A lot has changed for me since I first posted. I am off of prednisone and I have lost the weight I needed to lose (thanks to Ozempic and a low carb diet). I was a patient at the UTSW transplant clinic but they have denied me because I have too many antibodies in my blood. I have now been referred to Houston Methodist and they might be able to… Read more

I thought I had posted this, but I can’t find it. The Class II of my HLA blood test is 98% which has caused UTSW in Dallas to reject my case. I have been referred to a couple of other hospitals. Still, I was curious if anyone on here has had high antibodies and if the doctors/medicine/transfusions were able to lower the number. I am thankful to… Read more

I have not been very active on the site for a little while but I decided I needed to hop back on. I have been diagnosed with CTD-ILD. CTD is a host of autoimmune disorders. I would say I am doing pretty well right now. I would happily discuss more if you are still on this forum.

So far I have been told by my transplant doctor that I won’t be considered for a transplant unless I lose 30+ pounds (these are the same 30 pounds I have gained since taking prednisone and CellCept). Next week I plan to go on a very restrictive diet to try and get some of the weight off (I haven’t been eating badly up until now so I guess I… Read more

My husband tested positive yesterday so we are trying to isolate ourselves from each other as best we can. I am getting the monoclonal infusion today as a precautionary measure. So, I can’t answer your question, but if I get COVID I’ll send an update.

 

 

I can’t get a booster yet because I got the J&J vacine. Although there is no problem with me qualifying I will still have to wait.

Thanks for the info — I also have polymyositis and antisynthetase that have contributed to my lung condition (I have significant scarring). Thanks for the encouragement on exercising every day — that needs to be a new goal for me. I agree that the slow taper is the best thing to do for prednisone. That last time the doc (PCP) tried to get me… Read more

Christie,

Thanks so much for the information!

Marisa

I was supposed to be on track to start taking OFEV, and then my lung transplant doctor said he just wanted me on 3000 mg 0f CellCept (I have 3 autoimmune disorders attacking my lungs). I asked the doctor if my lungs were too damaged at this point for OFEV to work, but I haven’t received a straight answer (or I don’t view it as a straight… Read more

I appreciate your reply and sharing your experience. It has been so helpful to hear what others are going through, especially if there are similarities to my situation. I am ready to have my next pulmonologist appointment so I can at least have PFT done again. This is where there has been such a significant decline for me so it would be great… Read more

My experience with CellCept has been little to no side effects. I am on 3000 mg a day. I know everyone is different. It has brought my inflammation down and now I am beginning a slow prednisone taper.

My experience with pulmonary rehab has been great. I have been going approximately 3 times a week for 6 weeks. I have 6 more weeks on the program but can continue to go once I am officially done (they just won’t’ monitor me one on one). My treadmill experience is I am at 1.5 mph for 14 minutes on 3L of oxygen. 1.5 is mighty slow but at least I… Read more

I had an appointment with my rheumatologist yesterday. I guess the 3000 mg of CellCept is doing its thing since my blood work shows the inflammation is down. She had a conversation with the transplant doctor (one of my pulmonologists) and he firmly believes that I need a lung transplant but I have to lose 35 lbs to even be considered. I did… Read more

Hi Fay —

I am blessed to work at a university that has allowed me to work at home as much I need to. I try to go in 3 mornings a week but I can only do so because of my oxygen. I am 62, so mentally, I was not ready to retire and so glad I have not had to — yet. I also teach online doctoral courses, so of course, I can do that from home!

I… Read more

Your diagnosis does sound very similar to mine. I agree it is the “new normal” and at times hard to adjust to it. I do go to pulmonary rehab right now, which has been helpful to make me feel a little better.  But when I walk a speedy 1.5 mph and use 3L of oxygen, it can also get depressing! I go into the office for at least 15 hours a week… Read more

I would be interested in knowing about the laser treatment also!

Just to clarify what my diagnoses (listed in the subject area) are Connective Tissue Disease- Interstitial Lung Disease(CTD-ILD) basically brought on by these 3 autoimmune disorders Sjogren’s Syndrome, polymyositis, and Antisynthetase syndrome. I am currently under the care of a rheumatologist, pulmonologist, lung transplant pulmonologist,… Read more

Greetings — I am new to the forum and new to all things wrong with me. Just curious if anyone else out there in forum land has the same or similar diagnosis as me. I am on oxygen 24/7, and I use a POC and at-home concentrator. Although I hate hauling the oxygen around with me, I would not be alive without it.  I am currently on 20 mg… Read more

Greetings — I am new to the forum and new to all things wrong with me. Just curious if anyone else out there in forum land has the same or similar diagnosis as me. I am on oxygen 24/7, and I use a POC and at-home concentrator. Although I hate hauling the oxygen around with me, I would not be alive without it.  I am currently on 20 mg… Read more

I am currently on 20mg of prednisone. When I try to wean lower I have absolutely no energy. I am also on 2000 mg of mycophenolate (soon to be increased to 3000). I have had weight gain (which certainly doesn’t help me get evaluated for a transplant) and I have issues with sleeping. Hopefully, in the next few weeks, we will try to reduce… Read more