[LaurieC]

Hi ,

I am having a hard time this week. I had to go to the ER last Fri I could not breath. they said I have infflamation On my Lungs Plurisy ? I guess . Won't know more till more tests are ran. I guess my rhumy has put a stat on all my medical info from all other Dr's. I am now back on Prednisone. He wants to Posibbly start me back on Plaqunil or something called Methotrexate. I have to go see a Heart Dr next week to see if there is any infflamation there to. I guess I am just ranting sorry I am just fed up. I feel if your going to treat me for Lupus then give me the DX for it. At least then I can feel I am fighting for a goal and not for something that " is not there" I guess it's all in the mind-set . Well thank you for hearing me out .

Is Plurisy Common in Lupus?

 

[Primrose1960]

Pleurisy

Hi,

Sorry to hear about your pleurisy, it would seem that a lot of people with lupus can suffer with this.

I can understand how frustrating it is to not be given the right diagnose but you have to persist with your specialist consultants to get to the bottom of this.

I just wanted to wish you a quick recovery and Im sure someone who has had pleurisy will post here soon.

Best of luck,

Primrose:foryou:

 

[Lily]

Hi Laurie,

I'm sorry you are so ill right now ((((((((Laurie)))))))))). Let's hope this latest episode gives your Rheumy a kick up the backside to get you started back on Plaquenil at least! It really helped my Pleuritis episodes. I had suffered them long before diagnosis and visited hospital several times to get it under control - IV Pred usually did the trick and other times oral Pred fixed me up. It's not a pleasant thing to have :hug: and extremely common in Lupies, so you have our sympathy.

Are you on any anti-inflammatories? Between those and the Plaquenil I think it really made my Pleuritis almost disappear off the radar.

Another condition common with Lupies is Pericarditis (inflammation of the lining around the heart), which is probably why he is sending you to a heart specialist. But really I don't see a whole lot of point to that unless you are suffering Pericarditis at the moment - and believe me you would know if you were. Perhaps he thought this latest episode was a combination of Pericarditis and Pleuritis. I used to get both, thankfully not at the same time. Either way I guess it's good to get your heart checked out.

I really understand your frustration with all this If it looks like a duck, walks like a duck then why not call it one I think that you need to have a chat with him and force the issue of starting back on meds, Plaquenil at the very least as it's going to take some time to kick in. It won't hurt to explain to him just how fed up you are with this and even if he isnt going to name it can he at least treat it so you can get some quality of life back. All too often we put on a brave face (I know I've been guilty of it) and they get in a rut of just plodding along. If we stand up and make them take notice, sometimes we are surprised with the speed of their action in helping us achieve that. It might not be the case with your doc but at this stage anything is worth a shot.

Just wanted to send you hugs and hope that the Pred is already going a long way to helping you feel better.

love
Lily

 

[cemc]

I've got no diagnosis either, but have also been having lung problems recently. I've seen two different GPs who have listened to my breathing, done peak flows (really really low) and given me first ventolin, then steroid inhaler, then a cough suppressant. I only took the cough suppressant for two days as it was making me more congested. The cough is finally easing, though I think it has just run its course after nearly 6 weeks. Neither GP seemed to think it necessary for me to get a chest xray, or do anything else. I'm sure it would have been different if I had a diagnosis

 

[LaurieC]

Thank You so much All ,

I can breath alot better on the pred. And yes I am on Relafin for a antiflamitory . I still get realy short of breath when doing anything at all . It gets better with rest. Although when I started back on the Pred it caused a flare of my IC of the Bladder so I am Back on what is called a Bladder Cocktail ( sodium Bicarb, Lidocaine, and Heprin,). I just was wondering once on the right meds does your quality of life get any better or will it always be like this. I hate being sick and it seems to be a regular thing lately one thing after another sometimes overlaping . I realy do love the support of everyone here . It seems people in the real world just don't get it you Know ( your so young how can all this be hapening to you) (well you look fine) sometimes I can relate more to an 80 yr old person and I am 33. sorry I am ranting again I will snap out of it as I get better I just hate being sick.

Thank You
LaurieC

 

[Lily]

Hi Laurie,

Yes once on meds to help control the disease many people have very few problems at all. You must remember that visiting a site like this isn't really representative of all the other Lupus patients out there who are doing exceptionally well and have no need to visit. They are out there living their lives.

Many of us here have been helped tremendously by meds our quality of life has improved greatly on what it was. With the right meds, flares become less frequent and less severe. Many people still suffer the fatigue and some muscle aches and pains but apart from that are very stable - no surprises as long as they adhere to sensible precautions as far as UV light goes, pacing yourself and trying to manage stress, getting enough rest etc.

love
Lily

 

[Sage Hen]

Hi Laurie,

Nice to meet you. I am very sorry to hear that your have pleurisy. I have never suffered with it, but have heard it is very painful.

The other ladies that have suffered with pleurisy, will have better input for you than I, but I want to wish you well.

I do hope you get your diagnosis, so you can feel more focused. It is hard to fight when we don't know what the enemy is..

Feel Better Soon!
Sandy

 

[LaurieC]

Well sorry I was away for a while. They put me on Prednisone for my lungs but 2 days into treatment I woke up in the middle of the night with my face all swollen and a horrible pain in my mouth . I went to the dentist right away he sent me straight into surgery they had to pull 2 teeth. He said if I had waited till the weekend came I would have been in the hospital by Monday. He said that because of the Prednisone the infection in my tooth went wild . I thought the Pred boosts up your wbc to help with infections am I wrong . I guess I have alot more to learn about all this . They did up my dossage of the Pred now though after the surgery.:?

 

[Lily]

((((((((((((Laurie)))))))))))) ughhhhh on the dental problem!

Long term or high doses of Pred can lower our resistance to infection unfortunately, it's very common. But you haven't been on it long have you?

It can get very confusing and how one will react another won't.

If someone has a low white cell count due to autoimmune disease then treatment for the disease can fix that, i.e. Immunosuppressants or Pred.
Likewise if they arent on any treatment for the disease and they have a low white cell count they can have difficulty fighting off or preventing an infection.

If someone is already on Pred and they have to undergo a medical or dental procedure then often they will increase the dose because the procedure itself puts the body under stress and increases the need for Pred.

I hope your tooth problems are over now and you start feeling ok soon :hug:

love
Lily

 

[rwb200]

Hello
Sorry to hear of the problems you are having.
As has been mentioned here many people get there Lupus under control and have very little trouble.
It can be a little dificult to get a diagnoses of Lupus. Lupus can mimic many other problems and many doctors will look at all possibilities before they give a diagnosis.

With the heart and lungs there are several things that can happen that will cause problems that may seem very similar to a person who has it.
The doctors will likely want to look at all possible items if nothing else just to rule them out.
Many of the possible Heart related Problems can be checked with just a couple of tests.

 

[Rebecca123]

Lung trouble

Hi,

I'm new in the chat room but have just spent the last months dealing with breathing problems and heart inflammation. There is hope All my tests were terrible - kidney, heart and lungs. They never found out if I had pluersy or pneumonia. That said I went for my first walk today and although it's no biggie and I am exhausted, it's been a long journey getting to this point. I recognise your feelings and lame as it sounds - Stay strong and keep foucused on recovery. The body seems to have a way of finding itself. Wish you well.

 

[LaurieC]

Thank You Everyone ,

I feel much better. Still on Pred and feeling great I have even been cleaning my house. (witch has not hapened for months) The healing prosess with my teeth has been slower than I would like But none the less I am healing . NO MORE INFECTION !!!!! YES So thank you again I love this site and all the people in it. It felt so much better going through a crisis with people who understand. Now I can only hope they keep me on the pred for a while I realy do not feel like going back to being sick just yet.


Lots of Love
LaurieC:wink2: