Day 86. Yazici's Response

hi, your white blood count is ok, needs to be monitored, if it goes lower I would decrease the dose. I think you should stay on the imuran as there is no guarantee we can get your lungs better even if you got back on the medication after pregnancy. I would suggest that you get pregnant on imuran, most of our lupus patients do and they do fine, there are small risks but the risk of losing lung function that can't recover, especially during pregnancy would be bad for you and the baby. I know it is not an easy decisions, I hope this helps Yusuf

Not much to say about this except thank you Dr Yazici for responding.

Day 85. Confused and lost

Went to see my Rheumie today. Our conversation didn't exactly go as planned. It never really does. I explained to him that I want to come off the meds in October to become pregnant and he looked at me like I had three heads. He suggested I stay on them for the pregnancy rather then come off. My last labs came in with a low WBC and he wants me to lower my daily dose of Imuran to 150. I left the appointment at a complete loss, went to my friends house and had a good cry. I just wish someone would tell me exactly what to do. I've spent some time praying for answers and direction today. Also sent the following email to Yazici in New York;

Hi Dr Yazici, I was wondering if you could offer some advice. I've been on the high dose of Imuran (175/day) now for about a month. My labs have all looked good except for the last white blood count which was 3.8. My Rheumie here wants me to go down to 150/day for concern of Leukopenia. Do agree with this?

I am also very anxious to come off the meds in October after my next PFT. I will have only been on them for 6 months at that point but I would like to try and get pregant sooner then later. I underdstand that the ideal Imuran treatment period is 2 years and that I may need to start on the medication again after we have a baby. My Rheumie here doesn't like the idea of me coming off the meds for pregnancy and has suggested that I stay on them. He is concerned that my lungs will become worse. My Pulmonologist doesn't seem that concerned. I reallly need some direction. I'm feeling really confused and lost. What do you think I should do? Thank you for any advice you can give me and I wouldn't be surprised if I receive a bill in the mail for your response... ;)

Sincerely,

Annie Van De Grift

Day 84. Too tired

sorry, too tired to blog today

Day 83. Giving Thanks!

Today is Sunday and it's my day to reflect on my week and give thanks. This week I'm thankful for all of you who actually read my blog and especially my friend Tami that keeps me on my toes. Thank you Tami for pushing me through my writers block. I'm thankful for my husband who never gives up and works like a horse to make me happy. I love you David. I'm thankful to the native Americans where I visited last week who shared their sacred and beautiful land with me and my children. Most of all I'm thankful for Lily who held my hand at the beach and snuggled with me. I love you more then you'll ever know Lily!

Day 82. Recovery

David and I spent last night talking about where we are in our marriage, what we need to work on and what we need from each other. It was a wonderful and much needed conversation.

Today we participated in the first annual "Whacky Wetatholon" put on by Adventures with Chad. It was loads of fun and it was great to spend some quality time with my husband. My Pulmonary doc told me that I wouldn't be able to run a marathon with my lungs low diffusion capacity but he never said anything about a Wetatholon! I did good but my chest was burning like crazy after the bike ride and the run/walk to the river's put in. David stayed by me even though I know he wanted to run more. Thank you David for being so supportive!

Day 81. Boring Blog

My girlfriend called me today and told me my blog has been boring lately. This is my bestfriend from school that admitted reading "the stupid thing about once a week" and was disappointed when "there hasn't been anything good on it" the last couple weeks. Gee, I'm sorry. I would be a liar if I told you that my blog is boring because my life has been boring. My life has been hectic and crazy. We had company from out of town then I left out of town. We had dance rehersals and recitals and PTA meetings, doctors appointments and orthodontist visits.

So Tami...here's some news for you.

My Depo shot has gone sideways and I've been on the last day of my period for over a month now. This has put a damper on the bedroom activities which puts both David and I in a rotten mood (I'm sure the additional hormones don't help). The developing bitter attitude has taken it's toll and we've been arguing a lot lately. The extra stress of has given me some ulcers. The nice thing about being on the Imuran is that the ulcers disappear as fast as they show up. Although it also bursts my bubble for the idea of having a 'Behcet's free' life after Imuran unless all stress factors are eliminated. That being said...I'm coming off everything in September. I honestly feel in my heart that this is not the right path.

The conclusion to the birth control malfunction issue is; I'm starting on a low estrogen birth control pill. Estrogen increases the chances of blood clots and since I have Behcet's I'm already at risk for clots. Why am I taking it then? I figure since the Imuran is killing the part of my immune system that causes inflammation (which causes clots) I should be safe.

No Imuran = No birth control

Day 80. Home

We made it home from the ocean. It was wonderful. We were lucky enough to join the local tribe in a drum circle and I can honestly say it was the calmest that the kids were the entire trip.

It's 6:30pm and I think I'll go to bed.