Multiple Sclerosis Forums (Page 2)

have been taking ampyra 10mg twice daily for 6 wks. the headaches went away after 4wks,the dyspepsia is tolerable but during the last 2 wks bladder control or rather, lack of it, has become a huge issue for me. recently I had 2 episodes of urine incontinence, I can live with the other side effects as a trade off for the improvements in walking but cannot face living in fear of wetting myself in public or having to wear protective products. before ampyra I had minor urgency/ hesitancy episodes but now it's horrible. considering stopping ampyra .advice? ## Hello, Jane! How are you? I'm sorry about the problem that you've had, I agree, that would be horrible. Have you consulted your doctor? You may be able to take something to counteract this side effect, rather than give up th...

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I have been living with ms sense 1991. I've had my up and downs through the years. I've had plenty of falls. Broke my left ankle, then almost a year to the exact date later I broke my right foot. My walking has gotten progressively worse and if tried many kinds of treatment both injections and pills. The latest being ampyra. Nothing seems to work. I also have arthritis in my spine and swollen ankles from high blood pressure so my mobility is very limited. The medications I see advertised for ms seem to be for remitting ms. Not progressive ms which I have now. I'm at a lose of what to ask my doctor I should try now or should I give up and let it take its natural course.

I was diagnosed with PPMS. My right leg feels stiff when I walk. I was thinking that Ampyra was intended for the other types of MS. But reading of the side effects, I'm doubting taking it. I am working on getting a Walk Aide. It works wonderfully for me. It's just expensive. So would Ampyra be right for me? ## Unfortunately, the information in your post is very limited, which makes it hard for anyone to advise you on this. Learn more Ampyra details here. What medications do you currently take? Any form of MS can be touchy and unpredictable to treat, so all must be handled with care. Have you consulted a doctor about using it? ## Thanks for your input Verwon. I didn't think about the other meds. I take Baclofen for my spasticity and LDN. I was taking Rebif, but my insurance s...

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I took it last night and feel like I did the 1st few months I took Avonex - a little nauseous, achy, cold, etc. Hopefully, these side effects will decrease after a few months like they did with the Avonex, as I like the SQ and every 2 week administration. ## Most side effects do improve with time, as your body gets used to a medication. Have you experience any new ones? The FDA lists the typical side effects as possibly including redness and irritation at the administration site, flu-like symptoms and tiredness. Is anyone else on this that can chime in? ## I tried Avonex and it made me feal so bad I couldn't get out of bed then I was put on Copaxon it was so much better then they made the dose stonger and I only have to take them 3 times a week I am so grateful I really don't li...

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Anyone have horrible reactions with this batch number? All 4 needles caused fingers, toes to go numb. Could not get war - chills so bad I could hardly walk. Horrible pressure in base of neck. Contacted AVONEX - Biogen but they seemed not bothered. Obviously becayse they don't have to take the needles. Also does anyone have problemd taking AVONEX and over the counter cold medication, Codine ect??

has anyone drank alcohol while taking aubagiohas? ## Hello, Peg! How are you? Generally, it is best to stay away from alcohol, when you are taking any prescription medication, due to the fact that it can greatly increase the side effects as listed by the FDA, so you may experience much more nausea, dizziness and drowsiness than usual. Thus, one drink may affect you the same as having had 2 and so on. If your doctor does approve of your having a couple drinks, please make sure that you will not be driving, or operating and potentially dangerous machinery. Is there anything else I can help with?

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istarted amphyra six weeks ago after completing eligibality test over an initial four week trial super vised by my neuro the out come of the walking test was a thirty percent improvment in walking speed also some balance and cognitive improvments icommenced full time use two weeks later and apart from the exorbiant cost 195 dollars every four weeks i fully recommend any one prescribed it persist with the trearment ## Hello, Ross! How are you doing? I'm so very glad that this medication is working for you. Have you had any problems with the side effects that the FDA lists, such as nausea, bladder pain, forgetfulness, depression or muscle cramping?

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i am now on my 2nd week of taking Amprya and everyone is noticing my walking better.the left drop foot though is a drag (no pun intended lol) but has gotten alittle better my over all walking has improved.my side effects of pain in throat and neck was 2 days,my abdominal pain was 2 days,the itching and tingling was 2 days and all so far passsed.the numbness i normaly have in both my hands that was an MS episode that i never recovered from,was alittle more enhanst,but i would rather deal with all that if my walking approved not that im sprinting over hurls,but feeling really good so far!! good luck to everyone who is taking it. ## That's great, I am so glad that it's working so well for you. So often what gets posted on sites like this are just the complaints about a certain medi...

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Any feedback on risks of taking Aubagio if you have Multiple Hepatic or liver Hemangioma's? Is it liver "enzymes" that should be tested before going on Aubagio? Any other tests pre-Aubagio? How long has it been available? Are there any clinical studies post FDA approval? Does anyone have substantial improvement or problems since taking Aubagio? Please share. I've got enough illnesses/syptoms don't want to add to them... Thanks ## Aubagio is generally not recommended in someone with severe liver impairment, of any type, due to the fact that it has been known to have a detrimental effect on the liver. How is your liver function? Your blood pressure should also be checked, before you start it. The FDA lists its typical side effects as possibly including nausea, fever, c...

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This call center is HORRIBLE - don't they understand they are dealing with people with MS? ## Hi Deb, I'm sorry to hear about the bad experience you had with the Ampyra patient assistance program. What exactly made it so horrible? Could you elaborate? Any information or details you can provide could very well help others who are experiencing similar issues. Thank you! ## Patient assistance for Ampyra SUCK!!! Two months and I still don't have an application!! Had 2 different people call and tell me they were sending out apps still haven't received either. If your going to screw me you should at least kiss me!! ## I experiencing the same crap. But it's between the insurance the foundation that gives money and all the bs in between. I'm on this site because I've...

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I have SPMS and have been taking Ampyra for a month. in the beginning I felt nothing but the side effects of lower back pain and increased balance issues. Those stopped, and I thought maybe it was helping me walk a bit stronger. Then the knee pain started. I didn't connect it to Ampyra at first. But I've found it listed as a side effect in a users forum. getting up from chairs is very painful and I believe the pain has made my walking worse. this is counterproductive and I wonder if I should continue. ## Knee pain isn't listed among the side effects reported by the FDA. Back pain is, as well as insomnia, dizziness, headache and constipation. Have you consulted your doctor to be sure? It would be best to have this checked out to rule out other possible causes. Is this the onl...

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Is it possible to go to the emergency room to have narcotics prescribed for multile sclerosis pain ## Is it possible? Yes, but not very likely. In most instances, they are going to want to know why your personal doctor isn't prescribing something and they will worry that you are drug seeking. Most ERs don't routinely give them out anymore, since their prescribing practices are so closely scrutinized by the FDA. Have you tried consulting your regular doctor for a solution? ## Yes, in a perfect world. We all know this is not.

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Has anyone been on Plegridy yet? Would really like to hear how people are doing on it and what kinds of side effects are going on? ## Hello, Courtney! How are you? Has your doctor recommend this for you? Plegridy is listed by the FDA as being Peginterferon Beta-1a, it's used to treat relapsing MS. It was approved in August of this year, 2014. According to the Plegridy website, evaluation studied showed the most common side effects as being administration site reactions, congestive heart failure, decreased white blood cells and seizures. Has anyone taken this, yet?

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Been taking ampyra for. 4 days now. I have never had pain with my ms , just mobility & cognitive issues,occasional swallowing difficulty. Since taking ampyra my legs are aching enough to where I feel like I need to take something. Also my lips are trying to go numb. Anyone else with these side effects? ## Yes, those can be side effects of taking Ampyra, along with MS relapse, seizures and balance issues. They should improve in a few weeks, after your body gets used to the medication, but you should have this checked out to be sure. Is there anything else I can help with?

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My neuro is putting me on ampyra, and I am excited about this. My biggest MS problem is lack of balance. Anyone seen a difference with balance issues on ampyra or its compouding equivalent? ## Ampyra contains the active ingredient Dalfampridine, it has been proven effective at managing some MS symptoms. This is a very new medication, but we have a few posts on it from people who have been using it, perhaps someone there has posted more information, most have said they've gotten good results from it. Does anyone else have experience using this? ## Hi Callie. I have been on ampyra for about a week and a half. I still cant decide if i see a difference yet. I did notice that my bladder issues have been a little better and i seem 2 be a little steadier. Balance is my main issue too,so i ...

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I took my first dose of ampyra today and after 7 hours I had a terrible reaction. I have bad neuropathic pain in my legs, and about 7 hours after the dose, I felt like the neuropathy had been kicked up about 100 times. I literally felt like my legs were on fire. I jumped in the pool and immediately called the neuro's office to report the problem. I was told to stop it immediately, which I am very disappointed about. I had an allergic reaction to Tysabri, couldn't take Rebif, have problems with high dose steroids, and now this. I am pretty much to the secondary progressive stage, although I had a massive attack 15 months ago, and am now on Copaxone and Avonex duo therapy since 2/09. I was really hoping Ampyra would help with the walking, (now on a walker) but because of all my al...

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I have been taking Ampyra for 1 month tomorrow. I have only seen a very, very slight improvement. I would like to get some feed back from other people that have SPMS on how they are doing ## I also have SPMS and will be on Ampyra for 1 month tomorrow. Just before starting ampyra, I got to the point that I started falling down from a standing position. After starting ampyra, that falling has stopped. It is now easier for me to turn over in bed and the feeling of weakness in my legs is getting less and less. I read that one person who also has SP MS waited 2 months before really noticeable change for the better happened. I hope for the best. ## Ampyra is a very new medication, just recently approved by thee FDA, it contains the active ingredient Dalframpridine. It is most commonly used to...

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As a potassum blocker, Ampyra was once a "bird poison" Doctors get kickbacks, and guinea pig patients. nerves need a balance of sodium and potassium for nerve conduction. It is counterintuitive to block potassium. It prevented birds from flying. ## And Warfarin was a rat poison…. In all seriousness, all medications are toxic if you take too much, or if they are taken by the wrong species. It's just the nature of adding chemicals to the body in an attempt to improve quality of life and get a specific desired result. Your concerns are appreciated, but I can assure you that it's use in humans has been very carefully studied. For it to be used in humans, it had to pass rigorous testing, be purified in a different form than that used in birds and the dosing ...

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Is anyone paying out of pocket for Ampyra? The monthly retail cost is prohibitive. If you don't qualify for financial assistance, it is next to impossible to take this drug without going bankrupt. All this for a drug with a very unimpressive track record. I'm having difficulty justifying this experimental journey unless the drug company supplies the meds at no cost. Am I alone in my thinking? ## Did you try the assistance program directly from the manufacturer? Those programs are often more generous than those provided by your county, or state. You can find out more and apply by calling them at 888-881-1918. Learn more Ampyra details here. ## I am waiting to receive a call back from their financial assistance program. So far, I have heard nothing for 3 days. I hope I qualify bec...

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want to see potho and know all about this druge ## have recently suffered severe depression and anxiety, have ms for 27 years have been on copaxone for about 10 years. When had mental collapse more test were done for done for my decline in cognitve ability it showed severe decline very slow processing speeds. My nuero said that maybe copaxone was no longer working and we should possibly consider changing my therapies. What could that mean. I am now afraid it might mean I have progressed to secondary progressive stage of the disease. The cognitive issues are pretty bad and I am applying for disability retirement

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