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Interested in thought processes on getting on and off the pharma.

Our university freshman is JCV positive and on Tysabri.

He is amazingly OMS compliant (meditation the weak link but working on it).
Recognizing this is a highly individual and personal decision, we would still like to hear thoughts on the process.

More details: He is stable with a few intermittent symptoms that seem to correlate with overdoing it a bit (very active young man). Uhthoff's, Lhermittes comes and goes, some numbness. He will have another round of MRIs in November.

He is attending the OMS seminar in LA 30 October.

His neuro team supports CAM as adjunct to the primarily pharma approach.

He'd like to be drug free if the risk-reward calculation is reasonable.

How do you decide if the drugs are helping or the OMS program?

How much time do you give OMS concepts to kick in before you consider going off the meds?
A thought. As JVC positive I'd have an alternative drug in mind one you are happy with and researched. As long term your aim is to be drug free you'll have to include rebound profiles in your research. That way you have an eye on your long and immediate situation.
Hi Spodaddyo,

yes, this is a difficult question, on which I do not want to offer any advice, but as you are asking for opinions, even if they are personal, biased or not so well informed, here is mine:
I am a bit surprised that he is on Tysabri, as to my knowledge
a) Tysabri usually is used rather as a second line treatment (when other medication did not work well enough and MS progressed nevertheless aggressively),
b) Tysabri is accompagnied by PML risk (I consider PML shere horror! A friend of an aquaintance got it. She is now completely incapacitated, bedridden, does react somehow to hearing her Christian name, but not much more, I was told. MS in all likelihood would never have taken her to that state! Or only after decades.)
c) Tysabri produces a rebound effect. If it’s being discontinued, disease activity comes back with increased force, as Veg pointed out (Cf. https://overcomingms.org/news-research/ ... b-tysabri/ ).
As far as I know, Tysabri is considered by and large “safe” in respect to PML, even if a person is JCV positiv, as long as it is taken no longer than two years and the person had not been submitted to immune suppression previously. There is now research that indicates, that half the amount of Tysabri (only every eight weeks) might be equally effective, but would reduce the PML risk. See on this website under “Other MS News”, October 22, 2015, “Study into extended Tysabri dosage suggests PML risk could be reduced without affecting drug’s efficacy”:
https://overcomingms.org/news-research/ ... -efficacy/
Like Veg I would probably rather opt for another drug if I had to choose one for myself (But this is theoretical: I was never offered any drug except courses of steroids during relapses and never have taken any. By now – 16 years after diagnosis – I do no longer have relapses [so probably SPMS by now]). If already on Tysabri I would probably think about changing or I would stop after two years for safety reasons or – if only on half dosage every eight weeks – perhaps after one year more.

If I remember correctly, many people on this forum have taken medication for a couple of years and then stopped, when they felt a) that they had stabilized sufficiently and b) that the OMS diet and lifestyle had enough time to become effective (for some that may have been after 2 years, for some after 5 years [?]). I therefore think that it is a reasonable expectation that your son can stop taking drugs in the future. Whether in two years time or earlier or later, only he himself can decide. Although OMS supports a “Whatever it takes” approach, including drugs, there is quite a number of OMS followers who have decided to rely on OMS alone (as I do).

What is CAM?

I think there is no way to decide, whether the drugs or OMS did the job, when there is stabilization and improvement.

Perhaps the lipid profile of the blood (HDL and LDL cholesterol, triglycerides) offers a small clue as to whether OMS has already taken effect: If these levels are optimal, then OMS has started working. By “optimal” I mean, what Dr. Michael Greger advocates on his website http://www.nutritionfacts.org (see e. g. http://nutritionfacts.org/video/optimal ... rol-level/ ) or in his book “How not to die” (that is LDL below 50–70 mg/dl; overall cholesterol below 150 mg/dl, better lower).

Just my thoughts.

All the best for your son!

Zoë
I apologize, I didn't give much information to work with. We do know what a fraught and personal decision this is and very much appreciate being able to bounce thoughts and ideas off those who've been on this path and can share experience.

As I mentioned, he is very OMS compliant with the mindfulness aspect being a struggle he shares with many, it seems. Saying that, he's always had an "old soul," and his music and love of the outdoors hopefully help fill the gap. He is starting a meditation class along with university and I expect that shortfall will get corrected.

His vitamin D level is now in the upper end of the OMS range, he supplements with flax oil properly and the B vitamins appropriately, and his diet is amazing (for a student, especially).

I'm saying that in the 3.5 months since diagnosis he has taken charge in every way he can, I think.

Now, the drugs:

The immediate leap to Tysabri was eye-opening, to say the least. His neuro recommended it as the most aggressive defense for a disease that is very aggressive in this case. Although imaging isn't everything, his symptoms had been presenting for about a year or more in retrospect and the MRIs showed old and enhancing lesions in his brain and brain stem, and non-enhancing in his C- and T-spine.

So, his neuro recommended attacking the disease with everything available to stabilize him before disability progressed. He had a 3-day solumedrol push via IV then taper. When he had a few symptoms show up two months later they used two days with no taper. I noted that and was pleased that they didn't use the same treatment for every occurrence.

Both were effective.

They include Complementary and Alternative Medicine (CAM) in the plan and actually recommended the book OPTIMUM HEALTH WITH MULTIPLE SCLEROSIS by Dr. Allen Bowling as a guide. This reference seems to match pretty well with Prof. Jelinek's research and recommendations. They are familiar with OMS guidelines and support the program, even making sure we knew our daughter should be on Vitamin D3 supplements. Since OMS recommends doing whatever it takes we've felt the natalizumab was appropriate.

Since he's JC virus positive she has recommended an absolute maximum of two years on Tysabri to minimize PML risk. He is tolerating the drug well and says he doesn't notice any negative effects at all.

The hope/expectation is that one of the new drugs in the US FDA pipeline will replace Tysabri and sooner rather than later. His clinic is involved in the research about extending the interval for Tysabri infusion. They do not extend the infusion timeline until 9-12 treatments are complete based on their experience. Certainly we will be looking to this as a way to reduce PML risk.

We've also asked about the somewhat notorious Tysabri rebound effect.

It's our hope and expectation that his lifestyle changes can take effect, but in the interim it was too risky to allow the disease to progress unchecked.

Thanks again!
Oh, and Zoe, thanks so much for your continued feedback and great info.

I am so sorry to hear about your friend who contracted PML - it is a total nightmare and I can tell you we've had much lost sleep over the risk. It's an awful situation. I have been impressed with the protocols they've used for this drug, although I know they are reaction to the terrible PML cases it caused early on and the danger it poses even for those who are JCV negative.

Be well,
spo
Hi
I should perhaps add I have never taken DMDs and steroids only once. Hopefully you will get more thoughts from other members.
Can't remember if I have mentioned before but Future Learn has a course starting in September by Criag Hassed on mindfulness. It's an online free course approx 3 hours a week. Craig is brilliant I have heard hiom talk twice and you will I think in the one day event you are going to.
Thanks, Veg!

I will check that out and pass it along. I believe he is a speaker on the US tour, maybe?

Your thoughts on researching the path forward are exactly what we are looking for and what we are trying to do. Lots of uncertainty and "wait and see" going on, which is understandable.

But as we all know, taking as much control as possible, while acknowledging the fickleness of it all, has myriad benefits for everyone.

Thanks again!
I'm also thinking that you could consider doing the course as well, you also need to care for you to have all your positive energy and support for your family.
A personal opinion I will share for what it's worth.

Firstly, you, your family & of course your son are to be commended for everything you are doing.

I have to declare my position is that I think every lesion visible on MRI or evident clinically is a concern ongoing damage can be occurring which overwhelms your CNS's ability to heal unless stopped and I choose to add DMT's.

I have been OMS from 2012 when I was diagnosed but took a couple of months and a relapse to be fully compliant. My biggest failing and regret was underdoing the megadoses to get my vitamin D high enough. I started DMT as well but before it reached full activity I relapsed and it is only 4 years later that I am clawing back the ground I lost then, mainly independent walking, despite being free of further relapse and having stable or better MRI's.

At diagnosis I was offered tysabri. That was largely due to the multitude of lesions (impossible to count so many in brain and long continuous lesions in cord) of varying activity present & influenced by being unable to walk then.
I initially planned to start tysabri but in the fortnight until my follow up appointment I learnt about PML & rebound plus I had the thought that if I went straight to the most effective drug (at the time) & failed I had nowhere else to go. PML is my bogey man; I can think of nothing worse. The improvement I had with steroids & rehab undoubtedly influenced me too.

So I chose Gilenya instead. After the decision was made we got the results back for JCV & I am positive so I was glad I opted out of tysabri (but strongly endorse the information that risk is there but what I agree is acceptable for 2 years. It is just that you don't know if you will suffer rebound on cessation. Many who stabilise their disease will prefer to risk PML than relapse. There is excellent resources on the website http://multiple-sclerosis-research.blogspot.com/search. The include PML risk calculator, bridging strategies for switching to other drugs and a terrific search engine for an enormous amount of topics backed up by data and ms professionals as well as opinions from members).
Subsequent case reports have shown Gilenya is also susceptible to PML & rebound, just at lower frequencies. It does sway me to stay on it though rather than try stopping and trusting to OMS alone.
I now think about that leap but relapse & rebound scare me equally. Plus there isn't another drug currently available in Australia that I would take.

For what it's worth, If I had highly active ms I would choose alemtuzumab but it's risk-benefit is unacceptable otherwise. When ocreluzimab gets through the approval process I will look at it unless other considerations arise.

Sorry for going on so long but I respect the question and research you have done
All the best for you all,
Judy
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