-
CTD-ILD; Sjorgren’s Syndrome, Polymyostosis; Antisynthetase syndrome
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 of prednisone and 30oo mg of CellCept (mycophenolate) – I just increased the CellCept a day ago, so I am trying to get used to the increase. I have gained 25 lbs since I started taking prednisone (the CellCept could also add to that weight gain). I am careful of what I eat, but the weight keeps going up — very frustrated. My last PFT wasn’t very good — I had one in Feb and another one in June. All of my numbers had gone down.
As one of my pulmonologists put it, the autoimmune disorders are attacking your lungs. We need to try and get that under control before considering a lung transplant.I learn something new every week (sometimes every day). I need to wear a Holter Monitor for 7 days, which I did wear for 4 days until it quit working. I get to start over this week. As a point for more information, I am 62 years old, and I still work full-time. I am blessed to work for a university that allows me to work from home when I need to (which is 10-30 hours a week, depending on my energy level.)
I would love to hear from anyone who has the same or similar diagnosis as me.
-
4 Replies
-
Hi @marisa, would you mind sharing what your diagnoses are? You provided a lot of great info about yourself that people will likely relate to but if you are searching for folks with similar diagnoses, it will be helpful to know what your doctors are thinking about your condition at this point. 🙂
You mentioned autoimmune disorders–could you share which ones? There are people in the forums with sarcoidosis and scleroderma, and likely others. Have you been diagnosed with pulmonary fibrosis specifically, or are you still working toward an official diagnosis for your lung disease? Just trying to narrow down specifics so you can connect with similar folks. Thanks for reaching out!
-
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.
-
Welcome Marissa-
its very hard to get our heads around all of these –
I have sjogrens, ILD and Antisynthitase syndrome also-
I was on the prednisone and Cellcept for three years- I gained 65lbs – it was awful-
finally my Dr at The Mayo Clinic worked together with my rheumatologist and pulmonologist to create an action plan- I now have had almost two years of having Rituxinab infusions and they have worked very well to the point I am off the Cellcept and the prednisone- the infusions you do one and then two weeks later another one – then you wait 6 months and do the same again- one then wait two weeks.
This has been life changing – my body has finally leveled off and not attacking – of course damage cannot be repaired but at least I am not declining as fast as the first two years.
I would highly suggest to look into the Rituxinab. It’s very expensive but if your insurance covers it give it a try.
I am in year five of my diagnosis.
Take care with the weight gain – I have since lost the 65lbs – because my pulmonologist at Mayo explained I wouldn’t qualify for a lung transplant being so overweight.
I am 47 years old and positive that medical miracles can happen.
sending hugs
Elaine
-
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 help with the antibodies. It seems that the Rituxinab is one of the drugs that might help with the antibodies in my blood. I’ll ask — thanks for the info. I am doing quite well — I still use oxygen upon exertion outside the house. When I am home I don’t need oxygen except at night.
Log in to reply.