In a malaise...of sorts

[Dirty Don]

Well, it seems I'm having a relapse of sorts. Need ideas. Been off pred for a month. Not long after discontinuing, my stomach has been upset...a mild nausea. I did have a short case of heatstroke at the same time (c'mon, I live in the desert!). Since then, my stomach remains the same, have added that old lethargy, very little appetite, and a few aches and pains...none of this is like the first flare. Oh, also coughing up a clear whitish mucous.

Soooo, I have my internist working on the stomach, and I'm off to Mayo Friday for a complete work up...I hope they get to the bottom of this soon....missing too many tee times!

anyway, in the interim, does anyone have any info to give me some possible, likely clarity on this?

Much appreciated...Dirty

[drz]

My random thoughts in order of appearance. Mayo should be able to sort it all out for you and have you made them aware of your current symptoms. My doctor at Mayo says if I start having some new symptoms he or some one will see me sooner than my regular appointment.

The literature says that around 80% of Weggies will relapse in first year or two when they come off all their maintenance meds. Could that be your case or do you think it is just the normal adjustment period we go through when taper our pred down? Maybe your adrenal glands aren't producing enough stuff to keep you feeling good, just enough to keep you alive and feeling crummy. Also have a pharmacy check you meds. Many of them list a side effect of nausea or upset stomach and maybe the pred was masking it before. But like Jack often said, just because you know you have Wegs doesn't mean you can't have something else going on too, but Wegs should always be the first suspected culprit. Have you been tested for the local fever that killed several people from our area when they went to Arizona for the winter.

Hope you get it sorted out soon so you can get back to enjoying golf and drinking coffee!

[Dirty Don]

"Have you been tested for the local fever that killed several people from our area when they went to Arizona for the winter."

Yes, have been tested for Valley Fever...again, WG mimics some of those same symptoms. One of the reasons 'Arizona fever' kills people from other areas is because their docs don't recognize Valley Fever and it's treatments, not living here makes them unaware of it. It doesn't always kill, in fact, very rarely, but here we are very conscious of crap in the air and the docs almost always look to Valley Fever for those kinds of symptoms. You're right, it could be Valley Fever...just what I'd need! Yes, Mayo is always interested in my conditions...I'm their 'poster boy' to date! Ha! I've recovered so fast and so cleanly that they love monitoring a success story. Also, it's very easy to get in there as they have an appointment system that, even though my original appointment was for 10/22, my wife got on their appt line an hour later and got me in on Friday cuz of a cancellation. They serve so many patients that there are always cancellations. Since I've never gone thru a normal adjustment period after drugs (pred), I'm really not sure what's going on. Al's death lingers in my mind and heart, and I remember him not feeling well, but still upright, until it was too late...trying not to go there. Thanks drz!

[annekat]

I don't know what I can add to what drz said, but just want to say I'm sorry to hear you are feeling crummy. I hope it isn't Valley Fever, not that I know a thing about it. I also hope it's not a WG relapse, but if it is, I'm guessing it will be nothing like your first flare, not even close, but will be easily controlled by a course of meds. I'm anxious to hear what conclusions they come to as a result of the workup.

[Dirty Don]

The closest thing to Valley Fever that I can think of may be TB or severe lasting pneumonia...lots of fatigue, lung problems...but it can be controlled with a little pill. While I'm thinking of it, visitors to AZ should be warned or educated about it as when they are here on vacations they take no precautions at all...who can blame them...it's beautiful here now for the next 9 months and all they want to do is go out and play...but, as drz pointed out, many go home sick and don't even know it and when they go to docs at home, Valley Fever is not on their 'lookout' lists, althought it should be.

[Debbie C]

I never heard of Valley Fever either...what's it caused from ,is it pretty common and is there like a vaccine for it ? I'm "guessing" it's a little bit of both..coming off the preds and having a mild heatstroke. I had one when I lived in Fl. and my stomach was all messed up for awhile ( and that was before w.g. ) I wouldn't compare what happened to Al to the way you are feeling.I'm sure the docs will get you squared away..maybe you might have to go back on a low dose of preds again. Can you go get bloodwork tomorrow and then they would have the results Fri. when you go in ? Hope you feel better soon:hug2:

[Dirty Don]

Yeah, I wasn't making a comparison to Al...noooo way. But, it lingers in my head that things can be going along well and whammo...that's all. I'm suspecting a 'pred' reaction myself, but we'll see. As for Mayo, one of the reasons I go there is I will know what's going on by 2PM Friday afternoon. Tests all morning, labs done while I am in other testing, then I meet with doc at 2...they will have all the info, and we will discuss what's going on and what needs to be done. Valley Fever is the result of a spore that is unearthed during windy days, construction, and going to far off the beaten path. It is a lung virus that actually lives in the desert dirt...so I really try not to hit my golf ball out into the desert!!! LOL!

[Debbie C]

Wow,that's great ,you'll know everything Friday.I'll say a prayer for you that all turns out well. Now go have a cup of coffee and relax by the palms !!!

[Pete]

Hope Mayo gets it figured out quickly, Don. Wish you could stay off pred, but at least it's available if you need a boost.

[drz]

Don, keep us posted on what you learn? Will your golfing buddies give you an extra handicap due to poor health?:unsure:

Side effect of drugs or reaction to pred reduction sound the most likely suspects from what you report. Hope it is an easy fix for you.

[Dirty Don]

Are you kidding me drz!? My guys wouldn't pick me up off the ground if I fainted till I made the putt!!! LOL! No, they are the best...many of them came to see me in the hospital the first time, some even babysat me when I returned home so wife could get out a bit to store, etc. I'm a very lucky person, and I appreciate all of you and them for the support. Just a lucky guy...kind of...damn WG!! LOL! I hope you're right drz...all my research has discovered nothing for these particular symptoms...so that kind of leaves pred reduction as the culprit. I had just finished my tapering about the time I started feeling poorly...sheesh! I should have more info than I can handle by Friday!!!!!!

[mishb]

Don that's no good - we can't have you feeling poorly :sad:

I was firstly thinking that maybe your stomach likes having pred around.......but I'm wondering, did you stop taking the antacids tablets at the same time as the pred??
Maybe your stomach got used to the antacid which could have been masking the fact that pred had already caused a small ulcer - maybe :unsure:

I'm glad Friday is not too far away. Take care until then .........and no stressing

[Alysia]

Hi Don,
I am so sorry that you are not feeling good :sad:
stomach issues can be a lot of things, kind of virus or rotten food. our weak immune system is fragile and germs in the food can be a disaster.
I have colon involvement of WG (rare) but my symptoms are different (diarhea, strong pains in the stomach, cant eat a lot of things).
may I suggest you to replace your Coffee with some herbal tea ? might be much better for the stomach, Chamomlie for example.
I was writing Coffee with big C, since your coffee is also a member here, and it might not like my suggestion to replace it :mad1: :lol:
I am sending you my praying :hug1::love:

[gilders]

Good luck with appointment tomorrow. Hopefully you'll get some much needed answers!
Although it was confirmed today that I am having a relapse, I feel a little less stressed than recently,as I know something is now being done about it.

[annekat]

Alysia, I strongly doubt that Don will give up his coffee! And chamomile might just put him to sleep. But you could be right, he might benefit by at least cutting back. I myself have started drinking it more lately, though not really a lot, and am finding it to be a good mood enhancer when I get to feeling low.

[rebekah]

Sorry to hear you aren't feeling well. Good thing tomorrow's Friday so you should have answers and hopefully be on your way to feeling better.

It's not Don unless he has his coffee... I stopped drinking coffee in July so I wouldn't make my heart rate higher than it currently is. I used to live off of it since my school's library had a Starbucks on the first floor. Giving it up was the hardest thing ever... Take care and I hope you find some relief soon. Hope the appointment goes well for you!

[Debbie C]

O.K. Don....it's Friday...what did you find out ????

[Dirty Don]

Jeeez Deb...slow down!! LOL! Actually, just arrived home from a looooooonnng day in waiting rooms: go there, get stabbed; go here, pee in something; go in there, get pushed propped and xrayed...enuff! Anyway, saw doc (Mayo finally goofed with me...they sent me to my ENT...I have a new NP who's handling 'moi' while Mayo hires a new AI doc, mine retired recently), but after I suggested my NP made a mistake with which he agreed, he got it all set up. It appears there's "trace" protein in urine, CRP is at 14.6, lymphocytes at .84, sed rate at 28, and c-ANCA at 1:4...nothing terribly bad, another couple numbers at borderlines. GOT PRED!?!?!?!? Just ate some of that wonderful stuff as soon as I walked in the door! Am I better yet???? LMAO! Docs gonna put me back on just 3 mgs/day till next week when I go in yet again...this time with the NP and another WG specialist (I don't know why they don't put me on his case list, but he may be overbooked...who knows). Probably won't know much till tomorrow morning or Sunday, as that's when the stomach is really active. Can't remember how long pred took to react in the body...?

drz: you will appreciate this. Was all done with tests, had lunch, waiting in room for ENT doc to call me. So, got on Ipad (this is about 2 hours down the road from the 1st appt) and decided to browse my med recs at Mayo....voila! All my day's tests were in...I went in to doc's room full well knowing what was up...but I played good until we both realized the error on my NP's part. Anyway, the wonders of tech!! Very cool!

Hope all is well with all...I feel better just calming down the paranoia!!!! Coffffffeeeeee!

[mishb]

Even with the little stuff up, they still sound like they have got it all under control.

I'm sorry you had to go back onto the pred - I hope it helps, but it's such a low dose.....who knows.
I hope the stomach issues don't surface this weekend.

Give the man his Coffee

[Alysia]

Hi Don,
I am glad that things are not so bad. 3 mg is ok to endure.
your relief is the best part :thumbup:
take care.

[Debbie C]

Glad to hear there was nothing Major going on.sorry though you had to go back on preds but it could have been worse.At least the worrying about it is over. Take care and maybe take in a round of golf when the sun goes down a little !!!

[carriej22]

Don, I don't know if this is any peace to you but my stomach started bothering me (nausea, full feeling, upset, lack of appetite) right around diagnosis and never really left. That being said; I will feel sick one moment and then ABSOLUTELY STARVING the next. It's almost like my stomach feels sick; so I skip meals and then my body decides it's hungry and switches gears. It's very very strange; but I usually can only handle eating breakfast and then I eat supper. I usually spend all day long feeling queasy then 5-6pm hits and I'm starving. They don't know why it's there; but it is.

When I was on super high doses of pred I could eat everything though. I wanted to eat non-stop; I was like a bottomless pit.

[Dirty Don]

Thnx Carrie...sounds exactly like what I'm experiencing. They also found a hepatic cyst on liver in ultrasound of stomach...while the cyst may need to be removed, it presents no danger. But, could also be affecting stomach. Frankly Scarlett...the pred is back, feel a bit better already...I'm good with it till I see docs next week!

[carriej22]

I also have no gallbladder and I sometimes wonder if that has anything to do with it... As I remember bouts of nausea before I was diagnosed; and I would think I was getting the flu and it made me very paranoid for quite some time; and I actually became a bit emetophobic which caused a bit of anxiety as I always thought I was on the verge of whoofin' my cookies.

I still feel a bit like I'm about to barf sometimes but not nearly as often.

Maybe we're all just losing our minds lol

[Pete]

Thnx Carrie...sounds exactly like what I'm experiencing. They also found a hepatic cyst on liver in ultrasound of stomach...while the cyst may need to be removed, it presents no danger. But, could also be affecting stomach. Frankly Scarlett...the pred is back, feel a bit better already...I'm good with it till I see docs next week!

My last chest CT showed some hepatic cysts as well. My docs thought them to be "unremarkable". My 84-year old mother-in-law has them also, and she's the "energizer bunny" of the family.

[NikkiNicole]

Don, I just found this thread and I am glad that you were able to get into the doctor right away to get all this under control before it got too bad. I hope everything continues to get better with the right amount of Pred and Coffee.
Carrie, I also don't have a gallbladder and have had some major gastrointestinal issues since having it removed in 2007. When they pulled it out, the doctor said it was the most inflamed, infected gallbladder he had ever seen (wonder if this lil monster of a disease started then?). Yet ,since then, I have trouble with high fat foods. Not to overshare but quite literally I would eat a few bites and my gut would turn itself inside out and dump everything out of me. Not up, but down ... if you catch my drift. Nausea would happen a lot.
I got it under control with changing my diet. But, I still notice if I eat something that has too much fat in it (and not the good kind of fat) I get crampy or ... something else.
Well, now that I've grossed everyone out .......

[Alysia]

Yet ,since then, I have trouble with high fat foods. Not to overshare but quite literally I would eat a few bites and my gut would turn itself inside out and dump everything out of me. Not up, but down ... if you catch my drift. Nausea would happen a lot.
I got it under control with changing my diet. But, I still notice if I eat something that has too much fat in it (and not the good kind of fat) I get crampy or ... something else.
Well, now that I've grossed everyone out .......

Hi Nikki and everyone:
I can't eat so many foods and according to my gastro-doc it is wg related (IBD, colon involvement of wg)
I wonder who else have problems with eating these: (if I eat any of these I got diarhea)
most fruits
most vegetables
meat
fat food, oily
spicy food
food with artificial ingredients
more... ? else.... ?

[mishb]

Don, I just found this thread and I am glad that you were able to get into the doctor right away to get all this under control before it got too bad. I hope everything continues to get better with the right amount of Pred and Coffee.
Carrie, I also don't have a gallbladder and have had some major gastrointestinal issues since having it removed in 2007. When they pulled it out, the doctor said it was the most inflamed, infected gallbladder he had ever seen (wonder if this lil monster of a disease started then?). Yet ,since then, I have trouble with high fat foods. Not to overshare but quite literally I would eat a few bites and my gut would turn itself inside out and dump everything out of me. Not up, but down ... if you catch my drift. Nausea would happen a lot.
I got it under control with changing my diet. But, I still notice if I eat something that has too much fat in it (and not the good kind of fat) I get crampy or ... something else.
Well, now that I've grossed everyone out .......

Nikki, my husband and my two daughters all had their gallbladders out within 6 months of each other.

My husband and eldest daughter (21 at the time) made history at the hospital for being the first father and daughter combination to have their gallbladders out on the same day.......and my youngest (just before her 18th birthday) made history at the hospital for being the youngest to have her gallbladder removed at that hospital.

The three of them can relate to the high fat foods issue - and they don't have WG

[Dirty Don]

To those interested in my malaise...turns head...nope, no coffee yet...anyways, it has been the very beginnings of a flare...so saith me and the docs...the 'gut' feeling is gone, energy returning bit by bit, and back on 3-5mgs/day of pred. Nothing, but it did/has helped me almost immediately...then again, I may be crazy Pete...GO OSU...er, Ducks...LOL! Yes, so if you thought I was a bit off anyway...wait till the pred kicks me for a while!! LOL! All take care...what ends well, was meant to be...WHAT! Seeeeee, damn pred...

[annekat]

Don, OF COURSE we are interested in your malaise, regardless of coffee! I'm glad to hear that it sounds like you are nipping that little flare in the bud! So you are back on pred, a small amount, and I think I'm remembering right that you are on MTX as well. So, the MTX did not prevent a flare from beginning without pred on board. I'm only being analytical about this because I am on MTX and pred, and in the process of tapering pred, but I think it will be months before I'm off it, if ever... I pay almost no attention to sports, but, GO, DUCKS!

[HopeinTN]

Sounds like you are making a come back!

[Alysia]

To those interested in my malaise...turns head...nope, no coffee yet...anyways, it has been the very beginnings of a flare...so saith me and the docs...the 'gut' feeling is gone, energy returning bit by bit, and back on 3-5mgs/day of pred. Nothing, but it did/has helped me almost immediately...then again, I may be crazy Pete...GO OSU...er, Ducks...LOL! Yes, so if you thought I was a bit off anyway...wait till the pred kicks me for a while!! LOL! All take care...what ends well, was meant to be...WHAT! Seeeeee, damn pred...

Hi Don.
of course we are intersted in you, and in your malaise. I am glad you "catch" it early enough :)
what happened to your coffee?