I'm having a little flare.

[Col 23]

Hi those choices and options sounds amazing. Do them all I say.
Col 23

[Debbie C]

Kathy..I lived outside Orlando for 13 years ( Altamonte Springs ) but moved back to Ohio after my father passed to help my mother. My one sister just recently moved to Palm Bay -east coast so she said I have a place to move to whenever I am ready. I'll will probably be going in mid March just for a few week visit. I'm seeing other surgeon tommorrow to see if he can do my hernia surgery this week.And I have an appt. to start seeing another reumy down here on the 19th so I don't have to make the trip to Cleveland all the time..they can just advise each other. Then see my kidney Dr. on Wed. Never a dull moment. Not to mention having to take my mother to 6 different docs this month.

Anne....you should start asking the place where you get your blood drawn or yr drs. for a copy of all your blood work. The hosp. I go to has a thing called my chart online and any dr and myself can go in and get the results of any tests ( if they have asscess to that computer system ) Hope u get to feeling better soon..I personally think we are all guinea pigs,if one thing doesn't work then let's give this a shot. When I was first diagnosed the reumy said my nodules in my lungs were coming and going any on their own. So I really wonder if the meds are ALL nessecary ?? Get better soon,I'll keep u in my prayers...all of us !!

[annekat]

Good idea, Debra.... I know the blood work copy belongs to me and I have the right to it. Just need to make an effort to pursue it. Online would be great, might even be an option, for all I know... And thanks for your prayers and good wishes!

[Debbie C]

Good idea, Debra.... I know the blood work copy belongs to me and I have the right to it. Just need to make an effort to pursue it. Online would be great, might even be an option, for all I know... And thanks for your prayers and good wishes!

Anne, you are entitled to everything..whenever I have any x-rays,scans or ANYTHING done at the hosp. I request a copy of the cd and the report of who read it. I usually know the results before I go see my Dr.!! I keep every thing together in a notebook with different sections and with all my cd's. That way if I go to a new Dr. or move I have all my info. I can also keep good track of my bloodwork by going back thru the history and seeing the different changes.

[annekat]

Yes, I'm just not as well organized as you. Just want to get out of there and go home. Usually there are no changes anyway, so no big deal. Now that I'm having my first flare, it does seem more important to follow through on these things.

[Sangye]

Just seeing this.... It sounds like you caught the flare early enough to avoid stronger meds, Anne. I hope so, anyway. Are you feeling any better on the higher dose of mtx?

You are right to avoid more ctx unless you have severe disease activity. And you're also right to avoid using rtx until and unless you really need it. Save those drugs as much as possible. Because the higher dose of mtx will take a few weeks to fully kick in, they might need to bump up your pred dose for 2-3 weeks.

I'm hoping you can get a Wegs specialist soon.

As far as inflammatory markers, there are two: ESR/Sedimentation Rate/Sed Rate and CRP/C-Reactive Protein. The ESR isn't as good at detecting acute inflammation-- it's sort of a slow mover. The CRP is excellent at detecting acute inflammation. Both tests are sensitive for inflammation but not specific. So like you said, a cold or injury will also cause inflammation and increase the markers. But if you aren't sick or injured and your markers increase you must rule out Wegs first. If they're slowly increasing over time there's a good chance that Wegs is becoming more active.

[annekat]

Thanks, Sangye. Those explanations of the inflammatory markers are helpful. And I can do more research.

I did have a little cold, my first time catching anything since dx, back in December. It wasn't bad, and I got over it, but I continued to do a lot of coughing, and I was feeling it may have stirred up the Wegs a little. I've gotten pretty familiar with how my Wegs feels (which could change, I realize), and as time went on I felt more and more like I was having a flare, even though I'd never had one. There were a few little red spots of "Wegs rash" on my forearm. Like only 3 or 4! But I'd seen them before and was pretty sure what they were. And I was having night sweats, not usual for me. And more blood in the mucus. Fatigue. Etc. The doc thought I seemed pretty good but that I might be having a small one; the blood test showed more inflammation than he expected and pretty much validated what I was feeling. I always like feeling like I was more right than he was.

To answer your question, yes, it has now been a couple of weeks on the increased MTX and I do believe I am feeling better! And after the first week, since I was having breathing problems from the nasal junk getting into my bronchii, he upped my pred from 10mg to 20mg for at least a week. That seemed and felt like a lot, but I secretly did want more pred, and I am now on that for a few more days and feel that it is also helping.

Finding a WG specialist, for me, will probably mean finding a very good rheumy who routinely consults with top Wegs specialists. I have a line on such a rheumy in Seattle, who consults with Dr. Langford at CC, and have been talking with various forum members about this. A forum member who has had Wegs for a long time goes to this doctor and recommends him. I only hope it is not too hard to get an appointment, that he takes Medicare, etc. Being at the UW med school teaching hospital, I would imagine he does. I will keep you posted, and thanks for your encouragement.

[Sangye]

Sounds like everything is moving in a positive direction-- yay for all that!

When I have a gut feeling about part of the treatment (eg the pred needs to be higher or lower) I tell Dr Seo. Sometimes he has a strong opinion about why he's right but a lot of the time he says we should go with my gut. If he has a strong opinion he always has good reasoning behind it so I generally go with it. We do "arm wrestle" about some stuff, as he calls it. LOL We're becoming like an old married couple!

[annekat]

Sounds like everything is moving in a positive direction-- yay for all that!

When I have a gut feeling about part of the treatment (eg the pred needs to be higher or lower) I tell Dr Seo. Sometimes he has a strong opinion about why he's right but a lot of the time he says we should go with my gut. If he has a strong opinion he always has good reasoning behind it so I generally go with it. We do "arm wrestle" about some stuff, as he calls it. LOL We're becoming like an old married couple!

Dr. Seo sounds like a sweetie. I know what you mean about the gut feeling. I was getting ready to suggest more pred to my non-specialist doc, and thought he might bite my head off, so I was surprised when he doubled my dose, temporarily, before I even asked. I have done a little light "arm wrestling" with this guy, too, and have, from my point of view, proved him wrong on some occasions. But I don't know that he remembers them that way and I try not to act like I won and he lost.

[Sangye]

LOL I try not to rub it in when I've been right. If he starts going down the same road though, I give him The Look that says, "We've been here before."