PDA

View Full Version : My Situation



FallGirl
08-06-2009, 01:23 PM
I've been really stressed out lately and I want to write up my situation and see if you guys can help me out with some advice.
Right now I'm taking 4 5mg Prednisone pills a day and twice a day I take a 50mg Imuran pill. I started with 9 of the 5mg Prednisone and had to decrease by one pill every 2 weeks. I started with 1 50mg imuran and after 2 weeks I went up to taking the 50mg pill twice daily. Every 2 weeks I get a blood test done and the results are sent to my GP and the Rheumatologist. I had an appointment to see the Rheumatologist at the beginning of July but it was just days after I moved to a new house so the appointment was rescheduled for September 1st. Meanwhile I was supposed to be lowering the Prednisone every 2 weeks and by September 1st it would be lowered to nothing if I was lowering it 5mg or 1 pill at a time. Still I haven't heard anything from the Rheumatologist about what I'm supposed to do so right now I've stuck to taking 4 pills (20mg) of Prednisone and the 2 pills (100mg) of Imuran.
I went to see my GP today and he told me that me blood test results have been fine. Nothing out of the ordinary except for a bit of a high white blood cell count which he says has to do with my taking the Prednisone so it's normal.
My Rheumatologist, who I've only seen once since I've been diagnosed with Wegeners, is trying to get me off the Prednisone in 6 months he told me. This appointment I was supposed to have in July we were going to talk about where to go with the medication the dosages I had every were to last up until that appointment and then we'd see.
So I don't really understand the difference between Imuran and Prednisone. I don't understand if I can be off the Prednisone and just taking Imuran. It's been a few months since I started on medication for the Wegeners, I feel like this is being rushed.

I have this major frustration with my Father because he won't listen to me when I tell him things that I've read on here from you guys. It's like he tells me you guys don't know my situation and everyones is different and I understand that. And I want to believe the Rheumatologist knows what he's talking about but the fact that I haven't heard from him. And I tell my Father that I want to talk to this guy before September 1st. But now I'm just going to stay on the dosage I've been taking for almost 3 weeks and wait to talk to the Rheumatologist on the day of my appointment. And I can't call him myself, I have social anxiety, it's very hard for me to pick up a phone and talk to people, it's this whole big issue so he talks to doctors for me and makes appointments and whatever I need.

I'm having alot of trouble articulating what I'm trying to say right now so I'm going to post this for now and I'll have to post again.

Jack
08-06-2009, 04:44 PM
Fallgirl,
That was a great post, you expressed yourself very well and I can understand your frustration and confusion over the medication. Perhaps a more understanding doctor would have explained things better and put your mind at rest.

It sounds like your condition is progressing just fine at the moment, but things need to progress slowly because this disease has a habbit of turning round on you. The best indicator is how you feel rather than blood test results. Keep in touch with your body!

In simple terms, Wegener's causes your immune system to attack your body and cause inflamation in the same way that an infection does. For this reason the treatment attacks it on two fronts - the Imuran suppresses part of your immune system, while the Prednisolone is mainly there to stop the inflamation and subsequent damage. Both of these drugs have long term side effects which is why the docs want to get you off them as soon as you are able to cope without.
The usual regime is to switch you from Imuran to a less toxic alternative as your treatment progresses and at the same time to lower your steroid dose. If you reach full remision, which sounds possible in your case, you may end up dropping most of your medication altogether.

I think you should be seeing your specialist a bit more frequently. I moved from weekly visits to the three month visits that I am now on and I was diagnosed nearly 25 years ago!

GeorgiaInOhio
08-06-2009, 07:15 PM
I see my PCP once a month, and go in anytime I feel strange or even have questions. I see my specialists at least once a month between all of them, and my cardiologist even calls to check up on me. I feel lucky having such great doctors and when I read peoples posts where there doctors just seem to blow them off, it really upsets me. I even feel guilty that I had the luck I did in finding the people that I did to help with WG. But Im greatful.

my advice to you is trust your gut instincts. Just like jack said, you have to know your body and go by that. Same goes with your thoughts. If you believe you need to see the doctor sooner, you need to do it. I have a friend with social anxiety and she has been working on it for a long time. she has improved dramatically by finding a way to face her fears and just do what she has to do. i know that is easier said than done, but (and your going to think im crazy when i say this) one thing that helped her ease the stress of talking to people, was when the fears started coming to her, telling her that she couldnt do it, didnt want to deal with having to talk to someone, she started hearing those in a donald duck voice. yes, i told you youd think I was crazy. but i used to have anxiety attacks, and I tried it, and let me tell you, i have only had one anxiety attack in 6 months and I instantly new how to put it to rest. It actually happened when i was in the hospital finding out about my WG. Lets just say when you tell yourself in your head, in a donald duck voice, "oh my god, your going to die. how can you do this? everything is falling apart, your gonna lose it!" it shuts off that since to freak out like you wouldnt believe!

I am not saying this works for everyone, and i know it sounds like the dumbest thing ever, but it works, and it gets rid of anxiety like i have never had anything work before. people with anxiety im sure know what i mean when i say "voice". im not nuts, not a sychitso (sp?), but you know what i mean. Im only saying all this because i think it would help you start being more in control of your situation and be able to take on more responsibility so your father wouldnt have too. I now this is a huge change for my family and its stressful for everyone, and even tho they mean well, you are the one who knows whats best for you. Its also very impowering to know you are the one who took control of the situation and got it taken care of! That helps with mental healing too! all over well being is the key! It cant hurt to try. and if it doesnt work, well then youve at least tried something new. lol. I just know you need to listen to yourself. trust your instinct, and if you feel like you need to do something, do it.

its great you posted, and could get your thoughts out. thats a huge step right there. everyone suggested when i joined the group to start a journal, and that really helps too. just getting your thoughts out on paper- youd be amazed how that helps with anxiety on a personal level. try that and see if it settles your mind a bit too. you dont need depression. every little bit of venting helps, so keep posting as well! everyone here is so nice and has made me feel very welcomed.

sorry i dont have more advice, and only crazy donald duck talk. LOL. I hope it helps though. I know it did for me and my friend.

Take care

Sangye
08-06-2009, 11:56 PM
Hi Ami,
I admire your courage in reaching out like you have. I hope you'll give yourself credit for having done it. You articulated everything just fine!

I wonder if any of your docs have explained how pred exacerbates anxiety. I hope you are seeking help for treating it. You deserve to have all the help you need.

Are you seeing a Wegs specialist? (Not just a rheumy, but someone who sees Wegs all the time) If so, then you can trust the rate that they're lowering the drugs. If not, I encourage you to find one and at least be able to rest your mind about that.

It's important to listen to your body the way you are. If you feel you need an appointment sooner, please know that it is perfectly alright to request one. Wegs can surprise even the most skilled doctor, because it seems to have a mind of its own. A good doctor will address your concerns.

I imagine interacting with the doctor at appointments might be very stressful for you. One thing you can do to help is to write down your questions and concerns ahead of time. If it's overly stressful to ask them out loud, hand them to your doc and ask him/her to address each one. You can bring a tape recorder and record the answers, too. That way, you know your questions and his/her answers are taken care of, and you don't have to be "on." Take good care of yourself, Ami. :)

coffeelover
08-10-2009, 12:32 AM
I am so happy, and I am sure I speak for all of us here that you found us Fall Girl! Your post was very well articulated and I hope you use all of these very informative people on this site to help you understand this WG and to help you move forward with your recovery.
As Far as Anxiety, it does get difficult and I found, annoying, to continue to explain yourself to the docs you end up seeing. I eventually got to the point where I do not even wait for the doc to talk to me, I talk to him/her. I figure I am the one with this chronic disease and I would not wish this on my enemy, so I and I alone know what I need and want. It is OK for the Doc to suggest alternatives, but they DO need to be able to keep you involved in your decision making and they must understand that you are not visiting them on a whim!
My rheumy put me on the trazadone to help me with my sleeping, but also with my anxiety. Also my BP meds have helped, I believe. So it takes times and drugs to get things under control. I really hope you overcome your anxiety and are able to take charge of your life. Please do not be afraid to ask for help.
Lisa coffeelover

Doug
08-12-2009, 01:27 AM
I am so happy, and I am sure I speak for all of us here that you found us Fall Girl! Your post was very well articulated and I hope you use all of these very informative people on this site to help you understand this WG and to help you move forward with your recovery.
As Far as Anxiety, it does get difficult and I found, annoying, to continue to explain yourself to the docs you end up seeing. I eventually got to the point where I do not even wait for the doc to talk to me, I talk to him/her. I figure I am the one with this chronic disease and I would not wish this on my enemy, so I and I alone know what I need and want. It is OK for the Doc to suggest alternatives, but they DO need to be able to keep you involved in your decision making and they must understand that you are not visiting them on a whim!
My rheumy put me on the trazadone to help me with my sleeping, but also with my anxiety. Also my BP meds have helped, I believe. So it takes times and drugs to get things under control. I really hope you overcome your anxiety and are able to take charge of your life. Please do not be afraid to ask for help.
Lisa coffeelover

Exactly! We preach and preach and preach about preparing for your doctor's visits by research, by maintaining a journal of symptoms and reactions to drugs (and questions for the doctor!). The best doctors are good listeners who answer your questions fully, with all the information you need to know. One advantage of research is that you become familiar with medical terms, so you are speaking in language that is specific and meaningful to your doctor. It also speeds up your doctor visit.

jola57
08-12-2009, 06:54 AM
Well put Doug

Jack
08-12-2009, 07:47 AM
But unfortunately, many people are not in a position to take up the good advice for a variety of reasons. :(

coffeelover
08-12-2009, 11:37 AM
for me that reason is denial......

jola57
08-12-2009, 04:09 PM
I wouldn't say that of you Lisa at all, here you are discussing all your and our symptoms so I don't think its denial maybe lack of trust in the caregivers to do something about your hurts when you let them know.

Jack
08-12-2009, 06:06 PM
Yes. Coffeelover's reply confused me too.:confused:

Sangye
08-13-2009, 12:20 AM
I thought I understood it, but now I'm questioning myself! Lisa, please help!

FallGirl
08-14-2009, 04:12 PM
Seems like I should've replied ages ago but, thanks for the replies everyone.
I think I'm scared and that's why I'm so conflicted about my meds and everything. I look forward to my appointment on September 1st because I'm hoping the Doctor can answer some of my questions and explain some things so I feel more at ease.
Thank you, Georgia, for what you wrote as well. :)

Jack
08-14-2009, 07:07 PM
I think I'm scared
Join the club!
You have every right to be scared because it is a scary situation. However, as time goes by, you gain knowledge and that helps. Some of the knowledge gained won't be very pleasant and you just have to come to terms with these things. Just keep looking for the good things that you still have and try not to dwell on the things lost. It is a bit like a grieving process - regret the loss by all means, but hope that there are good things still to come. :)

Doug
08-15-2009, 09:56 AM
Join the club!
You have every right to be scared because it is a scary situation. However, as time goes by, you gain knowledge and that helps. Some of the knowledge gained won't be very pleasant and you just have to come to terms with these things. Just keep looking for the good things that you still have and try not to dwell on the things lost. It is a bit like a grieving process - regret the loss by all means, but hope that there are good things still to come. :)


A perfect perspective!

jola57
08-16-2009, 01:39 AM
Jack I would even put instead of hope - know -. Well put.

coffeelover
08-16-2009, 04:05 AM
Sorry for the late reply on my "confusing denial" reply. All I meant was that once I start to experience some WG symptom, I still go into some denial. For example, if I am more tired than normal, logically I know I should stop and rest, but I tend to think I am healthy and I push myself to the brink of exhaustion. Then I end up feeling bad for a few days more than I would if I had taken care of myself and slowed down sooner.

This little explaination seems even more complicated and confusing, but I hope you get my meaning.

I know I have this disease and I am feeling pretty good most of the time right now. WG only affected my airway and sinuses. I have ben struggling with these same symtoms for years and so if something new pops up I ignore it for a while "hoping" it will go away. Silly huh?

That is all I meant
coffee needed

Jack
08-16-2009, 04:07 AM
That all sounds pretty normal to me.

Doug
08-16-2009, 06:02 AM
Sorry for the late reply on my "confusing denial" reply. All I meant was that once I start to experience some WG symptom, I still go into some denial. For example, if I am more tired than normal, logically I know I should stop and rest, but I tend to think I am healthy and I push myself to the brink of exhaustion. Then I end up feeling bad for a few days more than I would if I had taken care of myself and slowed down sooner.

This little explaination seems even more complicated and confusing, but I hope you get my meaning.

I know I have this disease and I am feeling pretty good most of the time right now. WG only affected my airway and sinuses. I have ben struggling with these same symtoms for years and so if something new pops up I ignore it for a while "hoping" it will go away. Silly huh?

That is all I meant
coffee needed

Not to squeal on you, Lisa, but Dennis Coffeelover and I talked about that very thing when you were walking around Carhenge with the dogs. That's why I talked with you about that very thing when you and the dogs got back to the parking lot. I hope you've come to grips with the realities of the "new normal" now. You were doing great on your vacation, and I hope that continues so your husband and kids can stop worrying about you over-doing it. I think you are especially lucky in that Dennis understands you need to slow down sometimes. He's a great guy!

Sangye
08-16-2009, 08:43 AM
I sympathize with you, Lisa. I have been so limited for so long, that when I do feel a bit better I just want to throw off the chains and DO something.

The worst part is, it isn't always evident until I'm crashing that I've done too much. I might have warning signs, but not always. Many times it's like someone pulled the rug out from under me--I crash all of a sudden.

Doug
08-17-2009, 07:03 AM
Several times (:pLisa- don't be reading now because now I'm telling on me!) I learned I'd overdone it by taking literal falls:mad:. Fortunately, I never hurt myself much, but I also kept the fact that I took a tumble away from family and my boss( when I was working). I'm much better:D about that now because I rarely overdo it. That doesn't sound quite right: I'm active again, but I watch myself for signs my right foot's going out on me. That's the one with the neurapathy, and it tends to roll under when I'm fatigued.

Cindy M
08-17-2009, 12:14 PM
Hi FallGirl. I also live in Edmonton. I see my rhuemy and ENT at the U of A. I also see an Opthamologist. I see my rhuemy once a month and the ENT every 2 months. Jack is right in listening to your body. I went down to fast with my preds and have had a big set back. I didn't listen to my body and instead of making an appointment when I started feeling worse and my symptons increased I decided to wait the 2 to 3 weeks (I know a long time) for my next appointment with my Rhuemy and by then or even before then my eyesight started to deteriorate and I was having severe headaches and eye pain.

firecracker
08-18-2009, 08:22 AM
and then there is me. the one that had some docs throw up their hands.. having no clue what is wrong with me and the other half saying i have wg without any supporting biopsys, blood test, urine test. only destruction of the inside of my nose. That is all. The newest ENT thinks that maybe i dont have wg at all. that maybe it was the fusarium mold that did all this damage. My newest rheumotologist said, in May after I told him I refuse to take the methotrexate anymore because I cant work being so sick from it 4 days a week which was getting worse and worse each month, that he is not sure if i have wg and asked who diagnosed me and why. I said "so you just kept me on methotrexate from october when i first came here after the mayo clinic until now because some other doctor was treating me with it?" He just kept saying, "I wouldnt have treated you for it based on my findings." i am doing much better off the methotrexate. I have been tapering off the prednisone for 5 weeks. I am down to 5mg one day and zero the next. My blood work all went back into range except my platelets (high as always) and hemoglobin (low as always). I have seen probably over 30 or so doctors and am fed up. but my point is....if you go to a doctor and they blow you off or diagnose you saying YOU HAVE THIS. ask them why and how. there is no 100% for sure diagnosis for wegeners. its clinical. there are plenty that have c anca with the positive mpo and pr3 counts, biopsys that come back consistant with wg and destruction in lungs, sinuses, kidneys and skin but there are plenty like me that have one place of destruction, iffy blood test results that really are not definite enough and many other issues that could have caused the destruction in my nose, and biopsys that are not consistant with wg. I have no clue if I have it or not. I have been extremely confused and had many anxiety attacks from being fed up with so many things. the good thing to know is... as I think it was Jack said... its been 25 years since he was diagnosed and he is still around so take one thing at a time and remember when you feel crazy.. its just the prednisone. dont let a doctor or anyone make you think you are crazy or make you feel like you are bothering them by asking questions. definitely write your questions.. every one of them down bc i know i would forget every one of them every time i went to the appts. i have been on methotrexate from sept 2008 until may2009 when i decided to stop it and went to the doc to ask him how to stop taking it so it didnt mess up and shock my system and still on the prednisone but tapering off of it. i have one week left. I am feeling much less crazy now and thank god my mood swings are lessening. i felt like a raging maniac on the 20mg a day prednisone. be strong and know you have a lot of support here. by the way.. thank you everyone that emailed me when i first joined. I was then forced back to work and was not able to post anything or respond to most of the emails. I really appreciate you all making me feel like i had some friends that didnt think i was crazy. lol.

Sangye
08-18-2009, 08:37 AM
No one here would think you're crazy! Yours is a very frustrating case, for sure. I don't remember if you've ever seen a vasculitis specialist, but you really should consider that. Otherwise, you'll just get bounced around by doctors who don't really know. Mayo Clinic in Florida has great Wegs specialists.

The fact that your hemoglobin remains low is a concern. Have your doctors explored why you're still anemic? You may be feeling better being off metho, but it doesn't mean the disease is better under control. Hard to say.

Your statement "There is no 100% for sure diagnosis for wegeners" is not true, however. It's just that not everyone has a (+) ANCA or (+) biopsy.

Bottom line : Something is causing destruction of your nose. You have to find out what it is, because anything that will do that is potentially life-threatening.

firecracker
08-18-2009, 09:17 AM
The destruction stopped a couple years ago. At least it did up until I started the methotrexate. Once i was on that, the destruction started up for about two months then stopped again. Last year I had a horrible fusarium infection in my sinuses, throat, lungs, skin and just about everywhere. I took voriconazole for five and half months and i finally beat it. my lungs no longer have whatever it was they were seeing in there. nodule type things that they now think were the mold. my skin cleared up in about three days for the most part after starting the vphen too. I had sinus surgery which made me finally be able to breath through my nose but the damage done, the ent says looks like fungal damage but in some places he is just not sure. i have not seen a vasculitis specialists but all i can say is i cant take these meds and keep my job. i am two steps away from getting fired from my job. i had to threaten the media in order to get an unpaid leave of absence last year while i was on the methotrexate. The docs just either are insistant that i have wg or they are very confused. I fit some of the symptoms but so do the other diagnoses I could possibly have. I am going to see how I do off the prednisone. I am allergic to mold and its rainy season here in florida so its hard to tell if its mold bothering me. considering my bad days are only when it rains, it makes me think its an allergic reaction. I use antibacterial, antifunal and steroid rinses which were recently changed to a nebulizer. i used it today for the first time with the steroid since i couldnt go to work because my right sinus is hurting so bad. it tries to close up constantly from the "stuff" that comes out of the top sinus. Then turns into black rubberlike stuff. its insane. and makes me feel that way too. when i get this, i feel very weird, sick, dizzy, and i actually see like .. hallucination like stuff. i had optic neuritis a few years ago and its like that. kind of like tv static moving around a lot at night. it goes away when that stuff goes away. i had this when i had the fusarium infection too. they say from the toxic stuff mold gives off in your body. im just lost sometimes. im going to see how my blood work comes back from last thursday and go from there. i just cant stand to take the meds. i hate them

Jack
08-18-2009, 05:57 PM
Firecracker,
I think you urgently need to get in touch with a specialist who can diagnose your condition. The right person and the right tests can do this.
If it turns out that you do have Wegener's, it sounds very much like it is not fully under control, in which case a flare up could kill you without you even being aware that you were in deep trouble. This happened to me - renal failure gave me no additional symptoms that I was aware of over the ones I already had, but if I had not been diagnosed, I would have only had days left.

Sangye
08-18-2009, 11:51 PM
Well put, Jack. I agree 100%. Even though you've been to 30 doctors, you have to keep looking for a true specialist. I saw in another post that you had some success with Mayo, but you didn't want to stay on the drugs. Methotrexate is not the only drug, though any of them might make you feel lousy. That's often unavoidable until you get things under control.

firecracker
08-19-2009, 06:29 AM
Well put, Jack. I agree 100%. Even though you've been to 30 doctors, you have to keep looking for a true specialist. I saw in another post that you had some success with Mayo, but you didn't want to stay on the drugs. Methotrexate is not the only drug, though any of them might make you feel lousy. That's often unavoidable until you get things under control.

Basically, seeing all these different doctors was because nobody could get any answers from any tests to come back with a good answer. I have had multiple and I mean I have had biopsys taken about 8 or so taken and sent all over the place. To the mayo clinic, oklahoma, new mexico, st josephs hospital where some were taken during surgery, and some other places which I cant remember all their names without getting out my records, that all agreed that the biospys are not consistant with wegeners. The Mayo clinic diagnosed me with wegeners because after 19 viles of blood taken, they got a positive c anca, pr3 and mpo. all positive. My platelets were over 1200 at that time. I was completely iron deficient which finally made sense as to why the fusarium was able to invade my body and almost kill me. The problems I am running into right now are... for one, my job. I am two steps from being fired. They dont care if I am sick. I ran out of fmla, short term, leave of absence and i dont have long term disability because nobody at my job advised me that it was the only thing they were not providing us with. I cant try to find some more doctors to find. Id say half said I could have wegeners. They all also hinted or flat out said they thought I just did drugs and picked my skin to make sores like I had. I even had drug tests in my records showing I was negative for the "industrial strength cocaine" they thought I must be using to look like this inside my nose. I definitely understand both of your concerns about thinking I am fine when I could be the complete opposite but it comes down to, I was getting too sick to work on the chemo pills and I was only on 17.5 mg of methotrexate and 20mg prednisone. I was getting to the point that I had a dry cough, getting sores all of the sudden that were different. more like ulcers then the normal sores I had when I had the mold issue. I also suddenly, after 7 mths on the methotrexate, lost half of my hair from the roots and the rest of it broke off about 6 inches up. The rheum. agreed with these being symptoms of toxicity from it and I could not work because of the constant throwing up and they wouldnt excuse me from work or even work with me. I cant afford to pay my bills unless i work where I work since there are no jobs out there and def none that over pay their employees and give insurance for free. I need the job even more for the insurance then the money. I could resort to living with my parents. I hope it makes you feel better to know that I do continue to see my rheum, ent, pain management, and lung doc regularly. esp the first three monthly. I get blood pulled monthly which also includes urine, kidney, and liver testing. All are totally fine except platelets and hemoglobin. I do not absorb iron so I have to get iron by iv every 6 to 12 months. The one consistant thing I do notice is on a monthly basis, along with having my period, what comes with it is the clogging up of the right sinus and the black rubber like stuff. every month like clockwork. swelling in my face on the right and massive pain. it then goes away like clockwork a week later. I am about to start one of those pills that makes me skip the girl time of the month for months at a time to see if its the hormone drop that makes my sinus get this way or if its the massive amounts of sugar I eat. I got another ct scan today of my sinuses so Ill get those results in a couple weeks. I have the cd so of course I will be looking at it and comparing to all my films at home. Do any of you get this sinus issue like I do? The rubberlike stuff that comes out of the inside of it. its def not destruction or i would be surely dead by now. I try to find information online about wegeners symptoms.. like real stuff... pics or descriptions of sinus and skin issues. I cant find much but "blisters" or other vague type descriptions. My sores have been called warts many times. They look nothing like warts. They look like caluses. They always have a black speck in them way down deep that pulls like string almost. sounds more like the disease they call the crazy people disease morgellons. Im just at the giving up point where I just am thinking.. if i dont think about it all... it will go away. i know that is not the right thing to do but i am beyond over all of this stuff. Sorry for the enormously long responses.

Jack
08-19-2009, 07:44 AM
Sounds like you are doing all you can and "just" have wacky symptoms. We obviously can't give a diagnosis by internet, but in my own case, my sinus and nasal problems were constant and consisted of lots of bleeding and total blockage with mucus crusting plus lots of pain of course. My skin problems were blood blisters, calluses and wart like things. These seemed to be worse around the area of my joints especially on my hands.

The problem with Wegener's is that everyone seems to have their own unique set of symptoms. :(

The most reliable diagnostic tool is biopsy from the affected parts, but it seems that even this has not produced a conclusive result in your case.

Sorry I can't be of any more help, but please continue to post. We are always here to listen if nothing else.

Sangye
08-19-2009, 08:15 AM
Firecracker, I can't address if you have Wegs or not. But I can help you connect a few dots. If you're eating massive amounts of sugar, you have massive yeast overgrowth throughout your body. Sugar causes the yeast overgrowth, and then the yeast increases your craving for more sugar.

Eating sugar all the time also creates hormone imbalances. Those hormone imbalances get much bigger during your period-- weakening your body more. So any illness symptoms will be increased at that time. The worst thing to do is mess with your hormones even more by taking a pill to skip your periods. It will push your imbalance in the exact wrong direction. You have to start cutting back on the sugar and get yourself down to a very low amount. If that sounds like something you're interested in, I can give you some pointers.

firecracker
08-19-2009, 08:25 AM
Thanks for the descriptions. I have had so many cultures sent out too from my sinuses and as a lab tech says on some site I read, and so does my ENT, they almost always come back negative for anything because what the lab gets is normally already dead. I have what the ENT said could be dead tissue from inside my sinus and nose that comes out all day long every day. Obviously not or i would have no tissue left at all. There is no way the body can produce tissue fast enough for the amount that I have come out daily. I normally go through a box of 216 tissues a day but last year I was going through two to three boxes. I get some that are hyphae like and showed pics to the ENT. He says looks like overgrown bacteria or fungus. He has been treating wegeners and fungal infections as his specialty and seems to know a lot more then any other doctor i have seen. Even the mayo doc seemed to know a lot but still had not heard of some of the stuff I had read about. I think I am going to see how my blood work comes back along with how my nose and body feels. I know it cant always the best way to tell if there is something else going on but I can say that I am extremely observant .. almost to a ocd type way of everything that goes on with my body and I actually told my rheumatologist to do the blood work this month. He was actually going to have me taper off the prednisone and come back in 6 weeks without any blood being pulled. I said I would feel a lot better if he would have that done along with the urine and all to see how my numbers do as I get off this medication. The prednisone and mainly the methotrexate already made my bones "geriatric". They want me to take something for them. I do not like the chance of rotting effect they have a possibility of causing. I am one of those people that is allergic to a ton of things and get the rare side effects. I was one that dapsone put in the hospital because my oxygen level was 91 and under. I was turning blue all the time from it. All of this stuff just makes me so frustrated but thanks all for your responses. I still would really like to hear some more descriptions of sinus and skin issues. Jack, yours sounds somewhat like mine. The creepy sinus stuff I have just makes me nuts.

firecracker
08-19-2009, 08:28 AM
I def saw how smoking effected my sinuses and quit that. Sugar however, i dont think i could quit. The reason I want to start the pill, this particuliar one is my friend had the headaches with her periods and the massive emotional disasters just like I have and hers stopped with this particuliar pill. Not having the massive cravings and hormone drops, I think will help me in a lot of ways. I guess I will see. I cant start it til I get off the prednisone which the 25th is the last day unless the bloodwork is bad.

Sangye
08-19-2009, 08:34 AM
Migraines and mood swings are a classic sign of progesterone deficiency. You might mask that with synthetic hormones for a short time, but the long-term effects (eg, significantly higher rate of early-onset/aggressive breast and ovarian cancer, blood clots) are much worse. You say you want to avoid other drugs because you're allergic and sensitive to them, yet you want to go on synthetic hormones? I don't follow your logic. BUT I do hope it works out well for you at any rate. Keep posting and let us know how it goes.

firecracker
08-19-2009, 08:45 AM
I think my logic is feel good for now and deal with the rest later. I cant stand the meds that make me sick. I have been sick for so long and migraines, I have had my whole life and now have this making it worse. The meds for wegeners make me constantly get mold and bacterial infections in my nose and make me sick as crap. i just want to live better for awhile. I mean, if i get really sick and its pointing to wg then ill suck it up and take the meds. i just cant deal with taking them and losing my job, my house, everything and living with my parents because of all of that. If I miss work two more times, I am gone. no health insurance, no $27 an hour job, then the domino effect. Thanks for telling me about the pill doing the opposite. I didnt see that part of your post so I will ask my doc more about it. Thing is, not one of the docs told me to quit taking the pill when i started the treatment for wg. I found out from a yaz commercial and the internet interaction checker that i needed to stop it so im not real trusting of the docs at all.

Sangye
08-19-2009, 08:54 AM
Don't count on your docs to understand progesterone deficiency. A good place to read about it is Dr John Lee's website (http://www.johnleemd.com/). He wrote the book on it. (All the books, actually.)

I imagine none of your docs has told you that people with Wegs are 24% more likely to develop blood clots. Synthetic hormones are known to cause them (says it right on the box). So your risk is seriously increased.

Even though I never used synthetic hormones (and actually had very good hormone balance at the time), I developed an uncountable number of blood clots in my legs and lungs all at once on my third day of treating Wegs. It's caused a lot of damage, and I'll have to stay on blood thinners for life. It's a miracle none went to my heart or brain.

Jack
08-19-2009, 05:15 PM
I had huge problems with my nose and sinuses before being diagnosed (resulting in some radical, but unnecessary surgery). You say that all the cultures sent away come back negative? They will if you have Wegener's! The disease presents itself as an infection or fungal problem which can not be identified and does not respond to treatment. That is the nature of the beast! Tissue biopsies are a different matter altogether and they look under a microscope for the presence of granuloma.
I wish I could be paid for every specialist who has said that I have an infection. They are still doing it now, even though they are aware that I have Wegener's. I'm afraid there is a lot of ignorance of the condition.:rolleyes:

It sounds as though you are not doing your nose and sinuses any favours with all the tissues you are getting through. You need to be much more gentle with yourself and avoid irritating the condition. In particular, do not use any form of nasal spray!
The most gentle and effective form of nasal cleansing is a saline rinse. This is based on an old yoga practice called neti and is harmless but works a treat! :)
There are several ways you can go about it, but I used to use a 50ml syringe and a warm solution of salt and bicarbonate of soda. You put your head over a bowl and squirt this into your nose repeatedly until the accumulation of discharge just falls out. You may need to devise some sort of extension tube so that you can reach far up into the nasal passage. You probably only need do this a couple of times a day. At other times, be very gentle with the use of tissues. A word of warning - the first few squirts may sting quite a bit, but this soon settles down if you persist.
There are also proprietary products available to accomplish the same thing but at a higher price.

firecracker
08-20-2009, 12:13 PM
I had huge problems with my nose and sinuses before being diagnosed (resulting in some radical, but unnecessary surgery). You say that all the cultures sent away come back negative? They will if you have Wegener's! The disease presents itself as an infection or fungal problem which can not be identified and does not respond to treatment. That is the nature of the beast! Tissue biopsies are a different matter altogether and they look under a microscope for the presence of granuloma.
I wish I could be paid for every specialist who has said that I have an infection. They are still doing it now, even though they are aware that I have Wegener's. I'm afraid there is a lot of ignorance of the condition.:rolleyes:

It sounds as though you are not doing your nose and sinuses any favours with all the tissues you are getting through. You need to be much more gentle with yourself and avoid irritating the condition. In particular, do not use any form of nasal spray!
The most gentle and effective form of nasal cleansing is a saline rinse. This is based on an old yoga practice called neti and is harmless but works a treat! :)
There are several ways you can go about it, but I used to use a 50ml syringe and a warm solution of salt and bicarbonate of soda. You put your head over a bowl and squirt this into your nose repeatedly until the accumulation of discharge just falls out. You may need to devise some sort of extension tube so that you can reach far up into the nasal passage. You probably only need do this a couple of times a day. At other times, be very gentle with the use of tissues. A word of warning - the first few squirts may sting quite a bit, but this soon settles down if you persist.
There are also proprietary products available to accomplish the same thing but at a higher price.

Thanks Jack. I have been using the Neilmed sinusrinse 16oz bottle with the salt mix packets. It takes at least two in a row to rinse my nose out each morning and night. Every ent i have seen says to use pretty much as much as i can. They also say I have the cleanest wegeners nose they have ever seen. lol. boy am i proud! lol. anyway, I also have itraconazole and tobramycin rinses which recently were changed to viles to put in a nebulizer separately with a new addition of a beta something.. a steroid. The ent wants me to use that since I am stopping the prednisone. As far as the biopsys, I didnt mean cultures. They actually cut hunks of tissue from inside my nose and throat at different times. Once, being when I thought I may have strep throat really bad. I had yellow blisters in my throat but they were different. they were really thick tissue. He cut three out and sent them off. Those were the ones that were sent to at least 8 different places and went through multiple techs or whatever you call them that study under microscope in many different ways and they all, every single one, said not consistant with wegeners. no granulomas seen. no characteristics of weg. just that it was shiny tan to pinkish, sometimes gold shiny colored neucrosis looking substance. I even had chunks of glass that came out after surgery. The doctor said he had to scrape so hard to get that out. That was after I got fiberglass poisoning from my ac ducts that were deteriorating and i was breathing it for 2 1/2 years before i figured that out. I had glass like stuff comign out of my skin which then turned to impetigo which got in my nose as well. Then it turned into some sores with black specks in the middle, then into craters which then turned into calous like things that i sanded down. ive had
such an array of issues from the fiberglass to the impetigo, to the mold, and now the possible wg, possible "who knows". im not in denial about wg. I just am skeptical because they say its destruction in my nose coming out all the time. there is just no possible way that it could be that because i would have my brains falling out of my face.. if i even had a face by now. its an enormous amount of stuff everyday. starts as this clear thick liquidy stuff with bubbles in it. globs of it. it turns into a off white thicker stuff with (the only way to describe makes me sound crazy, esp to the doctors) branches with leaves and pods or buds on them. They look just like plants without color. As time goes by, like say an hour or so, it turns into a tanish, redish, grayish, purplish, or even sometimes blackish color. As some more time goes by, it has pretty much all of the colors in them I just mentioned but its thickened up to a claylike texture with the plant like stuff inside it. i know this sounds really crazy. i hate to even type it but i cant find anything at all resembling this stuff anywhere on the internet except for fungal infection sites.. that is the closest thing to it. its like rubber if i leave it alone and dont get it out of my nose. The longer I leave it, the more stuffed up I get. It closes up my right sinus hole completely, my face then swells up to look like I am an abused wife with a black eye to go with it. The smell is horrendous when it does either open up itself which is rare, or I or the doctor open it up. He says it looks like dead flesh. Dead flesh does not grow. If it were dead flesh, I would have nothing left of my head. I have showed him pictures of this stuff. He says when fungus like fusarium finally die, that where it has grown to badly like I had where it "rooted" basically, it will take all the surrounding flesh with it like a plant does when you pull it out of a pot of dirt but the dirt comes with it. He thinks that is what took most of the bottom of the inside of my nose out where you can now see my throat inside my nose. That, makes sense but the dying flesh part that i continually have for over a year and half now, makes no sense. Do you or anyone have stuff like this too? This is not some small amount. If i leave it alone like I have done on purpose for over 12 hours, it will just fill up the entire inside of my nose and start coming out of my nose and going down my throat. it dries up when it gets air to it in my throat and basically I woke up gasping for air and had this flap of this crap in between my nose and throat blocking air passages. it was bigger then say, the size of a golf ball around and over an eighth of an inch thick. this is so repulsing and im very sorry to be so graphic but this to me, i cant find anywhere on the internet. no doctors can explain it. im resorting to asking complete strangers these questions. im so embarassed but what else can i do but ask. :(

Doug
08-20-2009, 01:26 PM
Have your ENTs seen the stuff you get out of your nose? Or tested it? If descriptions don't get it, perhaps samples :eek: or photos of the different things you see :eek: can help your ENTs figure out what you have. Or your other specialists, for that matter.

I can't imagine the level of frustration you feel. As others have noted, you are welcome to vent here. Or tell us horror stories about the stuff that comes out of your nose! We can handle it!

I hope the day comes you get an answer that clears up your health issues.

Jack
08-20-2009, 05:22 PM
No need to suggest that you sound crazy, everyone on this site understands you and believes what you say. Although I had lots of problems and the quantities of gunk produced by my nose were huge and smelly, they don't match your description. Mine were more like general nasal discharge, but with a good deal of blood and magnified 100 times over. I spent months breathing only through my mouth.

I'm afraid I can offer little more than my best wishes at the moment. :(

Sangye
08-20-2009, 11:31 PM
Me, too. It's obviously not something you can solve yourself. Without more/better docs involved, I don't know what else to say. :)

firecracker
08-21-2009, 12:41 PM
Me, too. It's obviously not something you can solve yourself. Without more/better docs involved, I don't know what else to say. :)
so... here i go... about to start chapter what? 5ish of my daily novel of frustration. Just as I suspected all along, my gunk wouldnt match the others gunk. lol. i say lol but am really about to lose my freakin mind after todays crap. I had this feeling that the insane stuff in my nose would not be the same stuff that comes out of peoples with wegeners. i still have this crazy idea that once im off these meds and get my hormones in check .. somehow.. that this stuff will stop. This all started the same time. about 4 or so years ago. I suddenly started getting this week of my life (my period week.. or around it) of insane tiredness. keep in mind that i barely have a period.. no way is it loss of blood making me anemic. i get what i call cross eyed tired. i have fallen asleep driving many times. around the same time, I eat way too much food in general, esp sweets and salty stuff. i blow up like a balloon. my nose starts this insane amound of rubber stuff closing off the right sinus hole, bleeding, hurting really bad. every month. i finally realized this pattern recently. just as i am about to be done with the prednisone, today i realized that my nose did not get better this month. it is downright.. horrible. i noticed a new sore on my face and three on my right arm today. out of the blue. same type of sore that just starts small, expands rapidly into a crater with this white rope like stuff that tries to grow across it to "heal" it? got me. it then turns into that calous type thing and takes months or years to go away. so i started last nite.. feeling somewhat ok. went to bed. woke up at 430 started crying so bad because i was in so much face pain on the right side. my boyfriend tried his best to relax me enough to go back to sleep and it worked along with the pain killer and migraine pill. i then got up for work. back in pain, crying. finally threw up about 15 times and made it to work. face swelled up on the right with the lovely black eye. about 4 or 5 pm at work, i started begging them to let me leave because my nose was bleeding that orangish crap out of the right side... not like there are sides. i have nothing in my nose. no septum. no bottom but the top right area and the right sinus hole have this MASSIVE amount of stuff coming out of them again. although this time, its slightly different. in fact, it actually looks like the beginning .. 4 years ago.. when i actually had hunks of flesh coming out. As this crap came out tonight, I kept looking in there with a mirror and small flashlight to see that it actually may be flesh.. at least some of it. This makes me .... i dont know.. insanely depressed. I now feel like maybe.. i need to go back on the prednisone. or maybe.... its actually making it all worse. i dont know. the docs dont know. The most sad thing of all is I cant go to any new docs. Why? because I work for a company that is about to fire me if i miss two more times or am late two more times. Its a huge company in the communication business. They pay very well and have great benefits but god forbid you miss over 2% rolling year to date. i am currently over 5%. even with fmla and short term AND the 6 months of unpaid leave of absence, its not enough. I am out of everything. If I can make it until november, I will have worked enough hours to apply for fmla and can then go to doc appts again. Right now, I have to try to go and be at work by 1130. if i will be late, i have to leave the doc office no matter how long i have just waited. Basically, my work is giving me the option of working for them and possibly dying because of it.. or getting fired and losing everything i have. my house, car, etc. Right now, I will try to stick this out and do all i can until November. I have a microscope which is how i finally convinced a lung doctor to give me cup to put my nose crap in to send to a lab that finally diagnosed the fusarium. I got all kinds of crap about.. why is the lung doctor doing a sputum sample that you say is from your nose. lol. i have all my doc notes and records, films, labs... etc.. and they straight up say.. some of them say... i have a possible paranoia disorder about bugs. why? because I feel like crap is crawling all over me sometimes. not one mentioned it could be because of the percocet! now i see.. when i take it.. i feel that. when i dont... i dont. they say.. wegeners.. when i had a positive fungal lab results.. yet they say.. you dont have fusarium. no no no. you have something else. you do drugs.. so i switch docs. the more i go to, the more it looks like im leaving them because they "know" im crazy or because they "found me out". i was crying so hard because of pain and all this skin and nose stuff this morning that i was about to start breaking things and yelling but my great boyfriend again calmed me down. he is great. if not for him (weve been together two months and two weeks) i would prob be in the crazy house by now. i just want this nightmare to go away. now knowing my nose stuff doesnt really match the rest of you guys really makes me feel relieved and more scared at the same time. so this concludes this chapter of losing my mind venting again. i think if i had wegeners, i had it 3 or 4 years ago. but im just not really sure. i dont have any other involvement like lungs or kidneys. all that comes back fine. just the sinus and nose.. possibly skin. i dont absorb iron so that is the anemia answer i get. platelets... they say reactive. ive had a bone marrow biopsy, aspiration and the other bone marrow thing they do at the sametime. jak5 testing, fish testing. all kinds of everything. all negative. just p anca one time and c anca positive now.. but really low positive. i have the pr3 or mpo that is positive and the c anca negative... is that even possible? sorry im rambling at this point. ill try to go to bed soon. Thank you all .. again for reading this... i just cant stand it all..trying to deal with it all. :( oh and i have brought many samples to many docs that wouldnt even look at the them. this ent wants samples but everytime i have an appt with him, its all clear and clean inside. it weird. he did get some once.. like 5 diff looking things. he was very confused looking. he said never seen stuff like it. sent it off... all..said.. its not fungal, not bacterial... so.. what is it lab people? ugh

Sangye
08-21-2009, 01:01 PM
Having false (-) blood tests for Wegs is not uncommon. I don't believe that a false (+) is possible, but I'm not sure. It doesn't matter if the ANCA is high or low--that's not an indication in most people of Wegs activity.

November is a long ways off. With the degree of tissue destruction you already have, it sounds like your body is making the decision for you. Having lost everything but my life, I'd say give up whatever you have to in order to get proper care. So what if you have to give up your house? It's painful, but better than dying in it. Be grateful you have the option of living with your parents at least.

Jack
08-21-2009, 04:47 PM
I agree with Sangye, your life comes first, everything else can be rebuilt if you get your health back. I know how scary it is to think that your salary is about to stop - I've been there, but its no good if you are not around to enjoy it. Not that you are enjoying much at the moment!

With such bad sinus and skin symptoms, but none of the other regular Wegener's stuff, it would be tempting to rule out this diagnosis. However, it is a tricky disease and presents itself differently in every patient so who knows?
In my case, the first symptoms were sinus, but they were rapidly followed by skin, joint, eye and renal problems.

Sangye
08-21-2009, 11:46 PM
Jack's left pinky toe is doing quite well, though, so no one should be overly dismayed at what Wegs can do... :D

Jack
08-22-2009, 12:21 AM
What the hell sort of comment was that? There are lots of bits of me that still work well! There is......................

Erm................

And probably......................

Well my transplanted kidney is doing great! :) (Thanks donor whoever you were)



;)

Sangye
08-22-2009, 12:26 AM
Glad to hear the kidney's happy, too. So-- the final tally is : 1 happy left pinky toe, 1 happy transplanted kidney, 1 Weggie who can still laugh.

(Wegs kind of lowers one's threshold of satisfaction, doesn't it? :D)

Jack
08-22-2009, 01:12 AM
It is just a case of adjusting your expectations.

I expect to get up in the morning and go through a pretty bad hour or two, maybe more. On the mornings when this does not happen, it is a good day! :)

Sangye
08-22-2009, 01:19 AM
I know what you mean, Jack. I'm feeling much better on the ctx-- that severe joint pain is not happening as much and I don't have that heavy fatigued feeling. I actually feel pretty decent for the first time in 4 years. Even as I say that, I realize that compared to a normal person I still feel awful, but it's all relative!

Jack
08-22-2009, 01:55 AM
That's great!
So glad you are feeling a bit better, I know you've had a rough time recently and you deserve a break. :)

firecracker
08-22-2009, 12:06 PM
That's great!
So glad you are feeling a bit better, I know you've had a rough time recently and you deserve a break. :)
i agree with you both on that " i feel ok " sorta.. comments. i mean even on the days i say "wow i did feel pretty damn good all day today" its like huh? cuz feeling pretty damn good means.. i was able to maybe walk around all day without feeling like i have a fever like i almost always feel. that achy legs and arms feeling like they are just worn out. the "head cold" head feeling like im in space or a bubble. i really do make some off the wall comments about the horrible crap that i go thru as serious as it may be. i try to keep it light and funny but i just lose it sometimes.. like yesterday. thanks to you all for the comments and ill update you as it goes. i hope to have my blood work back in the mail tomorrow already knowing something is off by the comment the lady made on the phone about dont call about the results to ask questions just come in on tuesday for your appt and the doc will talk to you then.

jola57
08-22-2009, 12:21 PM
I 'm sure you read our talk about new normals that we all have with Wegs. Remission for most is a dream that we all want to achieve but if it comes it usualy is after a long and weary time. Frustration, pain, discomfort and so many more are our constanct companions. Feelings that you have are not yours alone, at one time or another we all felt the same. I am sorry you are facing such a terrible time at work, but I for one think that you should keep up the time table and try to apease the beast (company) until November. Just 2 more months, make a calendar and cross off days gone, put a happy face on the day your wait is finished. Definitely make sure that your health comes first, but be in the docs office first thing the door opens, use emergency rooms if necessary. I will keep rooting for you. good luck

Doug
08-22-2009, 01:45 PM
I 'm sure you read our talk about new normals that we all have with Wegs. Remission for most is a dream that we all want to achieve but if it comes it usualy is after a long and weary time. Frustration, pain, discomfort and so many more are our constanct companions. Feelings that you have are not yours alone, at one time or another we all felt the same. I am sorry you are facing such a terrible time at work, but I for one think that you should keep up the time table and try to apease the beast (company) until November. Just 2 more months, make a calendar and cross off days gone, put a happy face on the day your wait is finished. Definitely make sure that your health comes first, but be in the docs office first thing the door opens, use emergency rooms if necessary. I will keep rooting for you. good luck

Amen! I used to use vacation time where I worked because I had lots of it after 30+ years there, and I didn't want to stir up the beast (appropriately characterized!) by using time I had available for medical leave or sick days. I'd use as little as half a day's vacation, to two or three just so the time off for doctor's appointments (many times up to 4-1/2 hours' drive away in Denver!) didn't show up on records as sick days. When time off for hospitalizations was necessary, then I'd use sick time off. I managed never to to need to go on medical leave (at reduced income), but I did worry about that happening. Main thing, I'm glad I'm retired and don't have to deal with the beast any more. Hang in there till November. Jolanta gave you a good idea with the calendar: it'll help focus you on that goal!

firecracker
08-24-2009, 09:03 AM
i def agree and have a countdown on my calendar in my purse. its been a countdown since July when I ran out of my existing fmla and cant renew til i work 1250 hours which is sometime in november. I used over 15 vacation or personal days for pain or doc appts just in july. i now have 4 vac days left and 2 personal. we dont have sick days where I work. in fact, when i call to see if there is a vacation day available to use (not too many people off already), if i mention i feel bad, its automatic NO. we are not allowed to use them for sick days. ridiculous but that is how they work. beast is an understatement for sure. ill update on tuesday after my rheum appt and whatever bad news he has to tell me that they wouldnt tell me over the phone. blah. at least today i feel better then yesterday. at least for now. back to work tomorrow. ugh. thanks again all

Doug
08-24-2009, 10:41 AM
i def agree and have a countdown on my calendar in my purse. its been a countdown since July when I ran out of my existing fmla and cant renew til i work 1250 hours which is sometime in november. I used over 15 vacation or personal days for pain or doc appts just in july. i now have 4 vac days left and 2 personal. we dont have sick days where I work. in fact, when i call to see if there is a vacation day available to use (not too many people off already), if i mention i feel bad, its automatic NO. we are not allowed to use them for sick days. ridiculous but that is how they work. beast is an understatement for sure. ill update on tuesday after my rheum appt and whatever bad news he has to tell me that they wouldnt tell me over the phone. blah. at least today i feel better then yesterday. at least for now. back to work tomorrow. ugh. thanks again all


Human Resource Manager job description:

1. find resources
2. use them up
3. throw what's left over away

In all fairness, I've known HR managers who went the extra mile to figure out ways for me to minimize the impact of my various illnesses on my health and attendance records. I came across the definition above in a book that felt most waste could be attributed to managers who failed at their jobs. ("How can they do their jobs? They don't know what their jobs are." It was an interesting book, to say the least.):)

firecracker
08-25-2009, 11:22 AM
I think my hr.. for the most part has the following viewpoint..... 1) make it as hard as possible for anyone to have a life 2)wait.. did i say life? what life... lets give them a countdown on getting fired so the minute.. they are late.. over 2 mins and 59 seconds... write em up again.. 3) then last step.. give them a "dml" decision making leave. go home.. think about if you want your job. if you do, come to work 100% of time for specified amount of time or gone you are... its ridiculous. if they did not pay what they do and have the benefits... id tell them a few things.. including.. well nevermind.. should leave that bad language off this blog lol.

Doug
08-26-2009, 12:48 PM
I think my hr.. for the most part has the following viewpoint..... 1) make it as hard as possible for anyone to have a life 2)wait.. did i say life? what life... lets give them a countdown on getting fired so the minute.. they are late.. over 2 mins and 59 seconds... write em up again.. 3) then last step.. give them a "dml" decision making leave. go home.. think about if you want your job. if you do, come to work 100% of time for specified amount of time or gone you are... its ridiculous. if they did not pay what they do and have the benefits... id tell them a few things.. including.. well nevermind.. should leave that bad language off this blog lol.

Hey firecracker! Here are a few for you to use: axxxxxx, bxxxxxxx,umm, that's the idea! Or you can get creative and substitute #^*@!!!?*# and the like. Situations like the one you describe are why Scott Adams makes megabucks with "Dilbert". Deming notes, of managers, "How can they do their jobs? They do not know what their jobs are." He proceeds to list 14 points on management, none of which involves terrorizing the employees (and that is exactly what you HR Manager is doing, right?!) but all of which recognize that managers control 80% of "errors", whereas the subordinates control only 20%.

firecracker
08-27-2009, 11:09 AM
I agree with Sangye, your life comes first, everything else can be rebuilt if you get your health back. I know how scary it is to think that your salary is about to stop - I've been there, but its no good if you are not around to enjoy it. Not that you are enjoying much at the moment!

With such bad sinus and skin symptoms, but none of the other regular Wegener's stuff, it would be tempting to rule out this diagnosis. However, it is a tricky disease and presents itself differently in every patient so who knows?
In my case, the first symptoms were sinus, but they were rapidly followed by skin, joint, eye and renal problems.

I am wondering what type of eye problems you (or anyone reading this with wg) had/have.

firecracker
08-27-2009, 12:38 PM
So.. yesterday was the rheum doc appt with results of the blood work when I was on the prednisone 5mg a day. yesterday i was on day one of "no prednisone" to start everyday without it. my blood test came back much better then.. ever except for my sed rate. it goes up and down and makes no sense to what dose of pred i am taking. it dropped to 5 when i got off the mtx. two weeks ago when i was down to 5mg a day of prednisone, my sed rate went up to 36, my platlets remained the same.. 645ish. The lowest in 4 years was when i got off the mtx and was on 10mg of prednisone. it was 471. also two weeks ago when they pulled the blood, my pr3 was 25. which a month before was 11 and the month before that, 10. The doc did an exam (believe it or not) and again said he does not think i have wegeners and again asked why they (mayo) diagnosed me with it with only the anca counts being positive and nothing else positive. only having sinus/nose issues and possibly skin issues (which also got alot better when i was on the antifungal voriconazole last year). i dont know the answer to his questions. he is going to test me for lupus. i already have been tested before. negative. altho i read up on it and its diagnosed by pretty much the same things wg is. i dont think they will ever have an answer based on my symptoms unless they spread to some other parts of my body. i have been poisoned by fiberglass, mold and whatever in the last four years so it all could be a mixture of this or that. anyway.. he put me back on prednisone 10mg a day. wanted to put me back on mtx but i have too many side effects so for now.. just the prednisone. i felt better today so we will see. the journey seems to always be starting all over.

Doug
08-27-2009, 01:48 PM
So.. yesterday was the rheum doc appt with results of the blood work when I was on the prednisone 5mg a day. yesterday i was on day one of "no prednisone" to start everyday without it. my blood test came back much better then.. ever except for my sed rate. it goes up and down and makes no sense to what dose of pred i am taking. it dropped to 5 when i got off the mtx. two weeks ago when i was down to 5mg a day of prednisone, my sed rate went up to 36, my platlets remained the same.. 645ish. The lowest in 4 years was when i got off the mtx and was on 10mg of prednisone. it was 471. also two weeks ago when they pulled the blood, my pr3 was 25. which a month before was 11 and the month before that, 10. The doc did an exam (believe it or not) and again said he does not think i have wegeners and again asked why they (mayo) diagnosed me with it with only the anca counts being positive and nothing else positive. only having sinus/nose issues and possibly skin issues (which also got alot better when i was on the antifungal voriconazole last year). i dont know the answer to his questions. he is going to test me for lupus. i already have been tested before. negative. altho i read up on it and its diagnosed by pretty much the same things wg is. i dont think they will ever have an answer based on my symptoms unless they spread to some other parts of my body. i have been poisoned by fiberglass, mold and whatever in the last four years so it all could be a mixture of this or that. anyway.. he put me back on prednisone 10mg a day. wanted to put me back on mtx but i have too many side effects so for now.. just the prednisone. i felt better today so we will see. the journey seems to always be starting all over.

The cANCA test points to WG, but isn't a dead-on, 100% type of test. From a positive cANCA, most WG specialists will perform biopsies of sinus, lung, and /or kidney tissue as a back up verification, if indeed the physiological changes in the vascular walls fits the pattern. I don't recall, firecracker, have you had any of those biopsies done? Once someone is diagnosed as a weggie, the cANCA test is used as an indicator of the weggie's status, but not as the sole measure of the weggie's state of health. Other blood and urine tests are performed for fuller measure of the weggie's progress/decline. :)

jola57
08-27-2009, 03:38 PM
Yes, the best form of diagnosis for Wegs besides the blood work is a biopsy of the involved site. If the Wegener's granulomas are present - bingo jackpot -you have it.

firecracker
08-27-2009, 11:21 PM
The cANCA test points to WG, but isn't a dead-on, 100% type of test. From a positive cANCA, most WG specialists will perform biopsies of sinus, lung, and /or kidney tissue as a back up verification, if indeed the physiological changes in the vascular walls fits the pattern. I don't recall, firecracker, have you had any of those biopsies done? Once someone is diagnosed as a weggie, the cANCA test is used as an indicator of the weggie's status, but not as the sole measure of the weggie's state of health. Other blood and urine tests are performed for fuller measure of the weggie's progress/decline. :)

I have had multiple biopsys done. The first when I had sinus surgery, came back not consistant with wg. no granulomas found. Then I had more biopsys done when my throat had some crazy stuff looking like it was melting like freddy krugers face. all again negative. so the only thing is the pr3, sed rate and platlets.

Doug
08-28-2009, 04:34 PM
That's right. You are our mystery weggie. I'll try to keep all of your particulars in mind. You've been through a lot more than most of us.

Jack
08-28-2009, 05:56 PM
Impossible to diagnose by internet I know, but it is starting to sound like this might not be Wegener's at all. I know from my stays in hospital that there are plenty of other nasty diseases out there that few people have heard of.

Sangye
08-29-2009, 01:27 AM
Firecracker, in researching this a bit, I've learned that it's possible have a false (+) ANCA or PR3. It does seem strange that you could have the extensive tissue destruction you describe and have (-) biopsies if it's Wegs. But I don't know the statistics on that. There are no hard and fast rules with Wegs, and the same goes for many other AI diseases.

In your case, it may come down to treating you with the typical Wegs protocol (the same protocol for several other rare AI diseases) and seeing if it helps. You may never have an exact diagnosis, but you could still get well. This is often done in cases that are not straight-forward.

GeorgiaInOhio
08-29-2009, 02:16 AM
wow i know im jumping in on this one late, and this thread suddenly went to firecracker, but WOW. ive read all your posts, and im just beside myself. i feel so bad and so confused for you firecracker. i really, really hope you can find someone who can give you some answers. dont give up, keep searching. theres some show on cable called mystery diagnosis, i dont have cable but my friend used to tell me about it before i got diagnosed with WG, and i think you should google it, and contact them. Also, try the show the Doctors- i know that sounds crazy but believe it or not, tv shows are always looking for the next "story" and the Doctors pays for everything, will research till they find answers and find the doctors that know whats going on. it couldnt hurt and with everything your going thru, you may need that off the wall suggestion to get your answers. it sounds to me like you may have something new, or unheard of. the magellons disease may not be that far off to be honest with you. but you need to keep demanding answers. thats just terrible to have to go thru all that with your sinus's. I would bottle that stuff and walk into the doctors office and say, TELL ME WHAT THIS IS NOW!!! Copy and paste all your posts into a text program, send them to any specialist you can find and let them read what you have written. someone has to figure this out. im so worried about you. I dont even think i have problems anymore, i want to find answers for you. lol. please keep us updated. this all just amazes me. you are in my thoughts, take care of yourself! and seriously consider sugar and salt reduction! Inflammation is a nasty thing, and sangye is right, it ruins your hormones. its not that hard to illiminate if you try. im a sugar junkie, and i can do it. its better than suffering your whole life! it will definitley ease some things

anyway, good luck to you!

firecracker
08-29-2009, 11:54 AM
Thanks to all of you. Im sorry to have taken over the thread. def didnt mean to do that. I am just so frustrated and hoping someone either has something similiar or has heard or seen something that fits me too. Ive had so many docs say "wg" right off the bat and that was even before the anca +. They just assume. I have watched just about every single episode of mystery diagnosis and all the other med shows there are when i was not working. There are tons of things that fit alot of my symptoms. What i just found out last night is I have about 95% of the symptoms that someone with lyme has. My good friend and her husband have lyme and i talked to her last night. She read down the list of possible lyme or parasite type diseases and i about lost it. .. like omg these fit me so much.so ill get checked for that as well soon. Thanks again.

Sangye
08-29-2009, 12:27 PM
There's no need to apologize for taking over a thread-- no one owns them!

Based on what you've described, Lyme's is very unlikely. Lyme's can create havoc in the body, but it doesn't destroy tissue like you have experienced. Not at all. It also doesn't create tons of mucous or produce anything like the things you've described coming out your nose.

When it infects the nervous system, the damage to nerves, the brain or the eyes is very distinct. It isn't just weakness or headaches. It also damages joints (via inflammatory arthritis) when it causes pain in them. The affected joints swell tremendously and when the swelling and pain subside, the joint doesn't function as well anymore.

The list of Lyme symptoms is very broad. Many people with a severe chronic illness will identify with many of the symptoms-- especially people with autoimmune conditions. Lyme's isn't an autoimmune disease, but it acts like one in certain ways.

It won't hurt to ask for a test, but I bet they've already tested you. It's pretty routine for anyone with bizarre symptoms. Even if it came back positive, there are false (+) and (-) all the time.

Before I got dx'ed with Wegs, we thought I had Lyme's. We treated it holistically for a few months with mixed results. Mostly I just went straight downhill and almost died. In retrospect, I don't know if I had Lyme's or not. I look at the list of symptoms and like you, can identify with a huge number of them, even though I now know they're due to Wegs.

I'm sorry-- I know you're desperate for a diagnosis. I just think you're barking up the wrong tree on this one.

firecracker
08-30-2009, 04:35 AM
I agree with you on the list fitting many diff illnesses. I mean I fit just about most of them in one or another. The tissue damage however, so far, there are three or four diff reasons for that. could be all, one, two, three, or none. wg for one. breathing the deteriorating ac ducts fiberglass that poisoned me (which is the time i lost that tissue in my nose), the systemic mold fusarium infection, and of course.. the 11 1/2 years of sanding and painting cars i did with my pops up until about 2000. I have always had bad sinus issues. About two to three sinus infections a year right after head colds. Really though, it was not until the fiberglass issue in 2005 to i think 2007 that i had massive tissue dying out and massive bleeding of straight up red blood along with probably the worst pain of my life. Once i got rid of the ac unit, ducts and everything in my house and i mean every single thing, the bleeding stopped. From then on it was that off the wall weird stuff though.

Sangye
08-30-2009, 06:08 AM
Though in the majority of cases the cause remains a mystery, there is only one known cause of Wegs-- silica dust exposure. Fiberglass is made of silica fibers. I also imagine you might have had exposure to fiberglass dust when sanding cars. I don't know if auto pain contains silica as well.

Haven't any of your doctors pointed this out?

Jack
08-30-2009, 06:16 AM
there is only one known cause of Wegs-- silica dust exposure.
I didn't know that. Any more information?

Sangye
08-30-2009, 06:35 AM
If you go to PubMed (http://www.ncbi.nlm.nih.gov/sites/entrez/) and type in "Wegener's Granulomatosis silica" you'll find lots of research on it. Here are a few.

Silicon exposure and vasculitis. [Curr Opin Rheumatol. 1998] - PubMed Result (http://www.ncbi.nlm.nih.gov/pubmed/9448985?ordinalpos=11&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum)

Epidemiology of systemic vasculitis. [Curr Rheumatol Rep. 2005] - PubMed Result (http://www.ncbi.nlm.nih.gov/pubmed/16045829?ordinalpos=3&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum)

Wegener granulomatosis is associated to exposure t...[Nephrol Dial Transplant. 1995] - PubMed Result (http://www.ncbi.nlm.nih.gov/pubmed/7478118?ordinalpos=12&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsP anel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum)

In the US, it's extremely difficult to make a case that exposure to toxins in the workplace have caused a disease. However, silica exposure and chronic exposure to solvents have been linked strongly enough to Wegs that Worker's Compensation accepts them as causal. I know of at least 2 Weggies in that boat.

Doug
08-30-2009, 12:39 PM
Interesting. I was exposed to both solvents and milled mica in the early days of my work in a hose factory. Solvent was used to make an adhesive used to increase adhesion between braid layers, and the milled mica was use as a lubricant on the outer cover of uncured hose. Solvent fumes and airborne particles of mica (there was an perforated ring to blow excess off and a vacuum hood to remove the airborne mica into a collection bin) couldn't be avoided. I needed to have time documentation on paperwork I did, and Seiko watches would wear out in a year or so because of the mica in the air! Many people have issues with OSHA (Occupational Safety & Health Administration, for those of you outside the USA). But the workplace of the 1970's was a disaster waiting to happen. The workplace of the 2000's still isn't 100% safe, but it is much safer because of OSHA.

Sangye
08-30-2009, 11:04 PM
I got Wegs after living in a new manufactured house for 4 years. A contractor buddy of mine said my house off-gassed worse than any house he'd ever been in. I always aired it out a lot and used what we thought at the time were great air purifiers-- the ionic breeze kinds. (Turns out they put off way too much ozone--free radicals). The whole neighborhood was a subdivision of these new houses. Mine was one of the first built. It had all been pine forest before. I used to walk my dog around the neighborhood as it was being built. The wood and newly-delivered homes absolutely reeked of chemicals as you walked down the streets.

Within 6 months of living in the house, that dog became ill with symptoms. In retrospect, it looked like classic Wegs. We knew it was some autoimmune disease but had no idea what. She disintegrated before my eyes and died within 6 months of falling ill. One and a half years later, I got my first symptoms of Wegs.

Jack
08-31-2009, 03:00 AM
I really can't put my finger on a possible cause for my Wegener's, but I have worked in the auto industry all my life so have probably been exposed to all sorts of stuff.

Doug
08-31-2009, 03:42 AM
I hope others fill this thread with their thoughts on this topic. I bet a significant part of us were exposed to silica, solvents, heavy metals (lead, for example), benzine (rubber industry- used in lab tests), auto repair shops (especially those that painted repaired cars with solvent-based paints), people like Sangye who moved into homes where formaldehyde and other nasties were used in materials in the construction of those homes, and who knows what else if you were in the military or around military bases or industrial sites that vented nasties into the environment.:mad::confused::( A person I work with lost a sister to a wasting disease that, as my WG symptoms and experiences became known to him, sounded exactly like what his sister went through. In her case, they never did figure out what was wrong with her. I mentioned to my friend what thoughts researchers had on possible causal agents (solvents, in that case), and he said his sister had worked in a small "factory" (a small storefront shop) where they made fishing lures; she's been exposed to heavry solvent fumes coming off lure paints for several months. It's all anecdotal, but facinating in a watching-a-head-on-car-wreck sort of way.

Luce
08-31-2009, 09:59 AM
I really don't think I've ever been exposed to anything that would be harmful enough to cause WG, but then I don't know for sure so anything's possible.

I'd like to know that someone one day will discover a cause behind all this and I can say that without doubt that's the reason I got sick, but I'm not sure that will happen in my life time.

I think this is what a lot of us find so hard to understand in the beginning - nothing you knowingly did to yourself (diet, weight, smoking etc) caused you to be ill so why the hell am I sick? Why did my body just turn on itself and start killing itself from the inside out?

One day we'll know, I'm sure....

crackers
08-31-2009, 10:10 AM
well we've lived in the same house for nearly 30 years and before having to give up work spent nearly 17 years working for an insurance company where,although i was home based,spent my days outdoors seeing clients.
john.

Sangye
08-31-2009, 02:56 PM
Luce, your last comment made me think of something. Before I got Wegs I rarely got sick at all. I always said I had a killer immune system. When I tell people that now, I laugh and say, "Now I have a KILLER immune system!"

I don't know what caused my Wegs--maybe the house fumes, maybe not. I don't put much thought into it, because dealing with what's on my plate takes all my focus.

Jack
08-31-2009, 04:11 PM
There are a lot of people on here saying that they were never sick before. I count myself as one of these, always managing to avoid the flue or anything else that was going around. I did read something once about auto immune diseases that said it was to do with the underlying strength of the immune system.

Sangye
09-01-2009, 12:42 AM
Toxins dysregulate the immune system over time. This is one reason why otherwise health people suddenly develop AI diseases-- the immune system just can't sustain it any longer. It's also why you can reverse the process for many AI diseases (other than Wegs and a few others) if you catch it early enough.

jola57
09-01-2009, 01:23 AM
I too have lived in my house for 20 years (it may have some mold issues, I have never seen any evidence of this but my son gets allergic sinus drips when he visits, yet this may also be due to trees, shrubs and flowers). I have been exposed for minute amounts of toxins in my teens (my dad had an electroplating factory) but no more than a cumulative hour or so a week for 5 years. I have had regular colds, couple of the biggie flu's - hong kong and china which as I remember made me very sick. Overall just your regular life. In about 3 years befor Wegs I had several operations, appendix, partial hysterectomy, 2 bunionectomies and was anemic for 9 months. I strongly think that it was the anemia that wrecked havoc with my immune system.

Sangye
09-01-2009, 02:11 AM
Good thing they were bunionectomies and not bunny-ectomies, huh?

jola57
09-01-2009, 02:41 AM
That brough a much needed chuckle

Doug
09-01-2009, 05:18 AM
bunny.....oooh!:p

pberggren1
01-22-2010, 08:15 PM
I've been reading through alot of old threads lately.

I've seen Firecracker on this thread alot - I feel so bad for her.

I too was exposed to solvents and fiberglass at work. I've always believed that WG was triggered by some environmental toxic exposure.

renidrag
01-23-2010, 10:28 PM
I been a plumber fo 40 years and have worked with all kinds of solvents. lead. Plastics and fibeglass, not to mention cleaning drains and clogs. Never had a sick day in my life till this. Worked a lot of new houses but none with the formaldahyde insulatiion, but what about the batt insulation? Thinking back on all the different substances I have inhaled along with cigarette smoke how can you point to one thing. I read somewhere that weggies should stay away from gardening, construction and mowing the lawn. Odd.

jola57
01-23-2010, 10:54 PM
Solvents and other harmfull substances are all around us and it is tough to say if they are the reasons for our wegs. There are far more healthy people living in the same conditions as us. So if it is environmental, we simply have someting in our genes that is more susceptible to these chemicals. As much as we would like to see an outside reason for the illness, we need to look first to our own bodies and its responses before pointing fingers. Don't forget that some of us got wegs after some physical traumas and/or stress. Oh and don't forget the bunnies. LOL

Jack
01-23-2010, 11:49 PM
I once read a paper that speculated that our immune systems come in a range of effectiveness and sensitivity and that people with auto immune conditions were at the extreme end of the range. That seems to fit with all the reports in this Forum of members not having any health problems until struck by Wegener's.

elephant
01-24-2010, 01:36 AM
Even with the immunosuppressant medicines, I don't remember getting a cold. I really just started getting sick with sinus infections on/off. I never had viral issues. Just bacteria ( sinus infections) because my sinuses weren't working correctly removing the mucus.

Sangye
01-24-2010, 02:46 AM
You guys bring up good points about toxins being the cause of Wegs. Whenever theories about the origin of an illness are presented, holistic doctors ask one question, "If it's only due to ____ then why isn't everyone affected?" That's where we lose the medical doctors. Even a cold isn't only due to a cold virus or everyone in the community would get it. Not everyone got bubonic plague, and of those who did, not everyone died. Look at the variability in responses to H1N1 infection.

The "Why" is where holistic medicine lives. It's also why we dislike statistics about the virility of flu strains, etc... They don't even attempt to measure the variables.

"Why" has always been my favorite word, no surprise where I landed. :D

elephant
01-24-2010, 06:48 AM
Why is the question. Genetics is the answer? Chromosomes? Mutant gene?

Sangye
01-24-2010, 06:54 AM
Yes, those are other variables but not the root. (Why did a gene mutate?) Throw in nutritional deficiencies, suboptimal organ function, central nervous system interference, introduction of other toxins (environmental, vaccines, baby formula, processed foods...) and that's not even a complete list!

Take a disease that they've identified as having a genetic component-- eg cystic fibrosis. There's still high variability in how CF affects each person. Why?

jola57
01-24-2010, 07:25 AM
I don't know if I have told a story of two of my Mom's friends- identical twins. At age 24 they emigrated, one to Canada one to Australia. At age 85 one passed away from Parkinsons, one is as healthy as ever. So same genes but different life styles and different outcomes. So evnironment definitely plays a role, but on the other hand after the nuclear disaster in Russia, with so many people exposed to the radiation a small percentage never developed cancer and neither did their children. If we had the answer to why we would all be cured.

pberggren1
01-24-2010, 12:03 PM
The answer lies in Providence.

Sangye
01-24-2010, 01:46 PM
Providence, Utah? :D

pberggren1
01-24-2010, 08:13 PM
Your wittiness continues!

elephant
01-25-2010, 01:05 AM
I briefly recently read an article in " Time" magazine called, " Why your DNA isn't your destiny". I warn you the subject matter was over my head trying to understand the terms used "epigenetics. But interestingly Nutrition ( feast and famine) played a huge role!

Sangye
01-25-2010, 01:12 AM
Huge role.

More why's to ponder: If a gene is at the root of breast cancer, why are some women cured and some are not? Why does it metastasize in some but not in others? Even when caught "early" and treated with the same regimen, the results are all over the place.

Why doesn't everyone respond to aspirin the same? Why doesn't the same person respond the same way each time they take it?

elephant
01-25-2010, 01:48 AM
I know this is way off the subject, but I have read that symmetry or mathematically plays a role in beauty, athletic performance and health. I wonder about that in our genes. If the genes are symmetrical or mathematically balanced and if that has something to do with that. Long time ago I was watching the discovery channel ( late at night, could not sleep) and they mentioned that the cheetah's spots were a mathematical equation. A scientist figured this out.

Terri
01-25-2010, 12:25 PM
All this talk of toxins and such. About 15 years ago, in the spring I spent almost a month in misery. Head aches, dizziness, just ill feeling. I had been to several Dr.'s , no answers. Didn't have a computer then so couldn't Google for answers. Was still going to work everyday and noticed that when I spent a day at work or would be outside I would feel a little better. We had been using our wood burner all winter for heat and when it started to warm up we switched over to our fuel furnace. It was all connected to the same chimney. I told my husband it has to be the furnace making me sick. When we took the stovepipe off, it was full of creosote and I had been getting carbon monoxide. It was like instant relief for me when the furnace ran the next time. Now why did it affect me and not my husband or son? I even had two birds at the time and you would think they would have shown some signs of distress. After that, things such as fly spray or anything with a chemical smell, I seemed to be more sensitive to.

Sangye
01-25-2010, 01:23 PM
You had mentioned before that you were a smoker. Smoking decreases the amount of oxygen in your blood. If you then add carbon monoxide to the air, you'd be quite hypoxic. Even if your husband was a smoker too, he might have had better oxygen uptake and didn't notice the CO as much. There are other hypotheses swimming around in my head, but I'm just glad you're alive to tell the story!