What would you do?

[Canary54]

I know people will say this is my decision; I'm interested in knowing what you would do in my situation.

I've been diagnosed for 8 years, but have probably had MS for more than 30 years. Have only had 2 exacerbations.... one in 1977 and one in 2005 that led to my diagnosis.

I've taken Rebif since my diagnosis, but have been off any DMD for 2 months while awaiting insurance processing for Tecfidera. Just found out I'm JCV positive.

I feel SO MUCH better being off Rebif.....almost like a new person. I'm considering not starting Tec due to JCV positive status and low relapse rate. Fatigue is almost gone with stopping Rebif. Main complaints are urinary retention (now cathing) and walking endurance.

What would you choose to do?

[MSer102]

If I were in your situation and have probably had MS for more than 30 years the chances are very high that I'm into secondary progressive and no medication is going to help. So I wouldn't take any DMD anymore - particularly not Tecfidera that's probably going to make me feel far sicker from side effects than my MS does. And with only 2 attacks in 35 years I'll play the odds that I'm not likely to have another relapse since I'm already secondary progressive.

I might try Ampyra to help my walking endurance but no more DMDs.

[bree2013]

Hmmm...

I've taken Rebif since my diagnosis, but have been off any DMD for 2 months while awaiting insurance processing for Tecfidera. Just found out I'm JCV positive.

I feel SO MUCH better being off Rebif.....almost like a new person. I'm considering not starting Tec due to JCV positive status and low relapse rate. Fatigue is almost gone with stopping Rebif. Main complaints are urinary retention (now cathing) and walking endurance.

What would you choose to do?

Hello Canary,

So hard to know what to do. I am newly diagnosed and have been on tecfidera almost 2 months now.

I understand your concern about being JCV+. Do you know your index number? There's a thread under Tysabri about PML risk factor relative to an individual's JCV+ index number.

If it were me, I would take into account a) my index number, b) age, c) my neuro's explanation of why he/she thinks I should be on a DMD.

You may have been very lucky to go so long between relapses and then started on Rebif after the second one. Who knows how you'd be if you hadn't started a DMD -- Then again, perhaps there'd be no change either way.

If you are completely opposed to Tecfidera after finding out your index number, etc, how about one of the other oral meds or Copaxone? Maybe you could try Copaxone every other day and if all goes well, continue as such. If you relapse, then do the daily???

You asked what others would do: I would try to take a DMD. I would find out the JCV+ index number and see what the odds are in developing PML.

Good luck in your decision making process -- as many have said before - if we only had crystal balls!

Bree

[Canary54]

I will check the value attached to the JVC positive result. I don't remember seeing one, but I'm sure it must be there.

Neurologist told me a couple of years ago that he would consider me secondary progressive, but feels that Rebif and now Tecfidera "might" offer me some protection from relapses. I've taken Ampyra for a couple of years. I'm fortunate to be one of the people it does help.

Shots don't really bother me; I asked to come off Rebif because I felt so crappy all the time. Liver enzymes were elevated.......higher than normal, but not terribly elevated.

Just got through a son's wedding and have a vacation in about 5 weeks, so I'm not pushing to start Tecfidera right now. And, the longer I go without a DMD the more inclined I am to go without permanently.

Thank you for your thoughtful advice.

[Jules A]

You didn't say how old you are which might make a difference in my answer but having to self-cath is pretty serious, imo. I would want to be on something to possibly stave off further progression.

Maybe consider one of the others that are available now? Good luck with whatever you decide.

[Kimba22]

I will check the value attached to the JVC positive result. I don't remember seeing one, but I'm sure it must be there.

Your neuro probably didn't test your JCV Index, just whether or not you were JCV- or JCV+. I think it's worth asking for this test if you don't find these results.

I didn't realize until recently how much DMDs were protecting my lesion load. That includes Copaxone and Gilenya. I'm also considered secondary progressive, and had to go off my DMD for several months due to a complication from a side effect. I'm assuming my new lesions are contributing to my new symptoms.

Good luck making your decision.

[Myoak]

Very interesting post, Canary. I’m sure there are a number of MSers in a similar situation. You asked that great question… What would you do?

First, I have to know more. You said you have had only 2 exacerbations in 30 years. I wonder if during those 30 years you have taken any short-term courses of steroids. If so, how many times? Sometimes our definitions of exacerbation, or flare-up can vary a little bit.

Second, have you had regular MRIs? If so, what did the last one show compared to the first? How about the last MRI compared to the previous one… any new lesions, any sign of brain atrophy?

Third, you mentioned “now cathing”. Something went on (MS?) between exacerbations to initiate cathing. It makes me wonder if other hidden symptoms of MS are causing damage below the clinical threshold… such as fatigue, anxiety, depression, cognition, or poor sleep. It makes me wonder if subclinical MS is using up reserve capacity and possibly MS is a little more active than I thought.

Fourth, I would want to know my EDSS. How has changed it over the years? Also, it is important to have a baseline for future comparisons.

What would I do? Feeling so well presently it is certainly really, really tempting to continue off DMT. But if I halted treatment I would want to closely monitor the situation. Don’t just forget about it and walk away. Continue to see the neurologist at least every 6 months, be examined with MRI to inform of any changes, have clinical examination to inform of EDSS changes. Your neurologist will be up to date on new meds coming out which could be of help.

On or off approved DMT, I would make absolutely certain I was getting enough vitamin D3.

On or off approved DMT, I would certain my diet is appropriate.

If not taking an approved DMT, I would take LDN since it is safe, low cost, was effective in one small trial of progressive MS, has no toxicity, was proven to benefit quality of life in a trial with MSers, has proven effective in a number of autoimmune disease human trials, and has a track record of not a single serious adverse event ever reported in any disease study involving adults or children. It does no harm.

Generally, I believe it is true that the great majority of people are better off treating MS than not treating it. But not everyone because each person is unique. Each person must choose for themselves but you know that, Canary. Good luck to you!

[Canary54]

I just turned 59. Self-cathing was at my request. I sought the advice of a urologist....neurogenic bladder prevented complete emptying so I constantly had UTI's. Diet modification and medications didn't work for me.....so on to self-cathing. I have to admit, instead of being the limiting, unpleasant task I anticipated....cathing has given me greater freedom to come and go without worrying about the location of the nearest restoom. I wish I had considered self-cathing 3 years ago.

I had an MRI in 2005 and another in 2009. Lesion load had not increased and the active lesions in 2005 (at the time of my diagnosis) were inactive in 2009.

Never on any steroids....never any visual problems. Per the radiologist, I have 3 lesions in my brain and 1, maybe 2, lesions in my thoracic spine. Most of my 'disability' is from the waist down. My walking speed and endurance has VERY slowly worsened over the past few years, but the neurologist always tells me that I'm "fortunate to have such a benign case of MS," and that he doesn't see a cane or walker anywhere in the near future. I work full-time, usually in excess of 50 hours a week. Sometimes I'm tired, but no more so than someone who is almost 60.....working 50 hours a week! Never a problem with depression.

I am currently taking both Vitamin B and Vitamin D3 supplements, but do not follow a Swank or other version MS diet. I also take Keppra, Zanaflex and Ampyra.

After all the advice I've received, I'm going to get through my vacation in September and then schedule another appointment with the neurologist to throughly discuss my options and implications. I'm fairly certain I've been secondary progressive since the relapse in 2009, but it took several years without relapse for the neurologist to make that diagnosis.

Again, thank you all for your thoughtful replies. Your input is exactly what I was looking for.