Will You Switch to an Oral MS Drug?

I’m on Rebif and would love to switch to oral meds, but will hold off for a while. I want to know more about the reactions and side effects, that only come with time.

I’m not champing at the bit at all to go on an oral medication if only because of the cost. It also hasn’t been approved here in Canada (around a year +/- 3 months after FDA approval) but it will literally take *years* for efficacy studies to be approved by the provinces to fund it. Yeah, the government wants proof that it works before they’ll pay for it. Funny that.

I could get a prescription after it’s approved by if the Province hasn’t put it on the schedule, neither they or 99.9% of private insurers will cover it at all so I would have to pay the entire retail cost.

I’ve only been on Copaxone for three months now and it’s relatively drama free and it only costs me about $700 a year out of pocket. I have no desire to fix what ain’t broke. Maybe if the Copaxone doesn’t work in the longer term, I’ll consider it.

I’m of a mind to take a wait and see attitude on the effectiveness of the drug. I’ve learned to live with my Copaxone injections and beside the probably cost, and the unknown regarding insurance coverage, I’m not inclined to make changes right now.

Speaking from the unique perspective of someone participating in one of the trials for Fingolimod (now Gilenia), I have to say that I don’t ever want to go back to injectibles if I can help it.

After 8 years of Copaxone it quit working for me and I was relapsing every 3 months like clockwork. I started the trial (TRANSFORMS) in Aug. 07 and have not relapsed since (although I suspected a mild relapse this past month but my neuro ruled it out).

Besides and increase in URIs and UTIs for the first 6 months of therapy (which subsided), I had a drop in heart rate on initial dosing which corrected after 6hrs.

The “pill” is actually a tiny capsule and so easy to swallow you don’t even feel it go down.

I have never for one day regretting starting this trial and my only worry now is whether or not I can continue to receive medication when the trial ends.

That said, I can completely relate to the fear of trying something new. All these drugs are so powerful and potentially dangerous. When I was trying to decide on getting into the trial, my other choice was Avonex. I was terrified of the side effects I had read about (the flu like symptoms and the depression) I was more willing to try a drug I knew nothing about.

While it’s not been approved yet, there are some people who have been on this therapy since the start of the earlier trials 7 years ago! And this is such a large trial — the largest ever for a MS drug — that they have compiled over 4,500 patient years of experience. I think maybe they’ve learned a lesson from Tysabri?

All that said, I think everyone who is not on it yet, would be wise to sit back and watch for a couple years. Who knows if there are long term side effects? And if you are on a therapy that is working for you and you are not suffering terrible side effects, there’s really no reason to switch.

I don’t really care if a drug is a pill, an injection, a suppository or delivers as relaxing herbal bath salts. What I want is a safe drug that helps my symptoms and keeps my MS under control. I hate injecting myself (and probably wouldn’t pick the suppository as the preferred option), but would choose a safe injection over a pill with a higher risk of side effects.

These oral drugs and the injected ones are not like for like matches (if they were, yes, a pill would be lovely). As it is, the way the drug is delivered in a distraction and you need to be concerned about what the medicine does (good and bad), not how it gets into your body.

I have progressive-relapsing – not sure what that falls under but all of the drugs have failed me and my body rejected pretty violently, so I am thinking even if the pills are remitting-relapsing, given I have no options anyway, why not try the pill – I got the distinct impression ALL of the drugs save the Novatrone were for remitting-relapsing only anyway.

i’m on rebif, and went without a major relapse from 2001 to 2009 – in fact, i’ll admit, i got a wee bit cocky, and when other health problems came up in 2009, i was not unhappy when they reduced my dosage from 44mcg, to 22mcg to see if it improved the other condition. however, within a month, i started into a major relapse, which i am still struggling with 5 months later. i went back on full strength rebif, and do my thrice weekly injections with renewed attention. i will discuss very thoroughly with my doctor to see what they know in terms of efficacy, long term results and possible side effects before making the switch. i don’t want another relapse.

I have been on Copaxone for 12 years. The daily shots took time to get used to, and the occasional site reactions can be ugly, but truth be told I’m scared of the risk for more severe illnesses that I’ve read might be associated with the orals. I’d rather deal with the daily injections, which are working just fine for me, than take any risks until the orals have been out for a while. My last relapse on therapy was 6 years ago. I guess if it ain’t broke, I don’t need to fix it. But I’m glad there will be another option for people – I would hope that everyone can find something that helps them and that new options continue to become available.

I have used Copaxone for 3-4 years and have no side effects from it other than burning at the injection site for an hour after the injection. I really don’t mind the daily injection-I always think of other diseases and the treatment for them and put it into perspective-I’m thankful to have the injections and a treatment for MS that is helping me maintain my health status. If and when any pill form is truly tested as effective and minimal side effects, it would be great to go that route.

I can’t take the injectibles, for reasons ranging from side-effects to cost. If the oral drug is affordable, and if the safety profile is better than the injectibles, then I’ll gratefully take it. But I’d rather someone help me learn to live with MS rather than send me after drug rabbits that may or may not help more than hurt.

I will switch as soon as possible. I currently take REBIF and the side effects last well into the next day. I have cold chills and a fever with every injection that last until right around lunch time. As for the injections themselves, they leave bruises that last for weeks. I also have had thyroid issues with the REBIF and now I have to take daily throid medication. I have been dreaming of an oral drug since my diagnosis 2005. Now I just have to talk the doctor and the insurance into it.

Just diagnosed a year and half ago at age 61, my neuro recommended Rebif which I have been on since. With 2 AdvilPM’s on shot night, I have had no bad effects except some spots and bruising. When I told my neuro I was not that anxious for a pill form of therapy he was amazed. Maybe at my age I’m more pragmatic and just glad I’m maintaining thus far. Down the road, we’ll see.

I started Avonex about 3 months ago (diagnosed in January.) So far, so good. My side effects with Avonex are not bad with a little Ibuprofen 2 hrs. before and 2 hrs. after. Of course, a pill would be a little nicer than an injection, but as long as my Avonex is working OK, I’ll bide my time and wait to see how things work out with the orals for the next few years. Maybe someday, but not now.

Have been on Avonex since my diagnosis in 1999. Still have flu like symptoms the night of my injection, but otherwise have only had minor relapes. Would love to take a pill and get rid of the needles! My problem is what is in the long run for the pill. Would want to see what is going on say five years of being on the pill. All we can do is pray that this is the “real deal”

I’ve been on Rebif for over 5 years (Avonex first and doing okay, a brief experiment with Betaseron that didn’t work well), haven’t had a relapse in 12 (I attribute that more to a talented acupuncturist than the disease-modifying drugs, but that’s another story), and see no strong reason to change now. The shots are a pain to do, but my Neurologist says he believes they’ve been keeping me relapse-free, and he was okay with me changing from the 44mcg version to the 22 a couple years ago, so side-effects have decreased significantly.

There are already- known side-effects with Fingolimod that sound bad, so I’ll wait to see what longer-term use shows before switching.

The side affects are bad. I’m unwilling to risk a change, although i dislike inoculations.

Thank you for this blog. It is great to have the information you share. I am working on CAMs and continue to resist taking the shots. Exercise is actually the best medicine for me but finding time and making it the first priority so I can find time continutes to be a challenge.

My doctor believes that it would be prudent to wait a while to make sure that aren’t any unpleasant surprises. I’m on Copaxone, don’t mind the injections and don’t have any of the injection site problems (yet). I’ve been on it for 13 months, and so far, so good. I had an excellent MRI–no more lesions and have no exacerbations.

Julie, in the beginning I was on Copaxone for 18 months and it did not slow the progress of my lesions one bit. But then the insurance was so high (my husband’s) he had to stop getting it and my Part D required a $600 copay per month. Could not afford it so I have been with MS medication since 2006. My neuro says I have RRMS, but my primary doc and I both believe I now have secondary progressive. I am never without active symptoms and on heavy duty pain medication. My pain is continuous and fairly severe most of the time, but I do try to work through it and have been doing better since I started Vitamin D therapy and I get Reiki treatments daily as my husband and I are Reiki Masters. IF the ‘pill’ does not cost a lot, I would try it for sure if I qualified. I would leave it up to the doctors, but my primary and I both like to wait and see! Hang in there everyone – there IS light at the end of the tunnel, I am sure of it! Namaste!

I enjoy your newsletters and have never posted a comment, but want to do so now. I was diagnosed with MS in 2003. I took Rebif, with great success for about 6 years. Then, I started relapsing and just “stayed” in a weakened condition, with increasing cognitive difficulties. I was tested for antibodies and found to have neutralizing antibodies to the Rebif. I then tried copaxone and after 5 injections, developed severe side effects. I became so unable to function that I had to retire on disability, with 27 years of service. I then tried Tysabri, felt GREAT for 2 months, then developed side effects after my third infusion. I am now taking IVig infusions and feeling better. This helps the fatigue and cognitive problems, but is not slowing the progression of the MS. I am very eager for the oral medication. I had never heard of the IVig before, but it is really helping and thought others might be interested.

I’ve been on Avonex for 3 yrs., and once you get past the injection day and the ( SYMTOMS)…….. time flys, and then it’s time for my weekly injection again

Like Jeri B, I’ve been on the Phase III trial of FTY720 (Gilenia) – approaching the 3 year mark shortly. Most of the news reports that mentioned FTY720 side effects failed to mention that nearly all of them occurred in Phase III Trial patients on the higher (1.25mg dosage), and not those on the lower (0.5mg) dosage. The higher dosage has been dropped entirely, since the benefits were there on the lower dosage, and the FDA is suggesting that Novartis test an even lower dosage than 0.5mg. So it’s not as simple as “there are side effects” – they have been vastly overstated, and I’m not saying that just because I’ve been involved in the trial. Getting the dosage right is going to be crucial here.

I am of the opinion that “If it ain’t broke, dont’t fix it.”
I have been on Avonex for fourteen years. Early on I had side effects, mainly a temporary worsening of MS symptoms (especially fatigue) for twelve hours or so after the shot. That has long since gone away and for years now I rarely have any SE and don’t even premedicate. I sometimes get some SE if the shot coincides with heat or stress. So I try to take it easy on shot day.
So, unless something comes out that works better than Avonex, regrows myelin let’s say, I have no plans to switch to an oral MS med.
- Roy

I have never left a comment here but after reading the comments here, I dont see too many from people like myself that have been on the oral med Cladribine. I have been a part of this study for about three years and had an amazing positive experience. I was diagnosed 5 yrs ago w RRMS and tried Rebif for a few months. The horrid cost, bruises and scars and pain from the injections left me chomping at the bit to try something new. I am quite mobile now, no longer have to have naps on a daily basis and have so much more energy.
There is a lifetime maximum for this medication but I have had no side affects at all from it and would encourage people to try it. My ONLY concern with choosing this path is that it may wear off in time and I will be right back were I started from. This info isnt known as of yet. Good Luck to all of you out there in whatever path you choose to help you deal w this disease.

Diagnosed in 2000 started on Betaseron with severe side effects such as migraines every day after shot and flu like symptoms. Did study comparing Betaseron and Copaxone and drew Copaxone. Been on it ever since. No side effects except mild injection site reactions. Diagnosis changed from RRMS to SPMS in 2007 when I changed to a much better and more attentive neurologist. I was told by my neuro that I have actually had RRMS since 1988 with my misdiagnosis of Bells Palsy, so I actually progressed around the amount of time they say that many with RRMS will change to SPMS.
My Neurologist said he would rather be treating me with something like Copaxone and feel like we were trying to do something instead of giving me nothing, so I continue.

I am a disabled ICU RN and have my own website to help support and inform people with MS. I would still have to see a little longer track record before deciding to change to the pills, but after researching and speaking with my Dr. about it if the pro’s outweighed the cons, I believe I would go for it. I am only 43 with 11 year old girl twins that I want to have more energy and less pain to be able to be more active with them. Good Luck everyone!

Living in the Netherlands as I am, I would love to switch over from Rebif to oral MS medicine which controls the disease and sort of cures it. I can live with the damage already incurred with my central nervous system, however would love to be cured.

When I got this disease 5 years ago, I had no idea about it and I’m still wondering how could I get this. All I know is that I’m a soft, gentle, and loving person who cares too much for other people.

http://www.drugs.com/clinical_trials/two-kinds-multiple-sclerosis-two-different-responses-beta-interferon-stanford-study-shows-9068.html

I have been on Copaxone for 3 years. It has worked wonders as far as keeping the relapses away but my body looks like I am in an ongoing car accident. Huge red knots that turn to bruises and then scab after EVERY injection. I’ve tried ice packs, heat, before and after with no change. I don’t mind the shot itself, just hate what comes afterwards and stays for weeks. I’m scared to switch but eager to get normal looking skin back. Any bizarre suggestions to minimize site reactions would be much appreciated!

I have a wait and see attitude. I have been on Copaxone for the last year after my diagnosis and while I would love not to inject, I have seen too many drugs brought onto the market only to be alerted about side effects and have them withdrawn – does anybody remember the fen-phen debacle of the late 90’s? or a major warning such as with Celebrex?

I have been on Tysabri for more than five years now. I am getting inquiries from Biogen and even prior neurologists about coming off the med due to the uncertainty of long-term use. I will consider oral drugs (I am also on Ampyra) but having lived through the early PML scare with Tysabri, I will wait a while to see how effective and safe orals meds are.

I get terrible sight reactions but I am concern about changing. I need proof and proof comes with time.

I will switch in a heartbeat!!! I have already spoken to my doctor about my switching, but he was a bit hesitant. But I convinced when I said to him, “I will stop the injections if I am not put on an oral medication.”

My only concern is if my insurance will pick up this new oral medication.

WILL THE PILL BE MUCH CHEAPER OUT OF POCKET ?

i have been on trysabri for two years now. the cost is getting out of hand, if medicare would cover the pill i would take it in a heart beat. i would like to hear from anybody that is taking trysabri or anyone that has ms. my email is annpscott@yahoo.com

I was recently diagonosed with CCSVI. I have no intention of taking the oral pill which I heard in test has killed people. More cases of Tsabri PML reported again.

Gee, I am really not happy with “drugs”, most of which are very dangerous but passed through FDA anyway and make the drug companies lots of money.

No, I hope to have my CCSVI properly treated and get better with many of my friends around the world who are allowed the treatment.

What’s up with all the drug discussion? Do the drugs open up veins? I DO hope so. then I might take them. It astonishes me that Americans are so conditioned to just take a drug.

I would love to get off the Copaxone- the only issue with it is of course doing the daily injections- it took me a long time to get used to it. I would love to take a pill- although I can not swallow pills!! go figure- My dr though has already told me that he does not see any reason to change meds because the Copaxone does work well with me. so it is a wait and see for now

I just finished my 38th Tysabri infusion and would not switch to an oral med unless Tysabri stopped working for me. The efficacy is far greater than any of the injectables and the new oral med.

I am grateful there will be even more options, as it seems all of the meds work differently for each of us with MS.

I am ready for a cure!

Hi Julie,
Quick note. In your article you mentioned that LDN was
an ‘agonist’ which is actually the reverse. It’s an opiod
‘antagonist’ vice the other. Other than that, ‘great’
article and Thanks!

Have a Great Day!

I have been on copaxone for most of the last 12 years and other than hating the injections it has been a safe and reliable choice. I am not keen to be “the first” and I’ve heard negative side effects (including cancer) about the oral drugs. So for me, I’ll take a wait and see attitude.

I am eager to switch to the oral drug as soon as possible. I am very much afraid of needles and despite being on Avonex for nearly 2 years I am unable to self inject. The side effects aren’t too bad with Aleve and plenty of water to stay hydrated, but having to leave work early once a week and go to the neurologist for my injection is a ritual I am looking forward to ending.

Oral YES! I have been on rebif since 2005 & have had 2 nasty setbacks & 3 quite mild ones. But it is the side effects I am tired of, the flue like symptoms, headaches & just general ick feeling till about 11am. I take the injection in the evening & sleep thru most of it, but still often wake up at 2am & have to take a pain/fever reliver. I pay the 1st $2300 every 6 mos. & then 35% of the total drug cost for the remainging mos. The cost is NUTS & I have opted to come off Rebif, we simply can’t afford it with 3 kids a farm & business to keep a float something has to give & with our poor economy alot already has. This was the final straw when the gov’t decided we can ‘afford’ to pay an exagerated amount. So
yes I would try the ‘pill’ I am sure the cost will be the similar but when some research is available to educate myself on I will give it great consideration. Needles are just nasty & my body, mind &b soul is just plain tired of them!
Does anyone else have a problem with these over exaggerated prices the drug companies have placed on us? Are they providig any funding to help expediate the CCSIV rseaarch? They sure have the funds! As it stands now for what I pay a year for Rebif I can go to Poland & have the treatment & still be ahead of the game this incluides air fare & accomodations for 2!
Fustrated In Sask!

I personally have been on copaxone briefly (had too many adverse reactions) then switched to betaserone for several years. That worked until my WBC’s began dropping and I relapsed severely. Now, I’m on tysabri, which seems to be going well. I admit it would be nice to stop the necessity of needles (whether daily, weekly, or monthly), but it isn’t that huge a deal and I’d rather stick to my Dr.’s suggestions and right now, he feels this is the best option for treatment.

I told my neuro to put me on speed dial! Was on Rebif for 4 years, Copaxone for 1, now on Tysabri for almost 2 years. Looking forward to no more needles!

well i have been on copaxone for some time- if we had to pay for it- well there is no way- on medicare- but is the pill cheaper and how many did it help how many didnt it help? just wished someone would think of something to stop it before it even starts!! frustrated

I have been on Copaxone for 1.5 years. I had alot of trouble with it in the beginning as far as reactions go – it took almost a year before they completely went away although I still have to take allergy meds along with it each day. I have trouble now with my skin sinking in from the shots – maybe my fault for not rotating in each area properly but regardless I wanted to go off of it since other meds are not daily. My dr. has cut me down to every other day and I no longer do any of the suggested injection areas other than my hips and now they are starting to get worse as well. I am getting to the point now that I don’t even do it every other day anymore because of it so I am going to urge my dr. to switch me over if at all possible regardless what the side effects are. When I first heard of the oral meds way back I said I would definitely not want to jump right onto a new medication but at this point I wouldn’t care at all. Ofcourse I don’t know much about the orals at this time but anything to get off the injections would be great.

I’d switch to an oral medication in a second. The benefits would obviously have to outweigh the risks and it would have to be more cost effective. I have to pay myself for a large chunk of my medication. I’ve been on Copaxone for 5 years and I’ve had enough. It’s always treated me fairly and I haven’t relapsed since I started taking it but my skin could certainly use a break. And so could my wallet.

I actually have an appointment for later this morning with a neurologist to discuss starting the oral medication. I am so excited! Yes, there are side effects listed, but aren’t they on all meds? I am currently on Rebif (when I remember).

I have been on Tysabri for almost 2 years. I LOVE it. But, my doctor doesn’t want me on it for more than 2 years b/c the risk of PML increases the longer you are on it. This means I may have to switch to the “pill”. I was scared to go on Tysabri and ended up loving it. I am not terrified of this “pill” but who knows, it may be the next best thing! What do we have to lose.

i will tell u i am so excited that there is another option for me.since after a year on each of the meds i became allergic to them.i’ve had m.s for 5 years.and i have just recieved my starter package and i’m going to my cardiologist in 2 weeks to take the first dose of gilenya.i don’t think it will kill me.but if it does i’ll be happy knowing i didn’t have to take another shot that made me sick more then the ms ever did.sorry for being so brutily honest but can’t wait.i think everyone should be excited about this break through.because maybe something better is right around the corner for all of us with m.s

I am currently on Rebif and have been for five going on six years. I do well with the side effects except the injection site reactions. I have dents in my skin area where I can no longer inject in as well as every time I inject I get a site reaction. I want to ask my Dr. about switching to an oral because of this reason, but at the same time I am nervous because I have been relapse free on Rebif and I am afraid to switch to an unknown. Has anyone gone through a similar experience

Hi I’m 33 years I found out about having ms in July last year and I have been on copaxon for 3 months now and b4 that I got about 6 relapse since may till dec and none since I start the injection. I consider my self bad with med and all of soden I’m using injection its a big slap on the face for me. the most med I use in my life is Advil and now like I said its slap on the face but I guess I got no other choice till I found out about the oral treatment and I’m kind a happy but hesited to try it or talk to my dr about it cuz she kept telling me this med is working for you and worried abou wat I’m reading about wat the injection can do to ur skin. But I’m gonna wait for a year and see the reaction on the oral med. and hope and pray to god after this year it will b a cure for this crazy disease
So guys pray with me