What's my drug of choice?

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luckyme
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What's my drug of choice?

Post by luckyme » 2 years ago

So my insurance covers 5 ms drugs. Avonex, copaxone, plegridy, tecfidera, and gilenya. I'm a first timer and not sure what to expect. Any suggestions? Also I am jc positive! Any advice would be much appreciated.

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Scott1
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Re: What's my drug of choice?

Post by Scott1 » 2 years ago

Hi,

The JCV helps you make a selection, if you want to go down that path. Just Google "drug name, JCV, FDA" and see what pops up. If it says PML then rule out the drug. PML can take several years to expose itself but activation of JCV is the probable cause. Whoever you are seeing is on the ball looking for JCV so their guidance may help.

The use of drugs is a divided set of opinions. Many come from the same manufacturer but the opinions are varied. If you feel you should do something, then do but help yourself by avoiding common sources of inflammation; elements of diet and elements of low grade infections.

Question everything and don't just be a "good" patient. Still be civil but remember the doctors who are trying to help are actually just making educated guesses. Do work with them. If they wont work with you then consider others. You're off to a good start because, at least, they know about JCV.

Regards,

luckyme
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Re: What's my drug of choice?

Post by luckyme » 2 years ago

Well said Scott. Thanks. Out of the 5 that has been basically chosen for me due to financial reasons of course( which frankly just pisses me off) 3 of which are injectables and from what Iv researched carry some nasty side effects. Btw I hate needles. The other two are oral but carry risk of PML. From what Iv read it's rare, however I'm leaning toward taking the risk instead of dealing with the foul side effects of the injectables. If I gotta live with this shit then I'd rather go for some quality. There's so many variables. I think I could deal with some belly aches and nausea better than havin the flu for a day or 2 once a week. Who knows if either will give results anyway.

luckyme
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Re: What's my drug of choice?

Post by luckyme » 2 years ago

Gilenya sounds kinda shady too. Who wants to spend a night in the drs office or er when you take your first dose?!!! Not cool! I'm thinkin trecdifera. Any input on trec? Iv read the pharma on it. I'd like to hear from some people that have experience with it. My thanks in advance.

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NHE
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Re: What's my drug of choice?

Post by NHE » 2 years ago

luckyme wrote:Gilenya sounds kinda shady too. Who wants to spend a night in the drs office or er when you take your first dose?!!! Not cool! I'm thinkin trecdifera. Any input on trec? Iv read the pharma on it. I'd like to hear from some people that have experience with it. My thanks in advance.
PML is no walk in the park. In the following study, people on Tysabri that developed PML had roughly an 87% chance of becoming moderately to severely disabled from the PML.
[color=blue]RuSmolikova[/color] wrote:Among 38 patients with Karnofsky performance ratings by their physicians at least six months after PML diagnosis, only five were in the "mild" disability category. Half were rated as moderately impaired, and 37% were severely disabled and required custodial care.

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Scott1
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Re: What's my drug of choice?

Post by Scott1 » 2 years ago

Hi,

I would absolutely avoid the risk of PML. I would view it as a walk off a cliff rather than any sort of walk in the park.

The reaction from injectibles varies from person to person. I used Avonex for 10 years and suffered for 36 hours each time because of it. I took no DMDs for a further 10 years.
In 2014 I had a major relapse. They convinced me to use Tecfidera. I tolerated the low dose very well but as soon as it increased to the full dose I had problems. That included two visits from an ambulance and one trip to ER. I discontinued after that. At no stage was I even tested for JCV.
Two years later, following a few simple rules I still do not use DMD's. My MRI's show significant improvement and my neurologist just says keep doing what you're doing.
Unfortunately, the choice of treatment is up to you. This highlights just how uncertain the prescribing physicians are.

Regards,

ElliotB
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Re: What's my drug of choice?

Post by ElliotB » 2 years ago

You may be jumping ahead a little bit as you do not yet have a diagnosis, although you do appear confident of what the diagnosis will be. So based on that...


DMDs by their design may only prevent future MS attacks, they likely will not help your current symptoms although I had immediate relief of certain specific minor symptoms within 24-48 hours of starting mine (others have reported similar experiences but the drug manufacture makes no such claims).

While all MS drugs can have some reactions, sometimes serious, not all taking them do.

"3 of which are injectables and from what Iv researched carry some nasty side effects"

Yes some do. But the one I know about best and the one I take, Copaxone, when it has side effects primarily has site injection site side effects, meaning there could be read a bit of a reaction at the spot you inject at. But ultimately if you learn the proper injection depths (extremely important), and heat the injection site prior to injection and then ice it afterwards, you my not experience any. And while some have side effects other than injection site side effects, many in not most do not. Copaxone is recommended to be used with their Autoject, which automatically injects the medicine at the proper depth (set manually). The needle is extremly thin and you barely feel it, if at all, especially after using it for a while. Again, you must take the time (it took me months of trial and error) to learn the proper injection depths (too deep and you hit muscle which can be a bit painful, too shallow and you get bumps/welts).

But, the truth of the matter there is no real proof that any of the DMDs really, really work. Or proof that anything I am about to mention works as nobody knows for sure. But for your best chance at good health, you need to take matters into your own hands and do everything possible to be as healthy as possible. Follow a MS diet you are comfortable with that fits your lifestyle (they all seem to work for some but not all) but I would like to add that it is probably a good idea to follow a gluten free diet and I would avoid any MS diet that is not gluten free, avoid sugar of all types including that from fruit, if you are overweight, loose the excess weight, take nutritional supplements as most modern foods have minimal nutrition to them (so many to choose from but at a minimum, D3, Omega 3, Bs (including Biotin), CoQ10, and a really good multi (I take many, many supplements daily - there are so many to choose from, do your research and choose wisely), exercise daily for as many hours as you can but don't get overheated (I wear a cooling vest whenever I exercise), and eliminate ALL stresses from your life (this is crucial). Get plenty of sleep and many find an afternoon nap beneficial.

Good luck and hope you are feeling better very, very soon.

centenarian100
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Re: What's my drug of choice?

Post by centenarian100 » 2 years ago

luckyme wrote:So my insurance covers 5 ms drugs. Avonex, copaxone, plegridy, tecfidera, and gilenya. I'm a first timer and not sure what to expect. Any suggestions? Also I am jc positive! Any advice would be much appreciated.
Some brief comments about these drugs:

avonex/plegridy: probably the least efficacious of these drugs. inferior to copaxone based on the COMBIRx trial. The advantage is that they are only once every 1/2 weeks. Can cause muscle aches, flu like symptoms, abnormal liver function tests. These are thought to be relatively safe for long term use.

copaxone: Probably superior to avonex based on the COMBIRx trial. can cause painful site reactions. Advantages include no requirement for blood tests and likely safe for long term use

tecfidera: possibly superior in efficacy to copaxone based on the CONFIRM trial, though the copaxone treatment group was unblinded. side effects include rare cases of PML, flushing, diarrhea, abdominal pain, low white blood cell counts.

gilenya: Superior to avonex based on the TRANSFORMS trial. generally well tolerated. Side effects include first dose bradycardia (low heart rate), macular edema (swelling of the back of the eye), shortness of breath, shingles, and rare cases of PML

hope this is helpful

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NHE
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Re: What's my drug of choice?

Post by NHE » 2 years ago

centenarian100 wrote:
luckyme wrote:So my insurance covers 5 ms drugs. Avonex, copaxone, plegridy, tecfidera, and gilenya. I'm a first timer and not sure what to expect. Any suggestions? Also I am jc positive! Any advice would be much appreciated.
Some brief comments about these drugs:

avonex/plegridy: probably the least efficacious of these drugs. inferior to copaxone based on the COMBIRx trial. The advantage is that they are only once every 1/2 weeks. Can cause muscle aches, flu like symptoms, abnormal liver function tests. These are thought to be relatively safe for long term use.

copaxone: Probably superior to avonex based on the COMBIRx trial. can cause painful site reactions. Advantages include no requirement for blood tests and likely safe for long term use

tecfidera: possibly superior in efficacy to copaxone based on the CONFIRM trial, though the copaxone treatment group was unblinded. side effects include rare cases of PML, flushing, diarrhea, abdominal pain, low white blood cell counts.

gilenya: Superior to avonex based on the TRANSFORMS trial. generally well tolerated. Side effects include first dose bradycardia (low heart rate), macular edema (swelling of the back of the eye), shortness of breath, shingles, and rare cases of PML
I have posted links to the prescribing information (PI) for most of the DMDs in the various treatment forums. These documents include the full text required by the FDA discussing the medications' side effects. For example, here's the PI for Copaxone. https://www.copaxone.com/Resources/pdfs ... mation.pdf Some patients have had problems with Copaxone regarding the breakdown of tooth enamel.
Gastrointestinal:
Frequent Bowel urgency, oral moniliasis, salivary gland enlargement, tooth caries, and ulcerative stomatitis.
Many have also had problems with lipoatrophy which is also discussed in the PI.

luckyme
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Re: What's my drug of choice?

Post by luckyme » 2 years ago

Yeah I've researched them all. I'm not too excited about any of them. I have a tendency to get every side effect known to man and a few that know one knows about ha ha! I'm just like my mother. She's the same way. We don't do good on meds for some reason. I'm pretty sure the dr is gonna push copaxone. That seems to be they'r go to. They must get some good drug rep lunches out of it ha ha. No cheesesteaks but prob filet mignon with how much these drugs cost us poor saps!!! Ha ha

centenarian100
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Re: What's my drug of choice?

Post by centenarian100 » 2 years ago

luckyme wrote: They must get some good drug rep lunches out of it ha ha. No cheesesteaks but prob filet mignon with how much these drugs cost us poor saps!!! Ha ha
Haha. :lol:

lucy311
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Re: What's my drug of choice?

Post by lucy311 » 2 years ago

Did you hear about ponesimod (I've been told it is a new better Gilenya) and teriflunamid (Aubagio)?

luckyme
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Re: What's my drug of choice?

Post by luckyme » 2 years ago

No I haven't heard of them but since my insurance didn't mention them as being on there list I'm pretty sure a can't afford them.

lucy311
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Re: What's my drug of choice?

Post by lucy311 » 2 years ago

I understand, my situation is the same. But I'm not saying they could be a good choice, I was just curious because I know nothing about them and my neurologist suggested me to take a part in the study between these 2 drugs, aubagio and ponesimod. I have no idea if they are good or not but in my country they are not on the list yet. Good luck making your decision :smile:

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