Had My Quarterly Appointment with New Doctor
Posted 21 February 2009 - 02:40 PM
My PFT was better than the one done in June and that was good news. However, the CT scan of my lungs showed damage to the bottom of my lungs that wasn't there the last time I had the CT. My lung doctor wants to see me again in May and wants to stay on top of it. But both she and the rheumatologist think that the cellcept is working.
I still struggle with the terrible muscle pain in my legs, arms, hips and shoulders and until my blood work comes back he will then decide if he's going to put me on methotrexate. I told him the fatigue is still a constant battle too.
He said that I am in the 2nd year and that the first 3-5 years are usually the worst. He wants to see me every 3 months to stay on top of things. He seems to be more concerned with the sjogren's and the marker that they're watching for the lymphoma that he said I will more than likely have at some point in time.
I feel really good in knowing that if anything comes up and I call him that he'll actually remember me and know who he's talking to. The last doctor I had I swear when she came into the room each and every appointment she had to really look at my records to remember who I was and what was going on. I don't think I'll have that with this doctor. I also think that having a doctor you can relate to and feel that you are being heard is half the battle especially when it took me a year to find out that I had this disease.
All in all it's good and bad but it could have been so much worse.
Posted 21 February 2009 - 03:56 PM
Sorry about the new damage to the lungs~ Was it much? When will they repeat your CT? And will they do PFT's in May? We'll all keep our fingers crossed for you.
Have you looked at our page on Skeletal Involvement? It includes muscle involvement and there is a section on Myositis (muscle inflammation) that you might want to read, as well.
We've seem to have had a lot of postings on fatigue lately and I'm sure many members will chime in on what works for them on that score.
All good wishes and warm hugs,
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Posted 22 February 2009 - 04:01 AM
You are definitely in good hands!! It is great when you have a doctor you can relate to and someone who will listen. They definitely are a keeper and right on top of everything!
I suffer with fatigue as well and I was diagnosed about 16 years ago. It comes and goes but the only thing I can do is try to fit in a nap. There are days I can't make it past noon before my eyes are crossing but there are other days I am fine. I can't seem to figure it out. Hopefully you can!
Please continue to keep us updated!
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Posted 22 February 2009 - 08:37 AM
I'm glad your PFT showed improvement.
Hopefully, your doctor can find a way of relief for you, to help with your pain.
We'll be watching for your post in regard to your lab reports!
Posted 22 February 2009 - 08:52 AM
Congratulations on finding a good doctor! That is so important! Good job in refusing to being a number and getting rid of the old doctor. Also, great news on the pft's!
It sounds like you've got a good team of doctors now working for YOU. The early findings from the CT is important because now you know its there. I had the same finding and the Cellcept stopped in its tracks. I was on methotrexate (MTX) at the time and my pulmonologist took me off of it because MTX has been knows to cause medication induced pulmonary fibrosis. You might check out a couple of the articles on our methotrexate page. Lung problems is listed as one of the side effects ACR patient information page about MTX. Please be sure to ask your doctor about MTX and lung problems on your next visit.
Glad to hear you're doing well on the Cellcept!
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Posted 22 February 2009 - 12:43 PM
It truly is a good feeling when you find doctors who know what they are doing and have your best interest at heart. I'm glad that has happened for you and hope that he and your pulmonologist will be on top of things with your lung involvement.
Posted 23 February 2009 - 04:00 PM
I am glad you had a positive doctors appointment. I am sure you are relieved as well. Just one quick question: Why do they think you will develop lymphoma -- or did I just misunderstand your post? Is it because of the cytoxan?
Posted 24 February 2009 - 07:41 AM
At last, you've found a doctor who truly cares for his patients and treats them with compassion and consideration. The whole team of doctors sound like they are coordinated and working together to give you the best treatment possible. I am especially glad to hear your PFT results were better than before and the Cellcept seems to be working! That's fantastic news!
I've been battling fatigue these days also and I'm not sure why. It could be for various reasons, so I just take a lot of breaks. Hopefully others will chime in with ideas.
I hope your condition continues to improve and please keep us posted!
Posted 24 February 2009 - 12:58 PM
The reason they are watching for the lymphoma is that I have a protein marker that the neurologist found when I started with the University. This blood test is an indicator that lymphoma will appear at some point in time so every 6 months I'm tested to see if that marker is "up". The fact that I have sjogren's and also took cytoxan has also upped the ante even more for the lymphoma appearing. It's extremely scary but there's not much I can do about it. At the time that this appeared they also had me do a PET scan. This is where it goes to parts of the body that either has cancer or may develop. Well mine lit up the lymph nodes in the left side of my neck and it also "lit" up every single muscle in my body. They said they had never seen anything like it and they really don't know what it means. They said it was just another indication that I'm a medical "wonderment". I have come to hate hearing what a medical wonderment I am but it is what it is.
Posted 25 February 2009 - 04:08 AM
I just had my 3 month appointment yesterday. My lungs looked good, but my skin and raynauds look bad. My rheumatologist is starting me on methotrexate also. I am glad you have a good doctor. I am also lucky that my doctor is great. It still doesn't ease all the emotional feeling of not knowing what to expect in the future. I broke down crying in my doctor office yesterday, because she can't tell me what to expect for the future. She has seen people with the same bloodwork as mine do really bad, and other do better. She hug me and said she was sorry she could not have more answers. It is frustrating at times. I walked out of her office with a red swollen face and my son made me laugh by saying " wow look at your face"! He is 18. He was saying I am not walking down the hall with all red like that.. He was making me laugh and it felt good. I hate when I cry because it shows on my face for hours..
I hope the methotrexate works well for you and gives you some relief.
Posted 25 February 2009 - 05:39 AM
I'm really glad you found a doctor you connect with. That is so important! Sounds like he has the qualifications and confidence from others as well. Good job!
My primary care doctor just called me at home last night to go over lab results etc. He's less than pleased with my rheumatologist and found 2 others he wants me to try. It's difficult because the one I'm with now has seen me from the beginning. At first he seemed great. I loved him. He's been given awards, etc., and is supposed to be the best, but over the past few years I feel I get the cursory review, and that I'm not really being listened to. Tough to know what to do. SO, I'm happy that you found someone that you have all the right feelings about!!