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Treatment

Disease Modifying Therapies

  • By Laura Kolaczkowski

    Shortly after I was diagnosed with MS, I began taking Copaxone as my disease modifying therapy.  I was doing well with it for almost three years, but then my injection sites started to be very painful.  I becamse less compliant because taking this shot every night was not pleasant.  My neurologist suggested I switch to Tysabri, and I have now been on it for over a year.  My MRI is stable with no new lesions, which is great news. What’s your experience with the disease modifying drugs?

     

     

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    • By LA703

      In reading your post, I thought I was reading something I had posted myself. That’s my exact experience with it except I’ve not yet begun the Tysabri. I’m getting my first infusion tomorrow. Have you had success with the Tysabri? I’m really afraid of it and don’t want to take it.

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    • By Laura Kolaczkowski

      LA703,

      Now after 4 years I am still on Tysabri and my MS is stable. There have been no new lesions (or at least nothing significant) and my JC Virus test continues to be negative. A lot of people are scared of this drug, especially the first infusion. I have a friend who called me from his car after his first, and he was in tears because he was so relieved to have it done and had been really afraid. There is no need for this type of fear — there are few side effects to Tysabri. Remember it takes a few infusions before the drug really takes hold of the MS so don’t expect an overnight miracle. Good luck and if you have questions, be sure to ask your doctor, nurse or even those of us here. I trust you will do well on Tysabri – the majority of people do.

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  • By Lisa Emrich Moderator

    Laura,

    I started Copaxone as soon as I could after the diagnosis was made official.  I stayed on Copaxone for almost 4 years.  But I have to admit that the last year, I became less than 100% compliant.  It wasn’t the pain of injection for me however.  I had a routine where I would inject after my shower in the mornings.  But I became depressed and was not showering every day.  I then started skipping injections as well.

    After relapsing and progressing, I researched other treatment options.  Between my neurologist, rheumatologist, and myself, we agreed to try Rituxan.  I’m so glad that we did as it has worked for my RA and MS.  My MRIs have not changed at all.  No new symptoms to speak of (although my old ones are still there to varying degrees).  I’m stable!  I’m fortunate that the drug works for me.  🙂

    Lisa

     

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    • By annabw1948

      I am at a turning point I t hink. I have had no changed on my MTI since 2012, no new or active MS. In 2012 my avonex quit working and I noticed late in day I had slowed down with my walking drastically. Since then I have been on copazone 40 but am now having all kinds of issues with walking and balance. Just had another MRI and no active lesions or new ones. So why am I having all this difficulty? Maybe the medicine is not working? is that possible?

      Anyone out there who has had this happen or has any ideaas, please reply. Thanks,
      anna Williams

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  • By Cathy Chester Moderator

    When I was diagnosed twenty six years ago there were no medications available. They told me to go home and rest.

    I jumped at the first FDA approved medication, Betaseron.  Finally, an MS drug!  I began experiencing stomach problems and soon stopped using it.

    Then Avonex came out, and I was signed up to use it the day it was approved.  But once again, disappointment visited my door.  Stomach problems ensued.

    Finally Copaxone was waiting for me.  I’ve been on it for 16 years with no side effects.  (I am also a Peer Advocate for Teva Neuroscience, the company that manufactures it.)  So far so good.

    When I was first diagnosed I said an oral medication would be the next best thing to a cure.  Perhaps, sometime in the future, I will switch to an oral.  For now, I’m doing well on Copaxone so I’ll “stick” with it.  (Bad pun, I know!)

    Here’s to good health to all of you,

    Cathy

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  • By Cujomom

    I am on Copaxone and have become lazy getting my shots. HOnestly, some days I just don’t want to. I am hoping my doctor and I will discuss one of the oral meds at my next appointment.
    I guess my question is: are there withdrawal symptoms from Copaxone? I have been feeling no so well, diarrhea, headaches, tired, spacey. Could these be from lack of consistent Copaxone in my system? I am trying to narrow down why I am feeling this way.
    Thanks

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  • By Laura Kolaczkowski

    Cujomom, sorry I am just now seeing your question. There are no withdrawal symptoms from Copaxone. Depending on which drug you are moving to, you may need a brief washout period off the copaxone to allow it to get out of your system entirely. The best therapy you can be on is the one you are able to take and tolerate. I switched after the fatigue of copaxone daily injections got me off schedule. Being non-compliant isn’t a choice if we want to keep the MS quiet. Please talk to your doctor about making the switch, but keep in mind they also have side effects that can be unpleasant but manageable at first.

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  • By Cujomom

    what did you switch to?
    I’ve asked this before but can fatigue be sleepiness? I love to nap on the weekends, I love to go to bed early, I love to sleep.
    There are some days that I just don’t want to do the shot. I have been injecting for the past 5 days in a row to see if that might make me feel better. I don’t notice much of a difference. Could be other things.
    I don’t have too many symptoms from my MS, just spots of tingling, numbness in my feet. Maybe I am experiencing fatigue too…

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  • By Firgirl

    I will be starting tecfidera in the begining of next week. Any suggestions anyone has on this drug would be very helpful.
    Kferguson

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  • By AlbaB

    Hi Everyone! Im new here. Just wanted to give my experiences with MS and medications. I was dxd in December 2001. I had 4 “second opinions” until I finally “accepted” it. I started on Betaseron and was on it for quite a while and was doing well. That is until my neuro (who is fabulous by the way! :).) told me that my liver did not agree. So he switched me to Copaxone. I was on it for several years and it wasn’t until recently that I just totally stopped taking my shots – which by the way, I DO NOT RECOMMEND OR ENCOURAGE anyone to do this! I don’t know why…maybe it was because I was depressed or just plain sick and tired of MS. I knew that oral meds were on the horizon and my neuro had suggested a couple that would be good for me. Namely Tecfidera. So I waited. I told my neuro team that I wasn’t on any medication (at this point it had been 3 months) and they advised that I should continue on Copaxone until I had the green light for Tecfidera. Well the time came and I am now on it. I am glad don’t have to inject myself everyday but let me tell you that the side effects I experience: flushing, heat wave, burning and itching are horrible!!! I practically tear my skin off. I turn beet red. But it goes away in a couple of hours. I hope this is just temporary! Im sure it will affect everyone differently just like MS but I am sure glad the “shot days” are over!

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  • By Stacy

    Dx’d in 1985 when there were no dmd’s for MS. FAST FWD to 2010 when there was no more denying that “something” was very, very wrong with me! DX’d immediately w/ SPMS…& after putting out the fires (active dz)- I started Gilenya. That was 3 yrs ago. Today I just got back the results of my latest MRI — no active dz and no disease progression! I thank God every day for this wonder drug! 🙂

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  • By tahohvn

    Hi–this is my very first post here…

    This might sound crazy but ever since I started Extavia in May, my hair and fingernails are growing super fast! Is this just a coincidence since I can’t find any information about it
    online.

    Thanks!

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  • By Livingston

    Anyone have any knowledge/experience with getting OFF Tecfidera? I just stopped taking it a few days ago – and still have the fatigue and awful tasting water side effects. Nausea took a few days to go away, almost completely gone, but it didn’t quit right away.

    Seem to have more headaches than usual (altho I recently found out headaches are a symptom of MS-have had for 29 years and just found THIS out! Always something to learn…..) but that is about it.

    Anyone else have any ideas?

    Thanks-

    Livingston

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  • By Kiwi

    Hi This is my first post. I was dx’d in 2003 and immediately began using Avonex. I have briefly used Rebif with good result but found out I was allergic and went back to Avonex. Tried tysabri when it was reintroduced but had horrific side effects and had to stop. Back to Avonex. A recent MRI revealed 11 new brain lesions and 1 lesion on cervical spine. I am now taking Tecfidera on day 15. Barely any flushing and mild GI upset. However since day 2 I started having PVCs daily starting after 30 mins from dosing. My Neuro has dropped me to half dose until a cardio clears me. I’m also having joint pain in knees, hip area and wrist. New Sx.
    Has anyone else experienced these side effects while taking Tecfidera ?

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  • By Kristin

    I have been on Avonex for almost a year now but have found myself straying on the compliance… My mother and my aunt suggested I look into Gilenya. Has anyone here taken Gilenya yet and what experiences have you had?

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    • By Laura Kolaczkowski

      Kristin, I do not personally take Gilenya, but there are many happy people on this drug. I have heard of very few people stopping Gilenya because of anyu problems. I hope your neurologist had a good conversation with you about this idea of changing. As we hear over and over, the best therapy for us is the one we will take and remain copliant with. good luck, Laura

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  • By 69mustang

    I am traveling to Germany this week to receive Lemtrada. I started a blog with the information I have gathered for patients who are seeking Lemtrada therapy.

    If you would like to learn more go to Lemtrada.blogspot.com

    If ths informational is helpful to you please ‘like’ the page so more MS patients might see this blog on an Internet search.

    I am hoping to share the information I have gathered with as many people as would like it.

    Take care,
    Emma69mustang at gmail .com

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    • By Laura Kolaczkowski

      Good luck with this trip – I will definitely be following your experiences with Lemtrada and traveling to Germany for treatment. I have lots of questions, but will look at your blog to see if the answers are there – especially why Germany and not Canada? good luck, Laura

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    • By Laura Kolaczkowski

      Good luck with this trip – I will definitely be following your experiences with Lemtrada and traveling to Germany for treatment. I have lots of questions, but will look at your blog to see if the answers are there – especially why Germany and not Canada? good luck, Laura

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  • By 69mustang

    I went from Trsabri to Gilenya & felt awful. It was like my MS wasn’t being treated at all. Even though I am JCVAb + I went back on Tysabri because I had no quality of like on Gilenya.

    Now I am off Tysabri & traveling to Germany next week to start Lemtrada.

    Best of luck to you!

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  • By Ines

    Hi

    I have had ms for 10 years was on betaferon for two years it didn’t suit me then sent on a gluten free diet was in 2009 I was very lucky my ms went dormant this year my ms has relapsed I have the remitting one. So far I have been off work for six weeks it will be in total 9 weeks. I am 52 years old My neurologist wants be to go onto tysabri. I was wondering if anyone is on this drug and how if they feel better on it. Very confused re this

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  • By 69mustang

    I really liked Tysabri. I was on it (with a few interruptions) for over 6-7 years. I found the once every 4 week dosing easy. I usually read or slept for the 2 hours (1 hour infusion + 1 hour monitoring). When I first started the drug (I had 3 starts) I would feel tired for the first 24 hours but had no other side effects.

    I am sure your neuro is aware of the main complication of Tysabri- if you have been exposed to the JC virus (JCV)- and more than 65% of the population has- the longer you are on Tysabri the greater the risk that the JCV will activate into the infection it causes called PML.

    When I first started taking Tysabri I knew I was + for the JCV (I had it in my blood) back then we could only test + or – . I decided to take the risk because I believe in taking the strongest stance against MS.

    We now are able to measure the quantity of JCV in your body, this is called your JCV Antibody titer. Your neuro will look at your titer + the # of years you have been on Tysabri to determine your risk of the JCV in you body activating into the disease PML.

    There is an easy to understand graph for this- google it or ask your neuro to show it to you. The risk of PML is extremely low for everyone in the first 2 years and even after that you have to have a very high titer to increase your risk.

    PML is treatable but best caught early or avoided all together. Working closely with your neuro & understanding your unique risk is important while taking Tysabri.

    Tysabri is a great drug but does have this one caveat. Only you can decide what is best for you but having good information helps you make the right choice for you- keep asking questions until you feel right about you decision.

    Take care!

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    • By Ines

      Thank you for the quick reply my neuro has done the blood test don’t know the results yet until 6 may when I see him next he only want me on it for two years. He is one of the top neuro in Australia. I think at the moment tysabri scares me a bit.

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  • By 69mustang

    Here are two resources for you. The first is the most recent at risk table for Tysabri PML risk :

    Another resource is this paper issued by Biogen last summer. I think there has been an update to this data but the graph on page 6 is what will be most helpful to you:

    http://www.docstoc.com/docs/document-preview.aspx?doc_id=168800294

    for reference my time on tysabri was over 48 month and my titer was 2.05 (off this graph)

    But for example if your titer is less than 1.5 you have a VERY low risk of PML through 48 months- 4 years. I know many neurologist pull patients off at 24month but I believe this is only warranted if their titer is more than 1.5. If your titer is less than 1.5 you are with the same safety window you were in for the first two years.

    What scares you about this treatment? Personally i fear the progression of MS more than almost any side effect- which is why I took the drastic measure of traveling to Germany for medication (Lemtrada) not yet approved in the US- it is approved in Australia but I dont think your pharmacy board has released it yet. Lemtrada might be another option for you if you dont mind having routine blood work every 4 weeks for 5 years.

    I hope this information is helpful!

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  • By Ines

    I am not sure what scares me the most. One of the first paragraphs in the pamphlets I have been given says this medicine may cause death which my neuro related as the same as being in a car accident. I do have horribly thin veins to get blood out of I know it’s going in. It’s finding my veins are a problem.

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  • By 69mustang

    Nurses at infusion centers here are quite good with venous acces. Mine used to be easy but with many years of IV therapy & steroid therapy (this med is esp caustic to veins) mine are now bad.

    I just had Lemtrada. Which is given as an IV for 5 days straight & then nothing until 1 year later, when you get the same trestment for 3 days. Once or twice they had to look for a new vein but the doctors in Germany were able to get 5 good veins in 5 days. I was worried like you and it amazed me they were able to get veins for 5 straight days. Maybe this would suit you better.

    There are Orals- Gilenya & Tecfedera (May have slightly different names in Australia). Those would be options. If it were me I would do Lemtrada, which haults MS & may reverse some damage. None of the others do that. I am unsure of the availability in Australia. It is approved there but you Board of Pharmacy was holding things up. Your doctor can better advise you that me.

    In the meantime you should consider 3 things to help regrow myelin & reduce stress @ the cellular level. These would be in addition to a main disease modifying therapy listed above:
    Clemastine (Tavist) 1.34mg 3 twice a day, old med for allergies can be sedating at first
    Melatonin 30mg at bedtime, so many benefits to this one
    In the US those two are available without an Rx, this last one you need an RX
    Prozac 40mg in the AM, Lexapro is in the same class & has also been studied.

    I takes all 3 of these.

    If you want the journal article to support these additional meds I can send the to you via email

    Take care

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  • By Ines

    Hi

    Thank you. I am pretty sure I am Prozac it’s called Lovan her flutoxine not share if that how you spell it. Does the melatonin help the insomnia because I have had that for years and I so over it. Unfortunately due to family reasons I am under a huge amount of stress. I am seeing my neuro next week so I will make a list re all the medications. I cannot take the tablet one because it causes bladder problems. I am having bladder problems which I am seeing a urologist in June re that.

    The journal articles would be appreciated do you need my email

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  • By 69mustang

    Fluoxetine is the chemical name for our Prozac.

    Melatonin is recommended for oxidative stress (stress at cellular level, noithing to do with cantankerous family members) and sleep and is neuroprotective.

    Sorry to hear about family stress. That makes everything worse. I am fortunate in that we repaired the relationships we could & moved on from the rest- and made peace with that. My husband & I are very happy with the outcome.

    For oral therapy Tecfedera is also a choice.

    So I would discuss MS treatments of Tysabri, Lemtrada & Tecfedera. Not necessarily in that order. I don’t know enough about your case to make a recommendation. I am not sure if Tecfedera is available down under. It is made by Biogen- same with Tysabri.

    Good luck with your visit. Let me know how it goes. I hope it is very helpful to you.

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  • By Carol

    I have been on Tysbari for about six or eight months and, unfortunately, I have already developed JCV and the neurologist is worried about PML. He said we are going to have to switch to oral therapies. I have heard of Gilenya & Tecfedera, but I think I have also heard that both of them have bad side effects. Any suggestions or recommendations?

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  • By 69mustang

    Where are you located?

    I went from Ty to Gilenya and had a lot of relapse. This is fairly common. Gilenya is simply not as strong as Tysabri.

    I am on Lemtrada now but I had to fly to Germany to get it, see Lemtrada.bligspot.com for that story on ongoing followup.

    It should be approved in the US in Nov or Dec. it is approved in almost every other country- UK, EU countries, Russia, Mexico, Canada, Australia to name a few.

    If you have any questions about the treatment please email me through the blog. I don’t like to put my email on open forums.

    Take care!

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  • By Carol

    Hi, thanks for getting back in touch with me. I am located in the United States, in a suburb of Washington, DC. I’ll check to see what the status of Lemtrada is here and I’ll look up the details on Tecfedera since Gilenya has too many side effects. Neurologist mentioned some new drug study which I don’t think I want to do. I do not want to take a chance that it might be a placebo. Neurologist is also taking me off of Ampyra, the so-called walking drug that didn’t do much for me, but I have heard others have raved about it. Hope you are doing well. Bless

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    • By Lisa Emrich Moderator

      Hi Tasha,
      One month is pretty early to notice how much Avonex may be helping you. In fact, it’s the type of drug which you may not know with absolute certainty how much it is working. Overtime injections do get easier. Many people on Avonex or any of the beta interferons will take something like Tylenol or ibuprofen before injections to help lessen the side-effects of the medication. Others might even give themselves the shot before bedtime to try to sleep through the yucky, flulike feelings. You can call the Nurse at MSActiveSource to ask about recommendations, or talk to your doctor.
      I wish you the best. Good luck.
      Lisa

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    • By Lisa Emrich Moderator

      Hi Carol,
      I’m also in the DC area (Falls Church). Did you see the recent news that Lemtrada was finally approved by the FDA for RRMS on Friday? That’s good news and definitely something you could talk to your doctor. There are so many choices now, it’s fantastic!
      Lisa

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    • By Carol

      Hi Lisa,

      I’m in Kingstowne, the Alexandria part of Fairfax. I have the Franconia-Springfield/VRE station right down the street from me.

      Yes, I did see the news about Lemtrada and have been reading everything I can about it. This is really exciting! I connected with another MS sufferer in Germany awhile back and she said that after all those treatments (12 weeks) she was cured of MS. I was on Tysbari for probably 8 months and ended up witih PML. I thought I didn’t have to worry about that for two years. Didn’t work out that way. I have been checking up on all the different treatment option programs so I will be ready to talk to my neurologist in a couple of weeks. After dealing with the Solu-Medrol and Tysbari infusions, I was really looking for a one-a-day pill. There’s Aubagio, Gilenya, and Tecfidera. But if Lemtrada cures MS, I am all for it. Are you going to talk to your neurologist about starting on Lemtrada?
      Carol

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    • By Lisa Emrich Moderator

      Good luck to you! I may ask my neurologist’s opinion on Lemtrada and whether he might be recommending it to his patients. But right now, I’m really happy with my treatment routine which include Rituxan and methotrexate. The combination is working really well for me (it treats both MS and RA). As long as I continue to do well, I’ll stick with it. I switched to Rituxan from Copaxone in 2009 and haven’t really looked back since.
      Lisa

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  • By Tasha

    I am on Avonex and truly hate the injections, they leave me feeling horrible for hours and my injection sights are sore for days. However this is what my doctor feels is best for me at this time, I have only done four injections so far so I am not sure if its just to early to judge how well it will treat everything.

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  • By AndreaG

      I have been recently diagnosed with MS. I have decided to try Plegridy. I would love any input . This is a very new drug here in the USA. I will be starting treatment the end of December if the out of pocket cost to me is not unreasonable, still in the pre-authorization phase.

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  • By 69mustang

    Plegridy does not have the efficacy of the oral medications or better still Tyasbri or Lemtrada. Ask for data from you doctor or MS center on how effective the treatment is against the disease.

    If you are going to take treatment, take effective treatment.

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  • By Laura Kolaczkowski

    AndreaG, so sorry to hear you have been diagnosed with MS. But I am happy to hear you are not waiting and beginning therapy immediately. May I ask why you chose Plegridy (it is basically the same as Avonex but is not given as frequently)? I don’t know your medical history so it would be hard to say if Plegridy (an interferon) is the right drug for you. learn what you can about MS – and be sure to find a doctor you really like and trust because this is a long term relationship.

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    • By AndreaG

      Laura- I wanted to just chat about my next phase of treatment. I have not had luck with my interferon treatment for my cervical lesions. Betaseron made me sick, lose weight and gave me stomach pains. I was on Plegridy 3 months and had a relapse, which is not unheard of but my new lesion is at C6-C7 and significant in size to where it effected my legs. I had done research on Tysabri and my doctor let me make a decision, give the interferon another 6 months or be proactive and go on Tysabri. Since my doctor is calling the interferons ineffective, I have been approved for Tysabri.My JC value came back at .46, just .6 above what a negative value would be. My doctor consulted with another MS specialist and they still recommended the Tysabri with close monitoring. I will be honest, I am still a little nervous about the treatment. The few people I know with MS are on interferons and have been for years. I know you are on Tysabri. I have read more positive reviews than negative. I guess the whole PML scares me even though my brain tells me I should try this next phase of treatment. I guess I just need to chat about this with someone who has first hand experience. Thanks- Andrea

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    • By Laura Kolaczkowski

      AndreaG,
      So sorry to hear these first line therapies (at least that is what doctors label them) have not been effective. How aggressively do YOU want to be in treating the MS? It is a matter of weighing the risk vs the reward. Monitoring the JC-V levels with MRI’s and blood work on a more frequent basis for people with the increased marker value, is pretty normal. But the final decision has to be made by you – for now Tysabri remains at the top of the group for stopping progression, although we have some new drugs coming (soon, I hope).

      My Tysabri tretments continue to go well and I have been on it for about 3.5 years and remain JC negative. good luck with this decision, Laura

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  • By AndreaG

    Thank you for the feedback. I have had a 15 minute chat with my neurologist (who specializes in MS) about the pros and cons of all the meds, the success rates etc., and since I am still working, I chose to try the twice a month injx. I don’t wAnt the risk of PML’s, I am concerned about flu like symptoms after injections, so twice a month versus 3 times a week suits me better. I realize it is new. I have read and been overwhelmed by a lot of information. I am not sure if my insurance will cover Plegridy, they may authorize the 3 times a week injection instead. I appreciate all the opinions, thank you.

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  • By Anne the Magnificent Mser

    Me I have tried just about everything. Was on Copaxone then Beteseron then back to Copaxone and then went onto Novantone and during this time I also was receiving plasamapharesis at least 2-3 times a week. When the Novantone failed to work I was put on the chemo drug Cytoxan plus the Copaxone plus plasamapharesis. It was amazing what it did for me. I started walking again by myself was stronger more active happy etc. unfortunately I had to stop due to an infection caused by one of the plasamapharesis ports and then my MS Neuro Kibd of blew me off. Little treatment was done but I saw an immunologist last Thursadsy and I am doubt my second round with Rituxan plus he put me back on Imuran and a drug called Mestinon which helps cause my nerves aren’t firing properly. I am also having IVIG treatments every other week. If I wasn’t having them I believe I would be going crazy from my Allodynia or severe progressive sensorimotor polyneuropathy and now complete autonomic neuropathy failure,

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  • By lannesmith

    I was diagnosed with Clinically Isolated Syndrome of Demyelination back in November, but they moved my diagnosis officially to MS in February. I have been waiting for medical appointments, and then prior authorizations to finally start my medication. I started Tecfidera almost two weeks ago. Overall I have tolerated the medicine very well; but I have had an increase in my migraine headaches. I was wondering if anyone that has used Tecfidera has had a similar experience? I do not want to switch medication and I am hoping the increase (migraines almost every day so far) might just be temporary side effect until my body gets used to it. I have medication for my migraines, but only enough for 9 headaches a month!! Any input is appreciated.

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  • By Steffybeth42

    I was on Tecfidera for a few months but was really ill on it. The lower starting dose was fine but when I moved to the stronger dose..that’s when the problems started. The flushes were very severe for me. .it was like taking sunstroke twice a day. I had terrible headaches which left me very drained. But the worst..the worst was the stomach pains-very severe and they left me bedridden for months. I followed all the rules and took the pills with food etc but it just did not agree with me. I was that ill that it was worse than a relapse. My MS nurse advised putting me back on the lower dose would be pointless as its the higher dose that is effective, so I had no choice but to come off it.

    I started Avonex last year andbits been great. I always tolerate the injections very well and Avonex is no difference. In July I’m moving on to Plegridy which is just the same as Avonex but its a once a fortnight injection-which is fine by me.

    Thats just my story. Every MS patient is different and many have tolerated it well..but its important to know all aspects of the drug-education, as always is vital.

    Best of luck.
    x

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    • By Kelly McNamara Keymaster

      Hi Steffybeth42. Thanks for sharing you’re experience and for being a part of our community! So sorry to hear everything you experienced with Tecfidera, and really glad to hear Avonex was so much better. Keep us updated once you make the switch to Plegridy. Best, Kelly, Community Manager

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  • By AndreaG

    Well, bad news today. I have had 2 Tysabri infusions and my liver enzymes are high and increasing after infusions. My neurologist says we have to discontinue the Tysabri. I can’t take interferons, I bruise severely and get awful stomach pains. She says it is best to be on something than nothing at all because of my last relapse. We have discussed Tecfidera and Copaxone. I am JC virus positive, but my value is low. Any input from people is welcomed. I have tried to read the prior comments but I honestly do not know what to do. I can’t do any treatment until my liver tests return to normal. Thank you.

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  • By 69mustang

    When I could no longer do Tysabri I switched to Lemtrada (see blog: Lemtrada.blogspot.com) and have experienced an overall improvement in my MS, so much so that I don’t really feel affected any longer.

    When I needed Lemtrada in April 2014 it was not approved in the US so I traveled to Germany for treatment (that is what the blog us about) but it is available here now.

    If you want to speak to other Lem patients there is a closed Facebook group, search Lemtrada for MS Treatment and request to be added as a group member. It is a closed group so that anything you post there can only be seen by other members of the group for privacy reasons.

    I am also happy to answer questions.

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  • By AndreaG

    I did chat with my neuro about Lemtrada. It looks like it is available in the DC area. She feels that it is too soon to try the drug. I am really concerned about trying something new because my body seems to be sensitive to anything pumped into it( side effects). Thank you for your input.

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  • By KHart322

    Hello, I’m new to the forum, but I wanted to know if anyone has heard of low dose neltrexone as a treatment for MS symptoms, or if anyone had tried it?

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  • By DarlaKaye

    Hi folks! Looks like it has been awhile since anyone has posted anything on this forum so I might as well throw my 2 cents in.

    I was diagnosed in April of 2014 and went on Avonex in May. I was giving myself weekly injections for over a year and my MRI’s showed no signs of active disease so my doctor considered me stable. But I kept experiencing new symptoms. My fatigue worsened, I started losing partial feeling in half my left arm and hand, I started itching and my hands started cramping up. I was very good at taking my Avonex. I didn’t miss a single dose and yet, I continued to feel like my disease was progressing despite the results of my MRI. My husband thought I should try Gilenya but there’s a reason I hadn’t chosen any of the oral meds when I selected my first DMT – very scary potential side effects! But, at my husband’s prompting, I looked in to Gilenya further and talked to my doctor about making a switch which she supported 100%. There are all kinds of things you have to do when you are preparing to go on Gilenya – you have to have an eye exam, a blood draw, an EKG and have your blood pressure checked. You then have to go off your previous therapy (Avonex in my case) for 2 or 3 weeks and when you take your first dose of Gilenya, you have to do it in the presence of a doctor and a nurse or MA and they have to observe you for 6 hours. This almost kept me from switching – what a hassle! I have a 6 1/2 year old and a 4 year old and my husband travels for a living. I have almost no babysitting support and I switched in the Summer before my daughter started school so someone would have had to watch both extremely active kids. But, Gilenya has a program where they pay for a doctor and an MA to come to your house and do your 1st dose observation in the comfort of your own home. They also are able to have someone come into your home and do your blood draw and EKG prior to beginning Gilenya. And they have this great zero copay program so, even though Gilenya is more expensive than Avonex, I pay less – I pay $0 for a better drug that is easier to take with no side effects. I experienced a fever every time I took Avonex so had to take Tylenol and Ibuprofen at regular intervals throughout the day. I don’t have to do that with Gilenya because I don’t experience any side effects. And I haven’t had a flare-up or a new symptom since I started taking Gilenya at the end of August 2015. I couldn’t be happier that I made the switch! It makes travel easier too – Gilenya does not require refrigeration or a Sharps disposal container.

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  • By Christina Mattoni-Brashear Moderator

    Hi DarlaKaye,

    Thanks for being part of our community and sharing your experience. Good for you, doing all the research and trying a new treatment that you were anxious about! I’m so happy to hear that you haven’t had any flare-ups or new symptoms, and that the switch is working well for you. Please let us know how you’re doing.

    Take care,
    -Christina (Multiplesclerosis.net Team)

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  • By LA703

    Hello all 🙂

    I was diagnosed in March of 2012 and went on Copaxone within a couple of months once approved. I was doing alright and great about taking it for the first few years and then I started becoming non-compliant in mid-2014. I switched to Glatopa in early 2015 and continued to struggle with taking it every day. Some day’s I’d take one shot in the morning, and then another in the evening to make up for forgetting a day earlier that week. By late October, I started experiencing new and worsening symptoms. The last few months have been utterly miserable. My January MRI confirmed new brain lesions so my neuro has suggested I discontinue Copaxone. How can something remain effective if I’m not taking it how i”m supposed to? He recommended Tysabri which I was slightly familiar with. I was excited about (not necessarily excited, but I can’t find the words) going on Tysabri after doing some research on it until I got my positive JC test results. Now I’m terrified. My level is only 0.77, but I’m just really concerned about PML. The symptoms are so close to everything I’m already experiencing now. I’m just wondering how to differentiate and when to call the doctor about it. If I called the doctor for all my symptoms as it is, they’d block my number!

    Any advice, tips or opinions are greatly appreciated.

    Lauren

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