Comments on: My Journey with Rheumatoid Arthritis Medicine

By: Linda

Linda — Thu, 20 May 2010 03:49:24 +0000

Hi Kelly,
Thank You for sharing your story with us. My husband has RA and I’m constantly researching for him and myself. He recently just stopped taking Orencia, he had been on it for about 6-8months and didn’t get any relief. They say it could take up to 6 months but he was anxious for some kind of help he switched to a new one that’s out. (the name is escaping me, starts with an A-infusion) Anyways, he has been on Prednisone also, and I had been bothering him to get off of it. I’m in Nursing school and have learned all the problems it can cause. Plus he had gained 20 pounds or more. So finally after a long time on it, he has cut the Prednisone and his pain has increased dramatically obviously. I saw that you said your Grandpa had problems and was hoping you can let me know specifically what he thought was from the Prednisone. I would appreciate some insight. Feel free to email me if you don’t want to comment here. I pray that you and all the other people suffering from this horrible fight will get some relief. Be blessed! Linda

By: Chelsea

Chelsea — Sun, 14 Mar 2010 08:02:09 +0000

Kelly, I saw this regarding fever. Wonder if it would be worth checking out?

J Clin Rheumatol. 2010 Mar;16(2):88-9.

Subacute thyroiditis presenting as Fever of unknown origin in a patient with rheumatoid arthritis under etanercept treatment.
Vassilopoulos D, Sialevris K, Malahtari S, Deutsch M, Manolakopoulos S, Archimandritis AJ.

From the Second Department of Medicine, Hippokration General Hospital, Athens University School of Medicine, Athens, Greece.

PMID: 20216130 [PubMed - in process]

By: Kelly Young

Kelly Young — Sat, 13 Feb 2010 04:11:25 +0000

Julie, like a marathon, but we are actually being chased so we are trying to outrun RA!! Haha. :silly:

By: Kelly Young

Kelly Young — Sat, 13 Feb 2010 04:08:20 +0000

Thank you, dear girl. I still hope!! :heart:

By: JulieRobbins

JulieRobbins — Fri, 12 Feb 2010 19:52:21 +0000

It’s frustrating that each trial of a new biologic takes so long. I keep trying to tell myself that fighting RA is like running a marathon, not a sprint. (which is kinda funny because I never was a runner; and would be really happy if I could just handle a walk outside in the beautiful sunshine!)LOL

By: URandomnessK

URandomnessK — Fri, 12 Feb 2010 05:56:00 +0000

Kelly, thank you so very much for sharing your RA journey with us. I continue to pray that you will find the medication that works for you and that your RA will go into remission never to be felt or heard from again!

By: Jane

Jane — Wed, 10 Feb 2010 15:42:25 +0000

Professional patients….that we are! I hope the increased Orencia helps. You describe so well the waiting. When I tried my first Enbrel, I sat there waiting “well…well”. Wasn’t the right drug for me either. Looks like Actemra is. Thank you for your blogs. They are so helpful.

By: Kelly Young

Kelly Young — Wed, 10 Feb 2010 13:55:42 +0000

Roberta, Thank you for painting such a clear picture of what is probably much more “typical” than either the commercials or the textbooks. I wish every rheumatologist could read this.

My hope is that even if there is not a cure during our lifetime, treatment is improved by both medicine & better understanding.

By: Kelly Young

Kelly Young — Wed, 10 Feb 2010 13:50:36 +0000

Song,
“It’s hard for me to understand a rheumatologist who doesn’t listen. I don’t know how they can treat RA or other complex diseases without a receptive ear.”

You can’t. That is the problem for so many.

By: Kelly Young

Kelly Young — Wed, 10 Feb 2010 13:47:48 +0000

I love this: “adult facts”! I guess we have to put this together for ourselves.

The obvious answer is that when someone is feeling great, he/she does not spend time blogging about his illness. He plays tennis. :chic: