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Old 01-20-2013, 10:45 AM   #1
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kgat98 HB User
Unhappy Need some H O P E


Hello Everyone.
Feeling very bad at this moment, things just get worse..
Many joints are very immflammed. My knees,ankles and hips are so bad that I really just cant walk any long and I have losen my balance. My jaws,neck,shoulders,back,albows,wrists,f ingres,toes are also very ill.
Used prednisone for a while now but was trying to get of it and are now down to 5mg every other day and once I got under 10 my joints got even more worse than the beginning.. But one good thing my rash and fever have been good controled when useing prednisone even on 10mg!
The Orencia should had kicked in now but it hasent. Cant use more prednisone now, soon Im down to 2,5mg.

Im scared were will this end?
I training every day, its very hard but also very fun and I now without training I havent been able to walk..
My muscles just feel like they have gone away.. muscle weakness.
Since my joints are so bad now and many are immflammed I just dont now what to do. Ask for more prednisone? Ask for an cortisone injection and draining? - but that failed last time so Im not sure.. Ask for something else?

Waiting for an app in a larger hospital with more people. They will find out what meds to give me since the orencia isnt working but until then I need to use orencia and just wait and hope for the best.

 
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Old 01-24-2013, 02:59 PM   #2
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eggyby HB User
Re: Need some H O P E

Orencia takes a good 6months to kick in....much longer than the other biologic drugs. But if it does help, it is really good. None helped me but Orencia finally did and after 4 years on it, I don't even feel like I have RA anymore.

How long have you been on Orencia?

Eggy

 
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Old 01-25-2013, 02:44 PM   #3
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kgat98 HB User
Re: Need some H O P E

Quote:
Originally Posted by eggyby View Post
Orencia takes a good 6months to kick in....much longer than the other biologic drugs. But if it does help, it is really good. None helped me but Orencia finally did and after 4 years on it, I don't even feel like I have RA anymore.

How long have you been on Orencia?

Eggy
Been on it since the start of October last year..
So happy for you that it did help,and hope it will continue to do it.

 
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Old 02-07-2013, 09:44 AM   #4
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Re: Need some H O P E

I am so sorry you are down... You didn't mention what is your diagnoses, but being on Orenica I presume you have RA, right?
Did you doctor tried MTX first or went right for biologics? Usually they start from mild forms of help and if this not working, they go to harsher treatments.

I am suffering with RA since my teens. Have been on many biologic but none put me in remission. Only when my RA Dr put me on Orencia infusions (once a month IV infusion) I went in remission for 6 whole month. It was the best time for me, but unfortunately like with most of them, it stopped working. I started to feel better in 2 weeks after my first infusion. Works fast. No need to wait for 6 month to kick in, this medicine intended to help you right the way (in about a month you should feel results) or not.
We tried practically all of them, nothing worked for me. So finally when Orencia shots came out, I started them.

My RA Dr doesn't believe in trying drug for more than 2-3 month. She always says, this is too risky of a drugs to play for a long time if not positive results. I read myself that if any of the drugs don't work during first 2-3 month, it means they are not for you.
Both times with Orencia, I started to feel relieve and see great results withing first month. No more swollen hands, pain, low grade fevers, etc. But once again, short live; back to square one.

I want to tell one important thing though, the key to successful treatment and feeling better is the Doctor. Yes, it is. Even in my case where nothing is working and we both see damages done by RA to my body, my Dr doesn't give up. I see her every 3 month for an a/p and blood work but in between she emails to me information about new drug came out, how am i doing and what do I think if we change this or add that... Another words, she is not giving up on me and it gives me hope that she will try something else and I will get somewhat better...

Hope is everything; I know you are in pain right now but believe me, they have now so much to try on you, just make sure your RA DR on top of things and not the one who puts a person on a drug and doesn't bother to see if it working or not.
I met one day a lady at my RA waiting room. Her hands were very RA, worse then mine and she complained of pain. She asked me how long do I use this RA DR and if I am happy with her. Oh yes, I do!! She told me a story how she picked RA Dr from "Best doctors " of her state magazine and trusted him with her heart. He puts her on Enbrel and MTX. She didn't have much sign of Ra, just pain. She complained to him about swelling, pain, nausea from MTX (which is normal, I was very nauseous on MTX as well). He kept her 5 years on this combination with no relieve. He told her it will take a long time until she sees results and naive her, believed him. She lost 25 pounds and he still did nothing about it.
Only after she passed out and ended up at the hospital with severe dehydration , the RA DR who saw her there, told her that her liver enzymes are very high, she must stop all medication until they fix the problem. Her RA never took her blood during treatment even though by law they require to do so every 3 month.

This is why I always tell people: be smart about it. Trust, but if things dont work out the way they should make sure you do you homework and see another opinion in the area they dont know your previous doctor.

Best of luck to you sweet heart
Moldova

 
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