body....really strong shaking. Very impressive.... :)
It's probably going to be all kind of moot for me soon though - at the beginning of this month when I saw my neuro he said it's just not working. The parade of new, old, and worsening things just keeps on coming...:) It's been 10 months since it all started with no relapse to speak of. He said it's time to look at Tysabri. Talk about a shock!
I guess we're in the minority - my neuro said most people don't have all these problems with Rebif. BTW, how has your experience with the Rebif people been? I have been underwhelmed...:)
Have a good one,
Rita
Hi Sam,
Well, I'm just not sure. I'll tell you, I went on Rebif not long after being dx'd and I'm off of it now for a short time (for other reasons), and I'm curious to see how I feel after I restart.
For me, I could not tell the difference between MS feeling like ****, or Rebif feeling like ****. I really did not have enough time w/MS to know the difference.
Now that I've had this gap in time, I feel I will know the difference too.
What was your timeframe between dx and starting meds? Also, even though you don't feel well on an interferon, Avonex is a lower dose of the same interferon as Rebif, and administered differently, so my guess is "you never know." Copaxone is a different med altogether with different side affects.
I'm so sorry you had this relapse especially when you were feeling so well. How long did it last? What during it?
Thank you for coming our way, look forward to chatting,
Shelly
Well, I'm just not sure. I'll tell you, I went on Rebif not long after being dx'd and I'm off of it now for a short time (for other reasons), and I'm curious to see how I feel after I restart.
For me, I could not tell the difference between MS feeling like ****, or Rebif feeling like ****. I really did not have enough time w/MS to know the difference.
Now that I've had this gap in time, I feel I will know the difference too.
What was your timeframe between dx and starting meds? Also, even though you don't feel well on an interferon, Avonex is a lower dose of the same interferon as Rebif, and administered differently, so my guess is "you never know." Copaxone is a different med altogether with different side affects.
I'm so sorry you had this relapse especially when you were feeling so well. How long did it last? What during it?
Thank you for coming our way, look forward to chatting,
Shelly
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