New to MS. Recently started Tecfidera and only got worse..

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New to MS. Recently started Tecfidera and only got worse..

Postby DaveP » Mon Oct 03, 2016 7:40 pm

Hi, I'm unfortunately new to MS. Male, 32 years old.. no MS in my family history at all. Borderline JC virus positive, but they want to re-test. (scored 0.42)

- Started in Dec 2014 with optic neuritis, one brain lesion, none on the spine. IV steroids and it cleared up quickly after that.
- November 2015 brain MRI - another brain lesion, no symptoms leading up to it.
- Took a while to get on a drug but started Tecfidera around June of 2016, full dose started in early July 2016.
- Early August 2016, relapse with nystagmus and oscillopsia. IV steroids and it cleared up in a few days
- Late September brain MRI showed a few more lesions, but small ones.
- A few days ago, another relapse. I couldn't sense cold objects on my left hand, left side of my body, left leg, left foot. No numbness or tingling, warm was fine, but cold didn't feel cold...
- Going on 1,250 mg of oral steroids tomorrow (the IV was annoying so giving this a shot) and getting a spinal MRI in a few days. Docs going to re-evaluate the Tecfidera.. either wait another 3 months or switch to something new now.

If I didn't know better I would say Tecfidera is causing this to happen. Would love if that was the real reason but I know it can't be. It's just a bit discouraging that the drug I finally got on may not be working and meanwhile my body is getting attacked worse and more frequently than before. Anyone else experience this? Any encouraging thoughts to stop me from freaking out a bit? ha.
Last edited by DaveP on Thu Oct 06, 2016 6:29 pm, edited 1 time in total.
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Re: New to MS. Recently started Tecfidera and only got worse

Postby Scott1 » Mon Oct 03, 2016 9:12 pm

Hi,

I'm not sure why you say the IV was annoying but it might help others if you could detail it.

In 2014, I was given Tecfidera. All was fine on the introductory low dose but when I took the full dose I had two visits from the ambulance and one visit to ER.

Eventually I got fed up with crashing to the floor and went back to casualty. They also had me on a beta blocker at the same time. My basic message to them was"you put me on these drugs and I'm not going till you do something about it". After consulting with the cardiologist and the neurologist they took me off the beta blocker and the Tecfidera. Then I started to improve.

Borderline JCV is like bordline pregnant to my mind. Having walked the walk, I would kick up a stink about taking Tecfidera in your case. They are only guessing.

Regards,
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Re: New to MS. Recently started Tecfidera and only got worse

Postby David1949 » Tue Oct 04, 2016 10:24 am

I came across an interesting article on this subject. http://www.healthline.com/health/multiple-sclerosis/jc-virus-risks-for-ms-patients#1
The article says
The JC virus can be activated when a person’s immune system is compromised because of disease or immunosuppressive medication. The virus can then be carried into the brain, where it infects the white matter of the brain and attacks the cells responsible for making myelin, the protective coating that covers and protects nerve cells. This infection is called progressive multifocal leukoencephalopathy (PML). PML can be disabling, even fatal.


The article names Tecfidera as one of the drugs that can cause that.

I think all of the DMDs for MS are immune suppressants, but most do not cause PML. However, they can cause other illnesses like colds, flu etc which might normally be controlled by the immune system.

So you might ask your doctor why he put you on a drug that could cause serious harm without first trying some of the milder drugs.
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Re: New to MS. Recently started Tecfidera and only got worse

Postby ElliotB » Tue Oct 04, 2016 10:46 am

DMDs may or may not work, nobody really knows for sure (and yes, I am on one but not Tecfidera). But there are many things you can do for yourself to improve your chances for good health over the long term. If you are interested please say so and I will be glad to share my thoughts...
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Re: New to MS. Recently started Tecfidera and only got worse

Postby DaveP » Thu Oct 06, 2016 6:30 pm

Scott1 wrote:I'm not sure why you say the IV was annoying but it might help others if you could detail it.


I have a 14 month old kid and she would try to rip it out of my arm!
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Re: New to MS. Recently started Tecfidera and only got worse

Postby DaveP » Thu Oct 06, 2016 6:32 pm

David1949 wrote:I came across an interesting article on this subject. http://www.healthline.com/health/multiple-sclerosis/jc-virus-risks-for-ms-patients#1
The article says
The JC virus can be activated when a person’s immune system is compromised because of disease or immunosuppressive medication. The virus can then be carried into the brain, where it infects the white matter of the brain and attacks the cells responsible for making myelin, the protective coating that covers and protects nerve cells. This infection is called progressive multifocal leukoencephalopathy (PML). PML can be disabling, even fatal.


The article names Tecfidera as one of the drugs that can cause that.

I think all of the DMDs for MS are immune suppressants, but most do not cause PML. However, they can cause other illnesses like colds, flu etc which might normally be controlled by the immune system.

So you might ask your doctor why he put you on a drug that could cause serious harm without first trying some of the milder drugs.


Its a very low chance and usually evident only in people with consistent low white blood counts. Bloodwork is taken every 3-6 months on Tecfidera to monitor and my most recent, a few weeks ago, showed no decrease from before taking Tecfidera.
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Re: New to MS. Recently started Tecfidera and only got worse

Postby DaveP » Thu Oct 06, 2016 6:51 pm

ElliotB wrote:DMDs may or may not work, nobody really knows for sure (and yes, I am on one but not Tecfidera). But there are many things you can do for yourself to improve your chances for good health over the long term. If you are interested please say so and I will be glad to share my thoughts...


Of course. what are your thoughts?
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Re: New to MS. Recently started Tecfidera and only got worse

Postby ElliotB » Fri Oct 07, 2016 4:59 pm

Some basic concepts that can help you, eliminate all stress from you life. Get plenty of sleep. If you are able to, take an afternoon nap. Follow any of the MS diets - find one you think fits into your lifestyle, they all seem to work for some but not all, so their significance may be less than many think. Definitely go gluten free (I would not follow any diet that includes gluten) and as sugar free as possible, including natural sugars (like in fruits). Also no artificial sweeteners. Do as much exercise as you can on a daily basis (if you don't currently exercise, start slow and build up). Have blood work done regularly and pay particular attention to you vitamin D and B levels, you want to be on the high end of these. There are many, many supplements you can take. I am happy to recommend some if you would like more info, again, just let me know.

As far as the Tec not working for you, I believe doctors consider 3 relapses within a 2 year period a sign that the DMD is not working as it should. DMDs typically prevent future relapses - the relapses you had were immediately after you started on Tecfedera and it likely did not have time to have any effect. What does your Doctor say?

FWIW, I had a relapse shortly after starting Copaxone which my doctor predicted based on a MRI at that time but have not had another (it has been 2 1/2 years). Whether the Copaxone or the other proactive actions I am taking or a combination of the two or neither is the reason, I can't say for sure. As about 80% of those with MS do reasonably well without interventions of any kind, so it is hard to know for sure.
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Re: New to MS. Recently started Tecfidera and only got worse

Postby HarryZ » Sat Oct 15, 2016 5:57 am

DMDs typically prevent future relapses


I believe that the people who make the DMDs state that these drugs reduce the number of relapses by about 30%. So over a 2 year period, if you were to suffer 3 relapses, these would be reduced to 2.

With the cost of these drugs along with the side effects, not exactly a great choice. And like you said earlier, nobody has ever proven that the DMDs do much if anything for your MS.

When Tysabri came out a number of years ago, the docs who prescribed the DMDs started to say less than flattering comments about the effectiveness of these drugs. Then when Tysabri got pulled, there was a lot of back tracking. And with the possible nasty side effects of the monoclonal antibody drugs it is very difficult for a new MS patient to try and figure out what to take...if anything.
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Re: New to MS. Recently started Tecfidera and only got worse

Postby tzootsi » Sat Oct 15, 2016 12:54 pm

Lots of people are having great success with Dr Coimbra's vitamin D protocol-
http://www.vitamindprotocol.com/dr.-coi ... tocol.html
Also look at Med-Day's website on biotin. This looks very promising for PPMS
http://www.medpagetoday.com/meetingcoverage/aan/51048
Thousands are now on one or the other, many on both. There are several facebook pages for both of these treatments.
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