Aubagio... any experience?

A board to discuss future MS therapies in early stage (Phase I or II) trials.

Re: Aubagio... any experience?

Postby MSandI » Mon May 19, 2014 2:13 pm

Thanks standingtall
I have been alright today, no muscle spasms. Oh that was intense last night. The gi issues have not bothered me at all today. Keep on keeping on!!! Have a good night everyone.
Ann
MSandI
Family Member
 
Posts: 73
Joined: Mon Nov 04, 2013 6:19 pm

Advertisement

Re: Aubagio... any experience?

Postby standingtall » Wed May 21, 2014 10:32 am

Great! That is good news Ann and I am so glad that the issue subsided. I am very interested to hear how the Aubagio regimen goes for you, and feel sure it will go well. I will continue praying for you and hope you have no other symptoms.

One thing I would be interested to know from you, or anyone else taking Aubagio is if they have had their B12 checked. My B12 had been low since before diagnosis and I began supplementing with B12 around the time of diagnosis. Despite supplementation, my B12 levels tended to stay on the low side for 4 years. After around 4 months of being on Aubagio, my B12 level went through the roof. I stopped B12 supplementation completely, and it remains slightly elevated 9 months later. Now that I am off the Aubagio, I will be interested to see where that level goes.
standingtall
Family Member
 
Posts: 45
Joined: Wed Mar 06, 2013 9:44 pm

Re: Aubagio... any experience?

Postby MSandI » Wed May 21, 2014 2:20 pm

Hi standingtall
Today has been another great day on aubagio. My left arm feels much better for about 16 to 17 hours after the pill, then I feel the numbness again until the about 1 1/2 hours after next dosage. My balance has been a blessing. I can only say that I feel tired about an hour before my bedtime. Last night I woke 3 times and decided to get up at 5:30am. That was kind of strange considering I was so tired before bed. Something else... I just remembered, did you sneeze often? I have noticed that as well. As for my b12, they(my care team), have never disclosed any of my blood work numbers. I always ask .. how does everything look? The response is always the same... the numbers all look good. So I guess the only thing I can say is the numbers all look good as that is what I have always been told. I take calcium with magnesium, magnesium, b12, d, biotin, ala, cla, zinc, bromelain, c and kelp. I eat only organic and pesticide free and grass fed beef/chicken (free range). I am a farmer's wife and we eat what we grow. That would be my only thing that when I eat my own food that we grow I feel safe.
You know I have read on other peoples posts that one to one calls them, they have not called me to see how I am doing. Is that strange? Maybe I will call Debra tomorrow, I think that might be a good idea.
Ann
MSandI
Family Member
 
Posts: 73
Joined: Mon Nov 04, 2013 6:19 pm

Re: Aubagio... any experience?

Postby MSandI » Fri May 23, 2014 4:34 pm

Had a headache today off and on, I took advil. Did not feel like myself today. More tired than normal. I took my pill without food today. Now I am not feeling the best, gi issues have come back. I guess I am sitting down for the rest of the evening. My balance is really off as well and my toes are freezing. I do not feel like eating, almost feel sick to my stomach. I hope this leaves me by the morning. I think this came on from not eating????
Ann
MSandI
Family Member
 
Posts: 73
Joined: Mon Nov 04, 2013 6:19 pm

Re: Aubagio... any experience?

Postby MSandI » Sat May 31, 2014 1:21 pm

All is well, actually feeling great last couple of days. I am now happy my neuro chose this med for me.
Ann
MSandI
Family Member
 
Posts: 73
Joined: Mon Nov 04, 2013 6:19 pm

Re: Aubagio... any experience?

Postby MSandI » Tue Jun 10, 2014 5:59 pm

Tomorrow is blood work day, Friday will finish my first pack. I have only had one morning that kept me in bed with abdominal pains. My results will be read to me on the 20th, and this time I am going to ask for a copy of results.
Ann
MSandI
Family Member
 
Posts: 73
Joined: Mon Nov 04, 2013 6:19 pm

Re: Aubagio... any experience?

Postby standingtall » Sat Jun 14, 2014 10:08 pm

Glad to hear things are going well for you. Sorry I have not replied for a bit, as I have been really busy.... Thanks for inquiring to your doc about the b12, I would be really interested to know. Kind of a side note of advice, I would get copies of all of your blood work and test results for your own records. It is amazing how helpful it can be to have this information on hand, and you will be much more critical of the results than any doctor. Regardless of how good of a doctor you have, review and analyze everything they tell you. I am not one whom thinks I know more than the doctors, but rather one whom cares more about my own health than any doctor I see.
Take care and post an update after your appointment.
standingtall
Family Member
 
Posts: 45
Joined: Wed Mar 06, 2013 9:44 pm

Re: Aubagio... any experience?

Postby MSandI » Wed Jun 25, 2014 3:41 pm

I am now almost at the 6 week mark. I have had a few glitches a few days ago. BP went high, 150/86. That was not good. I am feeling better now. I have lost 5lbs in 6wks, I am sure it is due to gi issues. All my blood tests results are in.... and I got a copy of my test results before I started the med. My gp just looked at me funny when I asked for the copies....I told him I wanted them for my own personal reference. I did have to pay though. Oh well mission accomplished. There are to many things to post but what I felt was important for input was vit d and b12.
Before aubagio neither level checked???? not sure why
after 1 month of aubagio
vit d 107.5 nmol/l
b12 298 pmol/l

So tell me what you think, or any other numbers on the blood are now available to me at last.
Thanks
Ann
MSandI
Family Member
 
Posts: 73
Joined: Mon Nov 04, 2013 6:19 pm

Re: Aubagio... any experience?

Postby lyndacarol » Wed Jun 25, 2014 6:12 pm

MSandI wrote:I am now almost at the 6 week mark. I have had a few glitches a few days ago. BP went high, 150/86. That was not good. I am feeling better now. I have lost 5lbs in 6wks, I am sure it is due to gi issues. All my blood tests results are in.... and I got a copy of my test results before I started the med. My gp just looked at me funny when I asked for the copies....I told him I wanted them for my own personal reference. I did have to pay though. Oh well mission accomplished. There are to many things to post but what I felt was important for input was vit d and b12.
Before aubagio neither level checked???? not sure why
after 1 month of aubagio
vit d 107.5 nmol/l
b12 298 pmol/l

So tell me what you think, or any other numbers on the blood are now available to me at last.
Thanks
Ann

I commend you, Ann, for getting a copy of the actual test results for your own file! I am always amazed that any patient has to pay for his own test results – we have already paid once to have the tests done! As you say, "Oh well, mission accomplished."

Now, to your test results… The serum B12 test alone is not usually adequate to determine if a person has a B12 deficiency; usually, a blood test for the homocysteine level and a urinary test of methylmalonic acid are also done (those levels will be high and the B12 level will be low, if there is a B12 deficiency).

Your B12 result was 298 pmol/L. This equals 403.8 pg/mL. According to the book, Could It Be B12? An Epidemic of Misdiagnoses by Sally Pacholok, RN, BSN, and Jeffrey Stuart, D.O., (page 205):

Physicians need to be aware that in some research studies, B12 values are measured in picomoles per liter (pmol /L), while clinical laboratories express values in picograms per milliliter (pg/mL) or nanograms per liter (ng/L).…
pg/mL = pmol/L divided by 0.738

After conversion to picograms, your result is 403.8 pg/mL – Pacholok and Stuart think labs have their standard ranges set too low and (on page 15) the authors identify a Serum B12 Gray Zone of 200-450 pg/mL; they "advocate B12 treatment in all symptomatic patients with serum B12 below 450 pg/mL." (In fact, the authors think a person with neurologic symptoms should be aiming for 1000 pg/mL.)


Since your B12 level falls in the "gray zone," I think further testing for #1 serum folic acid test, #2 serum homocysteine, and #3 serum or (better yet) urinary methylmalonic acid test would be appropriate.

By the way, if you had a CBC done and there is a line labeled MCV, which is in the 90s, that indicates enlarged red blood cells which can also be a sign of a B12 deficiency.
User avatar
lyndacarol
Family Elder
 
Posts: 2268
Joined: Thu Dec 22, 2005 4:00 pm

Re: Aubagio... any experience?

Postby MSandI » Thu Jun 26, 2014 4:54 am

Hi LC
My MCV is 94.4 fl. What does that mean?
Thanks Ann
MSandI
Family Member
 
Posts: 73
Joined: Mon Nov 04, 2013 6:19 pm

Re: Aubagio... any experience?

Postby lyndacarol » Thu Jun 26, 2014 9:19 am

MSandI wrote:Hi LC
My MCV is 94.4 fl. What does that mean?
Thanks Ann

From the book, Could It Be B12? (page 9-10):

In general, doctors are trained to recognize only the blood abnormalities associated with B12 deficient. In particular, they're trained to look for evidence of macrocytosis, or the presence of large, immature red blood cells, a classic sign of B12 deficiency anemia. (Anemia, which causes extreme fatigue and weakness, occurs when your red blood cells don't have enough hemoglobin – the substance that ferries oxygen throughout your body. "Macrocytic" or "megaloblastic" anemia, in which the red blood cells are enlarged, stems from too little B12 or folic acid.)

The MCV (mean corpuscular volume) is the measurement of your red blood cells. As the paragraph above states, this macrocytosis is a classic sign of B12 deficiency.

It is disappointing that our doctors don't zero in on the MCV ("trained to look?"). Your value is 94.4; my MCV value: 94.5 (standard range: 82.0-96.0 fL). This is another indication of a B12 deficiency.
Last edited by lyndacarol on Fri Aug 01, 2014 4:53 pm, edited 1 time in total.
User avatar
lyndacarol
Family Elder
 
Posts: 2268
Joined: Thu Dec 22, 2005 4:00 pm

Re: Aubagio... any experience?

Postby standingtall » Thu Jul 10, 2014 1:03 pm

So glad you got your results. Lyndacarol is much more knowledgable than I, but it does sound like you have room to improve your B12. With your numbers, focusing on adding a few foods rich in b12 may be all that is needed.
I continue to interested in your b12 going forward. Mine was originally low, and now remains elevated despite being off aubagio for several months. I will be rechecking mine in about 2 months.
standingtall
Family Member
 
Posts: 45
Joined: Wed Mar 06, 2013 9:44 pm

Re: Aubagio... any experience?

Postby MSandI » Thu Jul 24, 2014 5:09 pm

Hello
I have been so busy. I have had a rotten cold for 2 1/2 weeks. BP will not lower so now taking meds for that. GP visit revealed new mri. It shows 4 new plaques in the left frontal lobe. I am so disappointed....truly thought things were looking up, I guess I was hoping. There explained that it was from no medication for 8 months. Not feeling like myself. I just want to get this darn thing in check, so that I CAN FEEL LIKE SOMETHING I DO IS ACTUALLY MAKING A DIFFERENCE. Is there any studies or journals that show aubagio can get rid of plaques. I get nervous knowing they are in my brain.
Thanks for listening
Ann
MSandI
Family Member
 
Posts: 73
Joined: Mon Nov 04, 2013 6:19 pm

Re: Aubagio... any experience?

Postby standingtall » Fri Aug 01, 2014 12:13 pm

MSandI,
I am not aware of any meds that promise to get rid of lesions or plaques. What they do say is that they may lessen the number of new lesions or plaques that you develop. Your body will heal itself, if given a chance. The holy grail for MS, is to slow development of new lesions to the point that your body heals itself faster than the new lesions occur. Or, you do not develop lesions at all. Unfortunately, there are no meds available that promise us that at the moment. Old and new lesions can be identified by their color, white or gray on the scan. The lesions can heal, but it takes time. We can aid the bodies healing by optimizing our nutrition and avoiding things known to harm us.
As mentioned before, Lyndacarol has much more knowledge than I about B12. But I remain concerned both for myself and other Aubagio users about the liver and B12. Your B12 result was a mild deficiency. Mine was in the cellar, less than 40. With supplementation, my B12 was slow to increase until I started Aubagio. Then it went through the roof, at over 3000. I remain unclear as to what mechanism or circumstances caused this to happen, but remain very intrigued by the Aubagio and it's impact to the liver. I am not afraid that Aubagio was harmful, but wonder if it had corrected whatever was causing my B12 deficiency. For a while, I felt very good on Aubagio. It was later in the aubagio treatment that I began to have additional symptoms.
Good luck with your treatment and keep us posted.
Standingtall :-D
standingtall
Family Member
 
Posts: 45
Joined: Wed Mar 06, 2013 9:44 pm

Previous

Return to Drug Pipeline

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service