Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group First Simponi Injection

LOL...I had the same experience. I picked Humira from the choices offered and my rheumy did the same thing. I thought WOW...we're going to do it right now!


I SO agree!

Welcome to the group!

Hi Keenan,

Nice to meet you! Thanks for letting us know how well Simponi has been working for you - that is terrific!

My rheumy has twice now suggested that I should consider switching to Simponi from Remicade, although Remicade is working so incredibly well for me that I am quite hesitant to rock the boat. I am though, very interested to hear of your good experience with it and the great results you've seen so far!

Long may it continue!!
mig

I haven't had any side effects that are noticeable.

Just did injection #6 about 5 minutes ago. I haven't been sick once in the past 6 months I've been on the medication.

Woohooo... I love hearing these great stories. I just had my 2nd Remicade infusion. Either by luck I'm just having a good week or it's starting to kick in (trying not to get hopes up too much).

I went for a 30km cycle today and then spent 2.5 hrs cleaning my house!! A few months ago I couldn't even clean half the house without suffering pain and exhaustion for the rest of the dahy and cycling was entirely out of the question.

I am so thankful that we live in a time where these medications are available to us and new ones are being developed every day...

Hey Mig, regarding side effects I got a sinus infection within 10 days of my 1st infusion. Had to have the 2nd one late. Did you also have issues with side effects on Remicade? Like you, if Remicade continues to work for me I plan on sticking with it. The minor inconvenience of having to go in for an infusion is well worth it to know I will be pain-free.

Just curios as to why you chose to do the Remicade which requires infusion when there is Simponi that is a once per month injectable you can do yourself? My doctor gave me the choice and said, in his opinion, the efficacy of the anti TNF drugs are the same.

Hi triathlete,

Sorry that you were struck with a rotten sinus infection, they are miserable. No, I've been really lucky in that regard, in fact I used to get sinus infections approx. once every other year or so, along with whatever colds were going around each winter, but since starting remicade in Nov/04, I haven't had a single sinus infection and I think just 2 colds in all this time.

Not to suggest that remicade has prevented this but only that since beginning remicade, I quickly got into the really useful habit of using hand gel sanitizer whenever I am out and about. I always keep it in my purse and am concious about touching grocery cart handles and anything in public. The stuff really works well!

As much as the biologics do lower a targeted 'part' of our immunity which can leave us more susceptible to respiratory infections, their aim is really only to bring our overly-active immune systems 'back into balance'. A key trick therefore is to try and avoid meeting up with annoying viruses in the first place, if possible. I am not a paranoid type but I won't sit next to someone who is obviously sick and spewing germs! Fortunately for me, I work from home and don't have kids, so they are relatively easy for me to avoid. My ability to recover from a cold doesn't appear to have changed at all since starting remi, if anything, colds have been unusually easy to get over!

Hope this was a fluke for you. I do know we've had a few members who seem so prone to infections that they've had to stop biologic treatment altogether, which just seems so unfortunate, especially when they were helping so much with their AS pain.

Good luck as you continue!!
mig

Immune system effects of TNF treatment is still a mystery to me. I've been on simponi for 6 months and on one occasion i had to take a significant other to the emergency room for 103 fever (negative for flu and strep, other respiratory virus) and i didn't conract it. Been around work when everyone contracted a respiratory virus and i was one of the few that didn't get it. I still don't fully understand the immune system impact of these drugs. I may have been lucky so far, who knows. Its hard to tell if your infection was linked to your treatment or not. Regardless, i still think that even if i start to see myself as more succetable to these things, if the benefits still out weigh the risks.

Hi Keenan,
My rheumy usually starts his patients off with Remicade. He said that's because it's the oldest one on the market so it has the most data. He said that in his experience enbrel seems to be less effective than the others for AS. But I'm not sure that this is supported in the research.

I'm happy to report that since my second infusion about 2 weeks ago I have been doing well. I'm cycling and swimming on alternate days and sleeping so well. I have started wearing a nose plug when swimming in case that's how I picked up the sinus infection. I'm weaning off the pred at 1 my per week.

I feel like I'm getting my life back !