Comments on: Bewilderment of Early Aggressive Treatment of Rheumatoid Arthritis

By: Jane Hinrichs

Jane Hinrichs — Tue, 23 Aug 2011 12:11:45 +0000

Useful human beings??!!!! Kelly, I know you posted this a while ago but wow, as I just read it it sure made me mad. What constitutes a useful human being??? Do doctors still feel this way? I know all must not — can’t generalize doctors either. But even if a few feel this way they should resign. My almost 12 year old son has taught me about usefulness in humans. He cannot walk or talk or really do anything on his own. Developmentally he is maybe 3 or 4 months old. To people who don’t know him his life might look useless. BUT, his little life continues to touch so many people, me most of all. God can speak through him in ways He cannot speak through anyone us.

By: Chelsea

Chelsea — Thu, 26 May 2011 02:49:11 +0000

Sharon, I’m sorry to hear about your situation. Pulmmonary fibrosis associated with RA can progress even when the RA is quiet. The medical thinking for pulmonary fibrosis in those cases is to treat the fibrosis by treating the RA. So it means trying the other RA drugs. Arava, Enbrel, Remicade etc. In some cases they might try cyclosporine or cyclophosamide – which have had some success in individual cases of autoimmune-related pulmonary fibrosis. Almost always prednisone is used also unless there are other contraindications. Almost all of the drugs used for RA have been known in RARE cases to actually cause new lung disease or exacerbate existing fibrosis, but most have also been used to successfully treat pulmonary fibrosis related to RA. There is no good way at this time to predict those rare cases really. You need to have rheumies and pulmonologists familiar with this rare entity or willing to do their homework and work really closely with you. Please visit the Huff-n-Puff forum where you can meet others who are in your shoes.
http://www.huff-n-puff.net/newforum/index.php

By: Kelly Young

Kelly Young — Wed, 25 May 2011 01:25:23 +0000

Sharon, that sounds very hard. I’m sorry you have all that at once.

By: Sharon Leishman

Sharon Leishman — Tue, 24 May 2011 20:03:51 +0000

Since being diagnosed in November, I now have pulmonary fibrosis in both lungs per my pulmonologist and he believes I’ve had it for years. I had to quit my job of 16 years and am on oxygen 24/7. I’m only on Prednisone 20 mg. Doctor wants to put me on Enbrel. My question is does it really work and are the side effects worth it? I took methotrexate for 4 months and then was taken off because of the lung problems. Now the new pulmonologist and rheumy don’t think so. Who knows… I just want the pain and not being able to breathe to go away.

By: Kelly Young

Kelly Young — Tue, 08 Mar 2011 16:35:23 +0000

I’d be honored to be quoted as what I said.
Thinking your name sounds very Irish this month Patty.

By: Patty K

Patty K — Tue, 08 Mar 2011 15:42:19 +0000

What a FABULOUS retort! Do you mind if I borrow it?

By: Kelly Young

Kelly Young — Thu, 02 Dec 2010 13:44:43 +0000

Dear Darla, that makes me mad to hear it. I wish we could get that truth on TV right at this moment. I will not give up until we do. & Thanks for the support you give others here too.

By: Darla Conley

Darla Conley — Tue, 30 Nov 2010 14:45:22 +0000

Early aggresive treatment…wtf…My pcp sent me to a hand surgeon for what he believed to be two identical gallion cysts on the back of both my wrists in 2005. That surgeon said he thought I had RA, back to my pcp who gave me a referral to a rheumatologist. This man shot steroids into my wrists and the swellings disappeared. 5 years of treatment with nsaids and his belief that it was osteoarthritis, even though multiple bouts with bilateral swelling in hands and feet, and neck. Referrals to hand surgeon for carpal tunnel release. Then about 7 months ago now, he wanted to rethink his diagnosis and maybe it was RA…This was the most passive man I ever met…if he had been aggressive, I don’t think I would be where I am today…a artist with almost zero strength, crippled and swollen hands. I wish I had found this site years ago, maybe I wouldn’t have been so passive and would have addressed this “rheumy” and I would have chucked him to the curb a lot earlier than I did. Thanks Kelly for helping us to make sense of what has been done to us.

By: Chelsea

Chelsea — Sun, 25 Apr 2010 18:04:21 +0000

Nanc, I hope you are being followed by a pulmonologist for Lung Problems possibly related to the medications and/or to Chron’s and RA itself?

By: Alice

Alice — Fri, 23 Apr 2010 15:19:54 +0000

Nanc-It doesn’t help to be anything but positive! :musicnote: I found that if I let myself get stressed and depressed, and I do at times who can stop the blues in our situations :rain:, I am in more pain b/c I’m keeping positivity out. I went to pre-register for my neck surgery yesterday,my ex took me he’s such a great help,and as the nurse was copying my list of “drugs” she just kept looking up at me until I finally LOL and told her that all train wrecks become there own pharmacy in time and she LOL with me! Laughter is so good for all of us I’m feeling ill from being off so many meds before my surgery but I just keep finding more to laugh about. Maybe I need to cut back on the :coffee: God’s Blessings!