HealingWell
Search Close Search
☰

Lupus Pneumonitis w/ chronic pulmonary hemmorrhage

Support Forums
>
Lupus
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 4/25/2007 7:19 PM (GMT 0)
Hi.  I'm new to all of this.  This is my first time using the Healingwell forum.  I'm a 24 yr old female.  I was recently diagnosed with Lupus Pneumonitis and Pulmonary Hemmorrhage.  Diagnosis is based on expert opinions of several doctors at my pulomonary clinic and my rheumatologist.  I passed up the option of an open lung biopsy after recently having a bronchoscopy that ended with a colapsed lung.  My doctors informed me that treatment would be the same either way so I figured at this point in my condition maybe passing that up may be the best idea.  I have read several books on Lupus but have not found a whole lot on either diagnosed condition.  The literature seems to touch base, but not go into alot of details.  I guess I'm here to see what anyone may know about these conditions.  If you have any info you'd like to share I'd really appreciate it.  Thanks.
Posted 4/25/2007 9:59 PM (GMT 0)
Hi averylynn and welcome. I'm sorry to hear about your recent diagnosis and the scare you had with the collapsed lung - I don't blame you for not wanting to do the biopsy. I don't have any lung problems myself, but there are others here who have lung problems and hopefully they will see your post and maybe be able to answer some of your questions. Feel free to ask any questions you have or vent if you are having a bad day - we are a very supportive group. I'm glad you joined and I look forward to hearing more from you. Take care
Posted 4/25/2007 10:23 PM (GMT 0)
Welcome Averlynn. Everyone here is very supportive. Hope you feel better soon!

Lung biopsy doesn't sound fun. Hope you don't have to have one.

Kitty38
Posted 4/25/2007 10:51 PM (GMT 0)
Hi averylynn, welcome to the group! I have lung problems but I was DX's with COPD and am on oxygen. I know there is at least one person who has the same DX as you that I'm sure will be very helpful when she sees your post. I would love to find out more about this myself. I am on oxygen all the time and if there is something that can be done to help me out that would be a God send. But I was diagnosed with asthma than told it wasn't asthma it was copd. It wasn't until some years later I was dx'd with lupus. So now I'm wondering if there is a connection there. I hope you do well with the treatments. Not being able to breath is a horrible thing.
Well I know I was no help but mostly I just wanted to say hello and welcome aboard. Keep posting. It's amazing how much I've learned in a few short months.
God Bless
carol
Posted 4/26/2007 5:47 AM (GMT 0)
Thank You all for making me feel so welcome. Honestly I've been pretty scared and very confused about what to think about the current diagnosis. I went through several long hospitalizations on constant oxygen and nebulizer treatments to be sent home without the oxygen and told I had things like bacterial and viral infections in my lungs, then they tried to diagnose me with diabetes (not diabetes, just high blood-sugar from Pred.), pneumonia, bird fancier's disease(had to get rid of our birds-once again- not accurate). So we finally did the bronchoscopy and that slim chance of an issue turned into a collapsed lung. I've been out of the hospital now for about 3 weeks and I've only had 1 flare where I considered going back, but instead I saw my Pulmonologist and she bumped the Pred up again. When I got out of the hospital I started trying to research like a mad woman, unfortunately it doesn't seem there is a whole lot to find specific to my illnesses. I'm going to keep digging because it's got to be out there. I really appreciate the support and wish you all the best. If you have questions for me feel free to ask, I'm fairly well read for the short time I've been reading. Goodnight.
Posted 4/26/2007 10:06 PM (GMT 0)
AveryLynn,

Welcome! I am new, too, and everyone here is so nice and helpful.

I have chronic pulmonary vasculitis, which at times they refer to as pulmonary hemmorrhage. Last year I was hospitalized four times in six months, and finally had a lung biopsy (after several bronchoscopies). It wasn't fun, but it did allow the doctors to make a definitive diagnosis.

My doctors were all quite concerned that I have a positive ANA and told me last year that there was a high likelihood that this would turn into lupus. Since then, I have developed more and more symptoms consistent with lupus and started plaquenil a few months ago.

If you have any questions, please let me know - in this forum, or via email. I know you must be overwhelmed with your diagnosis. Not knowing if and when your lungs are going to fight you again can be so stressful.

Hang in there, and fire away with any questions.
Posted 4/26/2007 11:20 PM (GMT 0)
AveryLynn and Meph, Welcome to both of you to the forum. I think you'll find that it's a supportive group of people. I have been fortunate in that I've never had problems with my lungs. AveryLynn, you're on an awful lot of prednisone. I was a 60mg for a couple of months and thought it was going to kill me. Hope to see more of you here.
Posted 4/27/2007 1:23 AM (GMT 0)
Hi AveryLynn:

Welcome to the forum and I'm sorry that you're dealing with this dx. It's so hard when your sick and you don't have all the answers. Or worse have a doctor that doesn't care to much and leads you down the wrong path.

I have chronic pleurisy with my lupus and I also have had lupus pneumonitis many times. I've stayed on high doses of steriods and they also started me on cytoxan treatments. I initially took the cytoxan 9 months orally, and then 3 months with IV doses. I have to say that it did help me, but cytoxan is a very potent chemo drug and can have very serious side effects.

Another member here Mom46 has issued with her lungs and she did cytoxan infusions for 6 months and it did wonders for her and she did well on it. Hopefully, she'll be along to tell you more about it. My results with my cytoxan weren't the greatest.

I hope some of our other members come along and offer you some information. I hope that you can get the correct treatment plan real soon. Wishing you the best, and we're always here to help in anyway we can. Again, welcome and I'm looking forward to getting to know you better.

Take Care,
Barbara
Posted 4/27/2007 4:48 AM (GMT 0)
This is the most pred I've been on outside the hospital. I'm struggling most because my pulm. doesn't think that my lungs appear to be improving, she just bumped me from 20mgs which I've been on since my bronch. to the 60 because of the SOB and haziness they seem to be finding in my x-rays. I don't sleep well on this dosage, but I can breathe. I'm really tired, but super anxious on this much pred. I get to drop down in a few more days and try the 40 mgs again. But at that time I'm looking at another boost of Imuran, which happens to wreak havoc on my stomach.

I have a book called The Lupus Book Third Ed. I have found more info there about lung involved lupus issues than anywhere else. I have read through a couple other books as well. Unfortunately the info I have found it not exactly what I would call the best news. I still think I choose not to really believe it yet. According to the sources, I am falling under very rare circumstances.

According to my sources Lupus Pneumonitis is only found in 1-9% of all lupus patients. Apparently with high-dose steroids and an immunosuppresant or chemo. drug it is reversible. Unfortunately it also says about 50% of these patients die within months, usually due to a delay in dxs.

As far as the Pulmonary Hemorrhage, less than 1% of lupus patients sustain this condition. This is a very rare, dangerous manifestation of lupus. Although up to 10% of deaths from all forms of active lupus are associated with such an event. This usually hits early in the course of the disease. It says pulm hemorrhage is usually fatal, but patients may be saved by aggressive quick treatments that involve high-dose steroids and a specific chemo. drug called cyclophosphamide.

I'm wondering since the latter of the two seems to be more serious if I should take my sources to the pulm. and rheumy and point out that it specifies that I should be on the chemo. drug instead of the immunosuppresant.

What do you guys think? I just feel so naive and clueless about all of this. I feel like I'm not digging deep enough for info, but I'm not finding more. Is it just me or is this really scary information?
Posted 4/27/2007 12:01 PM (GMT 0)
((((((((averylynn,)))))))), I'm so sorry this is happening to you. It really bites doesn't it? 60 mil. of steroids is enough to make ya paranoid even without everything you've read. I think if you have some questions you should take it to your doctor. If he/she won't listen you might want to get another doctor. You deserve answers and the best quality of care you can get. On the other hand try not to read too much into anything. I can start serching the internet for answers and scare the crap out of myself.
But yes diffinently take your concerns to your doctor go over options and find the right course of treatment for yourself.

Praying you will get feeling better soon
hugs
carol
Posted 4/27/2007 12:59 PM (GMT 0)
averylynn, all of this is very scary - you are right about that. I agree with Carol that you should talk to your doctors about the information you have found and ask them some questions about your meds and all the options of meds. My heart goes out to you - not only is this condition scary, but because it is rare, there's not a lot of information out there about it. Hang in there and we'll be here for you. Take care
Posted 4/27/2007 5:29 PM (GMT 0)
Hi Averylynn,

   Welcome to the forum. I'm sorry your going through this...((Hugs)). I came across this site when I was researching Lupus Pneumonitis and Cytoxan Infusions over 2 1/2 years ago. I agree with the others about talking to your doctor about your fears of this dx and the treatment options.

   When I was dx with lupus pneumonitis I was very scared too from all that I read about it and the side effects of Cytoxan. I was very hesitate to get the treatment but, my rheumy insisted that it was what I needed to survive or prevent a lung transplant.

   With my very first cytoxan treatment I was admitted to the hospital over night for evaluation. Apparently they base the dose on your height and weight. I had a bad reaction from that treatment which  caused severe chest pain and my heartrate to drop in the low 30's. The dose was too high for me even though it was right for my height and weight at that time. Of course, they checked me from top to bottom to make sure I was ok otherwise. I was very weak from that treatment and reaction and slept alot over the next several days until my HR got back up. That scare prevented me from going forward with the treatments at that time but, my lung functions were dropping rapidly so I decided to try it again.

   Almost 6 months later I got my second treatment. I was admitted to the hospital again because of the reaction from before but, was given a lower dose and it was much better. After that, I got them on an outpatient basis in the Oncology dept once a month for the next 5 months. The main side effects that I had were some nausea, flu-like symptoms and weakness for a about 5 days after each treatment. Also, some hair thinning during the course of treatments.

   In my case, I think the treatments were well worth it. My lungs were completely clear after the last treatment and I could breathe so much better.

   I know this is very scarey for you...It was for me as well. Read and research all you can about this, talk to your doctor and weigh all the pro's and con's. I will help you in anyway I can as well as the others. If I can answer any questions for you I will be more than happy too.

   Good luck with your treatment and we will be here to help you through this rough time. Please take care and keep us updated. You will be in my thoughts and prayers.

                                                               Babs

Posted 4/28/2007 5:05 AM (GMT 0)
Hi Avery,

I'm not posting much at the moment, just reading as I'm not feeling very well. However, when I read your post I felt I must add my 2 cents.

Any time something is that rare my advice is to always try to be seen by doctors at a university/teaching hospital or by a dr. who specializes in treating that specific manifestation of lupus. IMHO, it is worth the time, trouble and expense to get the specialist's opinion.

It is scary stuff. I'm really glad you are educating yourself. That is worth a million dollars! Good luck and keep us posted.

xoxo emmie
Posted 4/29/2007 3:43 PM (GMT 0)
I will definitely be talking to my rheumy tomorrow about how I've been feeling as well as bringing up my concerns about treatment. I am also thinking about going to the health sciences university to see what they may have to offer. I was diagnosed on a temp insurance and have used well over it's worth. There is a medical insurance pool here in Oregon I should be able to get on, but I fall into a pre-existing condition clause for the next several months.
Thanks for sharing your story Babs, that is something to ask about for sure.
Emmie, thanks for the suggestion, I never really thought about going to the university hospital.
I think for the meantime I am done searching for information that could lead me astray.
Once again, I appreciate the information an I hope you are all feeling well.
✚ New Topic ✚ Reply