Bleh

[Psyborg]

Shortest remission ever... :p

So I finally got back to Cleveland and got a couple pieces of annoying news. First the rash I have is probably a small flare. I'm guessing caused by:
a) going off MTX for my surgery for two weeks
b) the surgery itself
or c) stress from work when the rash started (different job duties I got a bit worried about).

So I've got the MTX boosted higher now. /sigh

Further I screwed around with my Prednisone level to deal with the rash and have jacked up my system. Headaches and wooziness now. Dr Villa Forte wasn't happy that I'd done that, it was at the request of my PCP, but I didn't follow it exactly the way she said either so it's really on me there. So now I'm stuck back up at 10mg a day for a while as she said I'm risking a major flare monkeying with it.

On top of that they figured out that there has definitely been at least minor lung envolvement that was missed because we focused on the tracheal stenosis. So that made for a long day dealing with CT scan, labs and xrays too lol. And they want to do a Brochioscopy next month now too.

Bleh..sorry just need to vent on the cruddy day :)

[Sangye]

Oh no Bob, that's awful. Hopefully they can get things under control with "just" mtx and 10mg pred. I'm glad they're going to do a bronchoscopy and see exactly what's going on. SO relieved you're getting care with great docs. Hang in there. :hug2:

[Psyborg]

My biggest fear is ending up back on CTX again, it really beat me down pretty good. She said I have a week for the rash to clear up before we need to talk further. Hopefully bumping up the MTX will take care of it :)

I just wish I'd not messed with the Prednisone at this point, but the hives that I got along with the rash were horrid. Apparently I'm allergic to my rash? LOL

[Sangye]

I'm wondering if they were really hives. A few years ago I had a small Wegs leg ulcer that exploded into a huge ulcer within a couple days. (It went from a dime size to the diameter and thickness of my palm) Despite weeks of doctor visits and going to a wound clinic, we couldn't get the thing to heal at all. It was horrific looking. Then in the area all around it I got tiny unbelievably itchy bumps. They were like little vesicles of fluid. I also got them on the soles of my feet. I can't even describe the pain of the ulcer or the intense itchiness of the rash. I felt like I was going insane at one point.

I saw an Ayurvedic practitioner at that point and she put me on some Pitta (Fire) reducing remedies. Some herbs, some dietary changes. The ulcer began to heal very slowly, and the itchy rash disappeared in a few days. The rash had been due to an excess of the Fire element--very common with rashes. A few weeks later, when the rash was long gone, I took a small bite of dark, unsweetened chocolate. Within seconds my feet began to itch ferociously! Chocolate--especially dark chocolate-- is a major Fire producer. It was proof to me that there is an underlying Fire imbalance with Wegs.

[Psyborg]

Good question there. I assume the ones are hives because that's what they look like, but I've only had hives once previously in my entire life.

I have really several things:
1) Little tiny red rash that does not itch but looks like broken blood vessels below the skin surface. This is the part I really think is Wegs.
2) Around my wound from the surgery, and eventually on scattered areas around my body I got little blisters that looked a lot like poison ivy. They said it was fungal, but it got worse with the fungal treatement everywhere but around that wound. These itch, but in more of a burning fashion, they feel like poison ivy as well as I'm very familiar with poison ivy having been a dumb kid that liked the woods ;)
3) Big patches of red inflamed skin. This is the part that looks like an allergic reaction to me. I've had this show up around both of the other rash areas. But it gets out of control. When I went to my PCP I had this red rash with huge hive like blisters from my elbows to my fingers. it was so bad that the palms of my hands were in serious pain and even looked slightly bruised.

I know my diet has been jacked up recently. I'm having Pred cravings constantly and losing weight at the same time (one of the red flags that got me thinking flare myself). I need to figure out if I'm causing myself the problems with something I'm taking in.

[Sangye]

The #1 rash definitely sounds like Wegs. Have you taken pictures of all the rashes? It'll be very helpful for your Wegs doc.

[Psyborg]

She snapped some shots yesterday. The weird thing...the rash wanders just like the join pain. I've actually had this appear then disappear then reappear elsewhere. Weird disease :)

Luckily and unluckily the flare has resulted in no joint pain. Had I had any that would have been my first thought, but I'm glad to be able to move around still this time.

[marta]

Oh man Bob,

I think I probably would have done the same thing with the pred. I find that we get pretty good at knowing what's what with time and we'll only get better with experience. I was thinking what would happen if you took an antihisthamine (sp?) to see if any of the rashes are an allergic reaction. I know that while on pred and CTX I was allowed to take them and they helped with the sinus issues as well as helping me get some much needed sleep, but if the body is experiencing an allergic reaction to something that might help it clear up and eliminate one question at least.

Could the problems around the surgery wound be a location of slowed down healing - because of our super awesome immune system? I just had these things on my arm treated (my doc thinks they're warts and treated them as such) but they turned into these blistering, itching patches that have just started to subside in the last couple of days (they've been there for about 1.5 - 2 weeks) - quite ugly looking little guys, and super itchy!

Just trying to help in the process of self-diagnosis (something I feel like I'm getting quite good at) and anxiety surpression (something we all need to be good at to avoid stress related flares).

Take care brotha Bob. Hope this is just a passing phase and goes away as quickly as it came.

[vdub]

Dang, Bob! You probably taught me a good lesson here. I have my secret stash of pred for a special emergency, but maybe I should talk to the doc first, eh? I have been waiting for the rashes and broken blood vessels.... Its going to be in the calves of my legs -- I can feel it.... It's going to happen....

I had my MRI on the brain and CT of the lungs this morning. These two tests should tell if I'm in remission. On one hand, I'm getting my hopes up, but on the other, I don't feel like it's going to happen. I just feel like crap. I'm hoping its the mtx, but my VA doc the other day told that mtx shouldn't make you feel bad. That's not what the literature says, tho. Anyone else feel crappy when on mtx?

[pberggren1]

Oh ya, my doc does not want me to ever adjust pred dosage with out him knowing and approving of it. He is very firm in this regard.

[Sangye]

vdub, a lot of people feel lousy on mtx. I've had doctors tell me a drug "won't cause ___ " and it does. Not only do we not know everything about any drug, but we really have no idea how they behave when they're combined with other drugs. (Other than overt drug-to-drug interactions) I think you'll feel a lot better once you taper and get off mtx.

As far as tinkering with pred... please do not ever do that unless you've been on it a long time at various dosages and your doc says you know how to manipulate it safely. Dr Seo has given me the okay to do this.

[Psyborg]

Feeling a bit better, and less itchy today at least. I think the added MTX must be kicking in. My head is still screwy from the Prednisone, but I think it's improving.

The only annoyance on the Pred thing is the secretary at CC told me that I should call my family doctor for a rash. I though...erm ok..could be Wegs related, but whatever. My doctor treated it as she would a normal serious case of hives. I got a serious antihistamine and a boost in Pred. Probably would have been ok had I not tried to go back faster than what she said, but that ended up netting me two tapers from 40. So it's like a comedy of errors. My biggest suggestion, be really careful on messing with Pred dosage, I think I didn't feel off until it was really too late. So I'm going to have to suffer through the head issues for a few weeks I guess :)

[Sangye]

Sounds like you may need to give the CC secretary a bit of info about Wegs. She probably doesn't realize Wegs can cause a rash, and that a PCP might not be able to distinguish it from other types of rashes.

Re: your head symptoms. Is your vision off at all? Do lines look wavy when you look at them (eg. if you look at a tile floor, do some of the grout lines look wavy)?

[Psyborg]

No..not that bad. My vision is noticably worse (as it was last year when I was on higher doses), but it is generally not too far off from normal other than being blurry around the edges.

The worst of it is the fatigue and the feeling of a spike through either side of my skull :) I'm pretty good at working around the headaches, not as much so with the fatigue.

[vdub]

a lot of people feel lousy on mtx
I really hope that's the case. It would be nice to feel decent some day.

Bob, as for the rash, I think I would want to hear it from the doc first hand unless your PCP is really in-sync with what the folks at CC are doing. I am really fortunate that my endo, rheumy1, rheumy2, PCP, ent1, ent2, and VA are all in-sync, but then again, I kind of force-feed the info to them.... :-)

[Sangye]

Bob, did you describe your head pain to your CC doctor? I'm concerned that it's elevated intracranial pressure, brought on by sudden drops in pred. It can be dangerous.

[pberggren1]

Very good point Sangye. I forgot that a drop in pred can do this.

[Psyborg]

If my head doesn't clear by tomorrow I'll forward it along. It does feel better today than a few days ago, but still a little wonky.

[Psyborg]

Feeling better today in the head. Rash was worse today again though. Have a Dermatologist appointment on Thursday, will see if they have any ideas.

I'm scheduled for a Bronch at the end of July. And yet another CT scan...I need to call back and ask why I need another when I just got one, otherwise I'm sure my insurance will question it.

[pberggren1]

Feeling better today in the head. Rash was worse today again though. Have a Dermatologist appointment on Thursday, will see if they have any ideas.

I'm scheduled for a Bronch at the end of July. And yet another CT scan...I need to call back and ask why I need another when I just got one, otherwise I'm sure my insurance will question it.


CT of what? If a hospital calls me and says something like that is booked I ask right away who booked it and what body part. I always know what my docs are doing anyway because they tell me ahead of time.

[Psyborg]

It's a chest CT for the Pulonologist. Still waiting to hear back why they want another one in less than a month.

[Psyborg]

Here's a picture from my phone of my arm (where the rash is today). You can see the red dots and the little blister both represented here :)

1271

[Sangye]

I'm not an expert in other types of rashes, but that looks exactly like my Wegs rash when I have it.

[Psyborg]

Well I'm glad to know that my thoughts are not way off base then.

I got back all my lab work from last week, and it's pretty much on par with what it has been. I would expect CRP or Sed Rate to be elevated with a flare. Confusing :)

[Sangye]

If I only have the rash my labs always look normal. (Mine don't go out of range until I have severe disease activity) The rash is a tell-tale sign of active Wegs for me, and I've learned to ignore the labs. I don't know if that's the case for everyone.

[delorisdoe]

My labs always look abnormal with a rash...the rash and joint pain are my first clues that wg has escaped again.

[vdub]

Dang, Bob! You've really added to my already crappy day.... I have that on my legs occassionally. Most recently a couple weeks ago.

It wasn't a particularly good day. I'll post more on the Big "R" thread....

[Psyborg]

Sorry VDub :)

[Psyborg]

I think I may have self-diagnosed the skin issue. I see the dermatologist today so I'll find out.

I suspect that it's the folic acid I'm taking. The rash appeared when I was off of MTX for the surgery. I never stopped taking the Folic Acid though, which I take because MTX depletes Folic Acid. I'm guessing my level of Folic Acid spiked at that point. Anyway a side affect of folic acid are rashes and skin issues. I could be off base, but I'm guessing this might be it. Still doesn't explain why it is ongoing, other than the level hasn't had a chance to subside? Or I could be nuts :)

[Sangye]

Hmmm, could be Bob. Folic acid is a water-soluble vitamin though, so it's lost in urine. Most people need to take it as a supplement anyway, so I'm not sure it would be at a toxic level in you. But you never know. Your body might be allergic to something in the folic acid tablets.

[Psyborg]

Well... I know why I'm not a doctor :p

The Dermatologist said it looks like Vasculitis related issues for two of the three symptoms (and possibly the third, just because Wegs is weird). Amazingly the guy was actually pretty familiar with Vasculitis in general so I think he seemed quite reasonable. His take is that Dr Villa Forte's suspicion of a flare sounded right on here. He wants me to come back within 24 hours of any fresh breakouts for a biopsy.

Just an FYI for everyone else evidently any hives that last over 24 hours are not normal. And since we have vasculitis it could be this Uritcarial Vasculitis. The pictures on google look REALLY similar to what I had as far as hives. I would think it to be odd to have this and Wegs though wouldn't it? Or is it a secondary affect of wegs in my case? Strange because I've had some odd abdominal pain (Almost like gas bubbles in my body cavity) in the last few weeks which is a symptom of this particular ailment too.

[pberggren1]

Gas bubbles? Hmmm. I was talking to my doc today about something like this. I told him I have this feeling in various parts of my body, usually arms or legs, where it feels like blood is bubbling or grugling in my veins. It only lasts a few seconds and then reappears minutes later or hours later or days later. It is very inconsistent. He said he has not heard of something like that before but told me to keep a closer eye on it and see what it does long term.

[Psyborg]

Weird thing...I've had no pain whatsoever since this started accept for headaches. No finger stiffness, nothing. I've had a little bit of pain on and off since treatment started last year. Of course the Pred got boosted so that might be it. Really aggravated with myself on the Prednisone, Have to restart the taper from 10 again (when I get approval to start tapering), I'm going to guess. :(

[Psyborg]

Feeling better today all. I think the only lasting affect of my side trek though this mini-flare has been my Prednisone taper was delayed. I assume I'll have to start back at 1 mg every 3-4 weeks again from 10. Kinda bummed on that as I was down to 5 before I screwed things up.

On the bright side I think I can handle the gym again now. Though I have to take it pretty easy until I get final word on what's up with my lungs.

[marta]

Hey Bob,

Have you been hitting the gym before this? Is that a recent pic of you? Cuz if it is, holy man, does that give me hope that things can get back to normal. You looking good!!!! I know I'm changing subjects, but I had to say something cuz that's the way I am.

[Psyborg]

Yeah...recent pic. Had my wife snap a shot as it had been a while since I put an updated one on my facebook, figured I'd use it here too. Not yet on the gym, I've been walking and riding my bike is all. I do seem to have the opposite effect of Pred as everyone else, probably from my previous gastric bypass.

[Sangye]

I agree with Marta-- it's a great picture of you! :thumbsup:

[pberggren1]

You look very good Bob. What is your name of FB?

[Rini]

IK right? w/ all the talk about pred I was wondering the same thing

Hey Bob,

Have you been hitting the gym before this? Is that a recent pic of you? Cuz if it is, holy man, does that give me hope that things can get back to normal. You looking good!!!! I know I'm changing subjects, but I had to say something cuz that's the way I am.

[Psyborg]

I honestly barely use the FB though, mostly to keep semi-contact with old friends i wouldn't hear from otherwise :)