[GwenM]

Hi guys..I am back..It has been awhile since I was here to post but I need some replys about a new med my Dr. wants to start me on. I think it is Orencia.

He says I have some type of auto-immune disease that is rare because the tests show a negative RA but positive ana and something about it having to do with a T1 gene (?). I have had joint and muscle problems as well as Lupus-like symptoms for over 20 years. I am sorry that sounds so confusing.
I have had blood work done and am waiting to see the Dr. next Friday. He wants to start the infusions of Orencia then. It will suppress my auto-immune system according to him and the other research I have done and I will need to have at least 8 infusions in a month and once a month after that. I am a little afraid of the other things I could get while starting this new med. I had to have a TB test as well as HIV and hep.C before starting this. So I guess I just want to know if anyone has used this and if not what you all have heard? :sad:

I am looking forward to some great feedback and hope some of you can give me some first hand advice.
Thanks so much!!!!!
GwenM

 

[keebler]

Hi Gwen,

This is what I found when I looked it up.

Abatacept (Orencia). Abatacept reduces the inflammation and joint damage caused by rheumatoid arthritis by inactivating T cells — a type of white blood cell. People who haven't been helped by TNF-alpha inhibitors might consider abatacept, which is administered monthly through a vein in your arm (intravenously). Side effects may include headache, nausea and mild infections, such as upper respiratory tract infections. Serious infections, such as pneumonia, can occur.

Here is the link.....

http://www.mayoclinic.com/health/rheumatoid-arthritis/DS00020/DSECTION=treatments-and-drugs

Sorry I cant be of much help.
Take care,
Lyn

 

[Maia]

I an understand your concern about starting this medication... I am sure your doctor has his reasons for prescribing it although it is not commonly used for lupus at this point. What other medications have you tried and what has the effect been? If you've been through the usual list of medications without much benefit, then I'm just glad for you that there is something else to try!

Good luck... hope it helps a bunch. Please report back if you go on it and let us know your experience as it may help others in the future...

 

[GwenM]

Thanks for the information. It is nice to know I can get a few other opinions here. I will keep posting.
Gwen

 

[mommygiraffe]

I am on orencia now for mixed connective tissue disease, that my rheumy says is "mostly lupus" I will get my third dose next week, barring any thing infection wise happening. The infusion is only a half hour long, not counting the time it takes them to find a vein in my alien body, lol.That is compared to the six hour Rituxan infusions I was getting. blech. I am a horrible "stick" the nurses say. I get it done in an infusion center in the hospital where cancer patients usually get chemo. It is nice, I have my own tv and free snacks!!!! :rotfl:I havent' had a single side effect yet, unless the influenza A was considered one, but my rheumy says it was acoincidence that I got it. The only issue now is that I am having "seizures" according to my rheumy and hallucinations, that started with the orencia, but are NOT!!!!!!!!!!!!!!!!!! related all the doctors say. Next week, hopefully, I get an explanation for them. I want to drive again. grrr. But, I wandered away there a second. I googled orencia of course when I started it, and the "experts" don't have a good outlook for it for lupus or mctd that I could find, Not that I'm a good googler, AT ALL. It does take SIX MONTHS!!!! to see results, so I am being patient and hopefull and praying. Hugs, Jen

 

[GwenM]

Orencia

Jen: It sounds like your experience has been an interesting one. I don't have all the details as far as how I will receive it but I think my dr. does it in his office. I am hoping the side effects are minimal, but compared the agony I am in they would have to be pretty bad. I hope this works out for you and I am looking forward to getting more info from the dr. on Friday...
Thanks for the post!
GwenM

 

[dastolz]

I am on orencia now for mixed connective tissue disease, that my rheumy says is "mostly lupus" I will get my third dose next week, barring any thing infection wise happening. The infusion is only a half hour long, not counting the time it takes them to find a vein in my alien body, lol.That is compared to the six hour Rituxan infusions I was getting. blech. I am a horrible "stick" the nurses say. I get it done in an infusion center in the hospital where cancer patients usually get chemo. It is nice, I have my own tv and free snacks!!!! :rotfl:I havent' had a single side effect yet, unless the influenza A was considered one, but my rheumy says it was acoincidence that I got it. The only issue now is that I am having "seizures" according to my rheumy and hallucinations, that started with the orencia, but are NOT!!!!!!!!!!!!!!!!!! related all the doctors say. Next week, hopefully, I get an explanation for them. I want to drive again. grrr. But, I wandered away there a second. I googled orencia of course when I started it, and the "experts" don't have a good outlook for it for lupus or mctd that I could find, Not that I'm a good googler, AT ALL. It does take SIX MONTHS!!!! to see results, so I am being patient and hopefull and praying. Hugs, Jen

Jen,
How did your doctor get the insurance to pay for Orencia? My doctor prescribed it for my Lupus but it was denied. Any advice or tips would be greatly appreciated. I've tried all the other drugs and nothing has worked.
Darcy

 

[mommygiraffe]

My rheumy told the insurance company that I have Ra in addition to the lupus, that I am a "seronegative", since my dx is on the blurry side anyway. Also, since I have tried remicade, mtx, and rituxan in the past and they haven't worked they are willing to try something else. The only thing clear about my dx is that I have mctd. (Ana and anti rnp both positive) I do not have any ra damage, but do have some of the overlapping symptoms, joint pain, fatigue, etc. Not all rheumies, rightfully, are willing to be as flexible with what they tell the ins. companies, but lately my pcp has told the ins. company I have amnesia toget them to pay for my mri/mra of the brain, and the neurologist has told them I have arythmia to get them to pay for my ekg. ( I have been having "seizures" they can't explain) so I guess it is something that is a shade of grey with them. It feels wrong to me, but I am much too much of a black and white person myself.