Update: Saw the doc this morning!

[mrtmeo]

I had a spot in my lung and felt like I was fighting a bad cold ALL THE TIME. The horrendous fatigue, etc. Kind of like how I feel right now. My first rheumatologist said it wasn't Wegener's. My second called the pathologist who did my lung biopsy and was informed that it was. So there you go. I've never been as bad off as others. I am lucky.
However, I am getting depressed over how I feel and there's no escape ........

If the TPMT test is not in, yet, why doesn't the dr have you on an alternative, such as Cellcept for now?

[annekat]

I had a spot in my lung and felt like I was fighting a bad cold ALL THE TIME. The horrendous fatigue, etc. Kind of like how I feel right now. My first rheumatologist said it wasn't Wegener's. My second called the pathologist who did my lung biopsy and was informed that it was. So there you go. I've never been as bad off as others. I am lucky.
However, I am getting depressed over how I feel and there's no escape ........

I always say I'm better off than many others. But with you, even though your bloodwork has been good, you always seem to have a lot of pain and unexplained symptoms, which makes you seem not that well off! It is disheartening that a fellow Weggie has to go through all that even while not seeming to be flaring or anything that can really be pinpointed. I have had my share of feeling totally crappy, especially when first treated and really unable to function, and a few times since then, but I really can't complain when hearing of what you go through, as well as those who are sicker, of course. I think you need to get a little bit luckier and get some answers! Your depression is completely understandable, and I wish you some relief from all of it.

[NikkiNicole]

The doc called in a prescription of 800mg of Ibuprofen to hopefully help with the joint pains I have been having a lot. I just don't know. Honestly, today I am down in the dumps when I should be happy that my labs all looked good. It makes me wonder if I am crazy. is it in my head? Is this what fibromyalgia is?! My brain is misfiring and making me have pain?
I don't know.

[annekat]

The doc called in a prescription of 800mg of Ibuprofen to hopefully help with the joint pains I have been having a lot. I just don't know. Honestly, today I am down in the dumps when I should be happy that my labs all looked good. It makes me wonder if I am crazy. is it in my head? Is this what fibromyalgia is?! My brain is misfiring and making me have pain?
I don't know.

I wish we could answer those things. I have no knowledge of fibromyalgia, except that it's painful, and I really hope you don't have it! I hope your doc can refer you to some other specialists who can help, and soon! And no, I don't think you are crazy, or that it is in your head!

[mishb]

When is your next specialist appointment Nikki? I don't think your normal doctor is up to scratch with WG and it's crazy symptoms

I have two friends with trigeminal and they were so bad. It's also called the suicide disease. Your symptoms sound a little different from theirs, thankfully
In regards to the fibro, this can be helped by changing your diet. You are in the process of changing your diet and therefore I think you could also rule out fibro.

I do worry about you as you are my little sis
It annoys me when you have to fill in for work for people that are not feeling well, yet you can't seem to get any down time

You are definitely not crazy, but you do need to get away from the phones and computers at work for a while.

[drz]

Would it be possible for you to go to some Center of excellence, like Mayo clinic, to get a through assessment of your Wegs and what ever else is going on to cause your feeling miserable?

Thousands of people go there every month to get assessed and get care. Mayo also has an extended consultation net work set up to consult with a few hundred other clinics on difficult cases and I think you would certainly qualify. Check and see if any of your doctors or clinics have access to this consultation now or inquire how you can get to Mayo or similar type facility for a good work up. You certainly need something done to get some relief!

[mrtmeo]

Hi Nikki,
Worried. Haven't heard any update for awhile.
How are you doing?

[NikkiNicole]

My headache actually was gone for like 4 days and as of Saturday it came back. I also am feeling facial pain almost daily. I get very flushed in my cheeks and I feel like I need to lie down. I got the results back yesterday but, of course, it doesn't say what they are so I just emailed the doctor to see whats up. I still need to see my regular doctor about my headache. She's booked up all the way until next week so I am trying to figure something out.

[NikkiNicole]

UPDATE: Doc just wrote me back. I can't take Imuran. So ..... Cellcept is our next attempt. I will pick it up at the pharmacy later tonight and start it in the morning, one pill twice a day and in two weeks, test my labs and see if I can then move up to two pills twice a day.

Something has to give. My face is already flushing again today and the headache is getting a little worse. Oh yay.

[mrtmeo]

Finally, something to try.
I pray it works well for you.