What's the Tysabri/Solumedrol connection?

[lulu1981]

So I can't seem to pinpoint a real concrete answer anywhere, so here is the jist of the back story. I'm on Tysabri after being on just about every other drug I could take or find out I couldn't take, I'm JCV+ and I am due for my 7th infusion on the 10th this month. For the last 3 months though I've finally started feeling normal again- first time in nearly 3 years. Best 3 months of my life! I cannot even explain.

Until this last week, when things started to slip again, so my neuro wanted to start me on a 5 day solumedrol pulse (first once in about a year, I nearly forgot how much I enjoy, ack, ack, the wonderful taste it leaves in your mouth). But she was a bit concerned about it ending 5 days before my next Tysabri infusion is due, but decided based on how its take us literally years to get me to feel this good, we can't lose much ground and have to be very proactive- so we needed to start the steroids.

What no one seems to be able to answer for me though is what the acting mechanisms between the two is that may potentially occur which would give a medical professional enough to pause and give thought as to whether or not to administer in the first place.

Since I try to keep my spotty brain in as tip top shape as possible any more, and there is only so much Pub Trivia a girl can play, I do tend to ponder on silly questions such as these to occupy the other parts of my day. So if anyone knows I'd appreciate it!

Thank!

[MSer102]

I've done pulsed steroids before and I've never read or heard of anyone getting a monthly pulse over 5 days. The pulses I've read about are 1000 mg in one treatment one day a month or 1000 mg a day for three days every three months.

I haven't even heard of anyone getting a monthly steroid pulse on Tysabri because Tysabri is supposed to be used by itself. The official prescribing information for Tysabri says that its supposed to be monotherapy meaning the one and only therapy for the treatment of MS and Crohn's disease. Steroids for a flare are supposed to be OK but not regular use or a monthly pulse.

Anti-inflammatory medicines - which includes steroids - are also immunosuppressant in a way so adding any other medicine that can suppress the activity of the immune system can up the risk for PML.

In the part of the prescribing information for Crohn's disease it says: "For patients with Crohn’s disease that start
TYSABRI while on chronic oral corticosteroids, commence steroid tapering as soon as a therapeutic benefit of TYSABRI has occurred; if the patient with Crohn’s disease cannot be tapered off of oral corticosteroids within six months of starting TYSABRI, discontinue TYSABRI."

I think that's pretty clear that steroids aren't supposed to be used regularly with Tysabri. Its important to remember that what raises a person's risk of PML isn't the disease they have but is the medicines they're taking. The risk for people with Crohn's disease isn't the Crohn's but the fact that a mixture of Tysabri and steroids isn't good because it can suppress the immune system too much. People with MS have the same risk of PML so your doctor will really be increasing your risk of a PML infection by putting a person who is JCV+ on monthly steroids - especially for 5 days.

So the connection between Tysabri and Solu-Medrol is the increased risk for PML.

[finee9]

I've been on Tysabri 5 years, I'm JC positive as well. During my last infusion they did a blood draw and apparently they can determine how likely you are to develop PML. They want you to be below .9, I measure 4.9. I'm going to stop Tysabri and move to Tecfedera [BG12]. Before I start the pill I have to do 4 weeks 3 X per week of Solu-Medrol'

YEE-HA

[Myoak]

Hi Lulu,

You said this would be your first solu-medrol pulse in about a year. It is not unusual for MSers to get occasional treatment with steroids, even Tysabri patients, so go with your neuro on this one. 5 days is longer than most but that is probably compensated for by getting a smaller dose daily. Doctors have personal preferences just like anyone else. Based on her experience with you as a patient your neuro is making a call that she is in the best position to make.

It is speculation to say that the connection between Tysabri and solu-medrol is increased risk of PML when there is no scientific data available to support it. Also, as quoted, “if the patient with Crohn’s disease cannot be tapered off of oral corticosteroids within six months of starting TYSABRI, discontinue TYSABRI." This would be a case where someone was taking Tysabri and steroids together for 6 months. Lulu would be taking them together for only 5 days.

MSer102 makes some good points and some speculations which are pretty much on target but I don’t think she is suggesting you don’t follow your doctor’s advice. Your doctor will have the best handle on risk-reward for you, Lulu, as a patient she has been treating.

Best to ya!

[lulu1981]

Thanks everyone! Firstly I have to stand corrected- I used the terminology "pulse" wrong I believe- at least I think so- I was using it to refer to a one time treatment at the moment instead of a monthly dose. My brain is so spotty foggy right now, I hope that made sense.

Essentially steroids have the probability (as all drugs do or do not it seems when you get into reading pharmaceutical mumbo jumbo) to increase the chances of contracting PML but that is once again variable upon a million other factors?

So it's just another one of those big unknown kinda X's that we somewhat acknowledge back in our minds when discussing treatment with our Neuro's - Did I get that correct?

[Myoak]

MSer102 answered your question very well using sound logic. I have never seen a scientific study proving a higher risk of PML exists when steroids are used with Tysabri. But logic would say there is. As MSer102 pointed out steroids might weakening the immune system thus providing greater opportunity for JC virus to mutate into a dangerous form, or PML.

Your doctor wants to be aggressive and head off a MS exacerbation by using steroids but the risk of weakening the immune system gave her pause. Balancing risk and reward is the art of practicing medicine. Your doctor is an expert; generally I would go with the expert.

A metallurgist would probably know a great deal about his specialty and a neurologist would probably know a good deal about his specialty. Outguessing either one would be pretty tough for a novice. But the more we learn the better we will understand techniques and treatments.

Every time you learn something you will have a better understanding and a better conversation with your doctor and, will play an ever increasing role in your treatment decisions. You have a wonderfully inquisitive mind, congrats!

[MSer102]

Firstly I have to stand corrected- I used the terminology "pulse" wrong I believe- at least I think so- I was using it to refer to a one time treatment at the moment instead of a monthly dose.

Yes that's different. I've never read anything about there being an increased risk of PML from a steroid series to treat a flare. People sometimes do have flares on Tysabri and that's how they get treated so I think it would be reported if there was an increased risk from a one time flare treatment. I know that steroids increase the risk for infections in general but I haven't read anything about them increasing the risk for PML in particular. That might be maybe why you couldn't find anything about it.