Stopped Tysabri--now what?

[hackwriter]

I'm one fed-up girl. After a year on Tysabri, I decided to stop. During the past year I developed new lesions and my first herpes outbreak in 3 years.

I developed biliary colic for which I will soon have my gallbladder removed. Biogen just informed me that a small percentage of Ty patients develop gallbladder disease as a result of taking the drug.

I've also developed an enlarged thyroid and worsened MS symptoms. Besides that, I am such a difficult puncture that it has become an ordeal even to have a simple blood draw.

Ty was preceded by Copaxone and Rebif; one lost effectiveness and the other I could not tolerate. The injections caused lipoatrophy, rendering most of my injection sites unusable. No more CRAB drugs.

I do not want another immunosuppressant, nor infusion therapy, nor will I choose a drug with less than an excellent safety profile--so Novantrone and Gilenya are out.

Off-label drugs I cannot get excited about. Alternative therapies...let's not even go there...

I have my eye on BG-12, an oral immunomodulator on the fast track to FDA approval that has a good safety profile.

But, in the meantime, I am at a loss for the first time in my life. Megadose Vit D therapy? Oral prednisone taper just to smooth out my symptoms in the interim? At least these two things are safe.

Ugh!

Kim

[Redwings]

Hi Kim:
I hate to be the bearer of bad news...

...nor will I choose a drug with less than an excellent safety profile...

Once you start tinkering with the immune system, NO medication has an "excellent" safety profile. Would you settle for "pretty good"? In trading off safety for effectivity, the CRABs are already about as close to excellent as is available, and they're only "good." Fingolimod and BG-12 aren't out yet, and what looks good now might not look so good when they get into widespread use. Tysabri looked pretty good when it first came out, too.

Megadose Vit D therapy? Oral prednisone taper just to smooth out my symptoms in the interim? At least these two things are safe.

1) There isn't sufficient evidence that megadose vitamin D controls MS symptoms or progression.

2) You have to be on prednisone in order to taper it.

Also, prednisone is an anti-inflammatory (to the point that some consider it to be an immunosuppressant, which you already said you don't want), so it won't be helpful unless you have inflammation. Prednisone isn't a DMD and has no effect on the long-term progression of MS. It isn't the proper medication for management of symptoms that aren't caused by inflammation. Steroids will only get you by for awhile. And, most importantly, prednisone and other steroids aren't "safe" -- unless you consider diabetes, osteoporosis, bone death, glaucoma and cataracts to be safe. The long-term side effects of steroids can be so bad that the philosophy behind treating inflammatory/auto-immune conditions is to try to keep patients off steroids.

The safest thing you can do is to adopt a gluten-free, anti-inflammatory diet and get adequate amounts of exercise and rest.

Beyond that, low-dose naltrexone (LDN) appears to be fairly low risk, with the kind of safety profile you're interested in, although its effectiveness in slowing the progression of MS is still the subject of debate. If nothing else appeals to you, LDN could be worth trying. You can google it and search for threads about it here at MSWorld.

[hackwriter]

Thanks for the feedback, Redwings. I did consider LDN before starting Tysabri, but without clinical data behind it, I had crossed that off the list.

Now I will reevaluate that option. And, since I might be in a flare, I will be discussing a burst of prednisone when I see my neuro this month, it did help me last time I had these lingering symptoms. Since I only take it for a few weeks, I'm not too concerned about its immunosuppressive effects.

Thanks again for sharing your vast knowledge and thoughtful response. It's always good to bounce things off others to kickstart my thinking again.

Kim

[19447BW]

I am in the same boat - I was taking Tysabri for the last 7 months, and still continued to have flare-ups. Even though it is sometimes hard to tell, since I am secondary progressive and always in a "flare-up" of sorts. But I am sick of taking a medication that takes so long, has potential side effects and is showing no benefits at all.
The hard part is that I have NO clue what to do now. I have already tried everything out there. The oral meds that are coming out soon sound very dangerous.
There are no MS specialists in my area, and I am really getting frustrated, so I can definitely understand your frustration!
Keep me posted on what works for you- maybe I'll get some inspiration
Brooke

[Myoak]

Hello Kim & Brooke

Just posting an encouragement to keep looking for answers! A site I use often is www.msif.org. If you go there, click on "Research" then click "MS research Database". From there you can type in any subject you want to read about or, you can scroll down and click various topics. If you click "diet" there are several up-to-date references to Vitamin D research which may be helpful.

And speaking of diet, you may also want to google "anti-inflammatory diets" and check out those as something of interest. Keep looking, keep reading, keep researching. It is early, but to me BG12 looks very promising. All the best to you both!

[Sequoia]

And speaking of diet, you may also want to google "anti-inflammatory diets" and check out those as something of interest.

There is a lot of information on anti-inflammatory diets and diets specifically for MS (such as the Best Bet Diet and the MS Recovery Diet) on the Tara's Nutrition & Supplement Notebook forum.

http://www.msworld.org/forum/forumdisplay.php?f=70

[Myoak]

Sequoia, I want to take a moment to thank you for all the effort you make in helping so many who use this site. You are invaluable! There are loads of people who feel the same way I do. You are an amazing, talented, helpful person. We appreciate you more than you know. We are truly blessed by what you do. Keep up the good work.

[hackwriter]

Gallbladder removed this morning

Brooke, Myoak, Sequioa,

Thanks for your input. I have looked into anti-inflam diets and supplements in the past and decided to take a common sense approach to nutrition. I don't think of it as having an impact on the disease per se, it's just a good idea to eat healthy for everyone in general. I used to take Omega-3 fatty acids, CoQ10, and about a million other things, and then settled on a diet rich in fresh berries, salmon, veggies, and whole grains.

This morning I had my gallbladderr removed and I am recovering nicely. In the future, let's hope I don't have to lose in organ I really need!

For the moment, life is good.

Kim

[Myoak]

Vitamin D

Quoting a study and source for those who follow Vitamin D research ... "This interesting imaging study recruited 193 patients with MS and aimed to explore the relationship between blood levels of vitamin D metabolites and clinical disability and changes on brain MRI.

The authors found a statistically significant relationship between low levels of Vitamin D metabolites and degree of disability measured using the MS severity scale.

The authors conclude that Vitamin D metabolites have protective associations with disability and brain atrophy in MS.
authors: Weinstock-Guttman B, Zivadinov R, Qu J, Cookfair D, Duan X, Bang E, Bergsland N, Hussein S, Cherneva M, Willis L, Heininen-Brown M, Ramanathan M.
source: J Neurol Neurosurg Psychiatry. 2011 Feb;82(2):189-95."

Kim, you have a very sensible approach to diet. Personally, I didn't read the abstract as an endorsement of taking megadose vitamin D, but rather as making certain there isn't a deficiency. To me, 1500-2000 iu daily seems about right in order to protect against deficiency.

Glad you are feeling better!

[soccer3]

no meds

I've been were you are and as of today i just try to get thru the day. Crabs were ineffective, tysybri could not tolerate, ivig and plasmapheresis did nothing. I am now gulten free and do feel diet plays a roll in how I feel.

I've just put it in God's hands and am hoping for a cure or just a good day which I haven't had in many years.

Hope you find what works for you

Linda

[hackwriter]

Myoak,

Thanks for the citation. I've been taking 1500 IUs of D3 a day ever since my D-test measured only a 14. I haven't had a follow-up test yet to see if there was an increase.

Though I'm still skeptical about the megadose approach, I might follow the studies to see what shakes out down the road.

Kim

[hackwriter]

Linda,

Sorry to hear you've been down that road, too.

I just attended a meeting as a patient consultant to Biogen and they informed us that a drug is in the pipeline that performs myelin repair. Approval is about seven years away, but it's something to look forward to, right?

Kim

[MrsChip]

Limboland

Ive had MS for twenty years. Copaxone does nothing to help me. Avonex helped some but was taken off it due to low white cell count.
Was put on tysabri and felt the best I have in years only to get urticaria 1 hour after the third infusion.
In UK, NICE are still deciding if they will pay for it or not, In the meantime theyre putting me back on avonex in the hope that it might help in the interim before gilenya - better than nothing attitude.
They wont prescibe LDN in UK as they have decided it doesnt help.
I've put up with this nightmare for 20 years so surely, as a tax payer I shouldnt be told that although im still RRMS, ive run out of options?
I am taking high Vit D as I read the Vitamin D Revolution book and it did make sense.
Im doing that as I feel ive got nothing left to lose and am just praying that I can have Gilenya once the UK beaurocrats make a decision.
Earliest is 6 July which would be amazing but the deadline is 27 December so I can bet which date things will be decided in th NHS UK.
I dont know what to say as Im as fed up with it all, and out of options as you are.
Just try the Vit D (5000ug) once or twice a day. Cant hurt.
I wish you the very best my fellow struggling p'd off friend

xxxx