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Donkey

My BP is generally on the lower side anyways, as I have orthostatic hypotension, but my last few infusions BP has been dropping to about 85/50 or something in that vicinity. The nurse didn't seem concerned, and neither was my doctor. I usually stay mostly laying/sitting for the next 48 hrs or...

DanaBanana: I didn't do well at all on the pills. I took them for 3 years when I was in high school, and ended up almost entirely homebound because they made me so sick. The injections have definitely been more bearable for me as far as side effects. Why did your doc switch you to pills? I'd...

duh panda: I'm a bit late - I haven't kept up with the forum lately - but for the past 4-6 weeks, I've been having awful migraines 3-4 times a week, which isn't typical for me. I've had migraines sporadically throughout my life, but only maybe one every couple of months until now. It hadn't...

cdnrose, I think we all feel that way! But, if it comforts you at all, I do MTX injections weekly and Remicade every 6 weeks, and I can honestly say that the MTX side effects are way worse than anything I get from the Remicade (that didn't come out as comforting as I had hoped...). In all...

aarthi: You're very welcome, I hope it helps! Keep us updated. :)

aarthi: I have chronically low bp associated with dysautonomia myself. Mine used to run about 90/50, which sometimes even caused me to pass out when I would stand. I take prescription meds for it now - Florinef, which builds blood volume, and midodrine, which is a vasoconstrictor - but if you...

dave13: will do! My next infu is in about 2 weeks, so I'll fill you all in on how it goes. theresad: Interesting to hear about the seasonal allergies. I never had allergies as a kid, but the last few years they've been terrible. I never made a connection to the Remicade though. aarthi: I...

Hi AnnieYa! Don't feel like it's "pathetic" to have trouble dealing with it all on your own. I had my own issues when I moved away from my family to attend university, and I was only having fairly mild symptoms at the time. When I'm in a real flare and living alone, it's still a struggle. Hang...

CD Mom: I'm not on entyvio, but I would say that the MTX injections have been very helpful for me, especially for my arthritis. I take it in combo with Remicade for the CD. The oral form made me sick as a dog, and the injections had some bad side effects at first too, but I've been doing the...

dave13: I've had bad veins since I was a kid, but lately it's been crazy. Three or four infusions ago it took them 9 sticks to get a line in, and the last 3 were with an ultrasound. Now they schedule a PICC nurse to come with an ultrasound and the extra long needles every time anyways. That, in...

aarthi: I had to go through a whole slew of drugs - including going off Remicade and then restarting it - but the last moderately severe flare I had that caused them to put me back on the Remicade it worked like a charm. Started noticeably helping after my first infusion and the second loading...

I typically go by myself. I'm a college student, so I live several hundred miles away from family. Occasionally a friend will come just to keep me company, but more often than not I'm alone. The benadryl doesn't put me to sleep, so I'm fine to drive. I usually just do class in the morning...

I've never taken Entocort, so I can't speak to that, but as for myself, I was diagnosed with arthritis at the same time as my Crohn's Dx, before I had ever taken any medication. So, mine definitely wasn't a result of meds. According to my rheumatologist, it is pretty common for people with...

Welcome, linkdead! Glad to have you in the community, and sorry to hear about the flare. Thanks for sharing your story! You certainly aren't the only one.

Lucille: I have to say, Remicade has been a miracle drug for me. I'm usually pretty exhausted for a couple of days after the infusion, and sometimes a bit of nausea at the hospital, but I had my doctor call in a standing order for Zofran, so now I can just ask the nurses and that takes care of...

Yeah, that is nice - I think that waiting on the pharmacy adds probably an hour onto my hospital time. I wear a BP cuff the whole time, and it automatically runs every 15 minutes. When the nurses hear it going they come in and take my temp. I usually wear a pulse ox the whole time as well...

I think that depends on the hospital, dave13. I know mine won't call the pharmacy until I'm there and the IV is in, because the Remicade is so expensive. One time they had a lot of trouble getting IV access - it took them almost 2 hours - and they almost had to toss the Remicade and order a new...

Thanks for the quick response Duh Panda. I've been on the MTX for about 3 months now, so I'm still holding out hope that over time the side effects might lessen somewhat. I've been on 1 mg/day of folic acid since I started the injections, but maybe I could talk to the doc about whether upping...

Has anyone else had issues with feeling feverish after an MTX injection? I took MTX orally several years ago, but had to switch meds due to the awful side effects. Now my rheumy has decided that it would be worth trying the injectable form to avoid some of the GI side effects, which has worked...