Treatment for SLE with severe lung disease (shrunken lung syndrome) besides rituximab.

[Tadiwa89]

Hello

I am wondering if someone could point me in the right direction. I am desperate for a second option.

Here is my background.

I am 30 years old.I was diagnosed with SLE(lupus) in 2002.I am under care of a professor in rheumatology in birmingham. I was started on lupus treatment in 2009 ( prednisolone & aziathoprine).The lupus was controlled for 3 yrs.In 2010 to 2012. I experienced persistent dry cough & lost weight.

At first the doctors sat on me for months, they kept saying will keep monitoring you but the persistent dry cough got worse. I had CT scans of chest, X-rays of chest & breathing test.

It was confirmed I had pulmonary fibrosis hence dry cough. I was referred to respiratory physician.He does not do much for my care. He is helpless to be fair. My rheumatologist commenced me on 6 cycles of chemo (cylophosomide) in 2012 with methylpred. After chemo Dry cough disappeared, them was commenced on ciclosporin.

In November 2013 I had sudden onset of shortness of breath @ rest& the dry cough had come back. In January this year 2014 I was given 2 course of rituximab 2 weeks apart & methyl pred.

After about 3 months. I was better cough had disappeared was still struggling a bit with shortness of breath. I was referred to respiratory physcian department for monitoring of oxygen levels.

They noted my oxygen levels fall a lot during activities. Now on home oxygen when required.

In September 2014 this year I experienced increase shortness of breath & dry cough again. My rheumatologist suggested I was due for another course rituximab & methyl pred.

I had first course of rituximab on the 9th of October 2014, went well. The second infusion did not go well. I had anaphylaxis. I had rash all over body, felt throat closing u & itching all over.I felt like I was going to die.

My rheumatologist decided to abandon the treatment. My rheumatologist, she said she does not know what treatment since I reacted to rituximab.

I guess the big question is what treatment can I have???

I need someone who have been in my situation, professionals who no more about treatment for severe lupus with shrunken lung syndromes. Basically I need a second option about my treatment.

I am only 30, am desperate to live, I need to live pain free. I am only asking for a quality of life..

Thank you for reading my story!

[Suzy6]

Oh Tadiwa, Welcome, sorry can't help at all. I have Emphysema. Maybe someone on here will be able to. Keep searching and I hope you can find some answers. Have you rung BLF? They may be able to helpxx

[Tadiwa89 in reply to Suzy6]

I will try that Suzy6

ThanksXx

[Hidden]

Sorry tadiwa, I don't know much about ur condition and certainly not enough to offer any advice, but would like to say welcome and emotionally I can support you as will everyone else on here will do. Take care x Sonia x

[Tadiwa89 in reply to Hidden]

Thank you soniaXx

[Hidden]

Good Morning, I care for my husband who suffers with severe COPD so unfortunately not able to give you any sensible advise but I would suggest you telephone the BLF helpline and ask the nurses their opinion. I am sure they will be able to point you in the right direction. Take good care, stay positive, with lots of love TAD xx

[Tadiwa89 in reply to Hidden]

Thank you so much

[knitter]

I am very sorry that you find yourself in such a difficult situation. Can you be referred to a specialist lung department. I think some people on this site have been seen by the Royal Brompton Hospital. The BLF helpline will be able to tell you more. Thinking of you.

[Tadiwa89 in reply to knitter]

Hello knitter

Am under care of consultant respiratory physcian, but like what I said he is not doing much.

I will take your advise and will speak to royal brompton for advise

Thanks for your helpXx

[jenss]

Oh Tadiwa I am so sorry you have this terrible condition my heart goes out to you. I cannot offer you any advise other than contact the nurses at the British Lung Foundation helpline they will be able to help you find another specialist. Did the doctor who was treating you have any suggestions as to who to refer you to? Otherwise maybe the lupus foundation? There is a Lupus UK forum on Healthunlocked, go to browse communities to find it. Please try to stay positive and there is always someone hear to talk. Best of luck to you and lots of lovexxx

[Tadiwa89 in reply to jenss]

The doctor who was treating me has no suggestions at the moment, on what other professionals could see me etc

I will take your advise tho

Will visit lupus uk forum, thank you for that

Xxx

[jenss in reply to Tadiwa89]

I wish you all the very best. I agree with you also speak to Royal Brompton as you said above and ring the British Lung Foundation Nurses - they ought to be able to point you in the right directionxxx