A recent survey by Decision Resources reveals some surprising information. For all of our big plans about how we intend to use the hopefully-soon-to-be-released oral therapies for multiple sclerosis, our docs may have different ideas.
As it turns out, a simple dislike of injecting ourselves may not be enough to convince our doctors that we should be on cladribine, FTY720 (aka fingolimod, Gilenia) or laquinimod when they become available. Most neurologists surveyed say that they will only prescribe one of of these oral drugs after their patients have failed on Copaxone or one of the interferons (Rebif, Betaseron or Avonex), have side effects to these drugs that they can't tolerate or are not willing to take on the risk of PML that comes with Tysabri.
Only 10 percent of docs said that they would use one of these oral drugs in someone who had never been on therapy at all.
However, 30 percent of the neurologists in the survey are classified as "high-volume, cost-conscious" prescribers, meaning that they understand the financial implications of these therapies. These docs would be more likely to prescribe one of these oral agents to their patients if it was more affordable, even if the doctor was less familiar with the medication or, presumably, if the patient had not yet failed one of the injectables.
Interestingly, the results do not seem to differ significantly from a similar survey conducted over a year ago. (Read the full blog: Will Neurologists Use New Oral Treatments?) I guess I would have thought that as the news about the orals was more frequent and the release of these drugs grows closer, that docs and patients would have conversations about these drugs and start making plans to switch.
What about your doc? Have you mentioned the orals to him or her? What did you say? What was your doctor's response? Let us know what is happening out there in "the real world" by posting your story below in the comment section.
Read more about the oral drugs for MS:
Russia First to Approve Oral MS Drug
Oral MS Drug Moves Forward at FDA
What's Up With Oral Drugs for Multiple Sclerosis?
Will You Switch to an Oral MS Drug?
Oral Multiple Sclerosis Drug More Effective, According to Trial Results
I have been on and off low dose naltrexone for years now. Saw my neuro yesterday who was ok prescribing it, now she says as I will not try copaxone I am wasting her time. So she never did a neuro exam or anything. She has never mentioned any of the oral meds that you mention, just the usual shots . Needless to say will never go back, getting a new neuro.
I have a new neuro, one who also has M.S. I asked her about the new oral drugs, she said its too new with many side effects, and would not reccomend them at this time. At least she had done study on them. My former neuro would not even discuss them with me.
Saw my neuro just last month and asked his opinion of the new orals. He was unenthusiastic and felt the side effects were dire! I’ve been on Avonex for over 7 years with great success, but I keep an open mind. I know someone who participated in the 3 year clinic trial for fingolimod (Gilenia) and has never looked or felt better (currently taking).
I asked my neuro his thoughts regarding the new oral drugs and me mentioned that with the amount of side effects at this time would not be worth changing.
I was diagnosed in 2003. I took Rebif, with no problems and no side effects until late 2008. I was tested and found to have developed neutralizing antibodies. I then tried copaxone and had severe side effects. Next I tried Tysabri for 3 months, then had severe side effects with that in Nov. 2009, to the point that I was forced to retire after 28 years of service. I currently have my regular neurologist and one he has referred me to in Atlanta. I have been receiving IVig since May for fatigue, pending the approval of the oral medication. Both of my neurologists have openly discussed alternatives and are very informed about the oral medications. I’m very fortunate in that way. I just can’t seem to get past the weakness/fatigue and cognitive disfunction I fight daily and am anxious to try the oral medication.
At my last appt, I mentioned to my neuro that I was getting more site reactions(lumps) from my Copaxone injections. He didn’t give any suggestions for resolving them. Instead he said, “well, you know they have an oral drug coming out soon. I stated that I had heard there were alot of side effects and he said, “would you like some information?” He then proceeded to print out 27 pages of info on fingolimod. When I asked if he would then recommend it, he gave a non-commital answer. It seemed that I had more misgivings then he did.
Julie,
I believe you are on Low dose naltrexone? May I ask you a few ?s. How long have you been taken LDN? Are you having any relapses? What did you switch from?
Thank you very much,
Hey Julie,
So he looks at me kinda expectantly, I guess to see if I wanted to try or not (not pressuring though). I said my husband tells me not 2 be a guinea pig. He said that’s the 3rd time today he’s heard that. He said, a lot of people are wary of them b/c you know, one of them has been linked to possible cancer risk…. I said, NO THANKS! 
I’ll stick w/ Copax for now! We’ll just watch some OTHER brave souls on it first & see what happens!! He seemed to agree, but did mention them again about, 3 times during the visit. Almost like, he wanted to make SURE I knew…and could make an informed choice. But he wasn’t pushing it at all. I kinda got from him that he was a little wary too…worried about throwing his patients out there first. But maybe, felt obligated to mention? Hard to say…
Yanno, I just went to my neuro yesterday. I had hardly sat down and made simple chit-chat before he says, “you know the oral medications are coming out this fall….” with kind of a raised eyebrow–i inferred “cautious excitement” from this. I kinda smiled, yes-I have read about that.
Oh! I forgot! He also said, yanno….what the oral meds do, (b/c I had mentioned I heard one of them was linked to liver damage…and I also have alpha-1 antitrypsin deficiency so can’t hurt my liver)….the oral meds basically just break down your immune system….so your body can’t attack itself….
“And…you can’t fight off infection. Um, No Thanks, Doc!”
don’t think so. nuh-uh. almost 10 years on shots. they’re not THAT bad. now.
And to the person above, whose neuro has MS: lucky dog you are!! (not your doc, but you know what i mean…)
My neuro and I did discuss the oral option. His option, “I’d prefer to see a well-documented, safety data before recommending to my patients.” I smiled and completely agree. I am on my 3rd DMD, Rebif, for which I’ve had success with slowing the process of my MS. No new lesion development or relapses in eight years. I can say with confidence that I am happy that there will be another option for patients who have not achieved success with previous DMD’s. Who wouldn’t prefer taking an oral over injection? For me, it just isn’t worth the risk for the possibility of additional lesion load / relapse activity.
My Neuro pretty much ignored my complaints about feeling non-energetic and of slowing loosing fine control of my extremeties(sympathy but welcome to MS attitude). Finally went to see an endocronologist about declining sex interest (treated unsuccessfully with Viagra by my internist), who determined with a series of blood tests that while my brain was signaling for testosterone I was not producing enough, perhaps due to MS CNS damage. Two days into VERY low doses (2.5 grams per day) of Androgel, my energy returned. A week later my fine muscle control was back – good as new. Finally was seen by my ReHab Docs who were very pleased with the results of the testosterone therapy (my mobility was WAY improved) and who told me this finding is JUST now being reported in Journals. In my opinion, Neuros are one type of specialty Doctor and you may be better off seeing other specialists about relief from other symptoms.
My neurologist has discussed the fingolamid but we agree that what I am on at the moment (Rebif) is working so why change what isn’t broken? I am glad he’s with me regarding not jumping on the bandwagon. We will watch and see how it goes for a few years before changing anything.
I run a support group and hear lots of Drs. say on the subject of Oral Meds. If what you are on is working, just stay on it and do not be a guinea pig. Wait and see what effect these drugs have once they are in common use.
I really need to voice my frustration, not with doctors, but with my insurance company. I spent 3 years in the clinical trial for Amprya. This medication has recently been FDA approved and shown to improve walking speed. My walking speed didn’t improve, but I don’t know if it would be worse without it. I guess I’ll find out, because now my insurance company won’t cover the medication and it’s too expensive to buy it myself. I’ve had so much trouble with my prescription drug coverage lately, I don’t know if they would cover one of the new oral meds anyway. Managing my MS is not just between my neuro and I, but now my insurance coverage has a big say in what we do to try to keep things under control.
I have been on Copaxone since Feb 2010. Asked Neuro about the new oral drugs…….she says to wait and see what happens and by wait I believe she meant at least two years.
I have had MS since 2006. I was first put on Betaseron by my first neuro. I had too many side effects and plus the Dr. wasn’t open minded. I switched neuro’s and was put on Copaxone. It was ok but then the injection site reactions where getting too bad. I worked for some doctors that where able to prescribe me LDN (low-dose naltrexone). I think it’s much better than the injections and I feel it helps much better with the MS symptoms. I would definitely recommend it if your doctor will prescribe it.
I spoke with my neuro yesterday. He said the new pills have far more side affects and he would not recommend them when they are available.
I had a neuro that had MS and I personally did not find it helpful or reassuring. I think the neuro had her own anxieties about the disease (she was on Tysabri) and therefore was unable to truly understand my fears about being on Tysabri. In other words, I got the sense that since Tysabri was her life saver (she was back to walking) she had little interest in my personal worries about whether the drug was the right choice for me. Also, I hate to say it but I think she had cognitive problems which interfered with her ability to handle complex medical situations and questions. I want to know my doctor is mentally sharp so I switched.
My new doc was open to oral medications. She would suggest fingolimod over cladribine. She said that cladribine had much higher cancer risks and with fingo you could get your immune system back to normal more quickly if you had to stop it. Cladribine is only taken a few times a year. Since I am close to the 2 year Tysabri mark and worried abou PML I will probably try fingolimod. I couldn’t tolerate interferons or copaxone.
I’m currently participating in the clinical trial for Laquinimod that is being done at the MS Center of Oklahoma at Mercy Hospital with Dr. Pardo. My neurologist, Dr Pardo, held a Q&A presentation a couple months ago which included a discussion about the future of the new oral disease modifying treatments.
When asked if a patient could go on the oral meds as soon as they became available, he answered that if a patient was doing well and had been doing well on the injectable meds he would not switch a patient to an oral med just because it had come available. To paraphrase in my own words ‘if it’s not broke, don’t fix it!’
As for new-with-MS-patients or the patients that are not currently on any MS meds then, of course, he would discuss with these patients which DMT they would begin with, including the new oral DMT’s.
i talked to my nero about the oral pill and she was very much for the pill and said that i would be able to go on it. iam taking trysabri for the last year.
I saw my neurologist beginning of July when I first met him in March he had no idea about the new pills and claims he would do some lookin. He lied wouldn’t even talk about it then to top didn’t give me time of day.He took a cell phone call right in front of me and someone who was learning from him! This is my 4th doc and I’m not getting any better. My home doctor has been with me for years now and gets to see how bad I get and he wants to always learn more about MS, he gives me he time but SSI won’t even listen to him which I think is BS cuz he actually cares about me. So now he is tryin to see if I can get into the Mayo clinic. So gov. needs to put a stop on payin these speacialist so much and give it to docs whom deal with us everyday and a raise to neurologists nurses cuz they do to.
I am currently in the fingolimod trial, and my neuro is very confident that I am on the active medication. I have been in the study for 18 months, and prior to that my neuro wanted to place me on Tysabri because of the aggrissive progression that my MS had been taking. I had never been on any of the injectable meds prior to the study. Now I am stable, relapse free, and have few very manageable symptoms. She is a leading MS researcher in my area & speaks at many conferences and is completely onboard with me taking fingo. Once my trial is over, as long as the (FDA has approved the fingolimod) she will undoubtedly prescribe it for me as well as any of her other patients that aren’t responding well on their current meds.
Something is very wrong here. The CRABs have an efficacy of 10% alone, but 32 % if looked at the combined efficacy of Placebo. That means the placebo is more effective in fighting MS. I’d like to take the placebo , please.
Now they won’t give the oral drug, unless a patient tried the CRABs.They want to keep a patient on a med that has little ability to help?
That’s suggests to me that the oral drugs have a lower efficacy than the totally ineffective injectable med’s… 10 % efficacy is horrible. less than that is a abhorrent. I for one have had the terrible side effects from the CRABS. I refuse to take a drug that might help, but makes me suffer for it and I will not take a drug with even lower effectiveness
Can we PLEASE fund research into CCVIS? The German and Swedish studies were flawed and probably sponsored by Big Pharmaceutical companies. The drug companies aren’t looking to treat or cure MS, they are interested in their pockets. As as long as we are complacent and take take ineffective medication, the longer we will have ineffective medications
My neuro talked about the oral meds back when I was dx in April 2009. He told me oral drugs were in the near future and went over the risks/side effects. He said there was only one of the ones at that time that were close to approval that he would consider prescribing due to the dangerous side effects. I don’t mind the injections. Since I work in health care, I don’t want to be on something that lowers my immune system. I will watch and see as long as I continue doing OK on Avonex.