Not feeling with it!!!

HI guys, I just thought I would update you on my problems with Orencia.

I had a phone call from the company today and the administrator indicated that I probably would not be able to have it again!!!  That is the story of my life.  After the anaphylactic reaction and now side effects that are really bothering me, I don't think I want it anyhow!!

I had to travel to Brisbane at 1.30am yesterday to see my sleep specialist re sleep apneoa, that went ok but I had to walk around for a while to get a few things done and it shocks me when I do this (I have been using my mobility scooter around my home town, but couldn't take it with me) that I really am disabled, it made me cry, the pain was so awful and my elbows, wrists, hands, fingers, feet, ankles,knees, shoulders, hips, spine and neck were all involved and I had to keep asking people for help or it became so obvious to people that I was struggling that they helped me anyhow.

Anyway re. the Orencia, I am having nausea, dizzy spells, mouth ulcers, sore gums, abdo pain and bowel motions every time I go to the toilet, sorry if this is too much information, also crippling fatigue,has anyone else had these side effects with Orencia.  Thanks for listening guys.  Love always Janie.

HI Lisa, my rheumy said that I was discussed in Boston and nobody had an answer for him because of all my allergic reactions to everything!!!  Mtx I can tolerate at 10mg but it is not enough to make a differnce to my inflammation levels.  There is nothing really that I haven't tried except Remicade, Anakinra, and Rituximab.  My rheumy won't try anakinra s he reckons there has not been much benefit for people on this one, the Rituximab he said is too risky as once he administers it, no.1 if I have a reaction he believes it would be serious as it stays with me for 12 months and no.2 I would not be able to try another biologic for 12 months as the Rituximab will stay active for 12 months ????????I don't know what next, pred seems to be the only thing that works but I need to get off of it due to all my problems on it.  HELLLLLPPPPPPPPP!!!!!!

Hugs to you Janie.  I am so sorry to hear you are having these reactions. :(

 

Janie, I'm so sorry for what you're going through.  You seem to have run the gamut of difficulty with meds and their after-effects.  Since the MTX works somewhat, could you very, very gradually up the dosage?  I mean, just go up 2.5 mg. and stay that way for a couple of weeks, then one more pill for two weeks, etc.  Maybe you should ask your doctor about this.  Regardless, I'm truly wishing you better days ahead and I'll be thinking of you and how you're doing, so please keep us posted. 

Damn Janie. This is totally what we DIDN'T want for you. Well poop.......what med are you onto next?? Remicade?? Man there's GOTTA be something out there for you. Do NSAIDs not do squat? You could ask him to start pulling NSAIDs used for other inflammatory diseases. Hell, what can it hurt, right?