Question for People using Imuran!

Hey! Hope everyone is doing well. I had a question for people who have taken Imuran for over a couple years. I'm a 27 year old male who had my last UC flare back in February 2006 and I'm doing really well in that department. I've been taking both Salofalk and 175mg/daily of Imuran. I still have regular blood tests done every couple months and they always come back perfect across the board. Now I also have generalized anxiety and have been doing pretty well without medication but I always question whether my side effects are just from anxiety or from taking Imuran.

I find that I always have kind of a tightness in my upper chest. It isn't painful...just more of a muscle tightness. I first noticed this after some of my Remicade infusions but I only did them for a year. I get muscle twitching every now and then too. I also feel like I aaalways have congestion with flem that makes my voice raspy at times. Occasioanlly I also have sinus pressure...I'm known to have seasonal allergies but this summer I didn't have a whole lot of allergy symptoms I'm used to such as itchy watery eyes, itchy nose, and itchy back of throat. It just feels like I'm always stuffed up, fatigued, and light headed. I also seem to notice that I have dark cirlces under my eyes a lot of the time. I seem to look a little pale too which I notcie even when I get outside and spend time in the sun! Has anyone else notcied these as side effects with Imuran? I've been to the doctor for the chest thing a while back and both my cardiogram and chest x-ray was perfect, as well as pretty much every type of blood test I've ever taken. It's been tough when the doctor doesn't seem to think anything is wrong and I just sound like a worrier. In some ways I wish I could just go off Imuran for 6 months just to see what I feel like, but the docs would tell me that it would be a major risk of another flare up. I guess I've also kind of always worried about my immune system with Imuran...especially with the whole Swine Flu season coming up!

Anyways it'd be cool to hear if anyone has had similar side effects with Imuran and any thoughts as to whether these could just be anxiety symptoms. I'd aprreciate it!

Thanks!

 

well, I'm tired often & find I need to go to bed by like 9:30 every night. Plus, I can ALWAYS take a nap during the day, if possible. I don't get dark cicles under my eyes, I'm fairly pale but I use sunscreen religiously, & the chest tightness/congestion, I do get. Not all the time, but much more so since I got pneumonia a few years back, & since I've been on Imuran & Remicade. It always goes away after a few days, without materializing into any sort of infection, so..... I don't bring it up to my doctors! Half the time, after an infusion I expect the pneumonia to crop up again, which it actually did last winter. But I was able to catch it early & start antibiotics. I worry about my overall health also- being on 2 major immune suppressors can't be good! But, it's better than lying in bed for weeks, only getting up to rush to the bathroom, being unable to eat & even barely drink water. I guess I look at the meds as the lesser of 2 evils. And I'm hyper-vigilant about my health- when I got pneumonia for the 2nd time, I felt bad for about a day & right away ran to see my PCP. If there's any weirdness going on with me, chest-wise, I'm all over it. Unless you actually get sick, or start to run a fever, I wouldn't worry about it. Believe what the docs are telling you, based on the xrays & labs- there's nothing wrong!

I've been taking Imuran since last December so it's almost been a year now. I did have some anxiety problems and some nausea problems. I take Ativan for the anxiety and I switched to taking my Imuran in the PM instead of the AM which has helped greatly. Sometimes I wake up in the middle of the night but generally I sleep through all of the nasty side effects. You might want to get on a low dose of Ativan. I carry it around with me and only take it as needed.

This will be the first flu season that I will be going into with Imuran, so I am a little nervous myself. Our immune systems are down on Imuran. You know this, but, be careful to never share drinks with anyone and to wash your hands a lot. I carry antibacterial wipes. Also get your 8 hours of sleep every night. I always seem to get sick when I run myself ragged and don't get enough sleep. Sometimes it's hard when everyone else can stay out and you know you can't. (I'm in my 20's too....) But it's worth it to get your rest.

My doctor also is very hesitant to take me off of any of my medications. Last March I asked when I could get off of the Imuran and he said we'd "talk" about it this upcoming March if I had no problems. A year. Blah. But I bet I won't even be able to get off of it then because I feel like I'm going into a flare now. (not positive... just the beginning stages... argh... I'm hoping it will pass) So it also makes me wonder if the Imuran is really helping me at all? The only thing in the past that actually put me into remission was the Remicade, which I can no longer take, so the Imuran was instilled for maintenance. And if I remember correctly, Imuran only works for 60% (that could be wrong... I don't know why that number comes to mind but it does) and so I'm worried I'm in that dreadful 40%.

Sorry! I just went off on a tangent! Hope something I said may help!