starting avonex

A board to discuss the Multiple Sclerosis modifying drug Avonex

starting avonex

Postby Courts » Wed Nov 03, 2010 4:55 pm

Hi everyone,
I've just started taking avonex, I've had 2 injections so far & only half doses to wean me onto it. The nurse said the top outer quadrant of the buttock is a good place and the most comfortable, the 2 injections I've had so far were on each buttock and the next 2 will be the thighs. My qustion about this is when I rotate injection sites, once I come back to the site I started on do I have to be carefull to make sure its not the EXACT same spot to avoid reaction or would it not matter since its been 3 weeks since the first shot?

Also, how many locations do you guys rotate between? I've read someone here say the arm is most painful so if I rotated between tops of thighs and buttocks (total of 4 locations) would that be sufficient or should I include the side of the thighs also? (bringin total sites to 6)

On a side note, I've suffered from depression on and off and always have anxiety. I'm concerned about how the avonex might affect that so I was wondering if anyone has had depression or anxiety worsened from Avonex and when you noticed it, like how long after starting the drug did the side effect start?

Thanks for any help and advice :)
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Re: starting avonex

Postby smokey » Thu Nov 04, 2010 12:05 am

Courts wrote:Hi everyone,
I've just started taking avonex, I've had 2 injections so far & only half doses to wean me onto it. The nurse said the top outer quadrant of the buttock is a good place and the most comfortable, the 2 injections I've had so far were on each buttock and the next 2 will be the thighs. My qustion about this is when I rotate injection sites, once I come back to the site I started on do I have to be carefull to make sure its not the EXACT same spot to avoid reaction or would it not matter since its been 3 weeks since the first shot?

Also, how many locations do you guys rotate between? I've read someone here say the arm is most painful so if I rotated between tops of thighs and buttocks (total of 4 locations) would that be sufficient or should I include the side of the thighs also? (bringin total sites to 6)

On a side note, I've suffered from depression on and off and always have anxiety. I'm concerned about how the avonex might affect that so I was wondering if anyone has had depression or anxiety worsened from Avonex and when you noticed it, like how long after starting the drug did the side effect start?

Thanks for any help and advice :)




Hi - I've been injecting Avonex for about 18 months now. I only use my thighs and it seems to work out fine. Buttocks are harder - difficult to see!
I started to notice a change in mood about a month after I started Avonex. I now also take Lexapro, which has been effective.
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Re: starting avonex

Postby NHE » Thu Nov 04, 2010 12:33 am

Hi Courts,
I just always used the tops of my thighs and rotated left and right each week. I injected in upper third of the thigh over to the outer side. There's less of a chance of hitting a large blood vessel or a nerve than if you inject in the top center of the thigh. You may want to read my post in the Injection Locations thread.

http://www.thisisms.com/ftopicp-70084.html#70084

The Injection Technique thread may also be helpful for you.

http://www.thisisms.com/ftopict-4805.html

NHE
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Postby Courts » Sun Nov 14, 2010 6:03 pm

Thanks for the replies :)

In the injection instruction DVD they day to use the middle third of the thigh, is the upper thrid easier to do it in or do you guys use both to allow more variation of sites?

Also, has anyone experienced nausea as a side effect? I seem to get constant nausea, not intense but annoying and nothing gets rid of it, it lasts for approx 4-5 days after injection.

Thanks :)
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Postby smokey » Mon Nov 15, 2010 11:00 pm

Courts wrote:Thanks for the replies :)

In the injection instruction DVD they day to use the middle third of the thigh, is the upper thrid easier to do it in or do you guys use both to allow more variation of sites?

Also, has anyone experienced nausea as a side effect? I seem to get constant nausea, not intense but annoying and nothing gets rid of it, it lasts for approx 4-5 days after injection.

Thanks :)


Hi Courts.....I use the middle third, no higher. I find it gives me quite a few options for rotation. No, I havent experienced nausea. In the beginning I did experience intense stomach aches for afew days after the injection, but they dont happen any more...hang in there. PM me if you need. Smokey.
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Re: starting avonex

Postby NHE » Wed Nov 17, 2010 12:56 am

Courts wrote:Thanks for the replies :)

In the injection instruction DVD they day to use the middle third of the thigh, is the upper thrid easier to do it in or do you guys use both to allow more variation of sites?


I don't know if it's easier or not. It's just where I was initially trained to do the injection. The injections rarely bled and I wouldn't hardly feel the injection half the time. I just swapped from one leg to the other each week.

Also, has anyone experienced nausea as a side effect? I seem to get constant nausea, not intense but annoying and nothing gets rid of it, it lasts for approx 4-5 days after injection.


That sounds pretty rough. I didn't get that kind of nausea. Have you tried eating plain, unsweetened yogurt? That might help your stomach.

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Postby georgegoss » Thu Nov 18, 2010 4:57 pm

When I first started taking Avonex in 1996 the first couple times following administration it felt like a truck ran over me. Then over time the symptoms receded and after a couple years I felt almost nothing and often did not use OTC painkillers (I sometimes used Naproxen).

I figure I injected myself with Avonex more then 750 times over a 15 year period. I always used the top-or-side middle third of my leg, alternating sides every week. I never once had any injection problem of any knd (even though I disliked injections in General).

The Avonex effectively drove my T-cell count down to low levels. And for all those years I couldn't tolerate the heat. Now that I have been cured of MS via hematopoietic stem cell transplantation I stopped taking Avonex in November, 2009. Shortly after my transplant (December, 2009) I stopped feeling hot all the time and for the first time in years started feeling the cold again. I still am not certain if this effect is the result of the stem cell transplant, or stopping the Avonex. At least its great to be able to take hot showers again.

http://themscure.blogspot.com/
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Stem cells

Postby Alexandra » Mon Mar 21, 2011 1:31 am

Dear Georgegoss,

I had a discussion with my neurologyst yeasterday about stem cells transplant and although against it at the beginigng, he listened to me. He had some questions and hope you can help us with obtaining the answers:
- did you perform an MRI post transplant, after the one year period? if yes, what did the MRI show?
- do you know the statistics of this treatment: how many deaths, how many trials, success rate for this clinic and in general
- who was the doctor that supervised your case?

Thank you for your time to answer my queries. I think my neugo is considering this and will support me if we have more data. He is not sure if I should go for it since I was newly diagnosed and at the begining.
wish you lots of health
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Re: Stem cells

Postby georgegoss » Tue Mar 22, 2011 7:45 pm

Alexandra wrote:Dear Georgegoss,

I had a discussion with my neurologyst yeasterday about stem cells transplant and although against it at the beginigng, he listened to me. He had some questions and hope you can help us with obtaining the answers:
- did you perform an MRI post transplant, after the one year period? if yes, what did the MRI show?
- do you know the statistics of this treatment: how many deaths, how many trials, success rate for this clinic and in general
- who was the doctor that supervised your case?

Thank you for your time to answer my queries. I think my neugo is considering this and will support me if we have more data. He is not sure if I should go for it since I was newly diagnosed and at the begining.
wish you lots of health


Hi Alexandra,

You ask good questions for someone that would like to see the evidence for Hematopoietic Stem Cell Transplantation (HSCT). Luckily there is a lot of clinical data that is very consistent. I compiled a lot of useful reference information that should fill in much of the information you seek and should be useful that can be found on this page (and perhaps you can direct your neurologist here, as well). . . .

http://themscure.blogspot.com/2010/06/s ... rence.html

Some summary points to state them explicitly. . . .

- I had an MRI both before and (ten months) following my HSCT procedure. There has been zero additional lesion activity on my MRI scan. So things look stable in the brain images, but I will continue to have yearly MRI scans to confirm this. But I think the more important measure of success here is EDSS. Pre-HSCT my EDSS was 3.5. Today (at 15 months post transplant) it is nearly EDSS 2.0 (just slightly higher, but not by much). And I continue to experience gradual improvement over time so I 'hope' to eventually acheive EDSS 1.5. I think it is possible, although not quite there yet.

- The original phase I study done way back in 2000 had several deaths because they used (the now understood unessesary) Total Body Irradiation (TBI) for immune ablation. The current evolved protocols do not use TBI and only use gentler chemotherapy and there have been zero (absolutely none) treatment-related fatalities. So it has evolved to become a relatively safe procedure (although there is always a finite amount of risk with a serious procedure like HSCT with a risk of death probably around less than <1%).

- Trial data and statistics are listed on my references page. I hope you can direct your neurologist to this same references page. The data is quite volumous and speaks for itself. Based on the phase II trial data, early RRMS cases see 100% halting of MS disease progression and better than 80% of treated patients have reversal / improvement of existing symptoms by at least (or better) of one point EDSS. I would only add that all of the clinical data is very consistent which is the gold standard of scientific proof. As of today there have been more than 500+ MS patients that have been treated with HSCT and is currently in phase III clinical trial at NWU in Chicago.

- As far as my own treatment, the doctor that oversaw my HSCT is a German oncology specialist at Heidelberg University Hospital (Dr. Marc-Steffan Raab, formerly with Harvard's Dana Farber cancer institue). I think I was his first autoimmune treatment case. But actually it didn't matter in my case because the HSCT treatment protocol was substantially similar to that of cancer stem cell transplantation treatment and everything worked out well with no unexpected acute side effects.

Feel free to send me a message if I can assist further. I'm happy to share whatever info I have learned, if not already listed in my blog.

My very best wishes for your good health!

- George
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