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Orencia- strange side effects

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Rheumatoid Arthritis
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Posted 12/18/2012 10:35 PM (GMT 0)
I'm a 43 yr old female - to be 44 on Xmas day. I've had RA for 12 yrs. I figured it out on my own- cause my symptoms don't look normal- and finally had a test. I was right. After that- I picked the first medication available to me- out of 3- and took Sulfasalazine. I was allergic to it- and didn't know- until the 2nd dose- and wound up in the hospital for a week. I have allergies to chemicals- but there isn't testing for it. Since getting RA- it's changed my whole system- I'm now allergic to drugs and antibiotics- some I've had before. I have figured out which families- mostly. But am so scared when I have to take any meds!

They put me on methotrexate for some years- until I became allergic to that. I had splotches all over my stomach and legs. So I never took another dose. While on it- only problems were hair loss, memory loss (pretty bad), and mouth sores. I found that dropping myrrh extract on the sores helped heal them faster. But sometimes up to 5-7 in mouth at once- hurt to eat.

I took enbrel next- and was on it for 5 yrs. Was WONDERFUL. I really didn't have any side effects- felt better than I had since the start of RA. I really never had any flair ups- until years into this. And only a few times- hands and other joints hurt more for a week then ok. But then my blood work started to show- low platelets. It happened a few times. Jan- July it got so bad it was off the chart low. Was taken off it and after 2 months picked a new drug.
I've also lost at least 12-15 lbs for no reason this year.

Orencia- took 2 doses- Aug. 1, 2012 and Aug 15th.
Aug 23- sick!!! flu? sore throat
Aug. 27- urgent care- collar bone hurt so bad- xrays - all ok- RA pain
Aug. 28- UTI (had protected sex)
Aug 30- throat really hurts, diarrhea, spotting/bleeding (I'm post menopausal)
Sept 7th-11th took Cipro for UTI (tried to fight myself w/cranberry juice and fluids)
Sept 12 - Dr. appt- throat so bad- Upper Respiratory Infection- they were worried I'd have pneumonia in a week and gave me Azythromycin for 5 days.
Sept. 20- UTI (had protected sex)
Sept 24- 7 days of Cipro for UTI
Sept 38- throat worse- Dr. appt. Took me off of cipro- making throat worse.

October- started taking temp. because dr. visits showed fever. Usually normal to 100 degrees

Oct 6th- blood work done - showing nothing but I had an infection
Oct 10- tongue on left side- feels burnt- like I ate hot food
Oct 19- throat culture done and more blood work- showing - I don't have strep and blood normal
Oct
Nov 4- lymph nodes on left side of neck swollen
Nov 16- RA dr. visit- more blood tests done
Nov 25- left jaw,skin around it feels tight and pain
Nov 26- Dentist - full xrays- they show no infection or tooth problem
Dec 1 - head above left ear hurting- jaw feeling numb
Dec 4- urgent care- jaw and inside mouth on left side- numb Ct scan shows nothing
Dec 6- hematologist - more blood tests- referred to Ear/Nose/Throat dept.
Dec 10- ENT- scoped my nose- and did a bunch of blood test. Gave me 2 weeks of Clindamycin.
Dec 11- 12 - tingling in jaw- slowly getting a little feeling back, throat still hurts, cough, easily tired

Dec 26th- I have a neurology appt- I want to see them and maybe they can tell me why my jaw went numb- and what might be causing it to have a direction for the other drs to follow!

I'm still not better after all these months. The ENT says go to my regular dr. and RA dr. I've done this for months. They haven't done anything.

I think I have some type of infection in my throat or ear area- that has swollen and is now pinching nerves!
I'm getting scared- if the antibiotics don't work- I'll get worse again. So sick of being sick, sigh...

Anyone have any ideas or opinions? My RA dr. wants me to pick a new pain med- and I'm not even well yet! I told her no way.

Sybil
Posted 12/19/2012 8:38 PM (GMT 0)
Wow--it does sound like you've had it difficult so far.  I started orencia recently too.  I've had two infusions a month apart so far.  I have noticed that for a week or so after the infusion, I tend to get lots of hot flashes (orencia can raise your blood pressure).  I've  not had the same problems as you though.  I've read, though, that orencia commonly weakens the respiratory system so that one will get lots of URIs.  I've not experienced that yet, but I do cough a bit more since being on orencia. 

IN any case, I hope you feel better soon.  My doctor told me that orencia can take up to 5-6 months to have any real kinds of effects, so he prescribed an NSAID for me as well (I also take methotrexate).  It doesn't surprise me that your doctor wants to give you another pain medication, as orencia takes so long to start working.

Posted 12/19/2012 10:02 PM (GMT 0)
Maybe look into a different medicine and getting off orencia...might be time for a medication change...
Posted 12/19/2012 10:44 PM (GMT 0)
Chartreux-
I never took the 3rd dose of Orencia! I was too scared- I've been sick for over 4 months and I'm getting worse, not better. I'm sure I have an infection somewhere, but they can't find anything. I'm hoping my lymph nodes go down after the 2nd week on this antibiotic. Still have a cough and feel generally run down all these months. Just in the last month did I even feel well enough to do anything but go to work.
Thanks

elcamino-
I don't want to take another med until they figure out whats wrong now. My RA pain is creeping back in. They told me my first 3 doses were to be 2 weeks apart, then go to every month or month and a half. I didn't get that far.
My main concern is tonge and jaw/lip numb, swollen lymph nodes and the pain in the side of my head/ear.
Thanks for your input. Anything at this point is help. The doctors don't think it's any worry- so I'm trying not to stress out. But they don't have all these problems...
Thanks

I talked to another friend today, in my art club. She has a strange reaction to lighting. She said she gets the numb/burnt tongue if in a certain type of lighting in stores/restaurants while she is out. She calls it lock jaw- and the doctors never have figured it out. She thinks it's an allergic reaction.
Posted 12/21/2012 3:10 AM (GMT 0)
I'm also worried about your swollen lymph nodes, have your doctors done any blood work, if not then get into your primary care doctor and get a complete bloodwork up and get this done soon as possible, as you need to get this looked at more seriously by your doctors and don't wait. Many prayers to you and keep us posted as we do care.
prayers
Posted 12/21/2012 10:00 PM (GMT 0)
Chartreux-
The doctors have done numerous blood tests and haven't come up with anything. I will email my RA dr. and ask her to get the orders in for complete blood work. And by the 26th I will get the thyroid test, the neurology appt. and the complete blood work done (if she got my message).

My RA dr. couldn't even feel that they were swollen, but the hematologist and the ENT dr. did.
Thanks- need all the prayers I can get!
Happy holidays
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