New Here!

[Chris G]

Hello all. I'm newly diagnosed - November 2010......and glad to join your group! My first flare occurred in 2007, and resolved (or went to sleep) by itself after I had seen about a dozen (clueless) doctors. I was not diagnosed at that time.

Now, they're saying "suspected" Wegener's because I have not yet allowed a sinus biopsy (the ENT said he would need 5 or 6 large biopsies, under general anesthetic). From all I've read, sinus biopsies are notoriously inaccurate, and the invasivness of this surgery scares me to death!

Upon my initial meeting with the ENT, he scoped my nose, sinuses, throat, etc., and considering the multitude of other symptoms which point toward WG, he said he was comfortable with a WG diagnosis, based upon what he could see with his eyes. The crusting in my nose at the time was pretty heavy! Other symptoms were: years of chronic sinus problems; eustachian tube dysfunction; ear infection; hearing loss; scleritis; cough; loss of voice; shortness of breath;unbearable fatigue; night sweats; light headedness/dizziness; can't concentrate (surely there are others I've forgotten). And I guess I'm one of the few P-ANCA positive cases - probably another reason they are pushing for a biopsy.

I have no kidney involvement at this time. There is one tiny nodule in one of my lungs that they will keep an eye on. I take MTX, pred., and Bacrtim. While trying to lower the pred, some of my symptoms are returning, in mild form. The rheymy is talking about changing meds as the MTX is likely not working well enough.......but again, she's pushing for biopsy confirmation.

The most troubling symptom I have at this time is the pressure in my head........light headedness (feels like my blood pressure is thru the roof, but it's not), and absolute inability to concentrate! Sometimes I feel like I shouldn't be driving. I feel as though I've had 2 glasses of wine on some days. Can anyone tell me if light headedness & trouble concentrating common (or uncommon) symptoms of WG? With treatment, these symptoms had improved, as did my other symptoms. But now they're scaring me.

Oh gosh....sorry so long and BORING - I promise to be less wordy in the future! Any info would be so appreciated!!
Chris

[Sangye]

Hi Chris, welcome to the group! It sounds like you're not under the care of a Wegs specialist. Where are you located?

The light-headedness and inability to concentrate could be due to the pred. What dose are you on? What do your docs say about those symptoms? Is your blood pressure high-normal?

[Kathie28]

Welcome Chris I am still new to understanding Wegners myself just diagnosed in January, however, I do have the lighhead feelings since being on Pred. I am down to 40 now but still have the drunken feelings.

[elephant]

Chris glad you are here for our support. Your story sounds a little like mine, be careful....I think your Wegeners is not controlled and you need to see a Wegeners specialist. We can advise you where if needed. Check out the Vasculits Foundation's website.

[pberggren1]

Hi Chris:

Welcome to the Forum.

What are all the meds and dosages you are on now? Do you know your latest blood work results like CRP and ESR?

I can understand if the ENT wants to do a biopsy but it sure sounds like Wegs to me. Usually the sinuses are not biopsied themselves, rather the inside of the nose is. That is why he said it would be under general anasthetic. Although he may be able to go into the maxillaries with a scope type of instrument and get samples from there, but not likely he will go that route.

I wish you the best and please keep us updated. You may need to see a Wegs Specialist right away.

[Chris G]

Thanks for the welcome!

To answer a few of the questions.........I live in Michigan, and am seeing rheumatologists at the University of Michigan. I guess do realize that they are not WG specialists, but after years of simply trying to find someone who could FINALLY diagnose me, I am just happy to have found them. I've been reading posts here on this site for a month or so, and I've seen all of your Cleveland Clinic recommendations. I plan on taking your advice there, and I will seek an appt with them shortly (will they insist on a nasal/sinus biopsy??). I'm currently taking 25mg MTX weekly, 17.5mg pred daily, and Bactrim 3 days a week (folic acid, calcium & vit. D suppliments too). Historically, I've always had slightly low blood pressure. Currently,my blood pressure has been hovering around 130/85. I believe it is higher than I'm used to because of the pred??? Labs: the P-ANCA is my only consistently positive marker. ESR was always within normal limits. CRP was elevated once - can't remember the number, but it was only a couple points above normal.

Yes, I agree that the WG is not completely under control - the rheymy does as well. She has suggested that the MTX is not as effective as hoped, and that we likely need to try a different med. This is why she has asked me to see the ENT again, for status on my nose and sinuses - and to push for a biopsy that I'm not interested in having!

I'm very concerned about the light headedness, headrushes, dizziness, pressure in my head, and trouble concentrating. These are symptoms that I had BEFORE beginning meds, and when my pred dose was at 30-40 mg, these symptoms went away. So I don't feel that being on pred caused these symptoms, I feel that they are returning because I'm lowering the pred, and the disease is not under control.......does that make sense? The other troubling symptom I've had is a tight feeling on the right side of my neck - as if blood flow to the carotid artery is restricted. This is another symptom that I had PRIOR to being diagnosed, that improved when I was on higher doses of pred, but has returned upon lowering the pred. I've had an ultrasound on the artery, and am waiting for the results. If bloodflow is restricted, I supposed that's the reason for the light headedness. But if that's not the case, I still wonder whether these symptoms sound like WG.

I feel like I'm constantly self-diagnosing! It's so frustrating, but it's what I've been doing since 2007, when I knew what I had, but couldn't find a doctor who believed me (or one who knew his head from a hole in the ground!)
Thanks for listening gang!! Any more thoughts or advice, please throw it my way!
Chris

[Hammy8241]

"She has suggested that the MTX is not as effective as hoped, and that we likely need to try a different med"

They may move you on to Mtx injections as the next stage as more of the drug is absorbed by this method than by oral. (not a problem, very easy to do and painless and despite what you may think does work). As mtx is the least bad of a bad bunch of drugs on offer, it may be better ot try this than moving to a harsher drug.

[Chris G]

Thanks Hammy. I asked whether we could increase my MTX to 30mg, but didn't even think to ask her about injectible MTX. I will ask her that when she calls me later today!
Chris

[Hammy8241]

Thanks Hammy. I asked whether we could increase my MTX to 30mg, but didn't even think to ask her about injectible MTX. I will ask her that when she calls me later today!
Chris

25mg is normally the max dose they go to with the oral. With the injection the dosage can be lower (20mg) due to the greater absorption.

[Brooke]

Welcome to the group! I have had many of your symptoms. My guess is the methotrexate is not working and you are having a flare. I was on methotrexate as well and it didn't help so I was switched to Rituxan which helped me a lot. I never asked about doing the methotrexate injections so maybe that could help you.
Good luck to you and feel free to ask questions or vent your frustrations on here!

[drz]

I had the feeling you describe of feeling light headed or faint like some one was squeezing me around the back of neck. They did a MRI I think and didn't find anything. The feeling eventually went away so I guess it was related to one of the meds i was taking at the time. The meds you are taking sound pretty routine for Wegener's disease. Unless they are really hammering you with all the heavy hitters like in a life or death situation, it can take awhile to get Wegener's under control. It can be a slow process to get it quiet. Even then it doesn't always stay that way and may wake up and start raging for reasons we never know or understand. The key is to keep reacting to it in a way that will quiet it down again while doing least harm to your body and lifestyle. Welcome and best wishes for better health.

[gurinbasra]

Hi Chris, welcome to the group. After reading everyone's responses, my input is that from own experience, if you've got it in your sinus area, keep in mind the light headedness & pressure feeling in your head could be with the Weggie dog running around in your ears (maybe the semi circular canals for balance). I felt that with the pressure thumping in my head and this only went away once I had the WG in remission and I had it seriously in my ears and am now hard of hearing. Ask your ENT dr about this - hopefully he has some experience in autoimmune disorders, and by the way, I've had two great sinus biopsies both of which were from 3 areas of my left and right sinuses which showed WG being active and healed vasculitis but then again, I think I've got the best ENT dr in the world!

Also I take the injection form of Methotrexate at 25mg/week and it doesn't bother me in the least and I'm now on 9mg of Pred - slowly trying to taper off. Maybe you need something stronger since you're on a strong doesage Prednisone anyway. I have also just had my second treatment of Rituxan which is my miracle drug.

Good luck and take care of yourself.

[pberggren1]

Who is your ENT Gurnider? Is it Hoshowsky?

[gurinbasra]

Hi,

No, it's Dr. Paul Marck. I was seeing Hoshowsky for years when I was having ear issues but we never knew at the time I had WG because they were just small issues. Finally, Hoshowsky referred me to Dr. Marck because he's considered more of an ENT specialist who's also a surgeon and he did my sinus biopsies. It took this guy two weeks and two blood tests to figure out what I had. I'll never forget the time he sat me down in his office and he had to use his very loud voice as I was extremely deaf from the WG at the time and he said, "I think I know what you have, it's called WG and I'm going to get the Rheumy who will help treat it. Now, go home and google and read up everything you can about this, but don't worry too much about the horrible stuff, you're going to be fine and we're gonna get you through this". There were many times where I'll never forget not only his technical expertise as a Dr., but his compassion, kind words and understanding of everything I was going through, not too many Dr.'s that have that kind of quality.

Did I mention that he's doing a case study on me? He's going to present it at some big ENT conference in the States in the Fall and since he's come across several WG patients in his career, I was the one that was just different in that I didn't respond to the usual medication like chemo and because I had it (have it) localized in specific areas. Of course I agreed to this because what better way to expose WG to ENT specialists from all over the world, I figure most of us begin our WG affair sitting in an ENT's office complaining about sinus issues. Anyway, once I get the publized copy, I'll post it here and then you can read up all about an anonymous WG patient!

Take care!

[drz]

Hi,

No, it's Dr. Paul Marck. I was seeing Hoshowsky for years when I was having ear issues but we never knew at the time I had WG because they were just small issues. Finally, Hoshowsky referred me to Dr. Marck because he's considered more of an ENT specialist who's also a surgeon and he did my sinus biopsies. It took this guy two weeks and two blood tests to figure out what I had. I'll never forget the time he sat me down in his office and he had to use his very loud voice as I was extremely deaf from the WG at the time and he said, "I think I know what you have, it's called WG and I'm going to get the Rheumy who will help treat it. Now, go home and google and read up everything you can about this, but don't worry too much about the horrible stuff, you're going to be fine and we're gonna get you through this". There were many times where I'll never forget not only his technical expertise as a Dr., but his compassion, kind words and understanding of everything I was going through, not too many Dr.'s that have that kind of quality.

Did I mention that he's doing a case study on me? He's going to present it at some big ENT conference in the States in the Fall and since he's come across several WG patients in his career, I was the one that was just different in that I didn't respond to the usual medication like chemo and because I had it (have it) localized in specific areas. Of course I agreed to this because what better way to expose WG to ENT specialists from all over the world, I figure most of us begin our WG affair sitting in an ENT's office complaining about sinus issues. Anyway, once I get the publized copy, I'll post it here and then you can read up all about an anonymous WG patient!

Take care!
Then we can all give a copy to our local ENT doctors too.

[aewaustin]

Chris,

Welcome. So I put off going to see Dr. Langford at the Cleveland Clinic for about a month too long and am kicking myself for it now. She is amazing, and when I walked out of her office after the visit it was like a huge weight had been lifted off my shoulders. The sooner the better...

Also for what it is worth, I had full on sinus involvement the first time (back in 1992), and they did a biopsy in the middle of it and it did not show anything. So before you go and do that procedure I would head to Cleveland...

Anna

[Chris G]

Thanks for the info Anna. I'm on 25mg of mtx now, with significant improvement since November, but with pred now lowered to 17.5, my ear, nasal, & sinus symptoms start to return (also shortness of breath occasionally). I just saw the ENT on Friday. I told him the rheumys are pushing for biopsy because they are considering changing me to a stronger med - which drug, I'm not sure, but she mentioned the word "infusion" at one point (rituxan?). So I flat out asked the ENT his thoughts on nasal/sinus biopsy at this time. He said, that currently my tissues look to be in good condition, so if he were to do biopsies, they would be random - rather than him being able to see potentially diseased tissue, and going after it. It's likely that whatever he sampled would come back negative. So.......would this change the way they decide to treat me? He said, likely not. So what's the point, right? Also, with considerable improvement on mtx, is injectible mtx an stronger option?

Anyhow, I think if they think we need to pursue stronger meds, and I'm still conflicted about biopsies, I will seek another opinion at Cleveland Clinic. I just want a decision to be made at this point, before I start adding more people to the mix. However, after reading a couple of other new members' posts, I'm feeling worried that if I go to CC, while I'm being treated somewhat successfully, will they think I'm not sick enough? Does anyone have experience with this?

One last question.....in November I had a serious ear infection. So, my white blood count started out at about 26,000. After 3 1/2 months on mtx, my WBC has not fallen below 10,000. I do take Bactrim, so I feel sure that it's not still elevated due to an active infection. Is our WBC a reflection on whether the immuno suppressants are working?

[aewaustin]

Chris I lol at your "sick enough" comment :) So I have been really hard to diagnose this go round, thank god for my confirmed kidney biopsy from 1992. I have inflammation in my sinuses (but nothing major), a burning sensation in my legs that is intense (but not normal, and nobody knows what it is or can even find it in tests) and I have 4+ blood in my UA (starting to have more protein though). According to the labs, other than that stuff I am perfectly healthy :) I have never had an elevated SED rate or positive ANCA. The reason Dr. Langford is so good is that she has seen so many cases that she can help with those that are not so easy. This go round my diagnosis was made by looking at my red blood cells from the UA through a microscope and she could tell from that, which is a test that none of my Austin doctors did.

And infusion is probably rtx... And from my understanding mtx and rtx are at the same level of drug, those are the two that Dr. Langford recommended for me. I am not sure about pill vs injectible mtx, others on here have experience with that though.

It does sound like you are getting pretty good care though, you are lucky.

Anna

[drz]

I think "not being sick enough" is generally a good thing. It would suggest that your Wegener's is at least under partial control and not life threatening. It might also mean that any treatment changes are apt to be rather minor rather than sticking you in a hospital and having to go through every treatment option to save your life. Rituxan is consider an alternatiave to Cytoxan. those two are the heavy hitters for treating Wegener's. Maintenance therapy is usually MTX or Imuran or sometimes Cellcept. These second class drugs can sometimes be use as first treatment if case is really mild or if you are unlucky enough to not be able to tolerate either of the heavy drugs. Cytoxan and Imuran can both reduce your WBC.

[Chris G]

With my disease not being life threatening, mtx is being used to induce remission rather than the heavy hitter drugs. You say Ctx and Imuran lower WBC......does mtx not generally? I'm wondering if it can be used as some kind of indicator as to how well the mtx is working.

[JanW]

If you are getting into remission with mtx, generally they won't move you to rtx unless there is a change in condition, although, I think that in milder disease they also look for someone to come off of pred or at least get to a lower level than you are currently, so....if the immuno they have you on now, can't do that job, then it makes sense that they may want to go for something heavier (rtx).

The only times I've heard of people doing injectable mtx is because of stomach issues, not so that they can take a higher dose.

[Sangye]

I started out on injectable mtx, 25 mg once a week. I didn't even know there was an oral form.

[Sangye]

ChrisG, don't worry that they won't be able to properly evaluate you at a vasculitis center if you're doing okay at the moment. They really know their stuff. They see people in all stages of disease. The most important thing is to get there as soon as you can. If you wait until you're in crisis you might not be able to go.

[Brooke]

I took the oral form as well.