Good News Bad News

[BookNut]

Today was an interesting day. Both good and bad. The good? My meeting with the nutritionist. We talked about my problems with the new anti-inflammatory diet. She had some ideas for fending off the morning nausea. We made a plan. I will continue on the current diet until I am done with the steroids, so i can tell if the breathing improvements are due to food changes or prednisone changes. Once I feel pretty stable, then try to add apples and peanut butter for breakfast and see how that goes for a week. Next, try adding some cheese or yogurt. And so on. I suspect that I will NOT add back grains and sugar. I think that is the most likely culprit. We will see.


The bad part of yesterday? I went to my pulmonologist, and he told me he is out of ideas to help me. He is the second doctor to tell me that this week. A bit discouraging. He has talked to another doctor who treats patients with resistant forms of asthma, to see if she would be willing to see me. She said that, because of the allergy shots I take, I do not qualify for any of her new medicine trials....but she would be willing to see me and go over my condition. I will probably do that. Although she told the pulmy that I really need to stay at 10 mg, because going off completely is most likely what is causing the never ending cycles downward. Not happy with that idea.

[annekat]

Thanks for the update. Dang it, I'm unhappy about the bad news. But will be anxious to see what the new doc says. Staying at 10mg.? I wonder if that is the best opinion available. If it's the pred dependency and the adrenal insufficiency from taking it for so long, then I'd wonder if something could be done to get you either off of it or lower in dosage, without making you sicker. If it's truly the severity of the asthma, and that nothing else will ever control it, then I guess she could be right. But I'd still hope for a lower dose and maybe suggest trying an alternation schedule at some point, or switching to hydrocortisone, which might help the adrenals to kick in. I wish the answer was more obvious. I hope you aren't being limited by the docs that just happen to be near you, when there might be some elsewhere with better insights. Maybe your online research would yield some ideas that the docs might listen to. It must be really discouraging to hear a doc say he is out of ideas for helping you. I feel like a lot of them just keep things cut and dried so they can move on to the next patient and don't take time or energy to explore alternative ideas. Rats. I was hoping to hear better news.

But the nutritional stuff does sound somewhat encouraging. I know that too much grains or sugar can really do a number on me. Especially the sugar; I think it could even bring on a flare, almost, and don't eat a lot of it, but occasionally will binge. I hate to think of you having to do without things that you like. But it seems like you are happy with how this diet has made you feel, and that is good. I didn't know about the morning nausea, though, and am wondering what that is all about.

[BookNut]

Thanks Anne! You are always so concerned and encouraging. The pulmonologist is considered top in his field at the University of Rochester Medical Center. He is always relaxed and does not hurry me at all. I think he is just flumoxed. I think he finally realized that this problem has changed my life, is not getting better, and is actually getting worse. Though I had to be a bit aggravated when he said your PFT is normal. I told him...it might have been normal when I started here two years ago, but I have not had another pft test here. I have one every time at the allergist, and the last time I was there, I was doing relatively well and the F1 was 51% and has been as low as 49%. I am sure his COPD patients are mich worse.....but I am getting there. Oh well. I will follow up and try out this other doctor. I think though Imam going to ignore the staying on 10 mg idea. I plan to lower down very slowly to 5 and stay there for a little while. If the diet brings good results....then I will try going off altogether.

And of course....I will keep researching!

[Birdie]

flumoxed

Sheesh...
Book nuts always making you look stuff up.

[annekat]

Sheesh...
Book nuts always making you look stuff up. I hate to say it, but I just looked it up, because I thought it might be misspelled, and it was. it's 'flummoxed' with two m's. Of course, I realize it could have been more of a typo than a misspelling. The older I get, though, the worse my spelling gets and the more I have to look things up.

[BookNut]

Well...I probably have everyone beat when it comes to misspelling. I used to type the church bulletin, and mostly did OK...till I typed "What a Fiend we Have in Jesus". I am afraid even spell check would not have helped with that one! Ih well. Good thing the congregation was forgiving!

[annekat]

Well...I probably have everyone beat when it comes to misspelling. I used to type the church bulletin, and mostly did OK...till I typed "What a Fiend we Have in Jesus". I am afraid even spell check would not have helped with that one! Ih well. Good thing the congregation was forgiving! That is pretty funny! I was raised by a compulsive perfect speller, my mother, and for a long time, was pretty good, but I am slipping. My mother's favorite word to challenge people with was 'ophthalmologist', and I guess I got it right, because spell check didn't kick in. I have seen it spelled both correctly and incorrectly by fellow forum members.

[Alysia]

sorry it takes me time to write.... thinking about you daily Jacquie and asking my sweet dr. Phil to help you from his good place in the presence of God. we can count on him.
I think that your new pulmy will have to do a lot of work, including sending you to all tests possible: pft, ct, maybe even bronch, in order to understand what is going on. being constantly on pred in low dose is not too bad. I am on 5 mg for years. its ok. but I think the main issue is to understand what is going on and to to get correct treatment. the pred is only "masking" the real problem.

[BookNut]

thank you Alysia. You are always thinking and always so helpful. I just got my latest blood tests results after my detox. My sugar levels have dropped to normal thank goodness. But all my inflammation markers are high - some of them seem very high, such as the CRP. White blood cell count is also high. Yet I take an antibiotic 3 times a week. The problem is that, for the most part, if judgements on my condition are made on tests, x-rays and CTs, I don't look that bad. My X-rays and CTs show very minor issues. I can't remember the wording - but quite negligible. My current pulmy still says that the bronciectasis he sees on the images is so very minor as not to be worth talking about. I have found though that the treatments for bronchiectasis have helped. I have insisted on having a script for 3% saline inhalation and have gotten approval for n-acytlsysteine - an OTC pill that is often prescribed for bronchi. and it has done wonders for my sinus issues. I had a bronchoscopy two years ago - and nothing was found. I had an endoscopy done about a year ago - and that found a staph aureus infection. Again - nothing really bad. And yet I continue to have bouts of severe shortness of breath.

I appreciate the help and encouragement you have given me on FB to continue with my detox. Looks like I have unearthed an allergy to coffee. We will see how it all progresses.

[me2]

Have you considered seeing a doctor trained in functional medicine? You see a nutritionist , which is good, but might not have broad enough training to deal with a situation like yours. Remember, no matter how thoroughly you have explored your options, there are still other types of doctors to spend money on. A different perspective might shed some light.

[Alysia]

I am sorry for the inflamation markers. What does it mean ? Where do you have an infection and what caused it ? The docs need to check it.
Then, its not an allergy as I wrote to you on facebook or not only.... how is your Igg ?

[BookNut]

Alysia,

My PCP describes her practice as integrated medicine. The detox I am following is by Mark Hyman, who is trained in functional medicine. My PCP has been studying him for a few years now. I don't know if I mentioned it. I am scheduled to see a new asthma specialist and I have also signed up for a Pulmonary Rehab program. Fortunately, I have good insurance to cover all this. I have to pay 100% of the premium - but it is worth it as long as we can continue to afford it.

[Alysia]

I am glad you can afford good caring.
I am worried because of your elavated crp and wbc. What does it mean ? As far as I understand it means that there is an infection somewhere .. where ? What ? Why still with the antibiotic ? Maybe its not the right kind ? Your docs will have to give you answers or at least try to...

[BookNut]

I know. It worries me some too. Especially this week. although my breathing is better, I feel terribly tired. Fortunately, I was able to get an appt with my primary care earlier than normal because of a cancellation. I am hoping she will have some ideas. I see her in two weeks. I am also considering sinus surgery. My post nasal drip has been reduced by at least half...probably more. But there are definite signs of infection in what is left. My ENT has always been ambivalent about whether surgery will help. When contemplating surgery, you really want your surgeon to be enthusiastic about it. Might just be his very mild temperment. Anyway..I think I should give sinus surgery a try before I get much older and it gets riskier.

[me2]

For years my ENTs said I was not a candidate for sinus surgery because of active disease (WG). But as I moved into drug induced remission we talked about it again. Actually, I was becoming quite desperate at the time because of repeated infections and constant use of anti-biotics. My sinuses could not work normally because of changes to the bone structure and heavy scarring from decades of WG activity. I looked at a CT of my sinus next to a normal one and it was shocking.

So, I was told that surgery might help, might not help, or might make it worse. The odds favored that it would help. I was pretty nervous partly because of the numerous stories about failed sinus surgery.
That was about three years ago. I had the surgery (along with surgery to fix my eye drainage) and it has been a god send. Opening up some portions of my distorted sinuses allowed them to drain and fight off infections in a closer to normal fashion.

My surgeon was not enthusiastic but gave me a realistic idea of how things might work. He is a great surgeon, a good person, and would not have even done the surgery if he did not believe it was in my best interest.

I'm sure you know that even low grade sinus infection could be contributing to your fatigue. I hope you have as good of surgeon as I do to help you find the best course of action (or in-action).

I'm sure every case is different but I can also say that the procedure I had was not that bad as far as pain and recovery. (plus I had the eye surgery at the same time)
I felt pretty good afterward and it was amazing to feel air moving in places it had not for years. Even now it feels amazing to breath in my repaired sinus.

[BookNut]

Thank you Me2! It really helps to hear from someone whose surgeon was a bit ambivalent about doing the surgery. I am fortunate that I do not have Wegs...so do not have that roadblock. I see him within a month or so, and am really leaning toward scheduling the surgery. I appreciate you sharing your story!

[BookNut]

I am glad you can afford good caring.
I am worried because of your elavated crp and wbc. What does it mean ? As far as I understand it means that there is an infection somewhere .. where ? What ? Why still with the antibiotic ? Maybe its not the right kind ? Your docs will have to give you answers or at least try to...

I had another look at my lab results and am a little more worried. The WBC should be no more than 10.43 and mine is 13.1. That doesn't seem too bad...but the CRP seems a bit scary. It should be less than 8.0 and mine is 28.8! Seems a bit extreme. Anxious to get back to my PCP about it. I see her in about two weeks.

[drz]

I had another look at my lab results and am a little more worried. The WBC should be no more than 10.43 and mine is 13.1. That doesn't seem too bad...but the CRP seems a bit scary. It should be less than 8.0 and mine is 28.8! Seems a bit extreme. Anxious to get back to my PCP about it. I see her in about two weeks.

I wouldn't want to wait that long.
A serious infection usually requires quick treatment. Can you get in earlier? Use a Walk In clinic or ER?

[me2]

I agree with DRZ. I have found a walk in clinic near me that is really great when I need to be seen soon. They are remarkably competent for being a small operation. Or leave a message with your PCP stating your concerns and asking to be advised.

[BookNut]

Dr.Z and Me2,
I just emailed my PCP. She is usually good about getting back to me quickly...though she has lost her PA, and her schedule is packed. Still...I think she has slots for emergencies. I will check with my allergist as well. The urgent care here is not great...but good in a pinch.

The odd thing is that I feel relatively good. Just wickedly fatigued.

[me2]

Perhaps a culture could be taken from your sinus to target the bugs with the best anti biotic. If they test for fungus too it will take longer to get the result of that back but it might be interesting to know if you are fighting a fungus- maybe you have already done these things?

[BookNut]

Perhaps a culture could be taken from your sinus to target the bugs with the best anti biotic. If they test for fungus too it will take longer to get the result of that back but it might be interesting to know if you are fighting a fungus- maybe you have already done these things?

Been there, done that. No fungus, but there was staphlococcus aureus. Might be worth another culture to see if there are any changes.

[Birdie]

Just wickedly fatigued.

Just wickedly fatigued my a**.

Do you have a coat hanger stuck in your hair?

So... come outa the closet.

You've got all the symptoms including hanging out here.

You've gotta be a closet Weggie.

:) :) :) :) :) :) :) :)

[annekat]

I'll be interested to hear what your PCP thinks about those numbers. I just got back some lab results, too, which I went over with the doc. But we didn't talk about every single item. I see my WBC is 14.2, with top of normal range given as 10.8. The doc would have said if he was very concerned about that. My SED rate was up to 32 from 25. He said he wasn't "too concerned" about that, although I wonder. I don't get a CRP reading, though I know most people do. Is he being lazy by not asking for it? Would it be a big deal to get it added? Don't want to go on and on about my stuff since this is your thread. But I will say that your report of feeling "wickedly fatigued" struck a chord. I've been chalking it up to tapering pred and using up a lot of spoons and then needing to crash. But today I haven't been able to do a thing. Are you still tapering pred? I also don't feel too bad, and not really "sick" except for the fatigue.

Aside from those issues, maybe the sinus surgery would be a good idea to pursue. It's impressive that you've reduced your post nasal drip by more than half. But if you still have bad bugs lurking in there, that's not good.... those may be getting resistant to the antibiotics you are taking. So, go for it, if you can get your ENT to agree. Sometimes I feel lucky that the main structures of my nasal cavity are eroded away by Wegs activity, leaving the former sinus pockets wide open and no longer subject to infections, according to my ENT.

[Birdie]

But I will say that your report of feeling "wickedly fatigued" struck a chord.
I also don't feel too bad, and not really "sick" except for the fatigue.
may be getting resistant to the antibiotics you are taking.

My fatigue got this bad after MANY infections when one infection ignored antibiotics.

It's not fun figuring out how it will be cured, and if the cure will be worse than the infection. The jury is still out on that question since six and half months later I'm still only functioning at about 10%, with no sign of improvement.

So BookNut, take it from my perspective, infections can slide right by a culture and cause big trouble.

[BookNut]

Sometimes I feel lucky that the main structures of my nasal cavity are eroded away by Wegs activity, leaving the former sinus pockets wide open and no longer subject to infections, according to my ENT.

Now there is a classic example of making lemonade from lemons! Pretty common with all Weggies I suppose!

I think your doctor should do a CRP test. Such a good name for it, if it is the reason why I currently feel like crap. Anyway - it seems important for you to have, as it is a marker for inflammation. And it doesn't cause any extra "work" for the doctor, other than checking a box on a lab request. Geesh!

The exhaustion is just getting me down. Bob and I went to an antique book sale on Saturday. Right up my alley of course. And since my nose is working these days, I can actually smell the bookish aroma I love so much. I could barely walk around and give a cursory glance at all the booths. Bought one book and had to head for some tables and chairs set up for customers. I read 2 pages from the book, and was done for. Had to lay my head on the table for the next hour while Bob finished up with the show.

The new diet takes a lot of cooking - an activity that I enjoy, especially when tacking new recipes. I usually can stand forever at my counter chopping veggies like a ninja. Not now. I have to sit at the table to get the job done. And take rest breaks in between. Very annoying.

I am only on 10 mg of pred. Normally by this time in a taper, I have my energy back, so this fatigue is a puzzle. Will keep you posted. Stay well. Next time you feel like crap - ask for a CRP test. That should be our mantra.

[BookNut]

Just wickedly fatigued my a**.

Do you have a coat hanger stuck in your hair?

So... come outa the closet.

You've got all the symptoms including hanging out here.

You've gotta be a closet Weggie.

:) :) :) :) :) :) :) :)

Yup - that's me. Closet Weggie. Ironically, I confess to be pleased in a perverse kind of way to have a few bad numbers. Somehow, I manage to be sick while my labs look ok. Is there some other sorts of vasculitis? I will have to research - again. One of the diseases that cause elevated CRP levels is vasculitis. Onward to Google and beyond I guess!

I hang around here because you folks keep encouraging me. I am on a couple of other forums - but they are not nearly as interesting as this one. So - I am always thankful for the doctor who mis-diagnosed me.

[BookNut]

My fatigue got this bad after MANY infections when one infection ignored antibiotics.

It's not fun figuring out how it will be cured, and if the cure will be worse than the infection. The jury is still out on that question since six and half months later I'm still only functioning at about 10%, with no sign of improvement.

So BookNut, take it from my perspective, infections can slide right by a culture and cause big trouble.

Wow. I hope something kicks in for you soon! Sadly, I was almost happy to see some bad numbers. Everytime my plumy orders tests, they come out looking good. Nice to hear that the tests are not perfect. That's what bugs me. I look good on paper. In day to day operation - not so much.

[annekat]

Jacquie, the SED rate is a measure of inflammation, and the one my doc uses. The CRP is another one. Most Weggies' docs do both, maybe to make doubly sure, I don't know. If I ask my doc about it he'd probably say there's no need to do both. Same with testing my kidney function, most docs seem to do both a urine test and a test for the amount of creatinine in the blood. My doc just does the creatinine test. I could go get urine testing dipsticks at a pharmacy if I wanted to. But I shouldn't have to, they cost money. He would probably say the one test is enough, and my results have never been bad. I'm not defending him. I might be able to twist his arm into doing the additional testing. After all this time. I don't know if it would add to the cost of the test, but Medicare seems to pay the entire amount. But I seem to be doing OK with the testing that's being done, and we know when my inflammation is up by the SED rate. I'm still not defending him, I just don't relish the thought of bringing up the subject. But I might start with just looking at some other items on the lab report and then gravitating towards.... "other Weggies I know are getting this and that test and I'm not, and I was wondering why....." I'd just like a little explanation, does one test have a different slant to it, or is it better, or what?

[BookNut]

That is the best oart of this forum...finding out what might be a good thing to ask for. I will ask about sed rates, as I don't think that has been done before.

[BookNut]

OK - the rash I got after adding coffee back to my elimination diet has faded. But I want to show you pictures. I think it looks a lot like a mild version of a vasculitis rash. Does it look familiar to anyone? Will be doing more research. Somehow an image from the internet that I saved got attached at the bottom. Just ignore it.

First, my wrists:

2210 2211

Then my upper thigh. Hey - who said you can't have a weird disease and be pornographic at the same time?

2212

Thoughts?

[Alysia]

outch.... It looks painful.... I am so sorry that you are going through this, Jacquie.... it DOESNT look like allregy rash to me, not the one that my son had (not looks like dermatitis atopic, like I wrote to you on facebook).
normal wbc in Israel is not more then 11. crp no more then 5.
maybe the good news are that it is not the coffee ??
It leads to check something systemic, auto immune ???? why did they decide that you dont have wg ?
I also think that you shouldnt wait 2 weeks. you have something that the pred is "covering" and then 10mg is too low.
I would ask for general check of all issues, including heart and kidnyes. to make sure.
sending my prayers and love and asking my sweet dr. Phil to help you from above...

[BookNut]

Thanks. Not painful...but itchy. Maybe it is time to go to an immunologist again. The only one I have been to is the one who misdiagnosed Wegs. I had a slightly elevated p-anca. But i have had a bronch and an endoscopy and several cts with no signs of granulomas. So my pulmonologist ruled out Wegs. My husband does not like the immunologist I went to...but maybe one of the others in the practice. I hope to hear from my PCP today.

[MikeG-2012]

OK - the rash I got after adding coffee back to my elimination diet has faded. But I want to show you pictures. I think it looks a lot like a mild version of a vasculitis rash. Does it look familiar to anyone? Will be doing more research. Then my upper thigh. Hey - who said you can't have a weird disease and be pornographic at the same time? Thoughts?

Sure looks like a vasculitis rash to me. Looks an awful lot like the stuff I had during my last flare-up.

[Alysia]

Thanks. Not painful...but itchy. Maybe it is time to go to an immunologist again. The only one I have been to is the one who misdiagnosed Wegs. I had a slightly elevated p-anca. But i have had a bronch and an endoscopy and several cts with no signs of granulomas. So my pulmonologist ruled out Wegs. My husband does not like the immunologist I went to...but maybe one of the others in the practice. I hope to hear from my PCP today.

it is not immunlogist who can diagnose wg but rheumatologist. or an auto immune clinic.
I didnt have granulomas in the ct of the lungs. still I def have wg.
I am not saying that you have it. just need to rethink again all over.
you need a good doc.
I wish dr. Phil was around to reccomand someone, he knew all about them.....
maybe dr. Speck, to consult with....

[annekat]

That is the best oart of this forum...finding out what might be a good thing to ask for. I will ask about sed rates, as I don't think that has been done before. It may be that your doc, like mine, only thinks one measure of inflammation in the body is necessary. And I could be wrong that most Weggies get both. But I think a lot of them do. It wouldn't hurt for either of us to ask our docs.

Here is a link to Mayo's discussion of the SED rate, followed by their discussion of the CRP, and you can move on to 'Why It's Done'. In scanning them, I didn't see where one would be preferred over the other for our purposes, or that both should be done. It also states in both cases that the test can't pinpoint the location of inflammation in the body, although a more advanced version of the CRP can suggest a risk for coronary artery disease.
Sed rate (erythrocyte sedimentation rate) - Mayo Clinic (http://www.mayoclinic.org/tests-procedures/sed-rate/basics/definition/prc-20013502)
C-reactive protein test - Mayo Clinic (http://www.mayoclinic.org/tests-procedures/c-reactive-protein/basics/definition/prc-20014480)

[annekat]

Just noticed there's an 'In Depth' tab, which I didn't go to, on both those articles from Mayo that I linked above.

[annekat]

The first two pics are a little blurry for me to form much of a conclusion. The way it is concentrated around your wrists makes me think 'allergy' a little more, but I know there are many kinds of rashes and I'm not qualified to judge. I don't get real rashes, unless they are very faint and barely perceptible, but I know others do. What I get is mostly random, distinct and isolated bright red or purplish spots, usually on my forearms, that fade in a few days. They may be very small or up to the size of a flax seed, and fade within a few days. I have seen the pics of extreme vasculitis rashes and know there is a wide range of intensity in this occurrence.

The pic of your thigh looks a little more like something I might get occasionally, sort of faint and hard to tell which are freckles and which are rash. But I don't know if you freckle like I do. I'm sorry you can't remove the bottom pic, because some may not read carefully and may assume that is you. I do find Mike's reply interesting, and any others.

[BookNut]

Thanks everyone.

Anne..I DO have freckles...but the rash is the red dots, while the freckles are the brown dots. The large red circle on to the top picture started out as very closely clustered red "pimples" that eventually merged into one red bumpy circle. I will look at the Mayo Clinic articles, including the in depth part.

I have heard back from both doctors. My PCP is swamped, having not been able to replace the colleague that left the practice. She sent a message via her nurse, and it was a bit garbled. Looks like I will be getting an antibiotic and an anti fungal called in to my pharmacy. I was in my allergist's office today for my Xolair shot. the nurse told me that the dr. had recieved my email, but I should not be too concerned about the crp. the nurse said the reading was high....but many people have readings,as high as 90+. This is the story of my life. I am sick...but just not sick enough, I guess.

I think I will get a better idea from my PCP when I see her. Only about 10 days away. If my breathing stays as good as it has been..I should be ok.

Alysia.....I will start looking into a rheumatologist. I think there are rheumys at my allergist's office.

Mike....interesting to hear the rash looks like one you had. Actually, the picture that I posted in error and can't remove is a picture I found online in an article about vasculitis.

I WILL be pushing my doctors. Although my breathing is good at the moment...I am very concerned about my extreme ftigue as this is a new wrinkle.

Thanks again everyone! You are the best!

[annekat]

I guess it did look like there were some freckles. I just had some trouble distinguishing the brown from the red in the pic. I have had some experience of a ring of WG spots forming around a bruise or other injury, not exactly like the circle cluster you are describing.

Different kinds of docs can diagnose or misdiagnose Wegs, although rheumies are preferred. My ENT dx'ed mine through nasal biopsy, or I should say the pathologist who looked at the sample dx'ed it. That was right after an internist at the hospital strongly suggested it, given the results of a lung CT scan. No rheumies were involved. So you say the immunologist mis-diagnosed it, but who was the doc who finally said you didn't have it? The same one, or someone else? I have noticed more UK Weggies talking about immunologists on here than in the US, although they also mention rheumies. I think immunologists largely deal with allergies, asthma and other immune system disorders, of which Wegs is one. So since you are said to have allergies, it seems appropriate to see that doc, as well as others who are on your case. If Wegs became suspected again or you wanted another opinion, it would be wise to se a rheumy. Wegs can be pretty hard to diagnose. I don't remember you ever saying you had a tissue biopsy, or did you?

All this rash stuff is very interesting, seeing as how it has popped up right after you completed the 10 days of detox diet and are still following it to some extent. I'm waiting to hear that some doc or other can pinpoint the cause of the rashes. We already know that red dye causes rashes for you, and perhaps other things can, too. I just don't thing it is so simple that any of us can say it looks or sounds like Wegs. But you should definitely pursue that possibility again in the absence of any other great insights by your medical team.

The fatigue is also pretty weird, having just popped up, and not seeming to you like typical pred tapering fatigue. I hope that passes, and we will just have to wait and see about all of this. You will be in my thoughts.

[BookNut]

Anne,

The doctor that ruled it out was my pulmonologist. Not entirely trustworthy since, up till my last appt, he has tended to make very light of my issues. He said it was not Wegs at our very first visit, based solely on my lab reports. Hefurther cemented his opinon based on a bronchoscopy and xrays and ct scans. Seems like the endocscopy by my ENT would have shown up,something if there was anything. Right now, I just feel that something is not right...so will be looking further.

Maybe it is just the prednisone causing the fatigue. Weight loss and night sweats seem to be a common symptom with all the vasculitis varieties. Unitentional Weight loss is definitely not one of my problems. :rolleyes1: I have not really noticed night sweats, though I notice that, besides fatigue with very mild effort, I also perspire so much with the slightest effort that I end up with soaking wet hair. Understandable two weeks ago when it was hot and humid. Not this week when the weather is gorgeous, upper 70s, low 80s and no humidity.

I guess the best to hope for is that it is just some sort of atypical asthma.

[annekat]

Hmm, well, my pulmy ruled it out, too, after the lab reports, xray and CT scan and was only convinced after my nose bridge dropped and the positive dx came in from from the ENT. And now the same pulmy is treating me, go figure. But anyway, I'm not jumping on any bandwagon to say that it sounds like you have WG after all. There have just been too many different things going on, and you even saw that pulmy at the CC who also didn't seem to think you had WG. Right? (Though I hate to bring that up again.)

My only weight loss was a little before dx, when things got really bad in my lungs, and then I was put on pred, and there went the weight loss! Plus I'd been on pred quite a few times for sinus infections in the pre-dx period. You'd think you'd have felt some of the typical night sweats, though those didn't happen much at all when it was smoldering. If you had WG lung involvement like mine, I'd think it would escalate to where not only was breathing difficult, but you were coughing really hard with chunks of blood coming up, and it became very painful to cough. Along with the night sweats and fevers. Everyone is different. But if you have WG, I'd guess it is more smoldering than acute, and having asthma on the side would be a pretty unpleasant complication.

I'm glad you are getting some beautiful late summer weather with no humidity! That should help your asthma some, I'd think.

[drz]

I have always got both the ESR (SED rate) and CRP to check for inflammation. My understanding is the CRP is more sensitive to immediate state and ESR is more of longer time measure. My doctors place more stock in my CRP reading since it measures current status more accurately. My local lab also has had trouble doing ESR correctly as it is not automated like most lab tests and accuracy depends upon a human element to do the test accurately. My SED rate is always normal at Mayo or another large metro clinic I use but usually high at my local clinic even when all my CRPs have been in normal range which theoretically should never happen. So if I only did one inflammation test I would opt for the CRP to know my current status.

Inflections are main reason for increases in CRP but active Wegs would also do that. Elevation in WBC usually means an infection for me. When I was on CTX I ran in the 3-5 range for WBC and anything over 4.5 usually meant an infection. Now my indications for infection would be a much higher number.

[annekat]

That's good info, drz. Maybe I'll bug my doc next time and ask for the CRP, as well. He's kind of hard-boiled but has sort of backed down a few times when I badger him about something. I think he knows I'm a smart person who knows more than the average bear about the disease I have and how it is treated. That, of course, is due to this awesome forum with people like you on it. :smile1:

[BookNut]

I have always got both the ESR (SED rate) and CRP to check for inflammation. My understanding is the CRP is more sensitive to immediate state and ESR is more of longer time measure. My doctors place more stock in my CRP reading since it measures current status more accurately. My local lab also has had trouble doing ESR correctly as it is not automated like most lab tests and accuracy depends upon a human element to do the test accurately. My SED rate is always normal at Mayo or another large metro clinic I use but usually high at my local clinic even when all my CRPs have been in normal range which theoretically should never happen. So if I only did one inflammation test I would opt for the CRP to know my current status.

Inflections are main reason for increases in CRP but active Wegs would also do that. Elevation in WBC usually means an infection for me. When I was on CTX I ran in the 3-5 range for WBC and anything over 4.5 usually meant an infection. Now my indications for infection would be a much higher number.

Not sure why my 28.8 reading seems to be considered "no big deal". sigh..... Will badger my PCP about it. Anne and I can call ourselves The Badgerers from now on.

[MikeG-2012]

Will badger my PCP about it. Anne and I can call ourselves The Badgerers from now on.

EVERYONE needs to learn to be badgers with their doctors and their individual healthcare!

Here's a Badger for y'all:

2213 (http://www.wisc.edu/)

[Pete]

EVERYONE needs to learn to be badgers with their doctors and their individual healthcare!

Here's a Badger for y'all:

2213 (http://www.wisc.edu/)

Buckeyes eat badgers for breakfast!! (Sorry -- just couldn't resist.)

[MikeG-2012]

Buckeyes eat badgers for breakfast!! (Sorry -- just couldn't resist.)

Yea, I was going to say that this Badger was in season to hunt, but no one seems to be able to bag one! LOL! Historically, though you may be right! (-8

[Pete]

And now, back to the topic at hand before I get Putinized...

[BookNut]

Loving all the badger jokes!!

My ever efficient allergist's office called back this morning. The nurse who gave me my shot yesterday knew I was concerned about the crp level. We also told her about a possible sinus infection and the results of the new diet. The office called back with a message from my doctor that my sinus infection is most likely the culprit, the new diet sounds like a great idea, and wanting to know when my appt is with an asthma specialist I have been referred to. She wants to have a talk with her and be kept in the loop.

My sinus infection seems better this morning. That will help.

I have to figure out a way to sent a link to pix of my rash. Also going to Pulmonary Rehab for the first time today. Lots going on.

[annekat]

I think my mother used to say "quit badgering me!" and now I say it to my cats. A little foggy this morning for thinking about how to post pics, but maybe I can help you figure it out, since we both have Macs. Is the pic somewhere weird? You did OK with the last ones. If I can save one on my desktop it's easy to upload it from there. It's better now that Andrew has improved the pic posting system a bit.

Things are sounding pretty good! Sounds quite plausible that the sinus infection is giving you the higher CRP. Looking forward to hearing how it goes with the Pulmonary Rehab!

[BookNut]

I am ok with pix on the forum. I just have to take some times and get them on my blog or my webpage, so I can send them a link, since I cannot send pix to my doctors' email.

[annekat]

Oh, misunderstood about the pics. Looking forward to hearing how it went with Pulmonary Rehab today.