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.
Janie - I am so sorry that the Orencia isnt working for you, the side effects are sometimes so much more awful than the meds themselves. I have never taken it but I had some awful side effects from MTX that made me so ill.
Will your doctor try something else now?
Take care and big hugs to youHI 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!!!!!!
Janie, I have no experience with Orencia, however I do understand about incapacitating fatigue and the frustration of seeking a balance between the effects and the side-effects.
Take care of yourself and ,for what it is worth, I send you my best wishes.
Con brio, HappHugs to you Janie. I am so sorry to hear you are having these reactions. :(So sorry to hear of your troubles, hon. Hopefully your medical team can find some workable solutions from you!
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.
Janie...I'm so sad to hear this. I can't imagine your frustration. 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?Hugs, hugs and more hugs,
Pip
Hi, Janie! I'm sorry you're having so much trouble and I hope everything gets better for you real soon. Lots of gentle hugs I have tried all NSAIDs and I am at the point where I can't take any as they have ruined my oesophagus, and intestines, I have terrible GERD from using NSAIDs and the payoff just isn't worth the benefit. I now can't absorb iron as the NSAIDs have given me some sort of problem where my body doesn't store iron properly so I have to have it infused now. I cannot gain any benefit from eating it, apparently when I swallowed the new camera they use to look at your small bowel, it went thru my body in 1 hour and it should have been 5 hours, my specialist said he had never seen that before, I think he called it fibrosis or something????? Anyway thanks for all your ideas and understanding, love Janie.XX Aw, Janie, honey. I am so, so sorry to hear this. Orencia was the hope for you, my dear friends and it's just crashed and burned.I'm so sorry Janie. I know you must be so disappointed and frustrated. I hope you can get some relief soon. There has to be a solution, there just has to be!
I will keep you in my thoughts and prayers.
Janie, I am so sorry to hear about your reactions and your side effects and all you've been through. That camera thing sounds awfully scary...are they able to do anything about the problem?
I'm wondering if maybe they could take one of the biologics and instead of administering them as instructed, give you little tiny doses and build you up? I don't know if it would give the same benefit, but it might be worth trying if your options are running out. Anaphylactic reactions are so scary, but I know how scary it can be when you're in pain and not able to do things for yourself.
Warm gentle hugs to you...
I understand about the disappointment. Orencia was the last hope for me also. I tried AP after that, but it didn't work for me and I got terrible heartburn with the medicine. So, I stayed off everything for a little bit and went on partial disability. Then my knee went out completely and I am looking at a replacement next year. So I went back on plaquenil and humeria eventhough the didn't seem to help much. I see my rhuemy today so I will see what he says.
Good luck. I know the frustration and feel your pain as I have it the same spot.
Jennifer