Upping my Methotrexate to .8 has had a big impact on me. I wouldn’t think that going from .6 ml to .8 ml would be that much of a difference but this past two weeks has been really hard. I am hoping that it is just a temporary thing and my body adjusting to it because I know two other people who are on this dosage, who are smaller than me physically, and seem to handle it much better. It appears that when you take it and how much I sleep has some sort of effect on how much it hammers me. My friend takes it in the morning and has had a lot of success in not feeling as bad. When I tried this it did seem to help with some of the symptoms but I noticed that the nausea was much worse. I am still trying to work into some sort of a grove with this. Another aspect of this is when and how much folic acid to take, which I haven’t gotten very much clarity from my doctor on. What I am doing is taking 800 micrograms every day except the day of injection. I will need to do some more research on this to make sure that this is the best course of action.
New Pulmonologist
My roomatologist doctor insisted that I find another Pulmonologist because he wanted to make sure that everything was going okay with my lungs. I did some research and finally found one that I was really impressed with. He is very knowledgeable and most importantly is willing to thoughtfully listen to and answer all of my questions. I went over all of my history with him and was able to use him as a second opinion, which I always like to do. He confirmed everything my roomatologist is doing which helps build confidence that I am doing the right thing.
I did another lung function test and it came out 89% normal for people my age and size, which is good. (10% swelling of lymph node probably makes up for the difference) We went over all my old X-Rays and my CAT scan and he showed me all the different parts of my liver, spleen, etc and how they appear to be clear of any effects of the sarcoidosis. He mentioned that many people don’t take any medicine for sarcoid as long as it isn’t scaring any tissue or causing side effects that can’t be dealt with, such and severe pain in my ankles. He said that just having swollen lymph nodes in one’s chest is fine as long as it doesn’t show up in the lungs etc. Right now this is what is happening to me, although I am on medicine. The goal is to get to this point with out the medicine.
He was a bit concerned that I was on three medicines with out an absolute confirmation that I have sarcoid by biopsy. I talked with him at length about this as my last Pulmonologist couldn’t give me a good enough reason (in my opinion) to get a biopsy. He made a few compelling points that really resonated with me. The key being that although it very much appeared to be Sarcoidosis, making that assumption with out proof could cause complications with diagnosis in the future. He pulled up my CAT scan and pointed out that the doctor who had interpreted the finding put “consistent with sarcoidosis”. The request for the CAT scan had mentioned sarcoidosis and so the doctor was “looking” for sarcoidosis instead of keeping an open mind. My Pulmonologist pointed out that the CAT scan was also consistent with lymphoma, but that this was not in the report. Now my Pulmonologist didn’t think that it was lymphoma but with out having a positive diagnosis mistakes like this could be made. Also in the future is there were problems in the liver or other areas it might be blamed on sarcoidosis, and what if I didn’t have sarcoidosis but some other thing that appeared like it. He also said that sarcoidosis is a life long thing, or in other word I could have flair ups through out my life, so it was worth investing in the additional tests to be sure of our findings.
Falling Among Cutthroats
After all of this I found myself reluctantly convinced that perhaps I should get a biopsy so I did yesterday. Thy put a nice little scar at the base of my throat so now I can joke about falling among cutthroats in some dark ally in a desperate fight for my life. Ha Ha. They were able to confirm that it is indeed sarcoidosis. Today I am recovering from the surgery. (Isn’t Lortab great?) Ha Ha! Perhaps it will help with the Methotrexate I will need to take tomorrow. =) Ha Ha
Today is the day I step down again on my Prednisone to 15 mg per day! I am very excited about this. The faster I can get off of Prednisone the better! All in all I am still making progress. I am holding my weight, dropping the Prednisone, keeping the symptoms at a minimum and moving forward. I do have to admit though, there are some really… really hard days, but all in all I am making strong progress!
Receiving Help
I really fell blessed and watched over, and in those times when it gets really hard and I find myself turning to a loving God in prayer I do, in deed, find strength. Strength in a way that no medicine or doctor can’t provide. How grateful I am for that! It is what has really helped me carry through the hard times with hope.
No comments:
Post a Comment