Well, this is new ...

[NikkiNicole]

First, let me say that I haven't been able to see the specialist at UCSF yet because Kaiser will not pay for it. So, there's now the discussion over what it's going to cost and if I can pull it off.
OK, back to the original reason for my post. I woke up in wee hours of the morning Thursday 05/16 unable to move my left arm. My shoulder felt as if the bone was exploding from the inside. If I tried to roll over, even without using my arm I cried out in pain. It was useless. I woke up, called the doctor but was able to get some movement back (albeit painful) and decided to wait it out figuring I slept wrong. Fast forward to last Saturday morning, I woke up with the same excruciating pain in the same arm. Now, I'd been having ankle, wrist, elbow and knuckle joint pain for some time now ... but this was the first two times I'd ever had anything with my shoulder.
Then ... Thursday night again, I woke up unable to move either arm. My elbows and wrists throbbed, my ankles were throbbing. I was in agony.
The agony continued all day long. I was barely able to wash my hair once I got movement back.
I called Kaiser, saw a different PCP since mine was out ... he ordered a CRP and ESR blood test, gave me an injection of Toridol to ease the pain and ordered me two rx's ... 800mg of Ibuprofen and Norco. He looked at what I was saying plus all that was in my chart and said "I think you need to get back into that rheumatologist - there's something far more complicated going on here."
I've got the results back from the ESR. It's double the highest normal range. CRP isn't back yet but obviously it will show something if the ESR is. Ugh ...
I emailed the rheumatologist and said ... "dude .... what gives?! something is wrong!" OK, not those exact words but close. I'm miserable.
My face is always hurting. My nose gets these random shooting throbbing pains, my cheeks ache, the left temple feels like it's being stabbed, my gums in the front even get the throb going. I cough and cough and cough, (post nasal drainage most likely) and I cough up bloody mucus, I feel run down ALL the time. I can't deal with this anymore.
Every day I feel a little worse.

[carriej22]

Yep; this was me. I never felt that pain before; and I haven't felt it since. I was in so much pain I was unable to walk or even roll over in bed; or go to the bathroom unassisted.

I hate to say it; but prednisone fixed the pain. Are you on prednisone?

[NikkiNicole]

Unfortunately, I was diagnosed ... and then undiagnosed because they didn't find it in my tissue sample. It seems it's mostly sinuses that are killin' me and they have NOT done a sinus biopsy so it's only natural that they didn't find it in my lungs. However, the symptoms have continued to worsen as time has gone on. I've never been this miserable in my life.
I'm the kind of person who would work through those horrible colds, who would only be knocked down for a day with the flu.
I'm still pursuing this as ... when I was initally given the diagnosis, it made perfect sense! Now? My rheumatologist doesn't want to think I have it. So I'm fighting him constantly.

[carriej22]

You should fight it for sure; my rheumy told me something like 50% of biopsies are inconclusive. They took a skin biopsy from me of one of the vasculitis spots (for lack of a better term) and of course it showed because the took the actual lesion itself. I was also pretty much dying; so they had to act fast. However I spent months in the hospital with weird pain, sinus problems, ear infections etc. Then my lungs started to crap the bed along with my kidneys and then they were like "Ok. We know what it is". I think if I could have been diagnosed months sooner; I would have been able to avoid all the garbage I went through.

Good luck on your adventure. Hopefully you can get some answers.

[marylz]

How frustrating for you!! I was not able to be biopsied for a diagnosis either, but my docs have gone ahead with treatment, with my agreement, as though I have. Sorry you have to go through all this pain!

[annekat]

This seems really wrong. I have heard good and bad things about Kaiser. I had Kaiser when I was in CA. But not with Wegs. Now I'm thinking only bad things. You have a right to see a specialist, somehow, I would think. Maybe one of your docs could at least consult with one? According to what I've read on here, that might not cost anything. I wonder if there is a contact at the Vasculitis Foundation who could help you figure out how to get this accomplished. And as I remember, there were also one or two specialists on their list located closer to the Stanford area. You need another opinion or two. And it seems to me they should be willing to authorize a nasal biopsy, since that's where your current problems seem to be. I really don't understand this and find it very frustrating to know that you are going through this. it seems so unfair.

[whatthewhat]

I am so sorry for your struggles.My daughter also had incredible shoulder pain. (Two months after beginning treatment she still will sometimes say "I am so glad I can sleep in any position.") A lot of what you described sounds like the course of WG/GPA in my daughter, except she also had skin involvement and anemia. I can't speak for Kaiser policies, but in our case going to the e.r. led to hospital admission which in turn led to diagnosis.

I join with others in encouraging you to keep pursuing treatment.

[Dirty Don]

In my experience, Kaiser is stonewalling you. They brought in specialists for my dad's cancer, and for my daughter's severe ear problems when she was young. They will do it, someone just needs to get over their own ego...keep after them.

[woz]

I am new to this myself, it took 3 months to find out that I had wegs, I had bad sinus, chronic headaches, all my teeth and jaw would ache, then In the middle of that, I had to have my Gall bladder, taken out. Just as I was getting over that it went to my muscles and joints, and I got red eyes. My eye doctor was the doctor who did a ANCA test. A few days later I saw my rheumy, for the first time, as I walked in her door, she said, I know what you have, and I know where you're going. Luckily for me the hospital is only 200metres down the road, even luckier for me, her husband was a ENT who was Operating that afternoon. She rang him, and told him he would have another patient on his table that afternoon, for a biopsy (which was inconclusive). He had to do a lot of reconstructive surgery in my nose, for which I am very thankful. I was in hospital for a few days, then they put me on 100mg of prednisolone, as well as 200mg of cyclophosphamide. They also picked it up in my lungs (chest xray, lug biopsy, still inconclusive).
All I can say is, keep onto your doctor, change if they are not following through your requests, If you have not had a ANCA test, I would make sure one of your doctors do one. I know it shows that you could have other auto immune diseases, but the treatment is much of the same, and the sooner the get you on some heaver medication, to slow it up, the quicker you will be able to get back to some sort of normality. Sorry this is a bit long winded, but it sounds like you are in the same boat as me. Just keep bailing, you will get on top of it soon.

A big thanks to this forum, Andrew, and all the nice people who answer these questions, and help people (like me) who have know idea whats happening to them, or what will. The support is great. Thanks woz.

[annekat]

I agree with Don, since you may be stuck with Kaiser, keep after them. There have to be other rheumatologists there and maybe you just got the wrong one. You deserve a second opinion and I think that is written into insurance contracts. Maybe you could find one at another Kaiser location who is more experienced with Wegs or at least more open to pursuing every angle in getting you a dx. And one who will agree to consulting with a VF listed specialist. I seem to remember a forum member talking about a Kaiser hospital in S. CA who was doing a good job with his Wegs. You shouldn't have to go that far, though. It sounds like the bureaucracy of the system is indeed stonewalling you, which is inexcusable. Going to the ER could indeed be an option if you continue to feel terrible and get no relief.

[Alysia]

Hi Nicki,
the ESR is indicating inflammations. you must get treatment.
I think you shouldnt wait anymore. go to ER or find good WG doc. ASAP.

[NikkiNicole]

I have had an ANCA test. I had it at the beginning of this mystery and that was what sent the doctors looking for the Wegener's. My proteinase-3 was high. However, once the minor cancer was discovered, my rheumatologist seemed to change gears ... he had said in an email to me "Since you are so symptomatic, we should start treating you for Wegener's" but then ... when Stanford said the granulomas found in my lung were infectious and not inflammation ... he completely backed off, tapered me off meds etc. However .... after that everything went downhill again and continues to get worse.
Even last night, he emailed me to say that my joint pain is most likely withdrawal symptoms from the prednisone. I wrote bacl "I've been off the Prednisone for 2 months!"
Now he says he needs to see me in my office.
I hate everything about this.
I wouldn't hate the disease so much if I just knew yay or nay that's what I had.
I am hating the process because they make me feel like such an idiot.
I see him Thursday.

[Debbie C]

Hi Nikki, sorry u r having such a had time getting sorted out with this mess. The problem is not many drs. even know what wg is and do not want to admit they don't know what's wrong with you,so they will keep coming up with other possibilities.I've learned this my going to the e.r. many times and sent hope with some ridiculous problem and given anti biotics or something. I literally have a box in my closet filled with meds I haven't taken ( quess I didn't need them after all ! ) But I sure hope you have good luck on yr appt. and if this dr. is not a wgs. specialist by all means you NEED to get one.

[annekat]

At least now he once again thinks there is a reason to see you! I hope something comes of this and he can admit that he was too hasty in writing you off. If diagnosing and treating you is over his head, he needs to help you find someone who can! And Kaiser insurance should be willing to pay for referrals to specialists outside its network, or take advantage of the free consultations available through the VF, if their own people are not equipped to deal with your case!

[drz]

Most HMO's or other captive insurance plans generally have some appeal mechanism where you can get referrals to some one competent to handle your situation when they lack staff with needed expertise. Some times the expert you wish to see can help you get the referral or sell your insurance plan on the need for referral so they will pay for it. The problem is to get the captive plan to admit their lack of competence since that hurts their egos and their profits since they have to agree to pay the expert from outside their network. Once you get the diagnosis confirmed it might be a little easier to get them admit their lack of experience in dealing with GPA if that is what you need treated.