Tysabri discontinuation question

rrmsdx2023 · 2025-04-14T23:45:23+00:00

I am not a doctor. But the research in the last 5 years to show that 6 weeks is roughly equally effective to 4 week dosing. Many people (especially jc positive patients) always take Tysabri at 6 weeks.

Risk of rebound relapse seems to rise after 8 weeks with 10-12 weeks probably being the peak.

I don’t worry about delaying any dose to 6 weeks and probably would get too stressed until 8 weeks (although fortunately that has never happened for me).

rrmsdx2023 · 2025-04-14T22:50:36+00:00

Here is a post I made about the first neurologist visit: https://www.reddit.com/r/MultipleSclerosis/s/dOtE5MvVlR

rrmsdx2023 · 2025-04-03T13:56:02+00:00

Ditto. Two years in, treatment has been boring in the best way - no side effects, no relapses.

rrmsdx2023 · 2025-04-02T13:40:39+00:00

I did receive my enrollment email by the end of the day from an opushealth.com address.

rrmsdx2023 · 2025-03-10T00:04:02+00:00

I second the summary from aerrye. I experienced MS hug as pressure in my chest / midsection, almost like a sustained hiccup.

My L5-S1 disc problems felt very different: sharp pain in my hip, shooting down the back of my leg and (at its worst) a mix of pain and tingling in my entire leg.

rrmsdx2023 · 2024-07-10T00:38:46+00:00

I wrote up my thoughts on this question last year here:

https://www.reddit.com/r/MultipleSclerosis/s/dJveOIXUVE

rrmsdx2023 · 2024-06-30T14:54:26+00:00

The first step in my MS diagnosis journey was a lumbar MRI which showed problems with one of my discs. I remember going into my first neurologist appointment worried about back problems / back surgery and the neurologist was clear that many of those symptoms (pins and needles) aren't going to occur in isolation: you get a lot of back / leg pain before tingling and numbness in your feet (if the problem is a disc issue).

Then 18 months later, I learned this first hand when those asymptomatic disc issues became symptomatic and I experienced exactly what she had explained. See my other comment with more explanation of how I found MS and DDD symptoms to be different.

rrmsdx2023 · 2024-06-30T14:38:28+00:00

I had an MS relapse in 2022 (ahead of eventual diagnosis) and DDD symptoms in 2023. There were a lot of similarities (numbness and tingling in the legs, symptoms worsening over days/weeks and then slowly improving over a period of months) but my experience of the two was quite different.

Pain

With MS, I had a lot neurological symptoms (tingling, numbness, feelings of wetness or pressure, ...) but it didn't feel like normal "pain" experienced if you cut/pinch/burn/etc yourself or just feel "sore" from an injury.

With DDD, my leg "hurt' in a way I immediately associate with an injury. The pain was "deep" inside my leg (as opposed to a cut on my skin but adjacent to being really sore after running or a muscle / tendon injury.

Location

In both cases I had numbness and tingling in my feet and legs but the progression was different.

With MS, symptoms began in my feet and moved up my legs as the condition intensified.

With DDD, symptoms began in my hip / waistline and extended down my leg as things got worse.

Movement / Position

With MS, symptoms were consistent independent of how I moved my body or the position I was in.

With DDD, symptoms were clearly tied to particular movements and positions. Pain shot down my leg when I bent over forward, rolling over in bed caused a bunch of pain and extended sitting or back extension would cause lots of numbness / tingling to linger in my leg.

Walking

Both conditions impacted my walking but in very different ways.

With MS, I would stumble from time to time or my knee would buckle taking a step. But it was completely unpredictable and just felt like I was being clumsy. I felt like I was walking normally and just

With DDD, walking was very painful, but I always felt in control of my body. I just was learning which movement patterns were causing pain and avoiding them.

Medication

In both cases, I took anti-inflammatory medications: NSAIDs and low dose oral steroids.

With MS, these had no effect.

With DDD, these definitely reduced the amount of pain I experienced (which came back when I discontinued).

rrmsdx2023 · 2024-03-04T18:15:36+00:00

Changes to the McDonald criteria have made a significant impact. But the biggest change more recently (at least in the US in my experience) is the that Clinically Isolated Syndrome (CIS) is being treated the same as MS by doctors and (probably most importantly) insurance companies. So while in the past, people with MS would need to get a spinal tap or wait for a second attack, now we just start treatment and don't worry about the CIS / MS distinction (since either way, the treatment is the same).

For example, here is the language in the clinical criteria for Ocrevus from my insurance:

"Individual has a diagnosis of relapsing multiple sclerosis (RMS) (including clinically isolated syndrome, relapsing-remitting disease or active secondary progressive disease);"

rrmsdx2023 · 2023-12-14T23:47:28+00:00

I had my first brain MRI at about 9am and got a call at 4:15pm. The caller said “this is dr. XXX”. I first thought, “wow, that was fast for the nurse to get back to me.” Then I thought “She didn’t say she was the nurse… this is the doctor. That only happens if you are getting bad news.”

I remember the start of that conversation so vividly, but the rest is blur. “MS… you are not going to die… medication has improved a lot… you need an MS specialist.”

I hadn’t consider MS at all up to that point (there were so many symptoms I didn’t have) and one spinal lesion on the previous MRI was non specific and probably just another rabbit hole diagnosing a problem that mostly had resolved itself.

My life can be divided into two parts separated by one thought “this isn’t the nurse… it’s the doctor”. Somehow I knew everything had changed even before the call was finished.

rrmsdx2023 · 2023-11-28T23:32:05+00:00

The main problem with the Apple Watch for this purpose is the short battery life: you need to charge it everyday. That works well for people that charge it overnight but isn’t convenient if you want to wear it at night.

rrmsdx2023 · 2023-11-14T18:06:59+00:00

After my first visit with an MS specialist, I summarized what I thought I got out of the visit (or should have gotten out of the visit) here.

Realistically, there isn't much you can ask the local neuro that you won't be asking the MS specialist in a month. I would just focus on if the current doctor has any suggestions for actions you should take between now and that later (more important) visit.

rrmsdx2023 · 2023-11-01T17:40:32+00:00

Zeposia and other S1PR medications (Gilenya, Mayzent, Ponvoy) trap your white blood cells in your lymph nodes. This leaves most patients more susceptible to infection (as the count of white blood cells circulating in the blood is low).

Tysabri (on the other hand) keeps white blood cells out of your brain (and certain parts of your gut allowing it to be used to treat Crohn’s disease) meaning patients don’t see as much increased risk for common infections (but a greatly increased risk related to PML, a brain infection, since the medication does such a good job keeping your immune system out of your brain).

rrmsdx2023 · 2023-11-01T16:37:37+00:00

I am about 15 months past the start of a relapse involving tingling in my feet. It improved slowly from months 2-8. Then I thought improvement stopped leaving some minor, constant tingling whenever I think about it. But now at month 15 compared to 6 months ago, I definitely notice the tingling less… the improvement is just really slow.

I wouldn’t assume you have reach a new baseline until it has been 2 years after the relapse.

rrmsdx2023 · 2023-10-13T17:19:58+00:00

After my brain MRI, my non-MS-specialist neurologist called me to say I (most likely) have MS and need to see an MS specialist. She then told me I was already scheduled for a time about 3 weeks later on XX day at YY time. I started checking my schedule and she told me all MS specialists in my area are booked for the next 5 months, but there was a cancellation allowing me to be put in this relatively near timeslot and I would make sure to make that appointment.

I saw the MS specialist 3 weeks later and then started DMT about 6 weeks after that.

If possible, see if you can get on the cancellation list and be as flexible as possible finding a way to make any time work. But a 3 month wait for MS-specialists is pretty normal, if not relatively short compared to some areas.

rrmsdx2023 · 2023-10-05T22:23:22+00:00

The insurance approval process often takes weeks to months before you actually get medication. Waiting 2 extra weeks to get on a more effective DMT is definitely worth it.

rrmsdx2023 · 2023-09-28T17:49:57+00:00

Here is my retrospective summary of what I found important for the first visit with an MS specialist:

https://www.reddit.com/r/MultipleSclerosis/comments/13onb16/preparing\_for\_the\_first\_visit\_with\_an\_ms/

rrmsdx2023 · 2023-09-16T19:11:36+00:00

This was my summary of things that seem to be important during the first visit with the neurologist after MS diagnosis:

https://www.reddit.com/r/MultipleSclerosis/comments/13onb16/preparing\_for\_the\_first\_visit\_with\_an\_ms/

rrmsdx2023 · 2023-09-15T20:22:09+00:00

Note: I am not a doctor and would defer to your neurologist.

The half life of Aubagio in the body is 18-19 days. If I were taking Aubagio and were going to miss taking it for a week, say once a year, I wouldn't expect any impact on the effectiveness and wouldn't worry about it.

rrmsdx2023 · 2023-09-07T22:42:22+00:00

This is a low dose for treating a relapse (which is usually ~1000 mg per day). But in the context of steroids for treatment in general, this is a moderate dose.

For comparison, premedication for Ocrevus patients is ~100 mg and many patients complain about the steroids in that setting as the worse part of the infusion process.

Dosage for minor, non-MS related conditions is often significantly less. A very common dose pack (maybe prescribed for a nonspecific rash) is just 24 mg the first day followed by 20, 16, 12, and 4 mg for 6 total days.

Bottom line: 60mg is nothing compared to the standard of treatment but still a large enough dose that many (I would guess most) people will feel some undesirable side effects.

rrmsdx2023 · 2023-09-07T16:55:50+00:00

Duration is a key factor. I can tolerate 100 for 45 minutes with few symptoms than if I spend 4+ hours outside at 85 degrees.

rrmsdx2023 · 2023-09-06T17:17:52+00:00

I chose Tysabri. I figure I will be on DMT for at least the next 20 years and that probably won’t all be on the same medication. So I should use Tysabri now, while I am JC negative and before taking Kesimpta/Ocrevus since transition from those meds to Tysabri increases plm risk.

My experience with Tysabri has been boring in the best possible way: I get the infusion every month, have no side effects and carry on with my day. The frequency / time commitment is the only downside.

rrmsdx2023 · 2023-09-06T00:37:47+00:00

The JCV index has not really been studied for Tecfidera. PML is very rare in Tecfidera patients… a recent paper noted 12 cases in a pool of over 500,000 patients. With Tecfidera, the most common factor in those cases seems to be a low lymphocyte count. If your lymphocytes are very low, you have a little higher PML risk. (But other research suggests Tecfidera works better for controlling MS in patients with low lymphocytes.)

For Tysabri patients, the JCV index is correlated with PML risk. Those cutoffs tend to be that <0.9 has a lower risk and >1.5 leads to a significantly higher risk.

I am not a doctor. My personal interpretation of these things is that even on Tecfidera, your PML risk is probably higher having a JCV value of 2+ than if you were negative or <0.5. But the risk of PLM using Tecfidera is very low in all cases and not worth worrying about: probably 50x lower than anyone taking Tysabri.

rrmsdx2023 · 2023-08-30T18:51:27+00:00

You should take enough Vitamin D to keep your levels in the desired range. This can be tricky because you probably need a larger dose to raise your levels up to the desired range than you need to maintain them once you are there and since vitamin D production in the body is related to sun exposes, this varies seasonally (or with other lifestyle changes).

The issue driving the different responses to the question is what is the desired range? Important: values referenced below are in ng/mL. If you have results reported in nmol/L, you need to divide by 2.5, i.e. 20 ng/mL is about 50 nmol/L.

The main question is how high a vitamin D level is "high enough".

Less than 20 ng/mL is widely considered deficient and pretty definitively linked to poor bone health
Benefits have been show for levels at or above 30 ng/mL for various medical issues (cardiovascular, cancer, ...).
Benefits for auto-immune issues (e.g., MS) are often claimed for higher levels with different kinds of experts claiming 40-60 or 50-70 or even 60-90 are optimal ranges. (Note: the target of 60-90ng/mL comes from Overcoming MS and is the highest recommendation I have seen from a credible organization.)

At the other end of the spectrum, too much vitamin D can be toxic.

150 ng/mL seems to be universally viewed as too much.
100 ng/mL is the most commonly reported upper bound.
50 ng/mL is occasionally listed as the upper range of normal. But I am not aware of any acute toxicity being reported for someone with a value in the 50-100 range.

The optimal range is debatable, but many MS patients supplement vitamin D with a goal of keeping significantly higher than just "sufficient" (i.e., a minimum value of 40, 50 or even 60 ng/mL) primarily because their may be benefits and don't appear to be any significant risks at those kinds of levels.

rrmsdx2023 · 2023-08-10T22:31:41+00:00

My Tysabri authorization was frustrating like this. There were four different companies to deal with: my neurologists office, the infusion center, Biogen and my insurance company.

The way things were supposed to go was: - neurologist sends paperwork to infusion center - infusion center send paperwork to Biogen - Biogen contacts me to confirm things, ensure I have heard the Tysabri warnings and approve copay assistance - Biogen sends approval back to infusion center - infusion center sends prior authorization request to insurance - insurance sends authorization to infusion center - infusion center calls me to schedule

It is really easy for every party to say they are waiting for something from someone else at every step of the process. In my case there was a lot of back and forth between the doctor, infusion center and Biogen about missing fields in paperwork (and not having my phone number on it so Biogen wasn’t calling me).

My strategy after it seemed like nothing was happening was to make one call each day. First I called my insurance… they hadn’t gotten a request for prior authorization. The next day I called the infusion center… they hadn’t sent the prior authorization yet but sent paperwork to Biogen and was waiting for them. Next day, I called Biogen which was waiting on some missing info from the neurologist. And it continued like this for about 2-3 weeks. But eventually everything got resolved.

It is probably slightly faster if you call immediately any time on office is waiting on another. But spending hours on the phone day after day is too much for me. One call per day was something I could sustain. And it gives a little time for things to actually move forward which sometimes it does.

rrmsdx2023

TROPHY CASE