Anyone Unable To Tolerate DMD's?

[yorkieville]

Just wondering if anyone has been unable to tolerate the side effects of DMD's.

When I was 1st diagnosed, my MS  Specialist prescribed Copaxone. I was severely allergic to it.

Then, she prescribed Rebif. 3 months into it, I developed hot/cold flashes, that have become so severe, that I wake up so hot in the night, that I have to strip down.

4 months into Rebif, I developed severe diarrhea.

Complication adding to it/diagnosed with Lymphocytic Colitis in Dec. 2012.

I've gone off Rebif, twice for 4 weeks, diarrhea improved.

G.I. Doc said meds are not going to help, with Rebif contributing to diarrhea.

Trying very hard to be a compliant patient-restarted Rebif, only to have the diarrhea return with a vengeance.

And the heat at night has only gotten worse.

I've noticed that depression is also worse on Rebif-but when I told my MS Specialist in February that I was depressed-she said to me, smiling, "And your problems are bigger than everyone elses?"

So, I won't discuss depression with her again.

Sheila

[yorkieville]

Hi, Tammy.

You're welcome. Another member had advised me, to have mints on hand, when I did the IVSM.

Make sure you have plenty onhand.

Good Luck with it-I really hope it helps you.

Sheila

[maxthecat43]

Thank you for the tip!  I hate that taste.  

[yorkieville]

Hi, Tammy

Thought of something, When you do the IVSM, make sure to have 3-4 tins of mini Altoids onhand.

They take the horrible taste out of your mouth, and believe me, it is horrible!

Sheila

[yorkieville]

Hi, Tammy.

I'm so sorry that you've also been unable to tolerate the DMD's.

I'm in a relapse now, too.

I 'think' I'd rather deal with the MS, than the side effects of the DMD's.

I hope the IVSM isn't too rough on you. I've been through it. I was ok, while I was on it....but oh, the coming off was not pleasant.

Sheila

[maxthecat43]

I've had that experience.

Rebif- allergic to the preservative.
Copaxone- deep pain, migraines,and severe nausea.
Avonex- after 6 mos, suicidal ideation. (+my MS specialist said that they weren't working.)

Now it doesn't matter, because I can't afford any of them.  Starting a new relapse now, so I will be getting IVSM.  Oh well.

Tammy

[yorkieville]

I had an appt. scheduled with her for June 26th. The week before, her receptionist called & resceduled it until the end of September.

I'm not continuing with the Rebif. I just wanted to "test" it one more time, to be 100% certain I was right.

My G.I. Doc and my DO both see me.

I've actually sat and talked it through with my DO, and we both agree, I am going through the grieving process.

When I lost Sydney, two years before Kia-even though I knew, I was losing her, it took me a full year before I could function again.

I spent the 1st two months in bed.

Please don't worry, I'm going to be ok. My girls were my children, and losing them, has hit me hard. I feel a lot of guilt over Kia, for trusting my Vet. I need to work through it.

Sheila

[doublevision1]

Is end of Sept the soonest she can see you?  If there's anyway you can be seen sooner I would do so.  If in the meantime you continue on Rebif with the ongoing side effects, that is a long time to go with chronic diarrhea and you could suffer dehydration, malabsorption of nutrients, etc.

Sheila, have you considered treatment for your depression?  It sounds very serious from what you are describing, and as hard as it may be to imagine especially missing your little pup so badly, there are treatments that can make you feel better about things than you are now.  Such severe depression for this long is a very real concern, despite your neuro's flippant remark might suggest.  Would you consider talking to your primary doc about it?  

[yorkieville]

I was completely thrown. My DO felt, as you said, it was a dangerous comment for her to make to a patient she hadn't seen often enough to know, wouldn't do something.

I did a trial of Rebif again, the past two weeks, and the diarrhea has returned. And I am so hot!

As for depression, the morning after I saw my MS Specialist, my tiny Kia died in my hands, and her death was so unnecessary, and I can't find a reason to get dressed, let alone,  leave the house.

Honestly, I could handle all of it, if Kia was still here with me.

I dread seeing her at the end of September. But, I will tell her what my G.I. Doc said-that the meds for the Lymphocytic Colitis won't put it into remission with the Rebif contributing.

I checked and our insurance will cover Tysabri.

So, I'll see what she says.

Sheila

[doublevision1]

Sheila - I can imagine how thrown you would be by that comment, especially by a doc that is normally compassionate.  It was at best, flippant and at worst, dangerous. My previous neuro was hypervigilent about depression and does a depression screening for every patient prior to prescribing any interferon, and annually thereafter.  I dont know about my new neuro as I'm on Copaxone and not depressed so it ddnt ome up.

My only eperience with Rebif was only a brief trial run due to elevated liver enzymes.  I didn't have the other issues that you've had with it I'm sorry you're having such a rough go of it.  My thought like Sarah's, was to suggest exploring Tysabri.  perhaps you can do some research on your own so you can be armed with knowledge and questions and your next appt.  As you probably know there are many here on aTysabri and are doing well with their treatment and disease course.

Sarah - I love the philosophy comment, brilliant. :)

[yorkieville]

Well, Metamucil capsules, when taken with little water, can resolve diarrhea, but in my case, it was the worst thing to take.

When my G.I. Doc  diagnosed me with Lymphocytic Colitis in December, I learned that I had to follow a low fiber/low fat diet.

Where I live, my MS Specialist is considered the best.

She has always been very caring & compassionate, so her remark that day, shocked me.

I think you & I have been seeing the same Neuro's.

I had an initial dx of MS in 2008, only to have him get cold feet, when a neuromuscular neuro at Cleveland Clinic sent him a letter and said she didn't see signs of MS. (In the 15 minutes she saw me.) And I wasn't there for an MS evaluation. I wasn't at the Mellen Center.

I was fortunate to get my dx, because I have MS without visible lesions.

Thanks for the welcome-I've been a member since 2007, but when I am suffering severe nerve pain in my spine, I am not on the computer.

No one has found a way to relieve that pain.

Sheila

[SarahL2491]

why would she tell you to take fiber if you were already having diarrhea?  weird............sounds like you are going to have to be your own advocate!  

Maybe you need a new MS doc!  I went thru a few before I found the absolute best one........the first few had me doubting myself!  I consider myself so lucky to have found a good one.

One told me I had dementia and people my age didn't get MS, sigh...one couldn't even read MRI films.......but she proclaimed to be the MS spokesperson for her area.........go figure.  Welcome to our forum and we're here, if you want to vent, are down, are up, we cover it all or try to!

[yorkieville]

Hi, Sarah.

Forgot to enter your name, in my reply above. (:

Sheila

[yorkieville]

Hi, Sarah.

No, my Neuro & I haven't had a chance to discuss Tysabri. I was supposed to see her the last week of June, and the week before, her receptionist called  & rescheduled my appt. to the end of September.

When I told her, 4 months after starting Rebif, that I was experiencing diarrhea, she told me to take Metamucil.


The way she smiled, as she made her remark about my stating that I felt overwhelmed & depressed, caught me offguard and cut me to the core.

After all, depression is a symptom of MS, and a side effect of Rebif.


I talked to my DO about it, and he was upset. He said she doesn't know me well enough, to know that I wouldn't have gone home and done something.

I don't think my MS Specialist knows the side effects of the DMD's very well. Because when I was diagnosed with Lymphocytic Colitis, she asked me if my G.I. Doc thought any of my meds were causing it.

Thanks for answering, Sarah.

Sheila

[SarahL2491]

have you or your neuro considered Tysabri......its infusable and only once every 28 days.

She may have only been pointing out that many of us also have depression but "mouthy me" would have countered with "well, I'm sure with MY best interest at heart, you can help ME work on MY issues, since you are MY specialist and not my philosophy instructor".

but then I am known for being mouthy.  I don't tip toe around white coats!