The ongoing journey

[renidrag]

Met with Dr. Monach, Rheumy, yesterday. Bloods from three months ago were better but inflammation levels still up. Talked about pred dose, leaving it up to me. The problem I have is the pred doesn't touch the neuropathy pain. I don't think upping the dose will help. Aside from that he seemed very anxious to get my Vena Cava Filter removed so I can get off Warfarin. He is setting up an appointment with VCF guy so we will go from three. Had more bloods drawn and noticed testing Anca, both, this time. Don't usually write this much, thought I would let you know. Dentist today, 16-18" of snow between now and Tuesday. We really have no place to put, driveway getting very narrow. Best to all.
Dale

[Debbie C]

Hey Dale..one of those hands in your avatar is mine. I HATE WINTER !!!!! I used to go to Boston often. My ex( now deceased) husband was from Revere,
I loved it there and the lobster rolls !!Well back to you ! it sounds like you are inproving..at least you will be off warfarin. Good luck with the results.

[Pete]

Hi Dale,

Has Lyrica been mentioned as treatment for your neuropathy? At any rate, I hope you get some relief soon.

Hope the snow doesn't mess things up too much this time. I also will claim one of the hands in your avatar.

[renidrag]

Lyrica was mentioned, would rather be where I am than go thru side effects. Met a man from a town over from me with RA, swears by it though.
Dale

[mishb]

The inflammation part is not so good Dale, but getting off warfarin sounds like excellent news. I hope it can be done.

I would send some sun across to you to melt the snow, but we aren't having much sun at the moment.

Keep us posted on how things go.

[annekat]

Dale, it sounds like your doc talks to you about your bloodwork results 3 months after the test? Mine was doing that, too, which made me feel like, well what about NOW? And then I'd get more blood drawn and talk about it at my appointment 2 or 3 months later, unless there was anything alarming, in which case he'd call me, which never happened. So now, I arrange with his office to ask for a blood draw about a week before my appointment. So when we talk about the results, it isn't old business. This has worked out well, as last time the news was that my inflammation level was down to normal, and I'm glad to have found that out then instead of waiting. Possibly, I misunderstood about how your doc does it, as I know he's known as a WG specialist, and mine isn't by a long shot.

[renidrag]

Like that idea, yes he would contact me if a problem. I don't really blame him though having probably
inherited most of Merckel's patients as well.
Dale

[annekat]

Like that idea, yes he would contact me if a problem. I don't really blame him though having probably
inherited most of Merckel's patients as well.
Dale

Well, maybe it isn't unusual to do it that way in a busy office. What bugged me even more was during time periods where, for whatever reason, he was having me come in every 2 months instead of 3. But he still only had me get bloodwork right after the appointment, and if it hadn't been 3 months yet, I wouldn't get it until the next appointment, which would mean a 4 month interval would pass instead of 3, and we'd still be talking about 4 month old bloodwork during the appointment. That routine seemed irresponsible and lazy to me. It could still happen, if he decided to see me in 2 month intervals again, but at least now whenever I get the tests, it'll be before instead of after an appointment, so I'll know the results right away. It wasn't hard to persuade him to do it that way, and his nurse and I are the ones doing the work of coordinating it with the lab.

[renidrag]

I am going to take that approach at next appt. Great idea, thank you.
Dale

[LisaMac]

Me too, it makes more sense to have current labs at each appointment. You guys have also inspired me to ask for a copy of my labs at each appointment. That way I can track how I feel with what my labs are saying. I'm so happy to have found you all! I start back on Rtx on the 18th as I am without a doubt in a flare.