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Posted 5/10/2007 1:20 AM (GMT 0)
I just wanted to come let everyone know what the doctors said yesterday and today.

Pulmonologist- my respiration is sounding a bit better and stats are appearing a little better than the recent past. She didn't order the chest x-ray before my appointment, so I took one afterwards, she said if it shows improvement she'll let me know. She told me to keep an eye on the swelling in my feet and ankles, I'm not sure what I'm supposed to do when I notice it, but I'll watch. Unfortunately most likely from the high dose prednisone and complete lack of activity I have gained over 10 lbs. I am already extremely overweight so I started weight watchers yesterday. I'm trying to be optimistic, but without being able to get any cardio activity it seems like it will be quite a struggle. My CBC shows an extremely high white blood cell count. She thinks it may be related to the spike in Prednisone over the last week and a half. She said typically in my condition they include a sulfa antibiotic as part of treatment to prevent infection, but isn't sure why I'm not on an antibiotic other than my allergy to sulfa. So now she is looking for a safe alternative to sulfa. I go to her clinic for a sleep study tomorrow night. My next appointment is a month from now.

Rheumatologist- He also noticed the large spike in my white blood cell count. Although he seems to disagree and does not beleive I need to be on an antibiotic while on Imuran. He said he believes with cytoxin there should be an antibiotic, but not with Imuran. We discussed the alternatives to Imuran because of the extreme nausea I went through when I first upped the dose. We agreed that we will try splitting my 100 mg into 50 twice daily for a week and see how I feel. If I can stomach that change we will up those two doses to 75mg each. At that point he said we'll probably give that dose another month or so to start working it's magic or we will start discussing cellcept or the alternative of cytoxin treatments. The cytoxin would be a more aggressive treatment. At this point he said they are not sure what direction to head. The concern is that with my first Prednisone treatment at the hospital, my chest x-rays cleared and the infilltrates appeared to fade. Now even on high doses of Pred and thee Imuran my chest x-rays appear foggy and show infiltrates. I will be going back to see him in a month as well.

I still can't seem to get any response to the concern for the pain in my hip and lower back which seems to be getting worse not better. Hopefully my PCP will have some new ideas next week because I don't think the manipulation is going to cut it for this pain. I get it when I stand in one place for a few minutes without having something to lean on. It also gets so extremely sore when I'm up walking around that I cannot bear the pain. Does anyone have any suggestions for this? I have no idea what to do, especially since I don't know what's causing it, I just know what makes it worse.

I hope everyone is doing okay. Wishing comfort to those of you who are not feeling well.
Posted 5/10/2007 2:43 AM (GMT 0)
Hi Averylnn:

It sounds like you've got a lot going on. I just wanted to say I hope you start to feel better soon and that your white count will come down soon. Good luck with the Imuran, I hope that you'll do better with the way you take it and that you get good results from it. Good luck with the sleep study tomorrow. Please let us know how things are.

Take care,

Barbara
Posted 5/11/2007 12:04 PM (GMT 0)
Hi averylynn, I'm glad your o2 stats or better. Mine are worse with the weather were having. Not breathing sure does make one feel rotten. Do you get the pain when you try to do dishes or cook. I started using a chair for these things. It just ached so bad to stand that long. I'm on vicodin 3 times a day that seems to help some now. I hope they can help you with this soon.
hugs
carol
Posted 5/11/2007 12:55 PM (GMT 0)
averylynn, you really do have a lot going on and a lot of different health issues to deal with. I hope that together the docs can get you on the right combinations of meds to help improve things and help you feel better. The pain sounds really bad, so I hope your pcp can do something about it. Thanks for the update. Hang in there and take care
Posted 5/11/2007 1:02 PM (GMT 0)
Hi Averylnn:

I hope you're feeling a bit better. Just wanted you to know I was thinking of you.

Take Care,
Barbara
Posted 5/15/2007 8:26 AM (GMT 0)
Update again:
Sorry it's been a few days since I wrote. I started to write you ladies back in response the other day, but I was feeling very sick and don't know that I ever got it sent out.
I am back in the hospital. Saturday morning my "cold symptoms" got much worse, they turned into my lungs bleeding, sore throat, coughing until I was sick, shortness of breath and my temp spiked from an average 97 degrees to an unbearable 102.9. I spent my morning sitting in the bathroom leaned up against the wall wrapped in a blanket. My mom called my PCP and told him what was going on. He advised that we be on our we to the ER or call the pulmonary clinic and see if they could have me directly admitted to the respiratory unit. So here I am. My new home away from home.
I feel like I'm going thru the same thing over and over again. What I can't understand is how I have had a bad chest x-ray everytime I've had one in the last 3 months, unitl the one I had after my appt on Tuesday, finally I got news that things were looking better, and now I'm back here at the hospital. The chest x-rays show cloudy with infiltrates again. Now I'm being flushed with IV antibiotics, and steroids plus they have put me back on advair which has even more steroids. My doctor is the one working the respiratory floor here at the hospital for the next couple of days. She plans on keeping me here a few more days for observation. They seem to think that my steroids have been helping me fight off some infection in my lungs that has finally taken over. I am so exhausted. I knew something wasn't right but they kept telling me that I was having side effects from the prednisone. I think when they saw how elevated my white blood cells were they should have started looking for problems then. I have to redo my sleep study now, which really sucks because it was hard enough the first time. But at least here they keep me on oxygen, when I'm at home I just have to fight through it. I told my pulm today that I don't want her to send me home without oxygen again, because I'm scared to death to fall asleep, I'm already having problems breathing awake and we know that it is worse when I sleep.
Another pulm I saw over the weekend seems to think this is more like a lupus flare than a cold gone bad.
I'm not sure what to think, but now that I am sick we cannot up my Imuran doses, and that's a concern because my rheumy wants me on my full dosage for at least another month before we decide whether to go the cytoxin route. They will not change my Imuran now until I'm all the way better.
Sorry if this doesn't make sense I'm pretty tired ands out of it, I should be off to sleep.
I'll try and keep you guys updated. My friend was nice enough to loan me her laptop tonight, so I thought I'd check in. I'll let you know what I find out as soon as I can. Hope everyone is doing okay, I don't have enough energy to go thru the forum right now.
Posted 5/15/2007 10:36 AM (GMT 0)
Averlyn I am so sorry to hear that you are in the hospital. Hopefully they will get you feeling better in no time, but in the mean time just rest as much as you can. Please keep us posted and know that I am thinking about you and sending thoughts for a speedy healing your way.

Connie

Posted 5/15/2007 4:31 PM (GMT 0)
averylyn, (((((((hugs))))))))), boy can I relate to what you're going through. I've been going through it for several years now. The vicodin and the breathing treatments seem to work the best to releive the stres and relax the lungs. if you feel lik you need another treatment tell them you don't have to wait the full amount of time. I've been on pred. and advair for a long time. the advair never seemed to bother me. I take spiriva too. they have me take that a bedtime it helps with the breathing. I do use oxygen 24/7 though. especially right now with the humidity. Try to rest as much as possible even though the iv steroids are probably making that kind of hard. I'm glad your friend let you use her laptop. that was very nice of her. Please keep us updated and if you still have the laptop send us messages about how rotten the nurses are and how much you hate the hospital! LOL.
Praying you feel better soon
hugs
carol
Posted 5/15/2007 10:36 PM (GMT 0)
Hi Averylyn:

I'm so sorry to hear you're in the hospital with this lung infection. I can't help but wonder if the imuran you're taking is making it harder for you to clear the infection. Have you discussed this with your doctor? I know that Imuran and Methotrexate can cause some serious fungal lung infections. I went through the samething you're going through now. My Infectious Disease doctors wanted a bronchoscopy done, my pulmonologist didn't think the risk was worth it. My ID doctor still thinks I've got something growing from my Methotrexate. Please ask to have a ID doc to look at you.

I hope you're out of the hospital real soon, and begin to feel a 1000 times better real soon. Please keep us posted on how you're doing. You're in my prayers.

Take care,
Barbara
Posted 5/15/2007 10:54 PM (GMT 0)
Averylynn,

I am so sorry to hear you are in the hospital. You must be exhausted. I hope that when you are discharged that they do send you home with O2. You've had too many repeat visits to the ER for this and having 02 available would at least take a little of the worry away for you.

You're in my thoughts and prayers - please keep us updated.

Laura
Posted 5/16/2007 3:51 AM (GMT 0)
Hi guys- I've got some interesting news. My docs pow-wowed today, I know, there is a first time for everything, lol. They have decided that we are hands down looking at pulmonary hemorrhage, my pulmonary function test did nothing but verify exactly what has been suspected. They have decided that we are going to work on the aggressive treatments I've been wondering about. Tonight they have started me on 1 gram of solu-medrol by IV for 3 days. We'll see how this goes, besides the obvious things like not sleeping and being a b*tch without meaning to, and completely destroying my diet, lol. I'm not really sure what to expect. I don't think they are sure either. It was kind of like, we'll just play it by ear. If this doesn't work I think we're looking at starting cytoxin treatments. Oh, and lovely... I think I'm getting the rash, everyone keeps telling me that my cheeks are really red and I look flushed, but I have no fever anymore and my bp has stayed fairly normal. Well, I am about 3/4 of the way through this IV right now and am ready to bounce off the walls in my room here. I don't know how I'm gonna do this for 3 days, especially in the evenings. I was already up til 3:30 am on 120 mg of the solu-medrol. Well, I'm sure I'll have something else to share again soon, but I'm gonna get up and pace around my room for a few. Thanks for the support you guys.
Posted 5/16/2007 11:39 AM (GMT 0)
Well at least its a start Averylynn. Hopefully this treatment will give you some relief and make you better. I am sorry you are going crazy in the hospital but it sounds like you are in the best place possible. Please keep us posted, sending healing thoughts your way.

Connie

Posted 5/16/2007 12:18 PM (GMT 0)
Hi Averylynn.  I've been sick for a fews days and just read your post.  I'm so sorry you're in the hospital, but although I complain about our medical professionals (I'm one) and I have faith they will get you well. I just started Imuran yesterday.  I also had I've solumedrol while in the hospital.  I remember one day I was awake almost 24 hours, but it kicked *** and I was better soon.  Hang in there sweetie.  Lots of love, prayers and positive energy are going your way.  ((Hugs))

Posted 5/16/2007 4:14 PM (GMT 0)
Thanks for all the good input ladies. I am so surprised I actually slept quite well after I did get to sleep. And I got the data I needed so they can justify sending me home with oxygen. I just waited until I was actually ready to relax and go to sleep and then took my vistaril and vicoden about 2 hours after some sudafed and it worked wonders helping me fall asleep. And to my complete amazement, I stayed in a great and very optomistic mood, and even woke up in a good mood.

My rheumy came in this morning and we talked a bit more about this steroid flush, he said they expect that the effects will last long enough to get the oral prednisone titrated down to a more reasonable daily dose. I really hope this works. Time to go shower, and we all know how much energy that takes. Talk to you all soon. -Avery
Posted 5/16/2007 5:05 PM (GMT 0)
Averylynn,
I am a newbie here, but I just wanted to tell you how inspiring you are to me. I know you have down times, but your posts are cheerful and optimistic despite the pain and confusion you are living in right now.

Thank you for that.

Such a horrible thing to have to suffer through being sick, but what a wonderful thing in being able to help someone else through.

Sending healing thoughts and will keep you in my prayers.

Darlene
Posted 5/16/2007 5:38 PM (GMT 0)
Averylynn, I'm sorry I came in so late on your post since you were admitted to the hospital. I'm sorry that you have gotten so sick and that your lungs are in such bad shape - that has to be scary. I'm glad all your docs communicated with each other and agreed on a treatment plan. You will continue to be in my prayers. Take care
Posted 5/16/2007 9:00 PM (GMT 0)
butterflake- Good luck with the Imuran, I hope it works for you. I'm really hoping the solu-medrol will kick a little @$$ on my behalf now, lol. monkeyme- I'm new here myself, and have just found the most tremendous response from the people in this forum. It feels really nice to be understood. I'm glad that I could give you a little something. I really am trying to stay positive.
hippi- I completly understand, you are such a busy lady, and have so much on your plate. I hope everything is going well.

There are definitie ups and downs, but this solu-medrol is definitely on the up side of it all. I've had 2120mg of it in the last 24 hours. Craziness is the only way I can describe how I feel right now. I don't even feel like a sick lupus patient, I feel like a new me on all these drugs. I have this sudden energy that I haven't felt in months, the down side is that I know if I use this energy I will pay for it dearly later. Although I do think I am going to take the opportunity to get up and walk around a little bit while I have some energy. The shakes are starting to get to me. I'll be back later I'm sure!
-Avery
Posted 5/17/2007 3:57 AM (GMT 0)
Avery,

Wow! What a trip you're having!!! A downer in that you're in the hospital, but an upper in that your doctors have communicated and you're getting the O-2 you need at home. Also, like you said this total bombardment with IV pred is really kicking butt and will hopefully be the start of getting your oral dose down to a more manageable level.

Have you been able to find much information when you google your *special* complications of lupus? You might want to be sure to do that just so you can ask your doctors the right questions etc.

Keep us posted on how you are doing. Hope you are out of there soon!

xoxo emmie
Posted 5/17/2007 10:00 AM (GMT 0)
Hi avery Hope you are continuing to improve. everytime my lungs put me in hospital they put me on salu medrol iv. drip. it kind of bothers my tummy a little bit. it's the steroids they give me in the catheder that get my wound up. but than my lungs are down to 40% capacity from COPD and too many more infections will mean a transplant. They try to make sure I have a flu and pnemonia shot at 1 yr and 3 yrs. enevitable I seem to end up in the hospital anyway. Are you eating everything insight? and telling people to bring you up big mac? I know I sure did. than at night I asked for herb tea and gram crackers! what a treat and it settled the tummy.
anyway It sounds like they are treating you good I hope you can come home soon. There is nothing like your own bed.

thoughts and prayers
carol
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