Going to try Orencia again

Bones, joints and muscles
1

Hi Folks,

Orencia was my besty Drug ever, I didn't even need Restasis for my dry eyes, but I had Bronchitis a lot-- and a lot of prednison, antibiotics and missed too many doses.

We're thinking of trying it again, I am not working with kids so much these days (I was a teacher) so maybe I won't get sick and if I do, we'll stop, but I can't get anything u nder control.

Did any one else have relief from their dry eyes on Orencia?

Mine are now so much worse (Blepharitis, eyelid heat and scrubs, etc) and my pain isn't under control. . . and the FATIGUE! No one but us understands what that's like, right?

Thanks,

Barbara

2

Hi BARBARA

I couldn't keep taking it either same reason chest infections kidney infection UTI loss of voice but it controlled the RA so had to

come off it

Now trying rituximab but had a violent reaction after last infusion so I don't think they will try that one

Good luck if you try it again fingers crossed for you.

3

What I am trying to find out is if the injection was put in the correct place in the front of my thigh when the problem was my hip joint.

4

Hi, I did Rituxan before Orencia, and unfortualtely it didn't do anything for me, but hopw it works for you.

I might try again, and take a lower dose (less often) after the initial loading dose, as it's now by injuection as well as Infusion.

I hope I don't get too sick . .

Thanks!

5

Hi Barbara, how long were you on Oriencia before u started having dry eyes and other reactions.  I started Oriencia about a month ago. 

6

Fingers crossed

7

Joan

  I don't know the answer to your question but I would call the doctor's office and ask about it esp if you read your doc notes that says you got the injection in the exact place as last one.  My sister has had injections for her knee for osteoarth--and the doctor said one time to her that it has to be given in the right spot to be effective.  She has had 4 --one given in a different spot did not work    hope that helps but I wouldnt hesitate to call and question it

 

8

Hi Jo,

Actually my dry eyes improved on Orencia. They are much worse now, I probably also have Sjogrin's as my eyes are very bad, so is my nouth, skin etc.

I was on Orencia for about 4 years. The last year i missed about a third of my treatments due to infections. I will try again, and we are going to try a lower dose, so maybe it will work? It took 6 months to work the first time. And now my eyes are crazy dry.

I hope it helps you! And thatyou can stay well!

Good luck,

Barbara

9

Hi Barbara

Rheumatoid is a dynamic disease that morphs...this is why what helps today msu not help tomorrow.

By observing a person's reaction to a drug, we can learn a lot about the rheumatoid in their body.

Sjogren's can be a primary immune disorder or a secondary immune disorder to a primary disorder such as rheumatoid.

Because both Sjogren's and rheumatoid are diseases where our body does nor recognize itself, both diseases respond to many of the same medications which reduce inflammation.

Eyes can become so dry that the cornea may dry which can produce blindness. In 1987 I underwent bilateral (both) occlusion of the lower tear ducts.

The tears in our eyes are comprised of three layers...oil, water, mucus...dry eyes manifest when we lose the water layer. To avois further surgery, I have successfully used Restatis for more than a decade. Other alternatives include temporary tear duct plugs and frequent eye drops.

Restatis reduces the inflammation that causes dry eyes...it is effective. Restatis is not a cure.

So, back to rheumatoid...Both Enbrel and Humira are TNF driven...Tumor Necrosis Factor. Individuals whose rheumatoid favorably responds to either Humira or Enbrel is said to have TNF driven rheumatoid.

Rituximab is a monoclonal antibody against the protein CD20. For those who respond favorably to Rituximab, we say their rheumatoid is CD20 driven

Rheumatoid may be successfully treated with an NSAID...Non Steroidal Anti Inflammatory...Orudis. Feldene, Naproxin, Naprosin, Indomethacin, Butazolidin to just name a few.

or

Steroids...prednisone, methylprednisolone, budesonide are just three

or

DMARD & Biologics..disease Modifying Anti Rheumatic Drug...this class of medications modify the way the disease behaves...methotrexate, hydroxychloroquine, sulfasalazine, Orencia, Remicade, with methotrexate being the gold standard and rituximab which is typically an infusion.

With the advent of Enbrel in the mid nineties, the face of rheumatoid radically improved. Those who face this disease today should never face the full fury of this disease.

Nevertheless, matching a sufferer with the best medication continues to take time. Work with your rheumatologist to fine tune your effective treatment....DMARDs and biologics mean your rheumatoid may one day be driven into remission.

After 54 years of juvenile rheumatoid that has ravaged my body and left me deformed, I enjoy relative quiet. And once things quieted down, I forgot about the times it raged.

May your quiet time come quickly

kind regards