Saw new Sarcoidosis Specilaist | Arthritis Information

 

My appt was last Monday but since the board was down.....Anyway, the guy was great!!  He actually listened to me, read my file and seemed to be genuinely concerned.  He said that ALL my problems are sarc related ad that I most likely do not have ra but may still have the fibro.  Its hard to tell since everything is still so inflamed.

His answer, remicaid!  Its still very new in the use of treating sarcoid but has produced some really good results!!  I am awaiting the insurance approval and ready to start ASAP!  He is also getting me in with the cardiac center at his hospital because he believes a lot of my heart problems are sarc related as well.

I am very excited about finally finding a dr who is actually trying to help me, a little nervous about the side effects of the remicaid and a bit scared it won't work but overall, feel pretty positive!  I know remicaid has been discussed but I'd like to hear from those who have used it, do the infusions hurt, make you sick, will I be able to go to work after the infusion??  Anything else I need to know?

I have been able to work out a little and really watching what I am eating and I have lost 12 pounds!! Good news Michele!  Very glad to hear things are moving along in the right direction for you.*hugs* Don't leave us just cause you ain't got RA.........we'll have to hunt you down.... I had no problems with the Remicade. If fact, there were a few times that I would schedule it on purpose on the day of a trip. Get the med in the morning and then be good to go for the rest of the vacation.

That is good news, Michelle! I hope the Remicade works wonders for you.

Michele, I hope the Remicade works for you. You must feel an incredible amount of relief to have a dr on your side, finally. I have been on remicade for 2 years and haven't have any ill effects. I do the grocery shopping afterwards, before I head back home, and that's kind of an ordeal because I only go grocery shopping every 2 weeks. Are things better with your husband now that you have a diagnosis? Good luck.Thanks girls.  I am very excited about starting it, I hope the paper work doesn't take too long!!  I have been on the humira 1.5 years and still have lots of visible swelling so I need something more!

Both hubby and I have been going to shrinks and we are working on things.  Its still too early to tell for sure whats going to happen but we are trying.
I am so glad for you. It has been such a long hard process for you to get a dx and to find the right dr. I hope things keep going well. Michele, I haven't been on Remicade, but I just wanted to say how glad I am that you finally found a good specialist and are moving forward with treatment.  I know it's been a long, hard, very long, very hard road, and it brings tears to my eyes to know that you are finally getting some progress.  Also great news that you and hubby are each in counselling.  I am a firm believer that everyone could benefit from some regular therapy.  I hope things get nothing but better from here on in!
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