Possible Flare!!! Yikes!!!

[pberggren1]

I told my boss that I will work this Thursday, Friday, and Saturday night but that I will probably be going up to Saskatoon to see my Rheumy about a possible flare. I told him that if I am for sure flaring that I will not be able to work any more, I will need to take it easy for a year or so.

I suspect that my Rheumy will put me back on Cyclophosphamide again if I am flaring. Not looking forward to it, but it has to be done.

[Jack]

Hope you get on OK with the rheumy. Don't assume cyclophosphamide just yet, you might get away with increasing your current meds or a switch to azathioprine.

[pberggren1]

Good point Jack. I have to keep poisitve.

Thanks

[jola57]

Phil, my thoughts are with you that it is just a blip and you are going to be fine. Wishing you positive thoughts and best results. Maybe mtx will do the trick instead of cyclo.

[elephant]

Looking forward for you going to your appointment. What will be will be regarding medicines. Stay positive and baby steps. You will get there ( remission).

[pberggren1]

Thanks guys

I think the pred is kicking in. I decided to double up on the pred and go to 100mg. What do you guys think? Or maybe even triple until I talk to my Rheumy on Monday.

[Jack]

100mg of pred is one hell of a lot. It would make me very nervous to take that much without supervision and follow up blood tests.

Sorry, but I'm not sure what I would do in your position. I'm lucky enough to be able to see a specialist at very short notice.

Wish I could be of more help. :(

[jola57]

Phil, Jack is right, 100 is just too much so don't overdo it. When I had hives on my recent trip because of the sun I just took a bit more from 12 to 25 for two days only, then back down to 20, 15 and 12. 50 is high enough for the couple days till monday.

[pberggren1]

Thanks guys, I will stick to 50

[elephant]

I agree 100mg of Prednisone is too much. I am on a beta blocker ( atenenol) for racing heart/blood pressure medicine. It works great. I take a low dose 12.5mg.

[Sangye]

Holy bananas, Phil-- 100 mg is way too much to take on your own! Take what your doc said to take. 50 mg is a big dose and should keep the fire down enough until Monday. If it doesn't, you should go to the ER.

[pberggren1]

Thanks Sangye. You're right. I will make sure that I see my Rheumy on Monday or Tuesday, I will demand it.

[pberggren1]

I called my Rheumy today and talked with the receptionist. I told her that the sinuses and joints were getting quite bad but are much better now that I have been on the Pred and Moxfloxacin since Wednesday. She said Pred can mask some of the symptoms and she would relay my message on to Dr. Markland - My Rheumy - and would call back by tomorrow morning.

[Sangye]

Yay-- good receptionist. I'm glad you made that call.

[pberggren1]

So am I.

I was wondering about a couple of other things.

First I am experiencing not only my dry typical sinuses but a very dry mouth and throat. I still have a homeopathic medicine called Schuessler Cell Salts - Natrum Mur. 6DH - I was wondering if you have ever heard of this. I tried it about 3 years ago for the same thing but it only helped a little. I then tried another product called Moi-Stir Dry Mouth Solution. It came in a spray bottle. The active ingredients are: Potassium Chloride, Dibasic Sodium Phosphate, Calcium Chloride, Magnesium Chloride, and Sodium Chloride. This one didn't help much either. Can you Sangye, or anyone else suggest anything else?

Secondly, I got some of my blood results back. My CRP is 22, Creatinine is 86, ESR is 35. I think those are the key ones. I think the ESR is high - does that not suggest inflamation? I forget what the other ones like CRP and Creatinine tell. I think the Creatinine has to do with kidney function. Please help me out on this one. I'm still waiting to hear back from my Rheumy.

Over and Out,
Phil of the north

[elephant]

Phil, I think your creatinine is normal. Your other lab values are about the same as mine. I think that it means it's up, not sure. My Rheumy was not alarmed. I am like Jack, always have high ANCA's.....
You will get your answer from your Rheumy hopefully soon. The only thing I can recommend is a humidifier for your dry throat. Good luck.:)

[pberggren1]

Thank you Elephant. Do you recommend a cool mist one or a warm mist one?

[elephant]

It is a personal preference and it also depends on your climate. If it's cold try the warm mist. Another thing is that you have to clean these often because they harbor mold/bacteria. As long as you read the instructions and care of the model you buy. It should help, if your skin is dry and lips chapped. :) Keep us posted ...

[pberggren1]

Thanks again.

[Sangye]

Phil, both your CRP and ESR/Sed Rate are high. The ESR measures more chronic inflammation and take awhile to return to normal once the inflammation is resolved. ESR takes longer to rise and longer to fall. CRP is a more sensitive indicator of acute inflammation and falls quickly when the inflammation is treated.

Neither one is specific for Wegs inflammation, of course, but if the increase is new, it might indicate a flare.

Creatinine is an indicator of kidney function. I think some countries use a different measurement. In the US the normal range is 0.8 - 1.4 mg/dL. I don't know if your 22 is in mg/dL.

[Sangye]

Phil, I just noticed your question about homeopathy. i LOVE homeopathy but it is a very big no-no for Weggies. Especially the cell salts. They are way too powerful at stimulating the immune system and detoxifying the body.

[coffeelover]

GEEZ PHil! I hope you are feeling better soon. I take a few days away from the group and come back on to you scaring me!
In regards to dryness, I use a humidifier in my main rooms in the house. I keep mine running non stop on a low setting and have to fill it every night and now in this below zero dry yucky weather, twice a day. I also rinse my nose out and use vaseline or AYR to keep my nose lubricated.
Watch what you eat too...It seems if I eat too much salt in my diet, I dry out rather quickly. It is quite annoying when the mouth and nose get so dry. Sometimes I think that maybe I took my medicine incorrectly .....I don't always pay attention. ( I am a muti tasker)
Anyway...please Phil....demand that attention you so deserve.
I hope your employer is an understanding one. I am looking for a pt worker here??
Lisa

[pberggren1]

My Creatinine is 22 mg/L. Thank you Sangye and Lisa.

Lisa, what is AYR?

[onatreetop]

My creatinine is at 0.9 mg/dL according to the ER labs. Hope that helps you? The normal range here is 0.6 - 1.3 like sanyge said.

[Jack]

My creatinine is around 1.7 and I'm running on one transplanted kidney.

[elephant]

Hey Phil, you probably think I'm a real nut job. When I saw that your creatinine was 86, I thought wow that is really high and never in my life have seen this. My creatinine is 1.0. I was thinking the same thing as Sangye re: USA creatinine lab values. So I did some research on line and found creatinine in umol/L ranges for males. The creatinine range for male was 68-118 umol/L. I see that your creatinine is 22 mg/L, if that is true you already know that it is high. I am hoping it was your urea lab value, cause normal range is 18-21. Sorry for my confusion.

[pberggren1]

I think you meant to say that my CRP is 22 mg/L. My Urea os 5.9 mmol/L.

[Sangye]

Converting 22 mg/L to deciliters (dL), your Creatinine is 2.2. Higher than normal, but not by much. Your lab work should show the normal range.

[pberggren1]

No, it is my CRP that is 22 and my Creatinine that is 86.

[elephant]

If your creatinine is 2.2, hopefully it will go down with treatment with the wegeners medicine. Phil hope you see your Rheumy soon. Need to find a Kidney doctor too. Thanks for clearing that up Sangye. I guess I was thinking positive and didn't want Phil to have a high creatinine so I was so relieved to to see other creatinine values ( Umole/L). OOPPss

[pberggren1]

I have a Nephrologist that gets copies of all my blood and urine work.

[Sangye]

Okay, well a creatinine of 8.6 mg/dL is much higher than I thought! I honestly don't know how dangerously high it is, though. Is your neph very good at reviewing blood work quickly? If not, give the office a call and nudge a little.

[pberggren1]

The reference range on my lab report sheet says that the Creatinine os 62 to 115 umol/L. I'm not sure what umol is? I do know that my Creatinine is usually in the 80's or 90's.

[Sangye]

Then your creatinine is within normal range!

[pberggren1]

That makes me feel better, Sangye. I put a lot of trust in you and your knowledge as a Holistic Practitioner and of course WG as well. It always makes me feel better when I see you are active on the forum even though I have not been very active over the last few months. Thank goodness I have internet again.

[pberggren1]

I got some copies of some blood and urine work back to late September - not very long I know, but at least a little to go by.

C-ANCA

Sept.22 was 5, Oct.13 was 7, and Nov. 17 was 7

CRP

Sept.22 was 16, Oct.13 was 18, Nov.17 was 12 and Dec.30 was 22.

ESR

Sept.22 was 30, Oct.13 was 38, Nov.17 was 25, and Dec.30 was 35

Creatinine

Sept.22 was 94, Oct.13 was100, Nov.17 was 111, and Dec.30 was 86

Also on my Nov.17 Urinalysis under Comments it said: Hyalire Caste - do you know what this means Sangye?

Also I had some Clinical Chemistry done on Dec.8:

Albumin = 44, range is 35-50
Calcium = 2.44, range is 2.1-2.55
Ca, Corrected = 2.36, range is 2.1-2.55
Phosphorus = 1.35, range is .8-1.07
Magnesium = 0.88, range is .66-1.07

Also Protein, U24 was .06, range is .04-.23, on Oct.20

B12 and TSH were also in normal range on Oct.13 and normal B12 on Dec.8

Any input is greatly appreciated Sangye and others.

Still waiting to hear back from Rheumy. If I don't get a call by 3pm I will call back to Rheumy's office.

[Sangye]

Your labs don't look too shabby. However, given your increasing joint and sinus pain, a steadily rising CRP and a quick response to 50 mg pred, it looks suspicious of a Wegs flare. Hyaline casts in the urine can be normal (exertion, dehydration) or they can be signs of kidney disease. I don't know if you chronically have hyaline casts due to your history of kidney involvement. If not, this may be another sign of a Wegs flare. Your rheumy and neph will know what to do with all this. Your job is to get hold of them.

[pberggren1]

I was able to talk with my Rheumy's receptionist. She said that Dr. Markland, my Rheumy, has read my e-mail regarding my situation. I sent her another e-mail updating her and sking her to contact me by e-mail or Phone in the next 48 hrs. I told her it is extremely important for me to get her response and opinion on the matter at hand.

I agree with you Sangye that a steadily rising CRP and a quick response to the Pred and to the Moxifloxacin point to a flare - even though I am feeling much better. I don't know about the hyaline casts. My Rheumy and Neph have nver mentioned them before.

[pberggren1]

I just got my ANCA results and the C-ANCA is up to 10 now. I cannot get a hold of my Rheumy. I have called 3 times and sent 2 e-mails this week and still no response. What would you do guys? Should I go to the local ER or should I go to the main hospital 3 hours away in Saskatoon? At this point I am fed up and pissed off at my Rheumy.

[Sangye]

You need to be seen by a Wegs specialist to figure out a new treatment regimen. Unless you're having urgent symptoms I don't think an ER is going to help.

When you call your rheumy are you just leaving voicemails or do you get a receptionist?

[pberggren1]

When I called a few minutes ago I left a voice message. The office is closed Fridays. I should probably go to Saskatoon where other specialists are.

[elephant]

Like Sangye said need to go to a Weg specialist. If they are in Saskatoon, then go there. That is really frustrating when a doctor does not respond to you. You need to find a doctor that will listen and respect you. How are you feeling?

[pberggren1]

Right now I am feeling sluggish and tired and clammy and pasty. It's a hard feeling to describe but I've had it before. I got to talk to my Rheumy's nurse and told her what was going on and I needed to talk to my Rheumy very soon. She said she would relay the urgent message this afternoon when she sees her. So I should be getting a call back from my Rheumy sometime this afternoon.

[elephant]

Sorry your feeling like this. How is your blood pressue? Do you have a fever? Dizzy? Phil, hoping you get the call soon. Keep us posted.

[elephant]

Phil, how about your blood sugar? With your increased Prednisone dose, maybe your blood sugars are up. Do you have a blood sugar monitor.

[pberggren1]

I have never really closely monitored my blood suger and I don't have a blood sugar monitor. I'm not sure what my blood pressure is - I don't have a blood pressure monitor either. Do you suggest I get both of these monitors? I don't feel dizzy and I don't think I have a fever. When I look back to September and October I should have done something then - I think I was in denial and affraid to go back on the Cytoxan. The slowly rising C-ANCA accompanied wtih rising fatigue and joint stiffness and soreness starting back in September should have made me sound the warning bell with my Rheumy back then. Oh well, now is now and I learn from all the flares - they all have been different.

[pberggren1]

Good news!!!! Not a flare!!!

I just talked to my rheumy and she is quite positive it is not a flare and was just a sinus infection!!!!

What a relief!!!!

[elephant]

That is a relief Phil. I highly recommend a blood pressure machine, because our medicines and WG can cause our blood pressure to rise. If your still on high dose of Prednisone, recommend that too. Just make sure they are checking your blood sugars. Don't be so hard on your self. We all don't want to go on those harsh drugs. Get better soon. So, the Rheumy ordered a antibiotic?

[pberggren1]

No, it was the ENT that prescribed the Pred and Antibiotic last week.

Thanks again for everyones concern and compassion and nagging. Speaking of nagging I haven't seen Doug on here much.

[Jack]

Please remember - if it does not respond to antibiotics within a few days, there is a good chance that it is Wegener's. Don't be fobbed off with stories of hard to treat infections if things start to get worse.

[pberggren1]

Thanks Jack - You are absolutely right!!!

[Sangye]

Yes, I agree with Jack. A sinus infection doesn't account for your increasing joint pain.

What we thought was hard-to-treat pneumonia last summer was lung hemorrhage. Listen to your body. You're the only one who knows what your Wegs symptoms feel like.

[pberggren1]

I still find it hard to disern between active disease and other things.

[elephant]

Phil, I am in the same boat right now. Started taking Bactrim daily ( noticed increased stuffiness, ears feeling full, no hearing loss, kinda tired) to see if it's a sinus infection or a flare? I spoke with my local Rheumy and she wants me to start the Veramyst and see if that works. That takes about two weeks to work.
Phil, I totally understand what you are going through. Jack and Sangye are right. If you are still having joint pain the sounds like a flare. But, I hope I am wrong. Hope it's an infection/virus for the both of us. Need to promise that we do not go into denial!

[Sangye]

Elephant and Phil: That's why I have 2 elbows--to poke each of you in the ribs if you go into denial!

(I can't poke Jack in the ribs anymore. He gets all "You broke my bone, you broke my bone!") :D

[pberggren1]

Actually, I feel much better right now. I don't have any joint stiffness or soreness any more and the sinuses are improving more. My sinuses, mouth, and larynx are still quite dry but slowly improving as well. I am ticklish in the ribs Sangye so be careful, I may react violently.

[onatreetop]

Sorry you got to go through this to I feel like we were walking hand in hand this week. I was at the Er showed to the RA he cxld all his appt and I never got the message.I knew something was really wrong but didnt want to go to the Er again because they said sinus too. So I dicided straigh to the prim docs office and asked them to listen to my lungs because my ribs were killing me. I could take a deep breath. So they agreed to see me. Listened and it was all good. Then checked my pressure , I knew it was high had the headache, He said you need different pain meds for your face pain and valium to calm me down. I saw the pulm doc today and all is good the nodules are no more but agreed there are upper resp issues. He asked about the sleeping problems and wants a sleep study on Monday!!! I had one scheduled for the 18th but he said oh know!!!! I will get you in next week. Then I get home a bit relieved that it all went well and had a message from Kim at JHU. Called her back my RA said it was urgent that I get in asap. I have an appiontment on the 20th with Killman. What a day andor very scary week. But it is all finally coming together thank god because I am loosing my mind. Next ENT and I have the whole set!!!! I hope your invisable RA can get things done for you like mine did.

[pberggren1]

I hope things to better for you. If your RA wants you in soon that sounds serious.

[Jack]

(I can't poke Jack in the ribs anymore. He gets all "You broke my bone, you broke my bone!") :D
I had not thought of that! It must have been all your damn rib poking that weakened them. They still hurt, but getting much better now. ;)

[timbo vic aust]

good to see things are on the mend phil hang in there we all just have to watch the ribs especially jack, sangye just has to be a bit gentler with him lol. its good to know there is a lot of knowlegde and long term experience with this disese from the guys and girls all over the world . :)

[elephant]

We will get through this together. Diddo

[Sangye]

Jack--LOL! Okay, I'll lighten up. And Phil, don't worry. I'll poke and duck.

Onatreetop, I can't believe your docs think it's urgent for you to have a sleep study (to look for sleep apnea) but they think you're okay taking valium, which suppresses breathing. This isn't something that can wait until JHU to be addressed.
Valium Information from Drugs.com (http://www.drugs.com/valium.html)

[onatreetop]

me either. So far every med they gave me has another med to go with it it seems. And he the sleep thing.........................ugh. I know that there are sinus issues but I have always had them, now there important instead of allergies. I was wondering the same thing myself. If I have had to pull off the road and sleep beecause I know I am going to fall asleep when driving than is this a good idea?? I have only had to 5 or 6 times in the last two monthes but still. I dont get enough sleep especially during the holidays but wow!!! I sleep and I sleep hard for the most part. But lately the joint pain in my knees has been waking me in the morning an hour earlier than I normally get up and it is baddddddddddddddddd. i have iced and heated them tried to walk it out. This is a new one for me. I have always had hip and back pain but the knees and elbows? Poop!!

[Sangye]

Before my diagnosis, every joint in my body was in crippling pain at once (except for my spine). I really feel for you. I hope you can find relief soon!

[onatreetop]

i have had excellerated digenirative bone d in my back in hips since my early 20's. One knee had the ACL replacement and munis. tear trimmed. But that was 22years ago and it is still going strong. This intense ache pain is for no one!!! I wouldnt wish it on any living thing I dont know how you all get through it on a daily basis? My mom started the infusions and says it made all the differance in the world she has tried some many different things for the arth. pain but finally some relief. How are you faring sayne? Are you okay?

[Sangye]

On Monday I started tapering the pred. I had been at 4 mg/ day for several months, but since it acts like a much higher dose in me, I have to taper very slowly. I decided to cut down by 1/2 mg per day and see how it goes. I'm not really sure yet. I've had more joint pain and stiffness than on the 4 mg, but not full-blown Wegs pain. I do have better energy, though. Pred really depletes me.

I'm going to stay at the 3.5 mg for a few more days and rest up some. (The last few days have been pretty intense) If the pain keeps up, I'll reevaluate.

My Wegs doc thought I might wind up staying on the 4 mg at least until the springtime round of Ritux, but he was willing to let me try a slow taper.

[onatreetop]

It sounds like a good plan. You are the only one who will know how it works for you because you will be the one feeling it. I havent been under 15mgs yet and have a strong felling that when I see the Ra mornday he is going to bumb me to the max oral again or the 150mg cytox and 60mg pred. than park me there til JHU. i dont think he believes he cant help me because he would never admitt that but I think he is afraid to under treat me at the same time. If I didnt torrate all this as well as I do or him for that matter things would be much different because I would make them that way.
I hope you get off and are able to function well. That is all of our goals I believe. You know more about all of this than most of us but i am sending a goodwill hug anyway!!

[Sangye]

I have a feeling your doc will do that, too. I also have a feeling that's what JHU will do. That's the typical protocol for very active Wegs. Make sure you take a prescription-strength acid blocker with pred over 15 mg. Pred can cause gastric bleeding--very dangerous.

Thank you for the goodwill hug! Knowing about Wegs is one thing, but getting it to behave is another! I figure even if I can only get my pred down to 2 or 3 mg, it's better than 4.

[onatreetop]

I take Ranitidine 150mgs twice a day. Can that help?

[Sangye]

I wasn't familiar with that name-- it's just Zantac! Yes, that's good, as long as it's prescription-strength and you take it every day.

[onatreetop]

Yes it is. Been taking that for a few years now too. thank you for your continued reasurance and comfort. I think it is bed time the gigglinggirls at our sleepover are getting more quiet. It might be safe now. Thanks again and type to you Sunday if you and I are on line. good night s sleep and pain free waking!!!

[elephant]

Sangye, I just started weaning my prednisone and I'm down to 5 mg a day. Plan to stay there for a month and evaluate ( body check). I wish we had a Star Trek scanner thing and waved it over our bodies and it would beep if there was a WG flare. That would make our live's easier. Hoping for a Happy Sunday and no pain.

[Jack]

I take Ranitidine 150mgs twice a day. Can that help?
That is quite an old drug now. I was much better when I switched to Lansoprazole.

[Sangye]

TOTALLY want the Star Trek scanner thing. But we're getting closer to that type of thing, you know? Ear/forehead temperature probes, pulse oxygen meters, MRI's -- all get info without breaking the skin. (Although I would personally argue that MRI's are not non-invasive)

[Jack]

Scanners are improving too. The hospital I have just been to has a new one which they are very proud of. It is only one of two in the country and can do a complete body CT scan in a few seconds giving higher resolution images and using a lower radiation dose. I wish the MRI I had earlier had been as quick!

[onatreetop]

I am hoping for the same thing.A total body scan. It would be so perventive for major future problems. Things would be caught earlier and treatments would by less needed and costly. Insurance companies would save so much money!!!! Why cant they just do it?

[elephant]

They could do it, we have some really smart people in this world. Just need them to collaborate and work together. It will be a long time to have such a diagnostic tool ( just like the star trek scanner) because look how long it's taking just to try to get world peace! :)

[coffeelover]

I take Ranitidine 150mgs twice a day. Can that help?

I take ranitidine once a day before bed. It helps me.

ANOTHER QUOTE -Pred really depletes me.

I feel that pred depletes me as well. I see my rhuemy Tuesday and will be asking to start to taper from the 10. I am tired of feeling like a blimp and really am feeling fine.
Lisa

[Sangye]

There's not nearly as much money to make from preventing diseases as there is from treating them. That's the bottom line, unfortunately!

[onatreetop]

I know but think about what they would make from finding things they miss too. it could work both ways for everyone. Thepred is getting me to and today I know he is going to bumb me to 60 or say go to the hospital. i am tring to take my husband with me for the first time. We will see if he makes it out of bed or not. Wish me luck!!!

[Doug]

Yeah, neither have I, Phil! I'm sorry to come back to you in distress. The only good thing is you are closer to your appointment time. I agree with elephant that any doctor who doesn't respond to your calls and e-mails is a candidate for replacement (unless, of course, there was a very, very good reason you can accept).

I've been feeling run down because my little furry friend is on this business of waking me up regularly and frequently during the night to let me know he's pretty sure it's kitty feeding time. I could sleep with the door closed, but then I'd have yowling outside my door. As it is, he just jumps up on my bed, near my head, and sticks his little butt as close to my face h=as he can get it. Then he wags his tail across my face until I can ignore him anymore.

[Sangye]

I'm sorry you're feeling so run-down, Doug! Maybe you can ask our other cat owners on the Cat thread what they do!

[Doug]

[Make a catskin hat!]

[pberggren1]

Hi Doug:

My Rheumy did get back to me on Friday and said she tried calling on Wednesday a couple of times but the line was busy. The ANCA results didn't come til Friday and that is what she was mainly waiting for. I am feeling much better than a week ago. I am still coughing up hard chunks from my larynx. The chronic sinus involvement with large mucus production and post nasal drip cause these chunks to form in the larynx. The sinuses are doing much better now with much less mucus, crusting, bleeding. I have a slight tightening feeling in my upper airway - it gets worse when I do some exercises or exert myself with cleaning or something like that. I see my ENT on Friday in town here. My Rheumy also said for future reference that when I have to contact her call the office and leave a detailed message saying that it is urgent.

Now about the kitty problem - don't joke about a catskin hat - I would never dream of something for my Miss Sophia Berggren. Remember Doug - no one owns a cat, they chose us. What is your cats name?

[Doug]

Louie, the Americanized form of Louis, after Louis Armstrong, is my cat's name. 209 His behavior, however, is more like Louis IV, the Sun King! 210! Yet, he looks so sweet sleeping! 211

[Sangye]

Phil, I'm so relieved to find out a) Your rheumy was not ignoring you, b) You have an appt with an ENT this week, and c) Your rheumy told you how to get hold of her quickly.

I'd be surprised if they didn't put on you a high power immunosuppresant (eg cytx or rtx) along with the high dose pred. Pred doesn't get the Wegs under control, it just knocks down the inflammation so that the main drug can work. And, you can't stay at the higher doses of pred for long. Whatever they do, I hope it's easy on you and brings you into a solid remission quickly. :)

[elephant]

Sorry your cat is Keeping you awake Doug! It's like taking care of a baby in the middle of the night. You can rock your cat in the rocking chair and sing lullabies to Louie and feed her cat food.
Phil, having a tight feeling in your upper respitory isn't good. You may need a stronger antibiotic? It's not covering the bacteria? Or it could be the wegener's on top of that? Need to call your doctor to let him/her know about the tightness. Are you on any inhalers? Lung function test?

[pberggren1]

Thanks Guys,

I

[pberggren1]

Lets try this again:

I am not on any inhalers but have an appointment with my Rheumy on the 29th and will ask her about that then as well as the ENT on the 15th and ask them both about seeing a Pulmonologist about a lung function test. The tightness is very mild to say the least. I will have my blood work done again this Friday as well. And You're right Sangye, this still could be WG smoldering away into a larger flare. I will monitor my symptoms with my blood and urine results very closely over the next few days. If anything gets worse I will definitely call my Rheumy. Could this tightness in my uppper airway be Subglotic Stenosis? I don't know anything about Subglotic Stenosis or much about the trachea. Please fill me in.

[Sangye]

It could be SS. Your ENT can check for it. Have you enjoyed a nasal scope yet? (foot-long flexible scope that goes up your nose and down your throat) I get to enjoy it again on Friday.

[elephant]

Is it in your throat or upper chest?

[pberggren1]

I have been scoped 4 times before. I don't mind it at all. Two of the times I was able to see it on a television screen - kinda neat. I wish I had a home version I could use myself. We both get to enjoy the scope on Friday. Yee Ha!!!!! Does SS only show up with active WG? It is a narrowing of the trachea, is it not?

[jola57]

Hopefully it is just a cold gone wrong Phill. Since my christmas cold I am still coughing and just a few days ago started feeling soreness or actualy pain on swallowing. It has eased off a bit now but is still there. I am watching it so it is not something more. You seem to like the scoping or at least don't mind it so good luck.

[timbo vic aust]

i so much hate that scope it is the worst feeling especially when you have to swallow to get the rest of it down furthur YUK .
no solution to the puddy tat doug ? not sure what you can do their . hope all goes well for you next week phil sounds like their on to it now thats a goosd thing . :)

[onatreetop]

I have the pleasure of getting my ENT this week to ad to my set of docs and know that because they want the biopsy that I will most likely get the scope? I kitty, oh the kitty!!!! I had decided as soon as we got them to leave dry food out 24/7. They dont get wet food , not yet anyway. They do get meat scraps once in a while but they only bother us when the bowl is empty.We fill it in the morning and again at night. The deposit box and water the same. They have stopped drinking out of the bowl of water lately and prefer the fish tank water( fishy flavor). Back to the ENT. My RA talked to the ER docs the day I went in and said it sounds like virus sinusitus. They agreed to put me on the z pack which he said yesturday was a joke because the batrim is stronger. I told him about the bleedy nose and bloody mucus and has ordered another round of test and a biopsy of my nose. That is easy to get right? kept the meds the same for now.
If the kitty doesnt let up you will have to tolarate the crying for a few night until he figures it out. Like a child that wont stay in bed. You might have to limit his options and go through those offel nights for a little while. Good luck If the 4 I had did that all the doors would be shut and I would let them have run of the main rooms. Mine have kitty cushions only here and there along with scratching post and small toys. They also sleep in pairs more now or all together when its colder.

[elephant]

Onatreetop, I had so many biopies and clean outs, usually they put you under. Or ithey will really numb you and try to get that flexy scope thing in and grab some tissue/mucous.

[Jack]

I had all my sinus washouts and biopsies just using a local anesthetic paste and it was not too bad.

Remember - if it does not respond to antibiotics, it is probably due to Wegener's.

[onatreetop]

okay. that doesnt sound so bad. i have been thinking about the antibiotics and if they dont work as a flare. that is one of your elbows Jack. thank you. The whole bloody nose is new to me. I have noticed foryears that sometimes it is harder to swallow than others but they throat checked out last time.

[pberggren1]

I called my GP this morning and was able to talk with him on the phone. I told him I had slight tightening or narrowing feeling in my airway and was coughing up hard chunks of dark mucus and sometimes soft bright red mucus and wasn't sure if it was from the sinuses or lungs or bronchial area. He said come in right away and I did. He did a ECG and a lung function test and said both were 100% and sent me for a chest x-ray - he said the x-ray may show some streaking in the upper lungs if there is any involvement like that. He also said to start taking 25mg of pred - he doesn't like to keep anyone on that high dose for any longer that absolutely neccessary - it causes too much damage. He said you have to weigh the risks versus benefits. He said if I was having a full blown flare of WG then it would probably be neccessary to stay on at 50mg for a bit longer. I go in to see him again on Thursday morning to see the x-ray results. I find he is a good GP because he knows my history of WG and how serious it can be and he listens to what I have to say and what I want.

[elephant]

Phil how long have you been on 50mg of prednisone? I would not go from 50 mg to 25mg in one day. Are you tapering it? Sangye could help you on this one.
CT scan of the lung would be better. As you know it will show nodules. For some reason the doctors like to do x-ray first than a CT scan.
I truely think your are having a flare. The reason why I think this is that your coughing chunks and blood, and that your feeling tight in the airway. My feeling on this is very strong. I hope I am wrong. I think you GP is good and that he had you come in right away and checked on you, but he is not a WG specialist.

[pberggren1]

You are right that he is not a WG specialist. I was on 50 for 2 weeks. I know the CT scan gives much more radiation - I don't know the numbers though. I hope you are wrong about the flare. I see the ENT on Friday the 15th and the Rheumy on the 29th. My energy levels are up much more over the last few days and still no joint pain, soreness, or stiffness. I will continue to monitor the situation.

[elephant]

Phil me too, I hope I'm wrong. I'm looking forward to your appointments this month. I'm keeping my finger and toes crossed for you.:)

[Sangye]

Phil, I agree with Elephant. This sure sounds like a serious flare. Your GP has good intentions, but doesn't know Wegs. Even with massive lung hemorrhaging and nodules (not large) my chest x-rays looked pretty normal. They should be doing chest, neck and sinus CTs on you to check for nodules, hemorrhage, granulomas, inflammation, etc...

Why on earth would s/he order an EKG and a lung function test? Neither makes sense given your symptoms.

I also think a jump from 50 mg down to 25 mg all at once is not good, ESPECIALLY if you're flaring and double especially if you're not on another immunosuppressant. That can cause the flare to go wild.

I suggest when you see your ENT that you ask him/her to get you into your rheumy asap.

[Jack]

This is not the time to be reducing the pred!

[Sangye]

I totally agree with you, Jack. Worst possible thing to do, IMO.

[moyan]

Good morning. I have a new question: I sound like an old steamship today, wheezing, could that also be WG?

[Sangye]

Is that a new symptom, Moyan?

Wheezing can be asthma or a sign of tracheal stenosis (aka subglottal stenosis/ SS). Wegs can cause SS.

[moyan]

It is not a new symptom, have had it for a few years and it makes me think that I have had WG for a few years. Not asthma, would be more frequent. I'll see the "specialist" today and talk stenosis. My constant mucus in the throat has got me thinking since I started reading here. Thank you for being here, Sangye

[jola57]

Phil, my pulmonologist had me do EKG, spiro test and lung capacity test when I was spitting blood, but also a CT which showed the dreaded granulomas in my lungs, after 3 months of cyto they were gone and I was back to normal. BUT I was on cyclo for a full year this time. Last time I was on 6 months and went into flare just after 3 weeks. As bad as cyclo st it is better that a full fledged flare. This is where I disagree and thi nk that being on cyclo is needed for as long as the bloodwork and self feeling is bad, when it gets better stay on cyclo to make sure that all is well and truly better and then slowly and concurently go onto mtx or something else. This is what I did this time and it is working so far.

[snooz23]

Moyan, I am also experiencing the constant mucous in my throat. I actually have for years. However when I was on high dosages of pred. it went away. When I dropped to around 15, it has returned full force! I am currently at 12.5, tapering 2.5 every 2 weeks until I hit 10 at which point I will reduce by 1mg/two weeks. However, I may make the suggestion I have seen here and go 1mg per month? I'll have to evaluate (possibly using Sangye's brilliant evaluating system--I like that). Anyone else experience the constant mucous in the throat?

[moyan]

Hi, had an appointment with a doc today and he said to see an ENT since it is often drippings from the sinus!

[onatreetop]

I have have been dealing with bad post nasal drip and mucus in my throat since...well I can remember. The only time it was better was when I took allergra D. But cant since the WG and high blood pressure. I had my catscan do Tuesday of sinus, lungs and angiogram. Still waiting for result. The sinus pressure has never gone away fully. And now I have a new symtom, In the inside of my nose where the cartlidge is that runs down the middle white bumps like pimples almost but not? Is this this the famous crusting starting? Cant wait to meet the ENT and get my but to JHU. the mucas thing has always had me clearingmy throat. i am not able to get mucas out anyway but the nose. No spitting like a cowboy here . just never worked out that way its the nose or it stays.

[moyan]

Thanks, now I know, that when I sniffle you do too and misery loves company :) I will see an ENT also, another doc for my collection. About my "infection" in the foot there are different opinions so I will just watch it and hope my long time advice to myself will work :ignore it and it will go away.
Best of everything to you!

[elephant]

I always had nasal sinus crap/drip. It is on/off for me, I noticed when I was on high dose of Prednisone, no nasal drip or going to the back of my throat. Now that I am on 5 mg more of a nasal thing going on. I see a ENT in charleston,SC in Feb, so I will get checked ( scoped again).

[onatreetop]

Lets sniff together Now!!!!! How is your foot doing? i recently lost a nail that I dont remember slaming. My Ra want s Emgs ? Done? I think thats whatit is that means New Neorlogist.

[Doug]

i so much hate that scope it is the worst feeling especially when you have to swallow to get the rest of it down furthur YUK .
no solution to the puddy tat doug ? not sure what you can do their . hope all goes well for you next week phil sounds like their on to it now thats a goosd thing . :)

Actually, I found that Louie gives up rather easily if I just ignore him. Typically, he'll stretch out next to me and just rest/sleep for a few minutes, then leave when I do ignopre him. The hardest thing to ignore is him twitching his tail in my face! Ha! It did concern me that I wasn't sleeping well, of course, because I worried fatigue over a long time would make me suseptable to respiratory infections or worse. I don't know what triggers a flare (other than suspected triggers), but it seems infection is implicated on some lists, as is stress, which fatigue, of course places on the body.

[Doug]

Hi, had an appointment with a doc today and he said to see an ENT since it is often drippings from the sinus!

You may have this condition after you achieve remission or that "New Normal" stage as well. It won't be as bad, the "fluid" will be clear as long as you don't have infections, and you just deal with it. I have this post-flare condition.

[Jack]

I know that everyone's case is different, but I went through over a year of the most horrendous nose/sinus problems before diagnosis (massive bleeds, plugs of solid mucus as big as a finger and lots of pain), but it all went away during the first few weeks of being treated for Weg's. However, my treatment was much more agressive than that used today. I was in hospital for two months and received IV cyclophosphamide and steroids plus plasmapheresis. The symptoms only came back again during a flare.

[pberggren1]

I have mucus all the time. It is usually a punch line in most of my jokes.

[pberggren1]

Had my ENT appointment this afternoon. Had a good visit with him. Everything went well. He did a scope and everything was good. Told him I wouldn't have the tearduct surgery again unless I really needed it - he agreed. Told him my CXR was good from Tuesday. If everything goes good I'll see him again in the fall.

[elephant]

Glad everything went well for you Phil!

[cutecats2]

i wouldnt at this point .. it really plays with you .. or just call the doc and see .. before the apointment ..

[moyan]

Thanks to all you encouraging naggers. Had a great appointment with my GP and now in progress: Apps with ENT, Rheumy and plastic surgeon to see if something can be done about the hole where the toe was. Been 2 years so....Mon is infection specialist so I am really on the move thanks to all of you, Andrew not the least for organizing this site. Sangye, I brought the e-mailaddress for Vasculitis center and doc really appreciated that.
A good day when I most needed it!!

[elephant]

So gald you had a great day. Like I say one day at a time and one task at a time. We will all get there to see the rainbow with a pot of blueberry muffins.

[Sangye]

Yeah, Weggies ALWAYS celebrate with food!!! So glad to hear you're making progress, Moyan.

[pberggren1]

Well I saw my Rheumy on Friday. She figures that I have a sinus infection and that taking the Bactrim every day versus every other day should do the trick in fighting off further infections. My ANCA from last week was only 11 and she said that infections can make it rise like that.

[Jack]

I hope she is right, but it all sounds so familiar.

Personally I doubt that increasing the Bactrim will have any effect, but I am indulging in a little diagnosis via internet here! I take Bactrim myself every day and it has been helpful in keeping most of the infections down, but it is an old antibiotic and there are a lot of resistant bugs out there. When I get a difficult one, I have to change to a different antibiotic for a while.

[elephant]

Jack how much prednisone are you on now? Was wondering how your ears are feeling after bumping up the Prednisone to 10 mg. How long did it take for your ears to feel better?

[elephant]

Phil, I hope it is an infection. Hope you feel well. I feel a little nag coming on, but I am going to hold my breath! ;)

[Jack]

Within a couple of weeks of going back to 10 mg all the pain I was starting to experience in my ears went away, unfortunately the deafness and tinitus did not. I have the feeling that an even bigger dose might improve things further, but I don't want to go there. I'm now resigned to the fact that 10 mg of pred is as low as I'm going to be able to go. It is the dose I have been taking for the past 10 years. Before that I was on 5 mg for quite a while, but more during flares.

[elephant]

Thanks Jack. I am hoping this will work for me too. I still have really bad ringing in my ears. I may need another hearing test. I will almost be a week since I have been on 10 mg of prednisone. Hoping to get my culture results from the ENT ( scoped /swabbed my left maxillary) today. One day at a time.

[Alysia]

I have been scoped 4 times before. I don't mind it at all. Two of the times I was able to see it on a television screen - kinda neat. I wish I had a home version I could use myself. We both get to enjoy the scope on Friday. Yee Ha!!!!!

my sweet Dr. Phil in his early days of "graduation" to be a wg expert....
with all the issues we are dealing with, flare or not, others, how much pred, bad docs, etc.
as I know him, I think he was flaring. that rheumy knew nothing. he had all the signs of his flaring: joints, fatigue, sinus, mucous, etc.
its amazing, in those days his lungs were still functioning 100 percent. hard to grasp how fast they deteriorated.

and his great sense of humor is there all the time...

I miss my dr. Phil so much. the Forum is not the same without him.... my world is so sad and dark without him....
endless tears....

[mishb]

It's good to re-read the old posts.

Phil was definitely just learning the ropes in those days and was going to others for help.
He then became one of the ones to offer new people advice, much the same as what he was given by some amazing people.

It's also sad to see this thread when you think of the people that have now passed away :crying:

There are also some people that haven't posted on here for such a long time, but we know they are okay

Thanks Alysia for bringing this thread up.