Hi! I’m new to this group, but have had P/A for over 30 yrs! Initially on Methotrexate, switched about 15 yrs ago to Enbrel, which has managed my disease pretty well. Over the course of the yrs, I’ve had skin infections, a spike in a protein in my blood managed by a hematologist and in the last 2 yrs, BOOP, a lung problem. I’m just wondering if anyone else out there has had or has BOOP. THANKS FOR TAKING TIME.
Proteinurea, and BOOP are more commonly found in lupus, but not in PsA, so my first question is: are you confident in your diagnosis? In my time here, we’ve never had anyone mention it, nor have I read anything about it (I read a LOT). 
You’ve probably had all of the labs for lupus, but did anyone ever suspect it in you?
Sorry I’m not much more help than this. Maybe our resident guru, TNTLamb, will have more info?
I don't have a lot of good news. Im curious how it was diagnosed. Its generally only BOOP when there is a known cause of infection which is the treated. Grumpy is correct that it is more common with lupus or occasionally RA .
The proreins concern me more than the boop have you had copper levels done as well? Were it me I would do two things. First I'd talk to a pneumanologist. If they don't have a recognized cause, then one would have to consider methotrexate pneomoitis. Virtually identical to BOOP. I'd also have a neuro consult. Those long proteins are indicitive of MS type symptoms that are related to some PsA meds and often come with BOOP like symptoms
There is an outside chance and I mean a real outside chance that your BOOP is great news. The stomach proteins, and BOOP symptoms are associated with a particular Chlamydia infection that is related with a form of reactive arthritis that mimics PsA.
Hi & thanks for ur responses. I’ve been seeing a renowned Pulmonologist for 2 yrs, have taken 3 Ct Scans over that period of time also. During his initial diagnosis, he met with a team of NYU physicians who concurred it was indeed BOOP. Ill let u know what happens after my next meeting with him in November.
Did they mention the cause? Scans are all well and good but with out actual tissue examined by Cytological profile you may have some real conflict in terms of rheumatolgical treatment you won't know if the pathogenesis of your BOOP is that of an inflammatory lung disease rather than a fibrosing process such as in UIP/IPF. In one case steroids are the treatment of choice and and in the other definitely not. For reasons that I have never understood Pulmonologists seem to operate in a vacuum. (thats a funny joke BTW) At least the pneumanologists (they are not the same thing) tend to play more with others (at least where I am) But anyway discuss this with your rheumie. I would assume if you are doctoring at Langone, they are speaking, but over the years I have learned that often doesn't happen especially in the academic centers so ask. If you are doing one or the other elsewhere make sure you ask and see a treatment plan. While BOOP is generally pretty easy to treat, there are an ever gowing number of forms than can cause some real damage. As BOOP has only been recognized 25 or so years, the number of docs who know little about it are a lot.
Hi Tntlamb! I did have a bronchoscope around 2yrs ago, but I didn’t want to have another bx done…although I’m thinking I’ll need to do it! Yes, thankfully all my drs are on the same “linked” computer program, and I’ve found that they do correspond with each other in situations. I didn’t want to take the prednisone, nor have the bx…but I guess I’ll need to soon! Anyway, I have appt NOV 14; with dr & go from there. Thanks again for ur input. I appreciate it!
please keep us posted. hows your PsA doing?
Thanks tbt lamb I will! Thankfully my arthritis is OK on the Enbrel. Sometimes I need extra help from my pal Advil tho! Sometimes I just get tired of taking injections so I skip a week! My hands & feet have a lot of damage, but the damage is at least halted with the meds! I had double foot reconstruction surgery, which, unfortunately left my feet in worse shape then the were. Thought it would help because I felt as if I was walking on rocks…YUCK! Anyway, I also have bilateral foot neuropathy due to my arthritis, along with CAD the docs feel was caused by my arthritis! I know all these things are more common in RA, but I’m told I have PA with rheumatoid changes. I’ve been told that my BOOP, CAD, Protein Spike & Neuropathy have been due to my arthritis. Just try to eat properly, exercise when/how I can & luckily, since I live in Manhattan, get plenty of my walking in! Stay strong & well.
Hi Cescasav....Idk if it's still neuropathy in your feet or if your pain has changed to something else due to the surgery. But for neuropathy I had temporary relief from icing them, and permanent relief from taking prescribed Nortriptyline. The soreness in my feet will probably never go away because that's damage, I'm sure. But my soreness now is mild, especially compared to the neuropathy and pain I had previously. Glad Enbrel is helping you--it's been a godsend for me, too. :-)
Cescasav said:
Thanks tbt lamb I will! Thankfully my arthritis is OK on the Enbrel. Sometimes I need extra help from my pal Advil tho! Sometimes I just get tired of taking injections so I skip a week! My hands & feet have a lot of damage, but the damage is at least halted with the meds! I had double foot reconstruction surgery, which, unfortunately left my feet in worse shape then the were. Thought it would help because I felt as if I was walking on rocks...YUCK! Anyway, I also have bilateral foot neuropathy due to my arthritis, along with CAD the docs feel was caused by my arthritis! I know all these things are more common in RA, but I'm told I have PA with rheumatoid changes. I've been told that my BOOP, CAD, Protein Spike & Neuropathy have been due to my arthritis. Just try to eat properly, exercise when/how I can & luckily, since I live in Manhattan, get plenty of my walking in! Stay strong & well.