Marisa Beard
Forum Replies Created
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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.
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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.
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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 need to get pretty drastic). I see my transplant doctor in October so I hope to have some success of weight loss by then.
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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.
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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.
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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 start reducing my prednisone by 2.5 mg today. I’ll do that for 2 weeks and if I tolerate that education I’ll reduce it by 2.5 mg more. I am hopeful that by reducing the prednisone that my weight loss attempts will be successful. I am also trying to purposefully walk more outside — it is pretty tough due to the hot weather.
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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, ophthalmologist, neurologist, and possibly a cardiologist (still undergoing a Holter study). I am on oxygen 24/7 using a large concentrator while at home and a portable concentrator when I am out and about. Usually 2L while at rest at home but up to 4L if is am doing something. When I am out and moving I can range from 3-6L I am taking 2o mg of prednisone, 3000 mg of mycophenolate (CellCept), <span style=”font-weight: 400;”>Sucralfate (heartburn/GERD), Xiidra eyedrops (dry eyes from Sjogren’s), Refresh gel drops (dry eyes from Sjogren’s), Potassium, Magnesium, and a few other things. I am not on the lung transplant list at this time — trying to get the attack on the lungs a little more under control. I hope this is helpful. </span>
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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 my prednisone by 5 mg. I need to lose weight!
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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 to taper he did in 5 mg — way too fast for this body!
Have a great day!
Marisa
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Christie,
Thanks so much for the information!
Marisa
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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 to see it level off a little (give me more hope!). I see that you are taking hydroxychloroquine for Sjorgren’s syndrome. Does this help the eye dryness? I have been using the eyedrops Xiidra but my insurance won’t pay for them (as of yet). I tried Ristasin but the drops hurt my eyes so I discontinued. My prednisone taper is going pretty well (granted, I only lowered it by 2.5 mg) — I am thankful for that. I am considering purchasing a treadmill so I can increase my walking.
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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.
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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 am moving. The rest of the machines aren’t too difficult for me most days! It will be interesting to see what happens today since the reduction of prednisone. I feel like I have no energy today but I did go into my office this morning so we’ll see how I survive!
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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 am learning not to sweat the small stuff. I have had such awesome support from my family but also my church.
I have a husband, 3 adult children, and 9 grandchildren, and I hope to be around for a while longer to make some memories!
It will be intr3esting to see what the PFT and Xrays show in Sept. At some point, they will do another CT scan. I am not sure when that will happen, but it will certainly help show whether I am in decline or holding my own.
Marisa
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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 (I always aim for more, but it doesn’t usually happen) — I need to be around people! Since I am new to all of this (officially diagnosed in May of this year), what do you mean when you say antibodies? I assume this is something that is found out from all the blood work that is done. I am slowly learning what everything means, but medical terms are not my fortet. Marisa
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I would be interested in knowing about the laser treatment also!