RA with pleural effusion | Arthritis Information

I don't like hospitals either. I'm always afraid they'll keep me. But if you can get good treatment from either your Rheumy or a Pulmonologist, you can probably avoid the hospital. But don't take chances. Your oxygen level falls too low and your dead.

Your prednisone dose is high, but your MTX is not very high. I'm up to 25 mg which is about the max. Also, they should be doing more to treat the underlying RA much more aggressively. That's what is making your lungs sick. They need to add Plaquenil or something like that and get you on a good biologic like Enbrel.

However, the fear of increasing infection might be hindering their efforts and keeping them from putting you on stronger meds. It would be helpful if you could explain more of what they have done and what they are telling you their reasons are behind their current treatment.

But don't stay away from the hospital. It might be the only way to get this under control.

Please lets us know what happens. My prayers are with you. 

Many thanks for your kind words of wisdom. 

As things stand I have had this fluid for 3 years on and off, however the last hospital visit (FEB 06) caused the lung to collapse during drainage and although the lung is filling up again (now half full as apposed to quarter full in May), I am scared that a collapse will happen again because I was hospitalised for 3 weeks and I hate leaving my 5 year old daughter and teenage son, the chest consultant said that every time you have anything inserted into the chest wall you are more likely to suffer some form of collapse,  However the doc has agreed to try and treat me out of hospital with high dosage of PRED and will review me next week to make a decision.  I was under the chest doctor and Rheumatologist and they all concluded this was connected to my RA.  However what concerns me is that will it ever go away permanently and what are the long term prospects ie: permanent damage or leading to something more serious, I really worry for my kids! They said that the MXT should help but unfortunately nothing yet.  Are there any side effects to high dosage of PRED?  You have all been so kind and I don't want to burden anyone as I am sure I am being well looked after, but sometimes it helps to speak to other people that have an understanding as my Husband does not always seem to understand....  I'l keep you posted.

Bye for now - Lisa in London 

Lisa, last time they did find a little pleural effusion. But not bad at all for me. It did have me very worried and I researched it at the time. That's one of things you should do (if you have the energy). It will help you make decisions about your healthcare and understand why they are doing different things.

Here's a link that might help: http://www.hss.edu/Conditions/Rheumatic-Diseases---Therapeut ics/Pulmonary-Problems-In-Rheumatology

If I understand what I've read regarding this correctly, they have a good chance of getting your problem under control. Pulmonary Fibrous is the one that they worry about. The RA lung can also develop scarring and nodules. In fact, most patients with RA will have some lung involvement but never even know it. It's discovered after they die. Oh, that sounds bad, but that's from research situations.

I think your long term prognosis is good as long as you and your doctors are staying on top of it.

There are side effects with the prednisone. But in your situation, it is really necessary to use the prednisone because breathing is essential to life. And once they get things under control, they can get you off the prednisone.

I think you are in a crisis with your lungs at the moment. So you are going to have to accept whatever treatment is available. The consequences of not getting treated properly could affect you being here at all for your kids. But if you get treated, and they get your lungs healed up, then they should be treating your RA more aggressively. That's what is going to give you the best long term prognosis.

This is the time when you need to ask others for help with your kids and plan for their care regardless of how sick you are. I recommend this to take the worry off of you and them, especialy your teenager who is old enough to comprehend much of what is going on with you. You need to have a long talk with your husband. A lack of good treatment could cause them to lose you.

Also, it isn't a burden on any of us here for you to talk about what is going with you. This is an incredibly complex disease and it affects each person differently. We all need support and that's why we come, to give it and receive it.

It might help to have the doctors talk to your husband and explain how important treatment is. Sometimes, hearing it from someone else brings it into focus. Because you are also going to have to get really good rest to get past this. It's just like when someone has pneumonia. It is very exhausting as all your effort is being put into breathing. Your family is going to have to take care of themselve and you for a change.

You may have decrease lung function, i.e., asthma, etc. after this much going on with your lungs. This is something you should bring up with your doctors. You have every right to ask them what the long term affects are and what you need to worry about and what you don't need to worry about. But I really think they can get it under control.

Please keep us posted as you progress. I realized how scary this is.