My 38 yr old daughter was diagnosed in January with MS. Her neurologist’s nurse practitioner told her her MS was raging and that she was riddled with lesions and that she was treating her with Tysabri to get it under control. My daughter just had her 2nd infusion and is feeling better.
A few days ago my daughter had a 2nd opinion. This neurologist showed her an MRI of a person with severe MS and put her MRI next to it. He told my daughter her MS was mild with not a lot of lesion. He said they were all old lesions so no new activity. He highly stressed she stop Tysabri and start Aubagio. He said Tysabri was too strong for her mild MS.
We are so confused and she doesn’t know who to believe? What should she do?
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Xristina
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Mild MS!? I don't like that term or his reasoning. I don't have many lesions but I do have a lot of disability. Old lesions can cause a lot of damage down the road. Tysabri was the first dmt suggested but I was JC positive. Was Ocrevus mentioned ? Perhaps a third opinion? Best of luck to you and your daughter. 🙏
And it really is important that she see an MS neuro/specialist over a general neurologist. Is there an MS / Neurology Clinic nearby? I have a local neuro but drive almost 8 hours to see my MS neuro, glad they have telemed appointments now.
She too has a lot of disability. They wouldn’t put her on Ocrevus because they are not listening to her try to tell them she doesn’t and didn’t ever want a child. She is planning to get a third opinion possibly with a MS Neurologist in Chicago. In the meantime, she has decided to stay on Tysabri, have a chat with that neurologist about the conservative second opinion, and see what they’re plan of treatment will be for her down the road. Thank you for your helpful response!
I can speak from personal experience about having a dual diagnosis and one doctor saying one thing and the other doctor saying another. When I was first diagnosed I was told by one doctor that I should take a mild drugs such as Copaxone and I got a second opinion in Boston and they told me that I had a very aggressive form of the disease and that I should get on Tysabri right away. My doctor at Dartmouth told me that he would not put me on Tysabri so I went with a middle of the road drug which was Tecfidera. I know it’s like Russian roulette and you never know what’s going to happen. Yet, I relapsed hard-core and now suffer a lot of the consequences. Shortly after my relapse my doctor at Dartmouth put me on Tysabri which was great since the damage was already done! I regret every day that I did not get on Tysabri right away and possibly would not have had the new complications that I have. I am not a neurologist, but I would say if the tysabri is working then to just stay on it. They say that once you’re off Tysabri you’re not able to get back on it. There also is no way of knowing if the new medicine is going to work. I would question if she is willing to risk a relapse? I personally stayed on Tysabri for years and it was working well until I got a new lesion. At that time, I then switch to Ocrevus. I would think any responsible neurologist would tell you to stick with the medicine that’s working as long as it’s preventing lesion progression.
Yes, she has decided to stay on Tysabri thanks to the majority of responses here pointing her in that direction. She is also anxious to discuss the second opinion with her current neurologist. She’s dealing with a lot of disability regardless of the number of lesions. She is hopeful now too that she may regain some of what she’s lost. I’m sorry you went through what you did and I thank you for sharing your experience. It’s been most helpful.
Sorry I DO NOT like Nurse/Practitioners Everyone I have had dealings with sound just like what was told to your daughter! Get a third opinion (mild) MS is an oxymoron as far as I know. When MS starts I guess you could call it mild. Each one of us who have MS is different from each other no two react the same way& the reason there are so many different DMTs out is because what works for 1 person doesn't work for another.Tysabri is good I loved it I was on & off it for 11 years. spread over about 15 or so years & 4 or 5 different neurologists I have a MS specialist right now & am on Ocrevus & doing good. I'm praying for you & your daughter. Mary
First, I’m so sorry about your daughter’s diagnosis. Honestly, I’d get a third opinion from an MS specialist. Sometimes I feel like each dr is different in what they prescribe/recommend. I think you should look for another dr’s input.
I'm so sorry your daughter is going through this and it is very kind of you to help her. I went through a similar situation in which one neurologist panicked at my MRIs, and another (who only sees MS patients) was much less anxious about my lesions.
I'm currently on Tecfidera which is a twice a day pill, but it has the some of the same side effects as Tysabri, including immunosuppression that can result in a condition called PML (Progressive Multifocal Leukoencephalopathy). My doctor has assured me that my Tecfidera treatment is fine for now, but it is not a long term solutions (i.e. I can't take it for ten or more years) because of the risk of PML.
As far as I know, Aubagio does not result in immunosuppression that can lead to PML. It can cause alopecia, but hair loss is probably preferable to PML which can be fatal.
It might be worth it to get a third opinion. Ask the doctor for the full rundown of side effects for each med they are suggesting. At the end of the day, your daughter knows her body better than anyone. It's her call, so it's up to her to take whichever treatment in which she feels the side effects are worth the risk.
I agree with finding a true MS specialist even if you have to drive a distance to find one. I believe there are preliminary results from a study looking at treating MS with one of the highly active newer treatments vs one of the older treatments and it showed using the stronger treatment from the start resulted in less disability in the long run. I will see if I can find that info and post it.There have been several new medications approved in the past 5 years.
Exercise and good nutrition are extremely important as well.
Not sure why when you click the link it says it doesn't exist but the menu bars at the top left work and will take you to the different pages on the site
Here's the correct link - for some reason the one you've posted has somehow got the word "professor" stuck onto the end of it thus making it an invalid link...
And Prof G' philosophy is "hit hard, hit early" and "time is brain". Here's a link to the "MS Brain Health - Time Matters" organisation he was instrumental in setting up
Tysabri is one of only a few highly effective DMT’s for MS. Doctors are beginning to prescribe more effective therapy as a first line treatment to keep MS from causing major disability. It used to be just the opposite. They would start with DMT’s that had few potential side effects and then move to the more effective DMT’s as MS progressed. The thinking now is to try to keep the progression to a minimum. She should see an MS specialist not a regular neurologist and with regular JCV testing Tysabri just might be her best option. I have taken Tysabri for years with no adverse affects.
I have about 250 lesions and still function perfectally, mild tingling in arms and legs, that’s all.I’ve been on Tysabri for 11 years, no change in MRI!!!
She needs an MS specialist if you haven't already. This whole trial and error, start we the weakest med ends up with progression in a lot of cases. I absolutely loved Tysabri. For me it was my 2nd medication. I had to take a "lower" med since I was "mild" I had 2 big flare ups during the 1st med. The only reason I stopped Tysabri was due to my body becoming resistant and creating antibodies to it. If she's already started Tysabri, I'd consider continuing it if she's handling it well with no side effects.
Tried it but all it does was s slow down the MS & that’s if it works. I moved on to HSCT. Had it in 2016 & it has stopped the MS progression. The funny thing is my nuero asked my why I want to doe. After the treatment she refused to see me. Gotta ask yourself, why don’t nuero’s want us healthy? I guess a patient cured is a customer lost.
I have been wondering how you are doing? Completely better now? Please let me know or please private message me. I would like to tell you about my experience with my ms, it’s amazing.
Hello. Everything is the e same. The treatment did its job. The only thing I’m left with is a limp & I sometimes get slightly off balance. Please tell me your experience.
I’ve had MS 21 years and my care was under the University of Pennsylvania and now at the University of South Florida. My neurologist old and new told me to keep on the less evasive meds until you need stronger. I just came off of Aubagio after 6 years because I had several exacerbation in January and March and I needed to up my meds. I just starting Tysabri 3/30/22. This is my 7th disease modifying therapy (DMT) since diagnosed in 2001. I hope this helps.
I have been on Tysabri for 14 years with no side effects and 0 exacerbations. My neurologist always tells me what a good drug it is and I have absolutely no complaints.
You’ve received some good advice so far. I just want to add that recent studies have shown that more aggressive treatments early on result in better quality of life and slower progression later on. As has already been mentioned PML is a risk but hopefully she has been tested for the JC Virus and if those levels are low then there is little need to worry at this point taking Tysabri. Knowing what I know now I would have chosen a drug like Tysabri when I was diagnosed but it wasn’t available then. I will also add that there many newer DMTs that have better efficacy than Aubagio and I would choose one of them instead TBH.
I would be happy to talk with her or you about it. I would go with the Aubagio it’s a great DMT. I didn’t have any side effects and I spoke to many newly diagnosed prior to Covid to answer questions. Please have her private message me on Instagram.
Does either neuro specialize in MS? If not, find one. Anyone who uses words like "raging" and "mild" sound like they don't get it. I see the neuro's NP now to handle my checkups. If anything would start to go south, the neuro would be right there handling any changes. He started me on my meds until I was stable. I take Aubagio now and have been on it for years. I had bad reactions to the 1st two meds. But that's what works for me now. Who knows how long I will be taking it. Hopefully for a long time as it's easy to take, I've been doing well on it, and so far...no additional lesions. Ask a ton of questions.
Call the National MS Society if you need more in depth answers.
I was diagnosed with relapsing-remitting MS 3 years ago at the age of 28. I was urged to start tysabri immediately. I started and it wasn't until then that i felt like I had MS.
I decided to go for a second opinion from one of the best neurologists in the country at John hopkins. They confirmed I had I had MS but was told tysabri was way too strong of a drug and completely unnecessary.
I stopped the treatment right away and felt normal again. I started looking into my original MS specialist who prescribed Tysabri and found out she was getting paid boatloads of money from the pharmaceutical company for every patient she has taking tysabri.
Long story short, make sure you can trust your doctor.
I can tell you from experience that Tysabri is a great DMT! If my JC virus antibody status had not jumped up so high I would still be on it. My issue was that that I had gone undiagnosed for nearly 30 years and when I was placed on Tysabri I had well over 100 lesions in my brain. It actually helped to heal some of those lesions and stopped any new ones from forming. Aubagio works a little differently and does not suppress the immune system but rather modulates it more.. I would look for a third opinion maybe from an MS specialist that can explain the differences in the different types of DMT's available. Drugs like Tysabri, Ocrevus, Mayzent are strong immune suppressants while Aubagio and Copaxane modulate the immune instead of suppressing it.. they all work for some people but they dont all work for everyone, so bear that in mind as well
i wish you and your daughter the best. I take aubagio. don't know how many lesions i have but i would have loved to take Tysabri. Unfortunately i am JC virus + so it is not an option. I was told Tysabri is the gold standard. Meaning few side effects and highly effective.
I’ve been too worried about PML risk to try tysabri, though its not been recommended (yet). I’m on Ocrevus and it’s ok. Walking is bad but vision bladder issues fatigue and other symptoms are ok (not that a dmt fixes anything) but walking feels like slowly getting worse. Tried aubagio and it did not work for me
Sorry to hear about your daughter's issues with this decision and what to do.Has she been tested for JVC? If positive then no Tasybri. To high of risk of PML. If she is negative then Tasybri is the way to go. In clinical trials Tasybri was the only DMT to be 99 percent effective.
If you research it Aubgio feel in the middle 60's for effectiveness.
I'm on Ocrevus and no new lessions. So it is doing it's job.
It has been a couple of years since I did that research and many new DMT'S have come out and I am sure some of them have a higher percentage rate.
And for the earlier comment regarding nurse practitioners you need to see a real doctor. I just went through an issue with my back and chronic pain. My Nuerologist ordered a spinal MRI. Her interpretation of the results were that I needed surgery. She referred me to Mayfield Clinic Brain and Spine. I met with a nurse practitioner who told me nothing was wrong. She offered me to see their pain management doctor. When he read the MRI he called and scheduled me for surgery.
I know this was not related to the topic but I wanted to get it off my chest.
I would be curious to know what the radiologist noted in the report...they sometimes comment that the disease is mild, moderate, or severe. They may also note the number of lesions and if they are active. My feeling on this is, it's going to be ok! She's currently being treated with one of the top choices and stopping it to switch meds is a process, I believe (someone feel free to correct me on this, but I'm thinking of tysabri rebound). She has time to figure this out, perhaps with a MS specialist.
I think that if her head really were raging and riddled, then the second opinion would have agreed with the treatment. I also think the second opinion could be risk averse or in the old school of escalating therapy, which may or may not be in line with your daughter's treatment goals. Her follow up appointment to discuss her second opinion will be very interesting!
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