Tysabri vs. Novantrone: Which One is Right for You?

Hello,

I was previously on Copaxone and could not stand the shots everyday anymore. So, i decided to go with tysabri. It was fine, no real side effects until the second infusion. My sex drive went totally down. I had no sensation around the nipples. Then i herd about the third person getting the brain disease so I stopped and now im back on copaxone. Only was on Tysabri for 3 months total.

I am about to have my 21st Tysabri infusion. I also follow the MS Recovery Diet” (no gluten, no dairy, no fun, etc. etc. )

For the first time in my 11 years of getting MRI’s, I have shown no further
brain deterioration. Since I’ve been observing the diet, I’ve had no major exacerbations. Time will tell if this holds up. My husband says ” whatever you are doing, keep on doing it. I’ve never seen you doing so well”.

Not one thing is right for everyone with MS. I have my energy and my cognitive thinking back, and it feels quite miraculous to me.

Trish

Tysabri is much more effective in treating MS and it is much more safer than Novantrone. This is like comparing apples to dirty gym socks. In the near term I see Tysabri continue to be the premier form of treatment for RRMS. 3-4 years out who knows, but for now Tysabri is a cut above.

I’ve done three IV bags of Novantrone and it’s saved my life. I was diagnosed a week before xmas last year and by Christmas Eve I was blind, couldn’t walk and slept 15 to 18 hours a day.

I can walk with a cane now, my vision has not been an issue since the first treatment and my endurance and energy is tripled.

I had a tubal ligation years before my dx so sterility isn’t a big deal. The only side effects have been a wonky menstrual cycle and hot flashes. I’m almost 35 so I know that’s a little early for menopause, but I suspect that it will come back quickly.

I have had two MUGA scans, an EKG and a visit with a cardiologist. I feel like I made the absolutely best choice I could’ve made. Once I max out the mitoxantrone (Novantrone) I hope to be able to go on Tysabri when it’s approved under the Province of British Columbia PharmaCare program.

I’ve taken Novantrone, and it really helped me. I feel that it was blessing from God, that I was introduced to Novantrone. I was completely aware of the side effects and the possible dangers, but I wasn’t going to let the fears stop me from doing what was best for me. After I was done with my Novantrone treatments, which helped me immensely, but in order for me to continue to do well, I was advised by my Neuro, to go on another MS drug therapy. I had tried other MS drugs, but nothing helped me, except for the Novantrone. Therefore, I was then introduced to Tysabri. I feel good about Tysabri, and I am aware of the possibility of PML, but again, I wasn’t and aren’t going to let that stop me. In the beginning, I was bed bound, in the hospital, had to have Occupational, Physical, and Speech Therapies. Novantrone was a gift by God for me. It gave me back my life and hopefully, Tysabri will keep me healthy.

I have been on Tysabri since last July (2008). It has been the answer to my prayers. Within the first 2 months I was walking better and thinking more clearly. Prior to this the interferons left me lifeless, so I decided that the risk of PML was worth taking compared with the way I was living. After being off of work for a year due to the MS, I was able to return to work part-time in September. My interest in life has returned.

Just last week I sat for my 9th infusion of Tysabri. Since day one, I have not had any side effects and this drug is a miracle worker. I have been able to discontinue two of my other medicines for the bladder and my balance is almost perfect. It truly has made a considerable difference in my life.

I have been on tysabri for about 9 months. I have noticed no change. I get headaches from the infusion and usually catch a cold shortly after the infusion. I have never been on novatrone.

i have had 7 infusions and no side effect except for tired night of infusion and day after. my energy levels have increased 10 fold. i now sleep 7-8 hours at night where before it was 10 and two naps a day. i have also changed my diet. i would say i am symptom free.

my above post i forgot to mention my 7 infusions have been of tysabri

I’ve had 5 infusions of Tysabri, and as everyone has said, it has changed my life. I was lucky to have only had one “major” MS attack in the past four years—the other two were quick and didn’t really leave damage. My MRI has improved—no new lesions and they’ve shrunk. As with Allan (#9) I just feel a little tired after the infusion—almost like I’m in a euphoric state. I was suffering BIG TIME from fatigue from the MS and the Avonex. I don’t have fatigue at all anymore. I noticed by the third infusion that I was back to the same energy levels before I even had MS. My cognitive skills have improved as well.
I’ve heard stories of people being able to see and walk again. And the fact that it’s a 1.2 in 10,000 chance of getting PML, it’s not even something I care to worry about.

I have had 6 infusions of Novantrone and am doing very well. I also take Copaxone daily. After the infusion, I feel fine and usually over do it since I feel so good. Then on day three I am very run down and tired. The Novantrone has kept me almost symptom free, and although I was very hesitant to start it, I have found it to be very helpful. The day or two of feeling tired and run down is very worth it for the rest of benefits.

I took all of the alloted 12 doses of Novantrone. My husband is an MD, and we decided to stretch them out over 4 yrs instead of 3. I finished over a year and a half ago, so after relapsing on Copaxone and Avonex, it was the only possibility then. I stayed stable the whole time, and of course got better than I was before. Another option now is RITUXIN if you can get it. It is an expensive monoclonal antibody (I think $11,000 for the 2 doses) and not yet approved for MS (although it has been used for years for other diseases). However, I took it a year ago when I had pretty serious bladder symptoms, and it has been a miracle for over a year (just 2 infusions 13 mos ago). The pre-med for the Novantrone made me constipated and I was tired and nauseated from the drug for about 8 days. The whole experience was pretty bad, but the trade-off was worth it for 4 years of lack of progression. Fortunately, my echocardiograms remained normal during the process.Yes, I did go into instant menopause, but I was 52 years old with my 3 children so it was ok). I am afraid to take the Tyrsabi, and frankly, would recommend neither Novantrone or Tyrsabri if given the choice. When my B cells start to rise now (I am checked every month), I think I will take the Rituxin again instead (no side effects, just an 8 hr infusion). My insurance paid for the Rituxin based on a New England Journal of Medicine positive trial of 300 MS patients which was published about 16 months ago). The drug basically has little risk of future problems and has no side effects. Best of all, it works!! I have an advantage of knowing about the drug from my husband who reads a lot, and my neighbor, who invented the drug while he worked for the biotech company who manufacturers it. When I asked my neurologist about it, he thought it was a great idea. Please look into it! Ann

I’ve been taking Tysabri for 2 years, 6 months. Not sure why you mentioned these two together given the limitations on and side effects of Novantrone.

Use of Novantrone is limited to a lifetime maximum dose due to cardiac side effects. Novantrone also has bad side effects (leukemia) that can occur significantly after (18 months or more) the last dose of the drug. Use of Novantrone prior to Tysabri could cause immune system suppression that may lead to a greater risk of PML when using Tysabri after Novantrone.

Patients may be better served in getting information on when the various drugs (all of them) should be taken based on risk/reward in relation to each other. Doing a Tysabri vs Novantrone poll does little for this education. What about Tysabri versus ABCRs? When should patients consider that change?

About 4.5 years ago, I was in a really bad place with my m.s. I had been on iv steriods and rebif and neuro knew I needed something more and fast. After all the tests to make sure I was a candidate I took novantrone and it helped me alot. At the time I could barely stand up without holding onto something, and after taking this I felt like a new person. I stayed on it for 4 bags and we are banking the rest (as my neuro put it) in case in future I ever need again.

Side effect wise I did go into premature fake menopause.. but that was okay with me.. and I just felt icky a day or two after. I didn’t lose any hair and yes my pee was a
little blue for the first few times, lol
I highly suggest this if you are in a bad way with your m.s. and nothing else is working.. Go for it!! Joyce : ))

Tomorrow I will have my 19th infusion of Tysabri. I honestly believe this medicine has saved my life! I tried the Interferons and Copaxone and continued to have exacerbations every six weeks. I was declining rapidly and MRIs showed more lesions (I have more than 60). The final exacerbation took me out of work permanently and that is when I discussed Tysabri with my neurologist. It really was the best decision I’ve ever made! I have MRIs done every six months and each one shows no new lesions or PML. Tysabri has stopped my progression thus far. My neurologist and I both believe I wouldn’t be around now had it not been for the medication.

I have been on Tysabri since it was re-released. It will be 3 years in September. I am thinking of going off, in spite of not getting new lesions, I have gone into secondary progressive MS. My face is getting scaly dry patches and it is contributed to the Tysabri. I feel like it must have served it purpose but right now is a waste of money as it is not slowing anything down. I have had no side affects until now, but it appears that because I missed 2 weeks, due to a flare that these symptoms are the result of developing a intolerance to the drug.

After being on Tysabri for five months, and during a highly stressful period as well, my MRI showed substantial improvements for the first time ever. I’ve now been on it another full year and have not had any relapses. I think the one or two cases of PML fall well within the tiny percentage of bad results from ANY drug. You shouldn’t be afraid of it.

Dear Chris K –

If you didn’t read the full text articles that are mentioned in the blog, I understand why you might not understand the point of mentioning these two drugs together. I make the point that both Novantrone and Tysabri are for the same indications – people with aggressive relapsing MS (or people who have moved into SPMS, in some cases).

I also cover most of the points that you mention, but you do make an interesting point about using Novantrone prior to Tysabri and that it may increase the risk of PML. Interesting point. I wonder (do you have any info on this) how long between the last Novantrone infusion and the first Tysabri infusion should elapse to minimize this risk. I know the typical “wash out” period is 1 to 3 months, but this might be a special circumstance.

Also, your point is well taken about the risk/reward analysis for each drug, but frankly, I think it would be almost impossible. There are so many factors to choosing a treatment for each person and we all weight things differently (apprehension about certain side effects, cost, fertility concerns, etc.) that I don’t think I could do it.

I will take your suggestion about writing an article on when people should consider switching to Tysabri from one of the CRABS – funny, I had an article like that started about 6 months ago and must have gotten distracted. Wonder where that is…

Thanks again to all of you for your comments and suggestions,

Julie (Guide to MS)

Julie,

I don’t know the recommended wash-out period for switching from Novantrone to Tysabri (as I switched from Rebif). The 1 to 3 month washout is for transition from the ABCRs I believe. I believe I’ve seen 6 months to maybe a year washout for some Novantrone patients. I would be concerned about whether this is long enough given the cases of Leukemia that develop up to 18 months following the last Novantrone dose – the drug effect appears to potentially last a long time in some patients.

Chris

I had my 19th and final Tysabri infusion this month.

I’m happy to hear how well some have fared with it, but, unfortunately, I can’t be counted among those for whom this drug is beneficial. I initially got some immediate effect (strength) from the infusion, but the effect was short-lived and now even that seems to have disappeared. I’ve been steadily declining for about three months (an increase in pre-existing symptoms) which leads us to conclude that a small lesion that had appeared right before I began Tysabri has not been adequately contained and may be growing. (Just a reminder – we’re all in the same boat – but may need different paddles!)

I can report a satisfactory result from a partial round of Novantrone a few years ago (quarterly infusions over a one year period). It pulled me out of a steep, spiriling decline and kept me stable for the following year. I had absolutely no adverse events with the drug ; no heart developments (and no lost hair!). Of course, now, I’m kind of regretting choosing Tysabri over completing the rest of the Novantrone therapy available to me. i think I was afraid to press my luck with it, since I was well out of my decline. (We make the best decisions we can at the time we make them. Live and Learn!)

I”ll be on 4.5 mg of LDN by Monday (was on it before for all of two months right before the Novantrone) and at my age (58) am feeling hopeful about getting away from the effects of all the heavy drugs to focus on natural heslth. I had some initial progress with LDN, but it seemed inefficient for what I was experiencing at the time. I think my disease process is trying to grind down to a halt, and some of what I’m dealing with now (high blood pressure) has more to do with “advancing age” rather than MS. I’m going to be refining my diet, downing mega-doses of D, maybe some minocycline, plenty of PT, and “chilling” while I work out the details of how I’m going to get my tummy-tuck/stem cell treatment!

2 weeks after my 3rd infusion of Tysabri I got really sick and had a violent attack where I could not breathe, crazy explosion feeling in my hips and was sweating, freezing and all extremities were shaking violently. I was so scared that I had to go to the ER, and my WBC count was off the charts.(higher than my father’s who has CML, leukemia) So high that I was sent to an oncologist. Everyone agreed for me to go off of it, but my neurologist wants me to start again asap since my counts went back down once it was completely out of my system. The oncologist, hematologist and internist think that I should absolutely NOT re-start it and that the same thing will occur again.
I was prescribed Tysabri after trying Copaxone and was allergic to that. Not currently on any meds and am scared to try Tysabri again, but feel wreckless by not taking anything. My neurologist says my fears are unfounded, and my physical reaction was a random fluke. He has ‘repremanded’ the other docs for their opinions because they do not know enough about the drug to dispense advice in his opinion.
Feeling sort of stuck……..

I have been on Tysabri since October 2007. I will be getting my 21st infusion on June 8th. I have some of the symptoms that these people are talking about. Tysabri has been good for me. I haven’t had any exacerbations since I went on it. My hands are still numb and that has never changed. My balance had gotten better but it seems to be going down like before. I walk with a cane and I have foot drop. These symptoms have never gone away and I was surprised to hear about the side effect of no sex drive. I didn’t realize it could be from the Tysabri. I have been struggling with this for quite some time and it never occurred to me that it could be from the Tysabri. Maybe I’ll mention it to my neurologist when I see her. At first I would have a lot of energy but now it doesn’t seem to last as long as it used to. Thank you for your comments. It has really helped me a lot.

I have been used novatrone for two years.
next mth will be another one.
I am a test rat for thai people of Thailand.
So far in Thailand only three person used novantrone. I am no. two.
So far So good it give me a break for almost 5-6 mths before the actack start again. At this time I have a lot of balancing problem just start on May. Also my left eye seem to be more and ore blur. But after the shot I will be alive and kicking running around can do many things. But the bad things is I have to hide away from people 2 weeks after the shot. I can be easily get desease. Cause the lower of the white blood cell.
But I thinks it’s good and would recommended to all of the MS patient.
Ekarat

I have been on Tysabri for eight years. I was a participant on the original combination trial. This trial was a double-blind trial where patients were treated with Avonex and either Tysabri or placebo. Only Biogen/Elan knew. Did the combo for 26 months until the first case of PML surfaced. After the FDA approved Tysabri with the required black box warning, we stayed on Tysabri as a mono-therapy. I am a 52 year old male still employed by a Fortune 300 and have not disclosed because I seem to be doing well. Please do not misinterpret my message. I still know and feel I have MS. However, I believe the statistics make this med worth the risk. Will share my experience with any serious inquirer.

35th Tysabri infusion yesterday. Diagnosed December 2005 with minor symptoms and in a wheelchair 9 months later. Used Rebif for the first six months which made me horribly ill everyday and didn’t do much to slow down the MS. First infusion was October 2006. Was able to walk again by February 2007.

Family and co-workers can really see the 28-day cycle as I am energized and very cognizant for two weeks after infusion then deteriorate greatly until the next infusion. We use SoluMedrol 1g every three months to bolster the Tysabri. This helps tremendously, but with the same type of cycle where I do very well at first and deteriorate rapidly before the next steroid infusion.

My symptoms range from being able to pull off looking normal to full-blown MS. Severe pain around my lower ribs requiring heavy narcotics (Duragesic, Percocet), severe neuropathic pain in back and legs, trigeminal neuralgia, strong full-body myoclonus spasms, spasticity (now at 60mg of Baclofen daily), dysarthria, dysphagia, diplopia, urinary urgency, footdrop, paraesthesia (hard to tell when my cell phone is buzzing), dysmetria (always knocking things over), ataxia, speech ataxia, impotence, dysphasia, and finally – fatigue reaching 20 hours of sleep a day near the end of the cycle.

I revealed my diagnosis in a very public way soon after starting Tysabri. The local CBS news broadcaster did a piece on me and the miracle of Tysabri. Very grateful to my employer and co-workers for their constant support as I am employed full-time(?) as an IT executive. I do need to work from home a significant amount of time to cope with pain and fatigue, but I am able to walk much of the time without a cane. Just bought an elliptical trainer to start working on fitness and find that high protein drinks (using egg whites) help a lot.

My wife says she gets me back every 28 days. My neurologist is absolutely awestruck every time I’m evaluated and he sees me continue to function. The MRI scans are revealing progressive and new plaques so while Tysabri is a miracle, new and better miracles need to come quickly. I’m keeping a close eye on stem cell therapies.

Who could ask for more? We meet so many incredible people because of my having this disease. Who has time for the usual tripe? Conversations and sharing are very real right from the get go. I’m convinced that we are all type A people who share this cursed curse.

Bless you and those who love you! This is a tough, tough road.

I was on Tysabri for 8 months, relapse free, and then stopped it because of the PML monotherapy cases, and had a new relapse 3 months later with new lesions on MRI, but not too serious. I went back on Tysabri, on my neuro’s rec, but she did say my relapse was very likely caused by stopping the Tysabri (documented ‘rebound effect’) rather than by my MS. I have also found Professor Jelinek’s website helpful.
http://www.takingcontrolofmultiplesclerosis.com

In reference to Darren’s note above. Would like to know more about high protein diets. I know it may be a different thread. Seriously curious.

http://forums.about.com/n/pfx/forum.aspx?tsn=1&nav=messages&webtag=ab-ms&tid=409

I just read the article written by Dr. Stachowiak comparing Tysabri and Novantrone:

http://ms.about.com/od/treatments/a/tysabri_vs_novantrone.htm

These two medications are nothing alike other than both of them being an infusion.

Novantrone has been proven toxic to not only the body but to the heart muscle in particular which can cause permanent damage. Tysabri is not toxic at all.

Furthermore, the washout time a MS patient previously on Novantrone that wishes to move to Tysabri is not 1 to 3 months, it should be a a minimum of three months (their neurologist should actually run blood tests intermittently to check the strength of the patient’s immune system). Each patient can check the NMSS website or the FDA website which discuss Tysabri for washout times.

The article goes on to state: “Novantrone (mitoxantrone) and Tysabri (natalizumab) are both used in similar circumstances to treat multiple sclerosis – for people with worsening relapsing-remitting multiple sclerosis (RRMS) or progressive-relapsing multiple sclerosis (PRMS). Novantrone is indicated for secondary-progressive multiple sclerosis (SPMS), and Tysabri may help out in cases of SPMS where active lesions still show up on MRIs, as well.”

This is not entirely true…, Tysabri is for “relapsing forms” of MS, which include Relapsing/Remitting, Progressive Relapsing & SPMS with relapses.

Under Effectiveness, the article goes on to state: “Tysabri has demonstrated a 68% reduction in relapses over two years, as well as slowing progression of disability and reducing number of new relapses. “, and yet fails to indicate TYSABRI is the Only Marketed MS Treatment to Show Both Significant Slowing in Disability Progression and Sustained Improvement in Physical Disability, as well as:

MRI Data Showing TYSABRI® Promoted Remyelination Presented at the 61st Annual Meeting of the American Academy of Neurology

– Additional data suggests improvement in TYSABRI patients across clinical and patient-reported outcomes –

As to explaining the actual Tysabri treatment, the article goes on to state: “You will be examined by a doctor or nurse and get an MRI before starting Tysabri, then examined every 3 to 6 months for neurologic changes. You will be asked to review patient safety information and fill out a short survey before each infusion”…, you are only examined for the first three months when starting Tysabri therapy, and then three months thereafter ( i.e., every six months thereafter or as your doctor determines).  Most infusion centers ask four questions of the patient just prior to the infusion (they are usually the same four questions), and the patient does not normally fill out a short survey before each infusion.
 
The yearly costs of Tysabri are comparable with the injectable ABCRs…, there are programs in place through Biogen/MSActiveSource to financially assist the patient in covering the cost of Tysabri.  Each patient should speak with their Tysabri Case Manager for more information about the Access program, and other programs which might be in place where the patient qualifies for said assistance…, they can also contact NORDs which can financially assist the patient that qualifies for up to $5,400 a year for the cost of the infusion, the cost of medication, and/or insurance co-pays, etc. NORDs can be contacted by calling:
 
Conditions: Multiple Sclerosis Contact: 1-800-634-7207
 
NORD MS Medicare Co-Payment Assistance Program Conditions: Multiple Sclerosis Contact: 1-866-924-0100

Tysabri is also covered 80% (I believe) under part B of Medicare, or covered completely under most insurance plans that have “Major Medical”.
 
See the following article wherein patients weigh the risks versus rewards of Tysabri:

http://www.chicagotribune.com/news/local/chicago/chi-ms-treatment-city-zone-20-may20,0,7650744.story

Most neurologists will pretreat their patients with an antihistamine such as a Benadryl drip for 30 minutes prior to the Tysabri infusion in to avoid/reduce any possible side effects which might occur, or recommend that their patients take a Claritin-D tablet approximately 30 minutes or more prior to their infusion… neurologists do not normally recommend corticosteroids be taken at the same time as Tysabri (which the article erroneously states).

For more information about the causes of PML in the patients which have taken Tysabri, please see the following chart:

http://pietynorwit.com/Tytable.htm

You will note that most of these patients had previously been on very strong immune suppressants such as Azathioprine/Imuran, Methotrexate, Novantrone, etc., which are proven to have lasting effects in the body (i.e. immune suppression) even though discontinued previously by the patient. Also, five of the six latest cases of PML were outside of the US, where there is no Touch program.

I’ve been on Tysabri therapy for more than two years & seven months, having just completed my 34th Tysabri infusion. If this medication was available earlier (and not temporarily withdrawn from the market) perhaps I would not have suffered a severe relapse in June of 2006 which left me wheelchair-bound.

As it is now, my MS is now stable and I have not had a relapse since starting this medication in October 2006, nor have my current MRIs showed any new lesions.  I am very grateful for Tysabri.

Tysabri is a medication not to be feared, but welcomed.

Lauren

My apologies that this is not a comment on Tysabri or Novantrone, but I thought my experience might be useful.

I’m still on Copaxone, which has worked well for me but, after taking it for 2 years, I continued to have problems with balance, transient vision problems and fatigue, and I developed almost intolerable pain, sometimes to the point that I could not stop myself from moaning and writhing. I did not want to go on pain med.s because of side effects and the fact that neuropathic pain is so difficult to treat that I might have no gain, only side effects. I’m an M.D. and did some research. I had already been taking Vitamin D3 (6000 IUs daily) but saw no effect. When the pain began occurring several hours a day I upped the Vitamin D3 to 15,000 IUs a day. That was 7 months ago. Within a week or so of upping the Vitamin D3, my pain was much reduced (3 out of 10 from 9) and life became worth living again. I can still feel that the pain is lurking, but it rarely becomes more than a faint reminder (down to 1 from 3 out of 10)of days past. My balance is better. I’m not fatigued. My vision is okay. I’m going to rejoin the gym. I’m working 16-hour days. There is ongoing research on Vitamin D3 that is producing findings consistent with my experience.

Hi,
Vitamin D is opening the door to natural healing a crack try opening the door all the way and go for it, the only think you can loose is unhealthy habits. Autoimmune diseases are interesting there are approximately 80 to 100 with another 40 waiting for a name and if you get one you will get another and so on. Medical science cannot explain why we have this autoimmune epidemic or why you have even one of these diseases. You can trigger one of them just by having an auto accident, taking aspirin or medication or by starting a new exercise routine, even too much stress says latest research. Naturopathic medicine says, “Look for the root, it is in the basics beginning with what is on your fork, what toxins are in your body, what exercise do you do, what stress is in your life, what is your spiritual base”. Scientific arrogance has led us down the wrong path we better stop and take a close look at what is happening. This month 150 new chemicals will be added to the 85,000 in the environment which are part of the autoimmune problem. They will be added too industry with no oversight control at all. Autoimmune disease is the worst kind of contradiction; for a sufferer you are attacking your body with your immune system, a world upside down. God bless you in your search.
Sincerely
Paul

I have had MS for 30 + years. I have been on Betaseron for 11 years. Things progressively got worse. 3 years ago I had a massive attack that left me with little mobility. February 2009 I started Tysabri. Going for fifth infusion next week. This wonder drug with every infusion is gradually returning – speech, memory, walking with a walker, energy and some balance. I can only hope with every infusion things will continue on the up.

i am on tysabri for over two years ,, so far so good.. the second month i was on it i had an allergic reaction.. so the doctor turned the meds off and gave me iv benedryl.. now i get my benidryl before the iv and i am fine.. i have symptoms still but so far they only last a day or two.. i am working a very stressful busy jpb.. murphy gas station cashier actually.. you gotta move fast to work at a place that one cashier brings in over 10 thousand dollars in the six or seven hours on the registar.. i have had ms since 1999.. i think im doing great so far.. hope it lasts .. got to think the positive.. attitude is everything with this disease.. anyone who has it knows you cant give up .. that means giving in.. but no other side effects have i had with the tysabri but the little allergic reaction at first and that wasnt even that bad…but it does still scare me to hear about the pml.. but i guess we take a chace with any ms treatment we choose… i just want to live my life as active as possible for as long as possible.. but with this you have to make your own choice.. its scary.. but so is being disabled and in pain.. god bless you in your decision making .. but it is YOUR choice…

Tina,
i was on betaseron for 10 years with minimal side effects. it seemed to be working very well. then i had a bad relapse and an mri showed two new lessions. my doc thinks i am now entering secondary progressive stage, so he switched me to tysabri. on the third infusion, i had a reaction and we taken off the tysabri and given iv benedryl like you. that helped. blood work showed no antibodies in my blood. i have an appointment next week to discuss my options. i am scared. i am only the 2nd patient to have a reaction in 4 years. all he treats is ms, so he gives many doses of tysabri every day. the other person was also a man, and next went on chemo. not sure about that. i will recommend your approach about iv benedryl before the tysabri. i think that will help. thank you for your story.

I did copaxone shots everyday for 2 1/2 years. My next MRI showed increased lessions I then took Novantrone. I took as long as I was allowed. It was wonderful. Almost everything bad I was experiencing improved. I then went on Tysabri as soon as it was available. I can not even tell that I am on it. No side effects but MS problems have increased.