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Medical Forum / Diseases and Disorders / Arthritis / February 2007On the roller coaster again.
Well looks like I will be off yet another drug. I had my 3rd dose of Orencia on Tuesday morning. Was really spacy afterwards but the nurse and I wondered if it was just low blood sugar from not eating. Went to lunch and about 4 hours after the infusion the headache began in earnest yet again. The other 2 infusions they lasted about 2 days maximum. I still have it now 6 days later. It feels like a vise grip on my temples and forehead and is not getting any better. Went to er on Friday night on the request of my nurse practicioner - she wanted to make sure it was not neurological in basis or a stroke. It was neither - just a damn side effect. Given that I have no reduction in inflammation yet (just the opposite in fact) she figures I am developing antibodies to the med and therefore need to come off. When it comes out that I have had headaches non stop and even demerol orally doesn't stop them that will be the end of the orencia. So will see what the rd says during my emergency visit with him tomorrow afternoon. Damn double damn.(am I allowed to say that). In the meantime am going to take my head back to bed. Probably isn't the best time to buy a lottery ticket. Oh and the constant tylenol they told me to take has wrecked my stomach - don't think anyone thought I would need it maximum doseage for 6 days. Oh and I am really worried about Diane W. Has anyone seen a posting from her? Kelly {{{{{{{{{{{{{{Kelly}}}}}}}}}}}}}} Sorry to hear you have to struggle through yet another complication!!! You poor thing. Enough already!!! Am praying that the headache just disappears and that you can take a wait and see now to see if the orencia will works. Is the rituxan a possibility for you? It has helped me a little bit. Not as good as the enbrel for me, but has helped a tad. That gave me a headache for a couple of days afterwards, but it was tolerable. Donna G. . . . ANGELS EXIST, but some times, since they don't all have wings, we call them FRIENDS...... I will know tomorrow what they are going to do Donna but the NP said I would be going off Orencia almost for sure. I am approved for assistance already for rituxan and that was their first choice in the beginning so maybe.... Pat (my hubby) figures they will probably want a clearout time first so will see what the rd says. I just want the headache to go away - although I took a advil for migraines and it lifted it a tiny bit. I just can't take more than 2 advil or my stomach rebels. Catch 20 - 2. So will know tomorrow. How long since you had the 2 rituxan doses?? They said it wouldn't start to work for me until month 3. Is it possible it will still continue to work for you? Has the garbage in the hospital put you back further? Glad to see you posting again. I really was worried about you. Kelly > {{{{{{{{{{{{{{Kelly}}}}}}}}}}}}}} > [quoted text clipped - 15 lines] > ANGELS EXIST, but some times, since they don't all have wings, we call > them FRIENDS...... >Well looks like I will be off yet another drug. Crap!! I wonder if this is a sinus headache. They can be pretty intense, and if orencia acts like the other anti-tnf meds it is a possiblility. Analgesics do not touch it. I am so sorry that this is not working. I had such high hopes. Take care, and rest well. Rose @}>->-- Being educated means that rather than fearing the unknown, one seeks to understand it. RB Please remove "Ima" to reply. Nope definitely not sinus - no pain under the eye or in the teeth area. The headaches are a side effect unfortunately. Will know more tomorrow night. The other woman taking the infusions with me on Tuesday was taken off after her infusion that day due to no reaction to her inflammation after 3 months. She is going on an investigational med. So will see - will write more tomorrow. I had so many hopes too Rose but would really have preferred rituxan so maybe..... they are trying rituxan on neurological pain and ms. Anyhow won't second guess the doctor. Thanks - just knew everyone here would understand. It is more the roller coaster ride than anything. Kelly >>Well looks like I will be off yet another drug. > Crap!! I wonder if this is a sinus headache. They can be pretty [quoted text clipped - 9 lines] > > Please remove "Ima" to reply. > Nope definitely not sinus - no pain under the eye or in the teeth area. > The headaches are a side effect unfortunately. Will know more tomorrow [quoted text clipped - 11 lines] > > Kelly Yuck! Hoping they come up with a plan soon. As an aside, ibuprofen does nothing for my migraines. But I can often sleep them off after having some Tylenol with cola (actually, any caffeinated beverage would do). Excedrin migraine is aspirin, acetaminophen (Tylenol) and caffeine. Have you ever tried the caffeine route? Adelle The caffeine is bringing it from a 8 in pain to a 7 1/2 for about an hour. I don't think right now there is any doubt it is medicine related - keep drinking water to keep flushing it out. The only thing that lasted more than 3 hours was the shot of demerol but I was in la la land before the car was out of the driveway in the hospital. Thanks Adelle - now I know why migraines are not on my list of things to have. I rarely get headaches and now day 7. I did sleep a bit better last night though - was exhausted. kelly >> Nope definitely not sinus - no pain under the eye or in the teeth area. >> The headaches are a side effect unfortunately. Will know more tomorrow [quoted text clipped - 21 lines] > > Adelle > The caffeine is bringing it from a 8 in pain to a 7 1/2 for about an hour. > I don't think right now there is any doubt it is medicine related - keep [quoted text clipped - 7 lines] > > kelly Am so sorry. With it being a reaction to the med its so hard to know whether the usual stuff for migraines would help. A friend uses the nasal spray stuff for her migraines but said you have to catch it at the beginning. An ex-boyfriend said during the winter, a walk outside in the cold used to help. The la la land comment gave me an idea, though - would a sedative help at all? - just sleep through it for a while. Is Benadryl something you can safely take? For some of us its a world class sedative. And boy, could you use some sleep!!! Adelle bummer. i'm sorry to hear this, kelly. these drugs are such a balancing act. keep us posted on what the rd says tomorrow. diane Please get back with your doctor about the side effects of your last infusion. A person is not expected to live with this for so long and have your blood sugar tested. You need answers and please do not just endure. Harv > Well looks like I will be off yet another drug. I had my 3rd dose of > Orencia on Tuesday morning. Was really spacy afterwards but the nurse and [quoted text clipped - 24 lines] > > Kelly (((((((((((((((((((Kelly)))))))))))))))) Soft and gentle hugs.. dear you have sure been through it I am so sorry that you are feeling bad. ***Sending some hot chocolate and cookies your way*** RhondaM > Well looks like I will be off yet another drug. I had my 3rd dose of > Orencia on Tuesday morning. Was really spacy afterwards but the nurse and [quoted text clipped - 24 lines] > > Kelly {{{{{{{{Kelly}}}}}}} DeeTee > Well looks like I will be off yet another drug. I had my 3rd dose of > Orencia on Tuesday morning. Was really spacy afterwards but the nurse and [quoted text clipped - 24 lines] > > Kelly ((((((Kelly))))) Bless your heart...Hope that they get you straightened out soon.... Hugs Cindy > Well looks like I will be off yet another drug. I had my 3rd dose of > Orencia on Tuesday morning. Was really spacy afterwards but the nurse and I [quoted text clipped - 23 lines] > > Kelly I am wondering if your headache is from a hydration problem. I know others were having that issue too on some of the meds. I sure hope your headache is much much better by now.  SignatureLove and hugs Jo (\__/) .~ ~. )) /O O ./ .' {O__, \ { / . . ) \ |-| '-' \ } )) Warning: squirrels. .( _( )_.' '---.~_ _ _& > Well looks like I will be off yet another drug. I had my 3rd dose of > Orencia on Tuesday morning. Was really spacy afterwards but the nurse and [quoted text clipped - 24 lines] > > Kelly It is gone today finally Jo. it was definitely a med side effect - I have had lots of fluids including water. This was not touched by ice, relaxation, heat, demerol, tylenol extra strength, water, coffee or anything. Just time to get it out of my system. It was terrible - not going through that any time soon. I had the headaches the first 2 infusions but this time it escelated quickly. Thanks Jo. Tired today but not headachy. kelly >I am wondering if your headache is from a hydration problem. I know others >were having that issue too on some of the meds. [quoted text clipped - 29 lines] >> >> Kelly I am glad you got rid of that headache. It was about time. I know you are relieved because of that. When the head hurts there isn't much you can do. Hopefully since you are tired you can get some rest. I know that probably is not likely with you getting ready for a house and such. But I hope you can anyways. SignatureLove and hugs Jo (\__/) .~ ~. )) /O O ./ .' {O__, \ { / . . ) \ |-| '-' \ } )) Warning: squirrels. .( _( )_.' '---.~_ _ _& > It is gone today finally Jo. it was definitely a med side effect - I have > had lots of fluids including water. This was not touched by ice, [quoted text clipped - 6 lines] > > kelly |
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