Even though it may be cloudy outside - I can see the Sun, I can see clearly - Things are going to get better!!
Today is the day I have been waiting for seems like forever to get here. The almighty appointment with the Famous Dr. Buckner - You may not know her yet, but the patients of RP do. People have traveled from as far away as India to have an appointment with her, I am lucky enough to have her in Seattle at Virginia Mason. She sees patients once a week - Tuesday Mornings the rest of her time is to research Relapsing Polychondritis. She is the 7th Doctor in 1 year that I have had to see, I am hoping the last I will have to see - in this LONG journey. I can not say enough good things about this Doctor. What impressed me most is she actually had read my medical records prior to my visit, she knew all about me even before I said one word - how often does that happen - NEVER! Unprepared Doctors are the worst! She listened to my concerns, she examined and she explained the plan - there was no rushing out the door to her next patient, she was mine for the hour I was there. She thanked me for having all of my records to her for her to review - again how many Doctors thank you? She understood what I have been going through and told me to look around her waiting room when I left - you won't be able to tell which one has RP, people can live a normal life without the fear and doom that you read about this disease. Don't believe the literature you read, patients diagnosed with RP have a 5 year life span after diagnosis - She said alot of her patients were diagnosed 20 years ago and still live a active life. - This is exactly what I needed to hear, at that moment the clouds broke loose and I could see the sun shining even with the gray Seattle clouds.. I was explained the treatment options and why she wanted to start me on MTX - It is the middle of the road drug , safe and if we have to move up or down in the drugs, there is some wiggle room. So that is where I begin -
The Treatment plan:
MTX Methotrexate - It is a chemotherapy drug usually used for breast cancer - my dose is much lower then that - it is also used for autoimmune diseases which is why I will be taking it. I will take this with Folic Acid which is suppose to counter balance some of the side effects. Dose will begin at 3 pills 1 time a week for the first 2 weeks, 3rd week will move up to 4 pills. Side effects are nausea, fatigue, hair loss, abdominal pain. I am hoping for none of the above...
Because MTX can cause issues with the liver I will begin blood tests every 6 weeks to watch my levels - They are very strict about this, Dr. Buckner said they will not refill the MTX unless this has been done - so I will be a good patient and follow the Dr's orders..
Every 6 months I will have RFP and CT of the Trachea to track any changes - prayers for this one...
One of the things I was not so happy with today, the additional diagnosis of Lupus tacked on - I thought I had escaped that disease, but Dr. Buckner feels that not only RP but Lupus is also involved. Dr. Buckner explained it in medical termas - but basically RP can bring lots of friends to the party - this is my explanation not hers.. My labwork indicates both diseases even though I do not have all your typical Lupus indicators like the butterfly skin rash, the symptoms my body is having are Lupus indicators.. For example even though I love the Sunshine - my body no longer can tolerate it - the last 2 days in the sun - killing the old bod right now.. This is a Lupus indicator - she tried to explain it - but at that time I was not comprehending anything, what it sounded like is - the sun breaks down something in my body and this causes inflamation in the joints ?? something like that?? She told me hat, sunscreen and look into UV sunscreen clothing - OMG!! Well, we stopped at Nordy's for a cute sun hat, but the UV clothes - NOT YET!! I will put the sunscreen on faithfully, there goes my tan :( and I will monitor the sunshine - so much for afternoon gardening. Hawaii, Arizona, Guess it is a good thing I live in the NW after all!! I will enjoy my Sunshine on cloudy days...
My diet is still no red meat and as little dairy as possible - this helps the throat issues some. I eat chicken fish and veggies and fruit - limited bread and sticking to it...
Thats it for now - I will post after my first dose of MTX so I can track symptoms.
Thanks for reading.
God Bless us all.
Nancy
