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MELLY3183's Photo MELLY3183 Posts: 1,922
5/18/14 11:51 A

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I didn't realize I had posted earlier, but I'm still on Gilenya. Vertigo is still a factor every once in a great while, however, I realize that I now have OAB. Doc put me on Toviaz but I think I have issues thermoregulating, when i go into different rooms or stores my body takes awhile to adjust to the temperature and it makes me need to pee. Weird, does anyone else have this issue? It could just be my own weird quirk, i've always had a small bladder.

When I first started copaxone I had weird rashes all over my body, (i'm skimming the last post while replying). It may be your body adjusting to the new medication? But I heard that it was a side effect of that new medication.

I hope this helps. Have a great week friends!

"You have to believe in yourself when no one else does. That's what makes you a winner." - Venus Williams

"I am who I am today because of the choices I made yesterday." -Eleanor Roosevelt


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GRATEFUL_BEING's Photo GRATEFUL_BEING Posts: 1,492
4/9/14 11:51 A

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I also take Tecfidera. I've been on it 3-1/2 weeks. My 1st dose I had the worst hot flash ever, and I've had some nasty ones, in spite of taking 325 mg of aspirin one hour prior. I also broke out into a rash that lasted 3 days. I have not had any flushing since and have discontinued premeditating with aspirin. I do occasionally I have some abdominal pain a bit after taking it, but I think this pain is a combination of IBS and Tecfidera. On the 8th day I broke out with another rash. I visited numerous MS forums gathering information on how to counter or prevent potential side effects. In addition to speaking with my consulting Pharmacist at Optum RX this is my regime:

1.One hr prior to dose take probiotic (I was also taking a coated aspirin of 325 mg at this time),
2. eat breakfast containing a carb, protein and fat
I eat 2 whipped eggs, 2 pieces of turkey bacon, on an english muffin yes its a huge breakfast. Some take the medication with food, I have found that it's better for me to eat and then take it
3. Stay hydrated drink lots of water throughout the day
4. Eat a lot of protein
5. Doses should be 12 hours apart I cheat and do about 11 sometimes 11-1/2 my pharmacy consultant advised me against that because it can cause vomiting and diarrhea but I have not had any issues
6 Dinner is also a carb, protein and a fat. I am at the point I eat dinner and a two three hours later I take the medication with an english muffin and half of slice of cheese.
7. Bedtime I take Protonix also another side effect. I do have a history of GERD that was previously controlled with diet.



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"Always concentrate on how far you’ve come, rather than how far you have left to go."

Unknown

"Happy people plan actions, they don’t plan results." -
Dennis Wholey

"The greatest glory in living lies not in never falling, but in rising every time we fall."-
Nelson Mandela

"The journey is the reward."
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GRAMMYSHAY's Photo GRAMMYSHAY SparkPoints: (4,692)
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2/19/14 4:48 P

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Does anyone take the MS oral medication Tecfidera? I started it last night. I haven't had a side effect yet. You take it 2 times a day.

Sherri

GrammyShay


Psalm 27:1 (NCV)
A Song of Trust in God
Of David.

The Lord is my light and the one who saves me.
So why should I fear anyone?
The Lord protects my life.
So why should I be afraid?


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HIKETOHEIGHTS's Photo HIKETOHEIGHTS SparkPoints: (103,867)
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1/3/14 7:22 P

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Good luck with your program!!!!

"A reminder to walk comes from one heart to help another." Me
KRITTEN1's Photo KRITTEN1 SparkPoints: (54,613)
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1/3/14 10:49 A

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On Jan 7, I go for my first dose observation of Gilenya. My insurance company denied coverage, and then rejected my appeal. I found out after waiting one and half months for the decision about the appeal that my insurance is set up to never overturn the first denial. It turns out that I needed to be turned down twice to prove that I have no coverage and qualify for an assistance program. I am now approved for the assistance program.
It has taken since the beginning of August to get to this point. I hope my body doesn't have a bad reaction. I will have someone with me and some DVDs to watch during this observation.

Wish me luck. It has been about 2 years since I was on a med.

HIKETOHEIGHTS's Photo HIKETOHEIGHTS SparkPoints: (103,867)
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10/4/13 7:19 P

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nice to see you on the MB. Have you ever been able to figure out why your blogs don't show on the team list? Perhaps you could check to see why.

"A reminder to walk comes from one heart to help another." Me
MELLY3183's Photo MELLY3183 Posts: 1,922
10/4/13 11:23 A

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I changed jobs this year and now work outside more than I previously did. This year has been the first year since my diagnosis that I didn't get way sick from symptoms. I have been battling vertigo a little more, but nothing too drastic.

Yes medicine is good, but make sure your stress level is down too. Yay for your leg going back to normal!! Good luck with all your journeys.

(Victoria, i was like oh someone else likes that quote? I try to read from bottom up on posts)

"You have to believe in yourself when no one else does. That's what makes you a winner." - Venus Williams

"I am who I am today because of the choices I made yesterday." -Eleanor Roosevelt


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HIKETOHEIGHTS's Photo HIKETOHEIGHTS SparkPoints: (103,867)
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11/11/12 10:57 A

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Glad you are feeling good, enjoy the freedom & your journey!

"A reminder to walk comes from one heart to help another." Me
RAFFERM Posts: 482
11/11/12 6:36 A

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You know, the more I know the more confused I get! Melly you are so right, even though we all have the same disease it effects each of us differently. I just went through a regime of prednesone for some issues with my leg and it worked! It is almost as if the disease has gone away, but I know it hasn;t. I am going to enjoy the time and see what comes next!

HIKETOHEIGHTS's Photo HIKETOHEIGHTS SparkPoints: (103,867)
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11/10/12 3:48 P

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I am reposting this in the medical section iy was written by Melly3183
Hi Team -

I've been meaning to post about my experience with Gilenya thus far but haven't really had the time to sit and write about it. Yes, I wrote the blog but I'll just post it here.

Gilenya was scary, sitting in observation for 6 hours while they took my blood pressure every 30 minutes was boring. But I made it through, my heart rate didn't change sufficiently at all. Okay this one time after I made a homemade muffin, but that was probably because of the sugar content. I never realized how much copaxone helped me until I stopped taking the medication, I felt symptoms I didn't realize I had. But they quickly went away after I started taking Gilenya. What I can tell you from my experience and how i've changed is:

I don't pee so much
I don't get those horrible welts
No more bruise like scars on my body from the injections
No more anxiety attacks
I also don't sweat like it's going out of style
I am more confident in myself

As with all medications and severe side effects, talk to your doctor about making the change. We are all so different in this disease that it's hard to pinpoint what exactly will work for us.

Also, I learned there was a new injectable at my walk. I don't have all the details about it, I just got a waterbottle with the name on it, it's H.P. Acthar Gel from the little that I read this morning I believe it's for m.s. attacks but I only skimmed the text and without my glasses the screens a tad blurry. Here is the link from the NMSS website:

http://www.nationalmssociety.org/about-m
ultiple-sclerosis/what-we-know-about-m
s/treatments/medications/acth/index.aspx

Also, from my newsletters and momentum magazines (which you can order for free from the MS society, they send them quartlerly) I learned they are doing more research on the gene that they believe to cause M.S. They believe that we were born with this gene and that some sickness or something triggered it to activate and this is why we end up with MS. Now last year they told me it wasn't genetics, it wasn't alot of things. But this year, it may run in the family and it may have something to do with genes. Which is better than knowing that it just appears to us lucky winners.

They are also actively researching people who show some of the same symptoms, and trying to see if they can segregate us into groups that can be treated more effectively as opposed to just guessing how we should be treated. If that makes sense, having a more personal medication to help ease our symptoms. I read the article awhile ago and explained it better at the walk.

But, keep on keepin' on. This is great that we have this team on here. I never thought I'd enjoy reading about scientific stuff, or that I would have to do it for personal reasons but it gives me hope that they are trying so hard to help us. Here is the link (I believe) to sign up for the momentum magazine or at least read it online. Good luck and keep sparking:

http://www.nationalmssociety.org/multime
dia-library/momentum-magazine/index.aspx


"In the sweetness of friendship let there be laughter, for in the dew of little things the heart finds its morning and is refreshed.� - Frances Ward Weller

"Strength does not come from winning Your struggles develop your strength. When you go through hardship and decide not to surrender,
that is strength."

"You have to believe in yourself when no one else does. That's what makes you a winner."
- Venus Williams


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"A reminder to walk comes from one heart to help another." Me
HIKETOHEIGHTS's Photo HIKETOHEIGHTS SparkPoints: (103,867)
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4/26/12 4:13 P

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Hi Gang, I creadted this thread, Medical Resources back a while ago. I am now creating different threads to make posting/finding information easier.

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