Do site reactions ever get better?

A board to discuss the Multiple Sclerosis modifying drug Copaxone

Postby pager » Thu Aug 06, 2009 6:18 am

Wonderful World, I agree! I did go gluten free in February of 2007. I felt great when I did it and have no desire to go back. Especially for my mood! I asked them to check for that, but it maybe too late, unless I load up on gluten, and I don't want to do that. So, if there is old damage there when I go in a couple of weeks, then I know that I had already made the right choice. (BTW, I did have a gene test done and I carry three of the four genetic markers!)
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Postby Wonderfulworld » Thu Aug 06, 2009 11:57 am

Ah I know what you mean Pager. You have to eat a good bit of gluten-ntaining food for 3 months prior to the test otherwise you get a false negative. I remember the garlic naan bread I had the night before my endoscopy with huge pleasure :lol: .

That's really interesting about a gene test! Wow. Where did you get that done? I haven't heard of it being available yet in Ireland. However, and this is interesting, coeliacs tend to have particularly short little fingers (pinky finger).....the pinky does not even reach the top joint of the ring finger if you know what I mean? All the coeliacs in my family have this short pinky.
Sadly, so does my litte son (18 months old) so I suspect he will be a coeliac too....have kept him gluten free since birth but I will have to get him tested sometime.
Sorry for wandering off topic slightly
:oops:
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Concussus Resurgo
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RR-MS dx 1998 and Coeliac dx 2003
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Copaxone, Cymbalta. EPO, Fish Oils, Vitamin D3 2000 IU daily, Cal/Mag/Zinc, Multivitamin/mineral, Co-Enzyme Q10, Probiotics, Milk Thistle.
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Wish I had better news...

Postby Blissfulinaz » Sun Aug 16, 2009 5:19 pm

I guess I've been back on Copaxone for about 3 years now. I was on Avonex, then Copaxone and then A, now C. I quit copax the first time because I couldn't handle the continued site reactions after 18 months. I went back on it after I had 2 relapses in a short period of time after being off it for a couple of years.

Unfortunately, I still have bad site reactions like you described as well as extensive lipoatrophy in all areas. I never did go back to arms as I just couldn't take it and that's an area that's hard to keep under wraps when you live in a warm climate like I do.

I recently had the Shared Solutions nurse come out and work with me- well she was a nurse who contracted for them. She was sure all her tips would help but I did what she asked- 5 minutes of heat and then used the autoject (which I hate and hadn't been using this time around). She was certain it would be painless. Unfortunately it was one of the most painful injections yet and continued to be painful for about 20 minutes; after about 5 minutes the huge welt developed. I also have lumps that stick around for a week or two. I start running out of places to inject after awhile.

I also don't know what to do. I've just moved and will see my new neuro in Sept. I plan to discuss this with her and see if there is another med we can try.

I do believe that the site reactions get better for some and maybe even most, but I am an example of someone who hasn't found any relief.

I would say, talk with your doctor and re-evaluate. Dreading these darn shots doesn't help the depression.

Best wishes to you!
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Postby kaykayaa » Mon Aug 17, 2009 10:25 am

Well--this is a non-issue now for me. My doctor took me off after I had a weird reaction last week (bone-shaking chills and what I'm now calling the insta-flu--came on about 30-40 minutes after shot and lasted for 20 minutes). So Avonex is next stop. But I'm in no hurry to go there....I am disappointed that I didn't get to the point where the reactions were supposed to subside but this may have been for the best.

Good luck all. You know I will be rooting for this to work for you!
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Postby pager » Mon Aug 24, 2009 8:10 pm

Hi all! Kaykayaa, I am sorry to hear that copaxone didn't work for you. That is so hard to try another drug and start over.....I feel for you.

I have now been on Copaxone about 10-11 weeks and it is okay, not great. The site reactions are not lasting the same length of time, but still it is not fun. The welts on my thighs continue to be 2+ inches in diameter or so, but don't hurt as bad over the next several days as they used to. My arms are okay and are the least eventful area to shoot; I truly attribute that to allergy shots for 10 years in my 30s. My tummy and hips tend to leave marks....kind of a brownish purple sort of small circle and you can see where I have injected there over the past 3 weeks.

My emotions are so much better. I attribute that to the weekly acupuncture, but who knows. My fatigue continues to get better and I biked an hour and a half yesterday. (Biking seems easier on my left leg than walking....my new p/t should have that figured out why that is fairly soon, I hope.) Some days are just still hard. But, I am trying to hanging in there the best I can.

Kids went back to school today and that gives our family more structure for each day. I feel like I missed them these past months between starting working at the beginning of this year (I was a stay at home mom for the past 7-8 years) and from being sick w/ MS. I sometimes feel sad for the ease of my old life; I know that I am still grieving that loss. I do feel blessed and know that my situation could be so much worse.

Okay, thank you for letting me share. THis message board is such a wonderful place to be a part of....thank you!

PS - It is interesting when you read about bee therapy for treating MS. I received mixed vespid and wasp injection shots for about 10 years due to a very very bad reaction to a sting. I am now not allergic to bees, but I don't think it prevent my MS......
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Postby mstshirts » Fri Nov 06, 2009 7:13 pm

For me I went years with no reactions , but recently(2 months ago) I started to develop lumps . I ran across a nurse who said to try adjusting the depth, she was correct. Not deep enough and I had skin reactions and lumps. To deep and it stings I set the injector at 8 and it's been great for weeks now.
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Postby d4vinder » Tue Nov 10, 2009 1:47 am

my wife gets those small lums under the skin a few days after injection... are they related to needle depth?
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