My Aubagio observations

[laurasari]

I received a phone call from my specialty pharmacy. On Tues. I was already approved for Tecifidera. wow. That was fast.
One hour later I was at the neurologist and was shocked he was not excited for me to start so I am trying Aubagio again and if I get the headache again It is back on Gillenya for me and back off my beta blocker. I am JCV positive and he fears this drug and the drug used for psoriasis and has. Been linked to PML are to close. And the drug is to new.
Good luck
Laurie

[Michela11]

Hi guys I am aghast that I haven't posted for a while!

So - Aubagio update now mid August. Month 6 for me I think?

Bloodwork all over the shop.
Vitamin D was destroyed from excellent levels, for no reason really other than the medication.
Iron is exceptionally low. However, I struggle with iron levels and iron stores. Just cannot get doctors to take action on this! Still fighting.

Hair loss began. Not extensive, but noticeable. Has now backed off.

Occasional nausea. Is the medication. Doctors don't seem to care much.

Occasional diahorrhea. Doctors also don't seem to care much.

Now the clanger.

Terrible, awful, debilitating breathing problems that came on about 4 weeks ago and persist. At rest and on activity.

Neurologists say it can't be the Aubagio. Despite the company's own documentation on breathing difficulties.

Seeing GP. He knows nothing about the Aubagio so we've done chest X-ray (OK), spirometry (results not back), more bloods blah blah blah to try and find what is the cause.

I said to them "Do NOT tell me it's anxiety. This is not anxiety".

However, I really can't blame the drug until we go through all the slow, excruciating rounds of heart and lung testing so the doctors are all happy.

Unless there's something else going on, which it could be - the only difference in my life is the Aubagio.

Please read up on breathing issues.

[Michela11]

I'm on day 9 of the wash out process; I've been losing 3x the hair each day that I normally do and I'm beginning to feel a difference in my hair. This started at about 3 months on Aubagio. I have fine hair, and I'm hoping this loss starts soon. Ugh.

Hey Alicious

Have you been doing the Aubagio washout? What's happening with you? ooo

[Michela11]

I received a phone call from my specialty pharmacy. On Tues. I was already approved for Tecifidera. wow. That was fast.
One hour later I was at the neurologist and was shocked he was not excited for me to start so I am trying Aubagio again and if I get the headache again It is back on Gillenya for me and back off my beta blocker. I am JCV positive and he fears this drug and the drug used for psoriasis and has. Been linked to PML are to close. And the drug is to new.
Good luck
Laurie

Hi Laurie

Did you go back on Aubagio? Was reading your thread.

How are you feeling?
I'm still on, but with unresolved issues.

[Michela11]

Latest update.

I've had a major relapse in Aubagio.

Still in it, have just finished 4 days 1g intravenous methyl pred

2 new enhancing lesions on spine. One 3mm long. Brain OK.

Has completely screwed my right side, leg and foot. Was in moon boot and stick - from nothing.



Neurologists say the Aubagio is not "holding me". But they want to keep me on it because I'm not a candidate for so many other things. Till BG12 is on the Australian PBS (soon)

Why would I?

ROAR

[laurasari]

I actually have a new dr since my post in early May and I am on Tecfidera and doing well with it. I am sorry Michelle1 that Aubagio is not working for you. Good luck to all
Laurie

[usndt]

Just started

Started Au-14 on Thurs with the following side effects: Slight Headache, everyday, but was having worst HA right before starting meds.
Stomach pain after eatings, now eating smaller meals, which seems to make the pain less.
Nausea, less with smaller meals.
More frequent trips to the bathroom for BM's. (TMI, )
I was on Rebif for 18 months, which I didn't tolerate at all, then off meds for 12 months. I reluctantly went back on meds although no new Lesions, because of an increase in symptoms. My question is: Should I be concerned about the stomach pain?

[Michela11]

Hi folks, well Aubagio and I are done. Like Laurasari, I've been Oked for Tecfidera if my lymphocyte results are OK after the 11 day flushout of Aubagio.

Another brain MRI 3 weeks ago showed 3 new lesions in the last 12 months, one of which was enhancing. This was 2 months AFTER the relapse, methylpred etc and going back on Aubagio. grrrrrr.

I am due to start the flush with Questran now, have the big box here. Apprehensive about side effects, especially constipation. Laurasari, any words of wisdom on this?

[Michela11]

Started Au-14 on Thurs with the following side effects: Slight Headache, everyday, but was having worst HA right before starting meds.
Stomach pain after eatings, now eating smaller meals, which seems to make the pain less.
Nausea, less with smaller meals.
More frequent trips to the bathroom for BM's. (TMI, )
I was on Rebif for 18 months, which I didn't tolerate at all, then off meds for 12 months. I reluctantly went back on meds although no new Lesions, because of an increase in symptoms. My question is: Should I be concerned about the stomach pain?

Usndt - I had a sore tummy in the first month or so, felt like too many situps, also more BM and hairloss. All calmed down. Can't advise on your tummy though. I'd ask your doc.

[laurasari]

Michela11. I wish I could help you when I went off Aubagio. My then Dr put me on Copaxone. Said wash out for 6 months 1 month later I forced to find a new dr after 15 years because with no notice I learned he left the practice. The new dr a big specialist actually chief of U of Miami Ms center said his group did not agree that the washout was necessary and immediately switched me to Tec. he told me with Tec for the first month make sure you take it with food that contains fat. I have had no real problems. good luck

[tlc1]

jvc

What is jvc positive and did?
I'm on Abaugio for almost two months I'm having severe stomach pain and left side kidney area burns...

[Honeybooboo]

Michela11. I wish I could help you when I went off Aubagio. My then Dr put me on Copaxone. Said wash out for 6 months 1 month later I forced to find a new dr after 15 years because with no notice I learned he left the practice. The new dr a big specialist actually chief of U of Miami Ms center said his group did not agree that the washout was necessary and immediately switched me to Tec. he told me with Tec for the first month make sure you take it with food that contains fat. I have had no real problems. good luck

We just moved to Miami in July.. Can you pm me if you found a good neuro yet? We are bouncing around b/c we haven't found a good one yet. Appreciate it.

[Seasha]

Honeybooboo - the PM ability here on MSWorld is not active for members, but you may want to start a new thread and ask for a recommendation for a neuro in your area. You will probably get more responses. You could also follow this link http://www.msworld.org/forum/showthread.php?t=128194 for finding one in your area.

[tlc1111]

Aubagio. NOT 4 Me

HI

I've been on Aubagio for almost 3 months. After a month I started gettingsharp abdominal pains and fevers, I thought I was just over heating as I do with MS, so I just over looked it until I broke out in fever blisters. I also developed a cough. Into the 3rd month I started getting the flu practically back to back. I stopped taking it just 2 days ago. I didn't get any exaberations however, I felt good otherwise...

[Michela11]

Aubagio and liver damage.

I did the flush.

But little did we know at the time (thanks neuro for NOT checking my blood test results until TWO WEEKS AFTER THEY WERE DONE) was that my liver enzymes ALT and AST were 700+ and 600+ respectively. They should be under 35.

I was supposed to start on Terifludomide after the flush.

I didn't. Thank God I didn't, as it can also cause liver damage and would most certainly have, in this case.

I still have two boxes sitting here unopened.

I was so very sick across Christmas and New Year and didn't know why.

Hospital neuro registrar rang me in a panic on January 3.

I was furious that the doctors didn't check the tests before what was supposed to be a significant medication change.

Liver function tests every week now until back to normal.

Still very high, but slowly trending down.

And yes, I had been having liver function tests once a month. The elevation occurred in a one month period, 9 months after starting Aubagio, and after a relapse.