Rheumatoid Arthritis Support Group

Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...

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Caspiana 02/11/2015

Hello. I am not new to DS but have been away for a long time. A brief history. I have had RA for six years going on seven. It has been quite aggressive but I managed to keep working with the aid of painkillers and because I loved my job. I started having breathing difficulties on exertion in summer. At first my doctor rather naively thought I had asthma. Asthma puffers didn't work so they probed a little deeper and I was sent to a pulmonologist. He diagnosed me with Broncholotis Obliterans a manifestation of RA that is so rare they have never seen another case. Unfortunately it is a terminal illness and the only hope of surviving a bit longer than expected is a lung transplant. I was wondering if anyone else has this condition or a similar condition? Trying to stay positive.

Cas

Caspiana 02/11/2015

Thank you Sally. Yes I am with a university hospital but before I started on any sort of steroids I wanted to get a second opinion which I am getting next week from a ' leading pulmonologist'. I just want to be careful. I've done so much reading on it it's doing my head in. Tiring and quite negative. Thanks for looking up that information though. I really appreciate your response.

Cas

Angelpuss 02/12/2015

Hi Caspiana,

I am one of the few "oldies" (in more ways than one) and I remember you well from several years ago.
I am so sorry to hear about your bronchiolitis obliteran condition. I know little about it so I shall do some research. I'm glad you're getting a second opinion. Please keep us in the loop.
Keeping you in my thoughts.
Gentle hugs

depotblue 02/12/2015

hi Cas

i am in the olide but goodie group like angel. I am saddened by this news for you. Keep us posted. Are you home on full time oxygen? are you comfortable while you figure out next course of action? and let us know what all the specialists say for you.

we had another member on here for a while who posted his journey with BOOP. if you want to contact him off list private message me.

I have had two ICU admissions for penumonia, 2010 and 2014 and have a partially collapsed lower left. my next full pulmonology work up is in about 6 weeks.

i will keep you in my thoughts

depot

Caspiana 02/12/2015

Thanks Angel. Yes I was here years ago. But then I felt better and didn't come here much. Now I've had to quit work and spend my days catching my breath and unfortunately in bed. I am only 41 and feel a bit cheated out of life at the moment. I am generally an optimistic person but this last week has been bad with terrible pain from RA and breathlessness. Trying to stay positive is harder than I thought.

Caspiana 02/12/2015

Thank you Depot. I am sorry to hear about your pneumonia. RA is bad enough with the pain and terrible stiffness but when it starts to attack one's vital organs we really know it in all it's brutality. I am not on oxygen full time ....yet. But the doctor tells me that is coming further hindering my already laboured movements. Thanks for offering to put me in contact with another member with BOOP. I will message you.

Caspiana 02/12/2015

Buddhacat I have no idea what my oxygen levels are and I should one of those devises. I just know I get really breathless if I am in motion. Even walking to the bathroom sets me off wheezing with a terrible dry cough. The doctor is so slow with the respiratory therapy. He is actually waiting for my second opinion results before starting any drugs. He told me drugs would maybe slow and help symptoms but it is not a cure. He said I would need a lung transplant. The waiting list is three years apparently where I am currently. I was told that might be too long for me. I live in Japan where organ donors are few and far between. In any case I wasn't given much hope by the doctor.

Because I have been feeling so exhausted and unwell I have since resigned from my teaching job and have far less active than before causing my joints to flare like nobody's business. It's a vicious circle. If I move about too much I can't breathe and cough like crazy. If I don't move my joints hurt like crazy. I feel like I'm in a no win situation. I'm just tired of everything.

Caspiana 02/12/2015

Sally it was heartbreak to leave my school. I had to leave midterm too. Very suddenly. I left my co-workers in the lurch and although they won't say it I know it's a burden for them. What grade did you teach?

I find my days spent mostly in bed. I try and do things but I have no energy and breathlessness keeps me wanting to stay still. The cold weather doesn't help at all.

I have a family two girls one in her last year of university and the other in the second year of high school. I thank God everyday I had my children young and they are independent now. My husband is very supportive but he works long days. I have friends but am hesitant to tell them what's going on. They think I'm still working. I live in a very small community and when tongues start wagging well.... you can imagine.

Caspiana 02/12/2015

Thank you Sally. I feel grateful for the support I get here. Buddhacat I also found it hard to understand that BOOP and BOS are different and one is treatable and the other is not. Quite confusing to say the least. It would have been helpful if the names weren't so similar.

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