I'm having a little flare.

[annekat]

Well, just got bloodwork this week and my inflammation levels are up, which goes along with how I've been feeling... increased fatigue and need to sleep, more mucus and coughing, more blood in mucus, night sweats and low fevers, some headaches, 3 little dots of typical WG rash on my forearm, and loss of appetite. So my MTX is being increased from 10mg./wk to 15mg/wk, which maybe is where it should have been in the first place. My kidney indicators are fine and no liver issues from the MTX. I think my lungs are OK, xrays have all been OK, and the coughing is from sinus drainage and dry tissues.

This is not a big flare or a big deal, just thought I'd mention it..... I'm at a point where I can get lots of rest and have a lot of flexibility in my activities. In fact, I'm feeling good about it, because it validates that I do indeed recognize the signs and am able to interpret what is going on in my own body. The doctor is the one who has to listen to ME on this, and he can order the tests and prescribe the drugs, but this should give me some credibility in his eyes that I know what I'm talking about. Yay! Of course it is largely due to this forum that I even have a CLUE what I'm talking about!

In addition to the 15mg./wk of MTX, I'm on 10mg./day of prednisone and Bactrim 3X/wk., plus folic acid, alendronate, and generic Mucinex. My doc hadn't yet suggested trying to start tapering the pred from where it's been at for a long time, and now, that seems pretty well off the table, which is fine with me until I feel better.

[pberggren1]

I'm sorry you are flaring Anne. I hope it can be brought under control soon.

[annekat]

I'm sorry you are flaring Anne. I hope it can be brought under control soon.

Thanks, Phil. I'm pretty hopeful it will resolve with the higher dose of MTX. I think I had a little flare when I switched from CTX to MTX, but it pretty well took care of itself, for awhile, anyway.

[Debbie C]

Sorry to hear the news Anne,but at least you caught it before it got worse. I went to see my gastrologist today and he said I have the start of Barretts esphogittis and I have to have a hatia hernia removed.My esphosgus and stomach are getting torn up from all the prednisone.I see my kidey dr. on Wed., my bloodwork wasn't to bad but my cholestrol is way high. And here I am trying to eat healthy and do all the right things. I think I'm going back to Fl. for awhile after my surgery and take a break from these drs..I seem to do better without them.

[annekat]

Sorry to hear the news Anne,but at least you caught it before it got worse. I went to see my gastrologist today and he said I have the start of Barretts esphogittis and I have to have a hatia hernia removed.My esphosgus and stomach are getting torn up from all the prednisone.I see my kidey dr. on Wed., my bloodwork wasn't to bad but my cholestrol is way high. And here I am trying to eat healthy and do all the right things. I think I'm going back to Fl. for awhile after my surgery and take a break from these drs..I seem to do better without them.

Thanks, Debra. You have a lot more to worry about than I do at this point. Taking a break in Florida sounds like a great idea.

[Col 23]

All the best
Col 23

[KathyB]

Sorry to hear the news Anne,but at least you caught it before it got worse. I went to see my gastrologist today and he said I have the start of Barretts esphogittis and I have to have a hatia hernia removed.My esphosgus and stomach are getting torn up from all the prednisone.I see my kidey dr. on Wed., my bloodwork wasn't to bad but my cholestrol is way high. And here I am trying to eat healthy and do all the right things. I think I'm going back to Fl. for awhile after my surgery and take a break from these drs..I seem to do better without them.

Sounds like a great idea for some R & R ... Florida! Where do you visit? My family is on the Gulf Coast. Mom & sis in Venice, brother in Englewood, son in Tampa, son in Orlando! I hope to get down there by the end of February or beginning of March! Enjoy!!!!

KB

[Col 23]

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

[Col 23]

They usually increase my Pred for awhile if I start flaring. Hate the Pred so hard to decrease always have to suffer to get down on it. Hope your
feeling better soon. I was on MTX before they put me on Cyclophosamine infusions. I was advised by new Rheumy that I should not have been on MTX for two years as I had never been in remission or medicated remission. Apparently MTX is to maintain and manage remission along with low dose pred.
Thought I would share this as the Cyclophosamine infusions have helped alot. Just started them up again after 6 month break, make me sick for about 5-6 days and then I come good, working on remission this year....
Col 23

[annekat]

They usually increase my Pred for awhile if I start flaring. Hate the Pred so hard to decrease always have to suffer to get down on it. Hope your
feeling better soon. I was on MTX before they put me on Cyclophosamine infusions. I was advised by new Rheumy that I should not have been on MTX for two years as I had never been in remission or medicated remission. Apparently MTX is to maintain and manage remission along with low dose pred.
Thought I would share this as the Cyclophosamine infusions have helped alot. Just started them up again after 6 month break, make me sick for about 5-6 days and then I come good, working on remission this year....
Col 23

Thanks, Col 23. I was on CTX first, during my sickest period with WG, because I had lung involvement. That is gone now and I'm on MTX because you shouldn't be on CTX for too long and it did its job. I still have the sinus issues and MTX is more appropriate for that. I've been on a pretty low dose, 10mg. a week, because I was doing pretty well. I was thinking of myself as close to medicated remission and that that was sort of like a maintenance dose. Now with the flare I'm up to 15mg for awhile. So, no, not in remission. I guess he didn't see fit to raise my pred dose but I'll see him in a couple weeks and I guess that could be an option if I'm not improving much. I hope not, since I'd rather start getting off it, but on the other hand, pred is not as much of a problem for me as for many on here, that is, I tolerate it pretty well. Thanks for the well wishes.