Very Sick

[spiritscript]

Ok, so I haven't been here in about 10 months. I have not, as yet, received an actual diagnosis. I do skip plenty of doctor appts. I originally (about 3 years ago) had a few cat scans; a lung nodule and a perforated septum. A year ago my cat scan showed 2 lung nodules. The perforated septum is much bigger. And last month my labs showed Chronic Kidney Disease; Stage 3. My current primary reduced my Metformin by half and told me no more anti-inflammatories, and will see me again in March so that hopefully I won't need dialysis. I went to my rheumatologist about 2 months ago so I could get a prescription for Enbrel injections as I stopped biologics at least 8 months ago and now my hands BURN. The Enbrel is helping, thank God! I also take Hydrocodone for the never ending pain. The weather here has been HORRIBLE!!! I live in the heart of the Poconos and it will get even warmer tomorrow; close to 80 degrees! My nose BURNS! I feel better when it's cold outside and snowing. It's so warm that people can smell garbage odors from the cans! This weather is HIGHLY unusual for the Poconos! Anyway, my rheumatologist and that network thinks ALL narcotics are for drug addicts. He wants to see my medical records from my pulmonologist and my pain management doctor. I have nothing to hide. But I will not sign the release forms because I do not want him telling my pain doctor off. He is the last pain doctor around here and even he is 30 miles away. My sinuses started getting bad with rhinitis 23 years ago! At this point in my life I just want to be out of as much pain as possible. My health got much worse over 3 years ago. I am 61-yrs-old and my youngest (now 22)has Aspergers and lives with me. She is wonderful! I guess the only question I have right now is if it's necessary to have a nasal biopsy to find out if I have Wegeners. Thank you all so very much!

[Alysia]

Hi & welcome. I am sorry for your pains.
Nasal biopsy might be false negative. I had 2 like that. It seems that your illness is active and without a decent treatment. Once you get treatment, you will get relief from many pains.
As much as you suffer, I suggest to be careful with narcotics. Some of them can cause respiratory depression. Ignorant docs prescribe it to patients with breathing problems while actually it make the breathing worse.
Try to find an expert. Sending prayers. Please update us.

[JeanMarie]

Hi Spirit, I agree with Alysia, but want to ask: Are you seeing a nephrologist? Stage 3 kidney disease requires a nephrologist, don't wait for things to get worse. I hope you find a solution & are better soon!!

[txrepub4God]

I don't want to sound harsh at all, because I never want to question the health decisions other WG patients make for themselves. However, you seem to have a ton of the symptoms that are pointing to having Wegs, but are not pushing hard enough to get the definite diagnosis made and start treatment for it. Wegs is a deadly disease, and without treatment, you've pretty much given yourself a death sentence within the next 1-2 years. I understand that you are currently seeing a rheumatologist, as well as a lung specialist and pain management doctor....but are any of these specialists pushing you to get SOMETHING biopsied to 100% verify the Wegs and then get on a treatment plan for it? If your specialists aren't trying their hardest to make sure you either do or do not have Wegs, then you need new doctors. You are lucky that you have made it 3 years without any treatment for Wegs if you do end up having it. You have GOT to get an affected organ system biopsied to see if you even have Wegs. The lung doctor could biopsy the nodules in your lungs; an ENT could biopsy your sinuses, your nephrologist could biopsy your kidneys since you obviously have kidney involvement. You just need to get on someone's case to get a biopsy done.

Have you even had the lab work done for Wegs? Have you had an ANCA panel run (should check your pANCA, cANCA, MPO and PR3)? Have they checked your ESR (sed rate) or CRP (C-reactive protein)? These things can help your rheumatologist see if your bloodwork is pointing to Wegs as well. I would be finding another rheumatologist myself, because yours seems to have just let these issues fester for 3 years and that is unacceptable. I'm upset for you - but you also have to be your own #1 advocate. If I had listened to my rheumatologist and just stayed home a couple weeks ago and NOT gone to the ER, I would have died. She told me on 3 separate occasions over 2 weeks that I would be fine, that I just needed to stop the Cytoxan and let my body heal and my bone marrow would start making blood cells again. Taking her advice got me very close to death and I am SO VERY THANKFUL that I listened to the voice in my own head that told me something was deadly wrong. You have got to stand up for yourself, because you are the only person that cares about yourself more than anyone else.

If you do have Wegs, you have got to get started on a treatment plan for it. You need to be on a chemo drug and steroid, or on Rituxan IV, or SOMETHING. You cannot just sit there with Wegs and hope for the best. No treatment on Wegs pretty much equals death. This is an extremely serious situation and disease. Pleeeeeeeeeeeeeease take this more seriously and go find better help. Do it for your daughter. Get serious about this and get it taken care of.

Teri

[JeanMarie]

Teri says it all!!!!

[Birdie]

Teri says it all!!!!

Agreed.

It's dissapointing to continually hear of people with likely Wegs, who go a long time without even getting a solid diagnosis. It's not that hard to find out in many cases, but not even knowing if you could be an easy diagnosis? That is, uhm, is... uhm... foolish? Yep, foolish, or at least that's the word I'm going with here.

Find out Spirit!

[drz]

Many of us went two or three years with the typical symptoms of Wegs but none of the doctors we saw for them saw the big picture. Some of us had to nearly die and get serious damage to our bodies before we finally got a correct diagnosis that explained all these mysterious symptoms. But having doctors tell you they think it is Wegs but then won't treat it appropriately would be even more infuriating to me. That is when i would seek out a known Weg expert who is willing to confirm the diagnosis so appropriate treatment can be started. Many of us never have had a biopsy to confirm our diagnosis since they can be hard to get with limited Wegs or even Wegs in the lungs or other locations. A recognized Weg expert can usually diagnose Wegs from our history, the symptoms and our lab work without needing a positive biopsy to confirm the obvious.

[debra]

Spiritscript,hi. Oh wow,please please talk to you're doctor that has u on metformin!!!!!!!!! Please! What on earth,this drug can't be taken with any kidney issues let alone stage 3! Metformin is broken down in the kidneys,and very hard on them,if there not working as they should be.. this was the first thing I did when I got sick,was ditch the met! Not waiting for a moron to tell me this! Which,by the way they did not... Good thing I like to read otherwise I might still be taking mine.. it stopped controlling my blood sugar litteraly the day all hell broke lose... U need something to control you're blood sugar,but not metformin with weak kidneys.. please look on the warning that comes with the met. I would call CVS,and speak to a pharmacist,as these guys r way more helpful than doctors,as far as I'm concerned!!!! My pharmacist rocks,my doctors suck! Please call...... P.m.s. i was only kidding about you're cat... He's very cute! Fluffy,not fat!

[debra]

Spiritscript,hi its Deb,again. I forgot to mention,please look up metformin and lactic acidosis. I'm guessing you're doctor at least reduced you're dose of metformin? I will go back and read it again,maybe I missed it. Again please call like CVS,a lot r there 24 hrs.,and they as far as I'm concerned have more knowledge than most doctors I know. Mine anyway... I can't help on the rest as it seems we r almost twins! Maybe that's why u sent the request I don't know how to respond to! I'm sorry,as this getting help should not be this difficult.... I wish u the best.... Deb.

[debra]

Yup, Deb again,so I read it over,and saw she reduced it to half. I would still look into this, as again met is very taxing on the kidneys. I didn't feel safe,when my problems all started,and I stopped,on my own. Please please don't do this! It was fine for me and my endocrinologist had no problems with it. Again please call at least the pharmacist. Lactic acidosis can kill u.... There r other meds to bring you're blood sugar down,that aren't as hard on the kidneys,but work more in the liver.... Buy the way,you're on my friend list,just noticed. So yay it worked, whatever I did....... Deb.

[drz]

My doctors were concerned about my liver function when I was on it.

Metformin is a biguanide antihyperglycemic agent used for treating non-insulin-dependent diabetes mellitus (NIDDM). It improves glycemic control by decreasing hepatic glucose production, decreasing glucose absorption and increasing insulin-mediated glucose uptake. Metformin may induce weight loss and is the drug of choice for obese NIDDM patients. Use of metformin is associated with modest weight loss. When used alone, metformin does not cause hypoglycemia; however, it may potentiate the hypoglycemic effects of sulfonylureas and insulin. Its main side effects are dyspepsia, nausea and diarrhea. Dose titration and/or use of smaller divided doses may decrease side effects. Metformin should be avoided in those with severely compromised renal function (creatinine clearance < 30 ml/min), acute/decompensated heart failure, severe liver disease and for 48 hours after the use of iodinated contrast dyes due to the risk of lactic acidosis. Lower doses should be used in the elderly and those with decreased renal function. Metformin decreases fasting plasma glucose, postprandial blood glucose and glycosolated hemoglobin (HbA1c) levels, which are reflective of the last 8-10 weeks of glucose control. Metformin may also have a positive effect on lipid levels. In 2012, a combination tablet of linagliptin plus metformin hydrochloride was marketed under the name Jentadueto for use in patients when treatment with both linagliptin and metformin is appropriate.

[debra]

Sorry by,not buy!!! Ha ha,I love that this phone calls itself a smart phone! Deb. Smart phone all right.....

[debra]

Drz,hi! Wow, for real? Met is mainly broken down in the kidneys,that's odd... It's to bad to,cause its the one drug,I believe in. I don't buy the pre diabetic bull,thank God,my endo who is the only great doctor I've ever known,she didn't either. U either r or u r not. Better to halt the progression early. Than waiting for damage to be done... It's a great usually safe drug,assuming you're kidneys r healthy! Drz,its interesting to me that when all my symptoms came on,I was on metformin,with good numbers,and wow over night it stopped working for me,and my numbers went high. My kidneys I noticed right away with all this. Pale healthy colored urine,to overnight like ice tea with bubbles. Doc wasn't concerned here either! Urine should never be dark,and no foaming or bubbles,as that's a sign of protein leaking out.... Deb. Missing my endo,the only real doctor I've ever known.....

[drz]

Drz,hi! Wow, for real? Met is mainly broken down in the kidneys,that's odd... It's to bad to,cause its the one drug,I believe in. I don't buy the pre diabetic bull,thank God,my endo who is the only great doctor I've ever known,she didn't either. U either r or u r not. Better to halt the progression early. Than waiting for damage to be done... It's a great usually safe drug,assuming you're kidneys r healthy! Drz,its interesting to me that when all my symptoms came on,I was on metformin,with good numbers,and wow over night it stopped working for me,and my numbers went high. My kidneys I noticed right away with all this. Pale healthy colored urine,to overnight like ice tea with bubbles. Doc wasn't concerned here either! Urine should never be dark,and no foaming or bubbles,as that's a sign of protein leaking out.... Deb. Missing my endo,the only real doctor I've ever known.....

Metformin is not metabolized but is secreted in the urine.

See this link for more info: DrugBank: Metformin (http://www.drugbank.ca/drugs/db00331)

[debra]

Drz,hi. Yes but still hard on kidneys,especially if they ralready taxed. Wow,I just looked at that and the liver side effects,which I never Realy paid much attention toecause up until all this,my liver numbers where perfect... Makes sense though ... Deb.

[annekat]

Spiritscript, to answer your question about biopsies, yes, the nasal biopsy is easy to get and MAY give a definite, positive result. It did with me. BUT if you have all the signs of Wegs, such as collapsed septum, and the nasal biopsy gives a negative result, it should be suspect, and biopsies should be taken other places, such as the lungs or kidneys, where you indicate you do seem to have involvement. There is no excuse for docs just sitting on their hands the way yours seem to be doing. You and Debra in NH do indeed seem to be in a similar situation. You both need better doctors, not only rheumatologists but all the others, too, depending on your involvements, and ones who are ready to take action, find whatever outside resources they may need, and quit fiddle-diddling around! It makes me angry to hear about these kinds of docs. Teri said it best in her post above!

[Middlesista]

Needle biopsy of lung - not helpful and I ended up with serious complication. They went by my symptoms and blood work to start treatment and the fool biopsy was for naught plus the tissue was not "good" enough to to pull a path report on. Ended up with nothing but a huge lung problem that is not related to GPA directly and my lungs were working fine prior to that biopsy

Teri had excellent information and is on point.

Spiritscript - please do the best you can to make them listen to you - give your docs the name and phone number of docs that know this disease. You are so worth their time and consideration.

[crowneagle]

I am praying for you. Does your son have any brothers and sisters? My best friend has two Aspergers in his direct family. They really are great
people.

[gilders]

Another vote for kidney biopsy. Even if you don't have Wegener's the biopsy may indicate why you have renal failure stage 3.

[drz]

My kidney problems were identified by lab results, not my biopsy. That just confirmed the presence of Wegs.