I'm not a good candidate for many of the drugs that are now used to treat sarcoidosis because of the recent breast cancer, and there are no FDA-approved drugs for Sarcoid. The Prednisone makes me miserable at high doses, and they can't give me any more of the inhaled steroids. But, the symptoms are not getting better and some are slowly getting worse.
So, today I met with my rheumetologist again. He spoke to my pulmonologist last week, again, and together they had already decided that my best next option is Methotrexate, a low-dose chemo drug with a chaser of prescription-strength folic acid to help counter some of the side effects.
The problem is that I talk at length with my doctor, and I think I understand what the options are and what the side effects are and what the benefit will be; then, I go home and look it up. After reading entries from the NIH and Medline and Cancer treatment sites, I'm now scared and am wondering if I just shouldn't resolve myself to living with the symptoms and disease I have rather than taking something that may make me even more tired, more sick and more miserable! After reading through these sites and all of the warnings, I'm starting to think that stabbing chest pain and pressure, shortness of breath, wheezing and a chronic hoarse voice may not be so bad after all!
This is like the drug ads on TV. Everything sounds great until they start reading the disclaimers and I begin to wonder why anyone would take any drug at all! The cures always sound worse than the disease they are supposed to treat.
I took the prescriptions to the pharmacy, and I'll likely pick them up, but taking that first dose may take some time.
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3 comments:
Remember the movie where William Hurt is a doctor but becomes a patient in a hospital?? I think every doc should go through some version of the medicine he/she practices because I'm sure all of this was delivered to you very matter-of-factly. What a situation you are in! Awkward to think the remedy may be worse than the illness!! Hang in there!
I was diagnosed with stage 3C operable breast cancer in June 2007, this year in May I am also diagnosed with severe sarcoidosis, I wonder if there is a link between the cancer drugs and development of sarcoidosis?
I took prednisone 60mg per day for the first month, luckily I did not follow the urge to throw myslef off the roof and now my dosage has decreased to 12.5mg per day, but I have been told I will probably have to take this for minimum 3 years.
I do feel lucky that I responded to the drugs so well, I can now breathe again which in itself is a novelty, and I think I was so relieved that the cancer had not returned that also helped.
Hang in there, I do understand what you are going through, it may be a good idea to try to stick with the prednisone but realise that if you are depressed this is the drug doing the messing with your head, and you are not a nutcase as I thought I was, ask for some antiddepressants alongside the prednisone, and STRONG sleeping tablets
Hope this helps, you are not alone!
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