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1168718 tn?1464987135

Hi guys,, another update...

Well, just got home from my neuro appointment.  This is the first time, I do believe, that I have left her office, and not been a wreck, and shaking and such.  

That being said, we will wait and see how fast they work. ( she, meaning) .... She has told me to stop my copaxone, and to go and get the antibiotics for my infection, and wait for a month, and she wants me to start  Avonex *sp* , so, I am going to start investigating this one, she did not want me to go the route of the chemo yet, and wants to try the avonex first.

So, hoping this will happen, without me having to be the police on my case !!!   LOL

I am still waiting for the new specialist appt, about my bladder , and hoping it will be sooner than later.  

So, those of you on Avonex, how is it  ,  and did it help, or make you worse, and what were the side effects...

THANKS in advance, my puter has a mind of it`s own, won`t let me do question marks, ..... so, these are still question non e the same... LOL

Candy
13 Responses
667078 tn?1316004535
I hope you are get this infection under control. I was never on Avonex so I can't way in. I think it is a good drug. You hang in there.

Alex
Avatar universal
Wow, eventful few days!

I take Rebif which is essentially the same as Avonex but different dosing. I have only been on it about 4 months and other than the first full dose no real issues other than those annoying injection site reactions.

The first full dose after the titration period resulted in severe chills and shaking for a few hours and I occasiinally notice a slight fever which appears the next morning if I am more tired than usual.

Corrie
5887915 tn?1383382380
I hope you get treated for this infection ASAP & get some relief. I also hope she works really fast at everything for your sake.

I can't comment on the Avonex as I'm on Rituximab but I really hope it works out for you.

Take Care

Karry.
572651 tn?1531002957
I'm wondering why she made the step to Avonex - an interferon - and not one of the orals (Gilenya, Tecfidera)?  Especially if she was talking about using a chemo drug - that would be skipping lots of other choices, including Tysabri.  Did she test you for the JC Virus to maybe consider Tysabri?

There are a few folks on Avonex here - I hope they can share their experiences with you.
Here's hoping that infection clears quickly - it could be causing your problems.  Pseudo-relapse, anyone?  That could be your problem with the MS getting worse.

feel better, Laura
1168718 tn?1464987135
thanks guys, :)   Laura, we did talk the Tecfidera, but not Gilenya, she did not mention that.  The chemo drug she talked about was talked to me from another specialist in Vancouver, and she did not want to jump to that.  

I had taken in a list of some drugs, and tried to be prepared for the appt. and go in with some knowledge....( written down, cause I can't remember them LOL) , anyways, that is what she suggested, and I did not have an beta-or interferons, causeof the depression issue, but, they are supposed to know their stuff, right???

I will be starting the treatment tomorrow for my e-coli infection, and will do 2 full doses, it is a new drug to Canada, and was only passed in 2012 for use here. So, we are praying that it works..... Monural is the drug, you mix it with 4 ozs. of water, one day, and then another in 3 days.  So, guess what, it is not covered by pharmacare, so it is a 80.00 bill, for me, and hubby who are not working. :(((

But, Norm talked to Pharacare, and they said that the manufacturers of the drug, need to apply for coverage, and because it is new to Canada, it isn't done yet.   So, we are scr***d .....!!!

I do hope it works.... Oh, Laura, we did talke Tysabri, and I have had to have failed 2 other drugs before I could be a candidate for it.  So, if the Avonex doesn't work, then it would be the second, and then we would maybe be able to try it.  

She has done no blood work, maybe that will come in the next month or so, I'm hoping.  

Thanks everyone for the support,  am looking forward to stories of the Avonex users, or at least someone who has tried it.....

(((HUGS))) to all, I'm hanging in there, and Alex, you take care too, my friend,
as with everyone else, please be good to yourselves...

Candy
572651 tn?1531002957
Candy, this really perplexes me, now.  Avonex is an interferon and it is known to have problems with depression in some people, especially if they are already prone to depression.  Our own dear Quix sunk quickly on Avonex and if I remember correctly, she didn't recognize how bad it was until she got off of it.  Other people have absolutely no problems.

The Canadian system may not have approved payment for Gilenya, but that would surprise me.  It made it to market much quicker than Tecfidera.

Fosfomycin is the name of the active ingredient part of the drug - Monural is the brand name here.  It doesn't appear to be a new drug and it sure sounds like a powerful antibiotic with the germs it is known to be effective for treating. It stinks that it is not covered.   I hope it works for you and worth the investment.

hugs, Laura
Avatar universal
Hi Candy, glad to hear you had a good visit with your doc. I was on Avonex for a year and was never able to get past the flu like symptoms. I was able to lesson them by hydrating the day of my injection and taking Tylenol the day of injection, then timed it to take 8 hour Tylenol. At bedtime.
I didn't work the day after the shot because I never knew how I was going to feel. It doesn't mean others have the same. Some people have been on it for years with no problems, and the once a week shot was much better than every other day.
I am on tecfidera now and I had a hard time adjusting to it as well. I have always been very sensitive to meds so it could just be me.
I will keep you in my thoughts and prayers.
HUGS, barb
738075 tn?1330579444
Hey, Candy!

Sorry you have to deal with an e-coli infection - yuck!  I took Rebif for a while, and like Corriel said, it's like Avonex with different dosing.  I just made sure I took my injection before going to sleep at night, and I took Ibuprofen in a big glass of water at about the same time.  This made the "flu-like symptoms" more bearable.  I hope you don't have depression on top of it all.  

I would go for Tecfidera before taking Avonex.  Is it too late to ask for it? It has a better profile for relapse reduction and similar disability reduction profile.  The tummy issues often found in Tecfidera go away for most folks after a couple of weeks.
1168718 tn?1464987135
Heh, I will check with my specialist, and see what she says about the two, I'm still researching.  

We did take the antiobiotics, and we will be hoping getting good news in the next couple of weeks.   That is what we want, ......

So enjoying the sunshine now, and going for a walk, to stubborn to be down for long.....

Will keep everyone posted...

Thanks again,
((HUGS))
Candy
5887915 tn?1383382380
I'm glad your on the antibiotics & I really really hope it is good news for you on the infection front.

The MS society mentioned taking a low dose daily antibiotic daily (long term) which I said definitely not to & doubt my doctors would agree with that. I am aware it's done for some people but it doesn't sit right with me.

Enjoy your stroll in the sunshine.

Thanks for the update.

Take Care

Karry.
1168718 tn?1464987135
Heh Karry, thanks for the note.  I'm hoping that it will work too, I did have to take a second dose, ( one sachet mixed with 4 ozs. of water) it works for 3 days, and they say it is a one dose thing, but, of course not me.... I took the 2nd dose today, and we will see next week if it works.  

I am totally with you on the daily antibiotics , that would not work for me either.

Heh Laura,
the Monural that I was prescribed, was only approved by the FDA in 2012 here in Canada.  For use on things like mine.   The pharmacist told me that I was his first prescription for this drug..... and the other one, said she had only prescribed it 2 times in 37 years on being a pharmacist.  So, I'm popular with them, and kinda of experiment too, they want to know how it works., and our manager of the pharmacy is trying to get in touch with the company that makes Monural, and see if it can be added to the list for pharmacare..... so, that would be helpful.

Hope you all are having a good day,
Candy
Avatar universal
girlfriend, if I had the $160, you would have it so fast it would give the mailman a headache!  

Prayers that somehow you work it out, you know me!  Will think positive for you.  We'll tackle your problems one at a time!  

Hang in there
Hugs
Sarah
198419 tn?1360245956
Hi Candy,

The interferons have the longest track record, and I'm not surprised your doctor wants to try you on one.

I was on Rebif for 5 years, and I did well on it. I have no new damage in my brain and spinal cord, and I'm enjoying major progess with my body.

Like all meds, there are risks of experiencing stated side effects, however, not all people experience all side effects - just like not all MS will respond to all the meds. It really does depend on what you will respond to. It does not seem, with your track record so far that Copaxone was the one for your MS. Perhaps the interferon will be. And, I sure hope so for you.

I say give it a whirl and trust your doctor. You left there feeling better than other visits and I'm glad to read this.
((((hugs)))
shell
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