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peachyhugsgina
01-30-2010, 05:40 AM
My name is Gina , and I am 56 yrs old. I recently moved and changed rheumatologists as a result. My new rheumatologist , of course, drew her own labs for her own evaluation of my signs and symptoms. I have been diagnosed with sle or lupus, and fibromyalgia. The lupus is in a major flare, and the fibro is also flaring. What brought me to this sight is that one of the blood tests she drew was an antiproteinase 3 blood level, and it was elevated at almost 6.. I think the actual number was 5. 9 .. At this time, she cant confirm Wegeners but says she is watching me for more development of this disease.. which I have very little information about, and haven't been able to find much written on this disease.
I recently had a very severe upper respiratory infection that involved my sinsuses, ears, throat, and bronchial infection in my lungs.. asthmatic bronchitis according to the pcp. However, the rheumatologist is wondering if my being on the methotrexate injections and moving my dosage upward each week for the 4 weeks prior to my becoming sick is an indication of Wegeners, or a reaction to the mtx. She is talking about changing the mtx to cytotoxan if I become sick again within the current month.
My symptoms of Wegeners are the antiproteinase 3 test being elevated
recurrent bronchitis
recurrent sinusitis
fatigue
joint pains
itchiness
night sweats
occasional low grade fever
recurrent nasal ulcers

I would appreciate any feedback that anyone feels free to give.
Thanks
Take care
Peachy hugs,
Gina

Jack
01-30-2010, 06:21 AM
Hi Gina,
It certainly sounds like Wegener's, but the most defining test is biopsies taken from the affected areas - nose, lungs etc.
You really need to get a definite diagnosis as quickly as you can because Wegener's can cause you big problems if not treated correctly (like killing you). Make sure they keep an eye on your renal function, failure has few symptoms until it is too late. I speak from experience! :(

peachyhugsgina
01-30-2010, 06:23 AM
Jack,
Thanks.. I may have to find a wegs specialist.. I am in Georgia, and will drive wherever I need to go .. probably Mayo in Jacksonville is closest to me..
Take care [
Gina

elephant
01-30-2010, 07:49 AM
Hi Peachyhugsgina, I live in South Carolina and drive to Cleveland, Ohio and go to the Cleveland Clinic to see a Wegeners specialist ( Rheumatologist). Your symptoms sound like Wegener's Disease. I would go to the Vasculitis Foundation web site and look up a Wegeners specialist... really it will save your life and being misdiagnosed and taking the wrong meds....been there done that multiple of times....very long story.
Please, I know it sounds overwhelming to go to a Wegeners specialist especially far away...going once will make a world of difference and you won't be wondering....
I truly wish you the best and welcome.

Sangye
01-30-2010, 02:43 PM
Hi Gina,
Welcome to the group! Thank you for listing your symptoms so clearly--easy to follow! I agree with Jack and Elephant. Please find a Wegs specialist asap since your symptoms are highly suggestive of Wegs. I'm glad to hear you're willing to travel for proper diagnosis, etc.... I go to JHU in Baltimore.

It can take weeks to get in to a major center, so I suggest you get on it first thing Monday morning.

Dumpy
01-30-2010, 02:56 PM
Hello Gina,
Everyone here will be pulling for you. I don't know which side of Atlanta you live on but there is a very good Wegs specialists in Birmingham, Ala. at UAB. The doctors name there that is head of the Wegs research team is Dr. Barri Fessler,she is very good. I went to see her the first of Oct. last year and it was well worth the trip and I think it is only about 2 1/2 hours away depending exactly where you live. If you decide to go there let me know and I will get the phone number for you.

JanW
01-31-2010, 12:52 AM
Hi Gina: like Gina said, there are wegs specialists at University of Alabama Birmingham -- it in fact was one of the place that the ran clinical trials for rituximab for WG -- which is now being used with some success and docs seem very excited about. I agree with the others that you should have your kidney function looked at and of course complete CBC and Chem panels which she will need to know to start you on any drugs. I don't know much about the overlaps between fibro and SLE and WG however in terms of symptoms -- maybe others can be more helpful. Others are right, the biopsy is gold standard, unfortunately nasal and throat biopsies frequently fail in that they can't get enough tissue. My doc explained to me that my case was clear enough (I have a saddle nose and subglottic stenosis two rare, but textbook, symptoms) and I had positive anca and elevated P3, to put aside a biopsy for now (they will try to biopsy the material they take off my stenosis, but the ENT has his doubts that will be successful.

Doug
01-31-2010, 06:50 AM
Gina ~ I'm with the others: it sounds like WG, but needs to be confired with nasal and lung biopsies, perhaps a kidney biopsy if you show evidence of kidney involvement, too. (This is the "severe" form of WG, though the form without kidney involvement isn't necessarily any less difficult to deal with!) Welcome to the forum! http://vasculitisfoundation.org/ This link will take you to reliable information on Wegener's granulomatosis, but I recommend you also familiarize yourself with the nature of the tests ordered for you so you can better understand the course of your treatment and keep up with "doctor talk" when you go in for evaluations or appointments where your doctor is reviewing your latest tests.

peachyhugsgina
02-02-2010, 06:27 AM
Hi Dumpy,
Dr Fessler sounds like she is the closest Wegs specialist to me at UAB. I am 30 miles southwest of downtown Atlanta.. so probably no more than a 3 hour trip one way. I would like the number and address for Dr Barri Fessler. Thanks for letting me know.. because the next closest place to me is Jacksonville , Fla.. Mayo clinic.
Take care
Peachy hugs,
Gina

Sangye
02-02-2010, 07:07 AM
Sweet! That means I can cross your name off my "Must Nag to Get a Wegs Specialist" list. :D

jola57
02-03-2010, 02:43 AM
Sangy, am I on the list LOL? Gina, I agree with the others it does sound like Wegs. The only true way to find out is by a biopsy. I hope it proves not to be since you have enough on your plate even now.

peachyhugsgina
02-03-2010, 03:56 AM
I called Dr Fessler's office at UAB, and was told that I need to get my rheumatologist to make a referral for me. That is next on my agenda.. to get my rheumatologist to make me a referral so I can get in to see her or the other doctor mentioned.. Dr Robert Kimberley, also a Wegs specialist at UAB as soon as an appt is available. This is a 3 hour drive for me one way, but may well be worth the drive to get someone who is familiar with Wegs and maybe give me some definitive answers.. my rheumatologist isn't saying for sure I have Wegs but she isn't say I don't.. she says she is watching me for more signs and symptoms of Wegs before she can make a definitive diagnosis. So this is where I am, having lots of signs and symptoms of Wegs, elevated antiproteinase 3, and etc..
Take care and thanks for all the suggestions thus far.. I start back on my methotrexate injections on Thursday.
Peachy hugs,
Gina

JanW
02-03-2010, 04:03 AM
I would imagine that given that you have other AI diseases a definite diagnosis without biopsy could be challenging. Hang in there and I hope you get your referral soon!

Sangye
02-03-2010, 04:52 AM
Jolanta, I have you on my partial nag list. I'm still wondering if you've contacted the VF to see if any of the consultants in the US can work with your docs.

JanW
02-03-2010, 05:01 AM
Heh...I love the idea of a partial nag list!

elephant
02-03-2010, 06:22 AM
Gina, I would definitely see the WG specialist, I would not wait for more symptoms, you can have silent damage going on ( I did and now it's permanent). The Wg specialist will be give you a more definitive diagnosis and it could be great news (No Wegeners Yippee). I had to get that whole nag in. How much methotrexate are you on? Prednisone?
Gina, could you get someone to go with you to see the WG specialist at UAB? You could make a day of it and go out to eat or shopping or whatever.

Sangye
02-03-2010, 09:51 AM
Gina-- I agree with Elephant. Don't wait-- get to the Wegs doc. Believe me, you really want to get off my nag list. :D

Dumpy
02-03-2010, 11:40 AM
Gina sorry I didn't get back to you sooner with the info but I know you are looking for relief as soon as possible. I was fortunate to have a pulmonogilist who had me diagnoised already and called in for the referal to Dr. Fesseler. Maybe you could ask your rheumy to send you a referal along with the test results that he already has. Just do what ever you have to to get in to see Dr. Fessler. If UAB is where you go allow yourself about 1 hour in Birmingham to get around if it is any time close to traffic hour.
The Address is
UAB
Kirkland Clinc
2000 6th Ave. South
Birmingham, Ala. 35233
I hope you can get in because Dr. Fessler is a great doctor. Let me know if there is anything that I can help you with.

peachyhugsgina
02-05-2010, 01:50 PM
Hi Hi Hi elephant,
I plan to ask my pcp and my rheumy for referrals, depending on which one I see first. I also have an upcoming appt with my allergist/ immunologist.. so shouldn't be that hard to get in to see. I have just started methotrexate injections.. was up to .6cc when I became so ill 3 weeks ago with the uri and asthmatic bronchitis, ear infection, sinus infection, and etc. She started me back on mtx today at .3 cc and says we are going to stay at .3cc for the next 4 weeks, and see if I get sick again. If I get sick again, and she thinks the mtx may be causing me to get sick, she wants to change me to cytotoxan. I see my rheumy again in 3 weeks. .. so we will see what happens.
Thanks for the suggestions.
Take care
POOeachy hugs,
Gina

elephant
02-05-2010, 01:58 PM
Good Gina, I hope you get in soon. I know it's one day at a time with all these lovely drugs we take. Hope the metho works. Hang in there. :)

peachyhugsgina
02-05-2010, 02:07 PM
Elephant
I sure hope the mtx works too.. really don't want to be on the cytotoxan if I dont have to be. I am not on prednisone at this time.. she opted to not put me on pred, as I have quite a bit of bone loss.. not osteoporotic yet, but close. I had reclast IV in Nov.. so we will see what that got me as far as bones. I am also on 200 mg plaquenil twice a day for the lupus, and amytryptiline to help me sleep when the fibro causes me to have insomnia..
Tahnks
Gina

Jack
02-05-2010, 06:06 PM
If your doc thinks your condition warrants ctx I'm very surprised that you are not also being prescribed steroids. Loss of bone density is not a reason to hold back, if you need them, you need them and that is that. I have severe osteoporosis (I max out on the rating scale!), but can't get by without 10 mg of pred. I would if I could!

peachyhugsgina
02-20-2010, 08:55 AM
I saw my pcp today, and related what the rheumatologist told me at my last visit. She isn't sure I have wegeners and she isn't so sure that I don't. She wants to follow me closely for a few more months. She restarted the mtx about a month ago at .3cc weekly, and drew lab work yesterday, and increased me up to .4cc.. not sure how long I will be on this day. My pcp wants me to ask the rheumatologist to refer me to the Wegs specialist at UAB, but if she won't for some reason, then my pcp will give me the referral I need in able to be seen . I am hoping that I can take along a friend when I go, get a hotel room, spend the night, and drive back the next day.. it is about a 3 hour drive one way for me, and with the other autoimmune disorders, I am sure I am going to be very tired just making the trip one way. I am not on prednisone at this point, She is still increasing the mtx , but more slowly this time due to the severe infection I had about 5 weeks ago now.. I am still very wheezy on the right side, according to the pcp today, and she wants me to continue using the inhalers, and when at home, the nebulizer a few times a day for awhile at least. I will get more labs in March. I see my rheumatologist again next week, and will get the results of the labs she drew yesterday .
Take care
Peachy hugs,
Gina

Sangye
02-20-2010, 09:02 AM
Gina, Please just get to the Wegs doc any way you can as soon as you can. There's no way this PCP can diagnose and treat Wegs.

JanW
02-20-2010, 09:03 AM
Gina -- I also hope someone is monitoring your liver function closely with taking mtx because I never even made it to a therapeutic dose before the doctor stopped me due to increased liver enzymes -- I had no noticeable physical side effects whatsoever.

elephant
02-20-2010, 09:27 AM
Gina, I don't mean to be a nagger or poop face....but you still have wheezing. That alone concerns me. You really need to be in sooner. Like the rest of the crew on this forum methotrexate can be toxic to the liver and lungs ( infiltrates). I just hate to see you go down hill fast......I understand that you are not feeling well and it can be so overwhelming! I have a dirty little secret....I WAITED To long to see a Specialist!!!!! Diagnosed in July 2008 and finally saw one on Oct 2009! Thank goodness my local Rheumy called the specialist I see now March 2009. So in retrospect I feel so stupid that I waited too long....because I'm a RN....Don't tell anyone...

JanW
02-20-2010, 09:47 AM
elephant: I think there are many stories where people feel as though they waited too long. I first saw the words "Wegener's Granulomatosis" in May 2009 in a CT scan report, and yet didn't push my pulmo when she said I don't really think you have it...I never followed up with a rheumotologist on my own to get a definite rule-in/rule out diagnosis. It was only when my foot didn't heal -- and a second set of preliminary bloods showed a clearly rising SED, CR-P and RA factor rate, that I knew I had to get in to a rheumy right away -- luckily for me being in NYC, I was able to see someone who specializes in vasculides at a teaching hospital. One week late, definite diagnosis of Wegs. Six months and one saddle nose deformity later.

Sangye
02-20-2010, 09:53 AM
Your secret is safe with me. Hey, I waited ONE YEAR to see a medical doctor to even diagnose the Wegs. I wouldn't even go to one for a physical. It was a big ego thing for me, thinking holistic medicine was all I ever needed unless I broke something or needed emergency surgery.

This is what makes good nags, though. We try to keep everyone from going off the same cliffs we did. :)

peachyhugsgina
02-21-2010, 04:45 AM
Thanks for all of your responses. I am concerned that she is hearing wheezing on my right side still.. I have a cough that won't go away, although no fever, or other sign of infection at this time. I do, however, keep coughing up some really thick white phlegm from time to time.. is this enough to warrant concern with my anti proteinase 3 being elevated, and the other symptoms, plus having had the severe asthmatic bronchial infection less than 3 weeks ago. I am sure that between the hematologist, the rheumatologist and my pcp, that my liver functions are being tested on a regular basis.. that is part of the profile that the hematologist tests every 2 months. I am not sure what the rhuematologist is drawing.. some panels, and a Vit D level I was told. I am seeing my rheumy this Thursday and will request a referral to Dr Fessler at UAB.
Take care
Peachy hugs,
Gina

Sangye
02-21-2010, 05:06 AM
Those symptoms are definitely concerning, Gina. The absence of symptoms that indicate infection is always alarming for a Weggie. Glad you're headed for UAB.

elephant
02-21-2010, 08:34 AM
Gina , I think it is so important to get in there real soon. You are not on prednisone, so that would cause more inflammation to the lungs....I was told by my Rhuemy, pulmonologist and ENT that I can't ever get off prednsone. My local Rheumatologist just realized this at my last visit. Since I have involvement in the lungs and sinuses ....plus damage.....I will always be on Prednisone. Your disease sounds active...and just methotrexate alone won't do the trick. Glad your seeing the Rheumy soon.

Dumpy
02-21-2010, 01:32 PM
Gina, it sounds like you are headed in the right direction going to UAB. You will not regret it at all and you will really like Dr. Fessler. We all wish you well and will be pulling for you. Don't ever stop pushing to get the best treatment because this BFF will not stop trying to put you down if you let it. I was missed diagnoised in July 07 and was put on Prednisone only and it helped for a short while until the pulmonoligist started taking me off of the preds in Sept. and that is when the Wegs really took over and took its toll on me and it wasn't until Feb. 08 that I was diagnosied with Wegs but a lot of damage had be done to my sinus and lungs by then. Just trying to nag along with the rest because we all know how damaging our BFF can be.

JanW
02-22-2010, 02:58 AM
Gina - I think that whatever people say here -- you should be on pred, off pred, on cytx, off mtx, or whatever, the most important thing is that you get treated quickly..I was watching the videos on the VF site and there was one about pharmacology where what the doc said really stuck out to me. He said something like, "I know you're all asking one another -- what are you on, what are you on?, and what you all have to realize is that in a vasculides, each patient is fairly unique -- there's no one way to treat any of this stuff." You may see many people on this site being on the same or similar protocols, and if you are a different protocol I don't that's a sole reason to be concerned -- if you are being treated by a specialist, and if you are being monitored very frequently so that if anything is going south you are never far from seeing a doctor about it. You may lose nothing if your non-specialist doctors wait a few months to figure out whether you have WG, or you may do permanent damage to yourself. You really can't tell. Which is why it is important that once you are in the system, you move quickly to diagnosis, and to a specialist who can manage your treatment for you. You need a medical team leader to fight this disease.

Jack
02-22-2010, 03:12 AM
Agree with everything said above. There are lots of different treatment regimes described on the forum that are working for the individual involved for whatever reason. However, I think most would agree that a combination treatment consisting of steroids and immunosuppressants is required to control Wegener's, so when someone is not taking these and showing active signs of the disease we get concerned.

peachyhugsgina
02-26-2010, 07:00 AM
Today, I saw my rhuematologist. she is also concerned over the wheezing in my lower base of my right lung. She wants a CT of my chest asap with and without contrast. She is hoping that the imaging center will get a pre authorization, and set me up for an appt on Monday by tomorrow afternoon. She is also thinking that if I continue to show signs of Wegners, the mtx may not be the correct medication, and we may have to go to a more potent drug, like cytotoxan. She also is willing and is currently having her staff contact the Weg's specialist at UAB to see me.. she will fax my records, labs, any xrays, and of course, the results of my impending CT scan to them so that they have all the information when they see me.. sooner than later, we hope.
Take care
Peachy hugs,
Gina

Jack
02-26-2010, 07:27 AM
Gina - sounds like you are moving in the right direction, but I would urge you to push for seeing the Wegs specialist as soon as possible. If you do have this disease, the sooner it is diagnosed and treated properly the less damage you will have.

JanW
02-26-2010, 07:43 AM
Sounds like you are moving in the right direction. A couple of questions -- how long have you been on mtx? My rheumo was indicating to me that it will take a little while to work -- in other words effectiveness measured in months, not weeks, of symptoms and lab values going in the right direction (although he looks at symptoms more than values). Over that time they are increasing the drug as well as monitoring your liver enzymes frequently.

And a word about constrast -- one of the specialists on the vasculitis website talked about getting CTs with contrast -- and how Weggies should avoid this if at all possible (simply for the reason that you are putting an unpredictable thing into your system, which is already unpredictable based on the fact that you have this disease). I refused contrast for a chest CT prior to being diagnosed with WG -- because I was a highly allergic person (really, the allergy symptoms were symptoms of wg, but I didn't know that), and when I refused the radiologist said he really didn't need it and didn't know why pulmos were so quick to order them anyway. He assured me that everything could be seen just as well without constrast. The good news is, however, that if your doc has ordered contrast she has already no doubt ordered a kidney function test for your BUN and Creatinine levels, so you get a free kidney check out of the deal.

Sangye
02-26-2010, 09:08 AM
Gina, I'm glad your rheumy is taking action. I'm with Jack, though, and suggest that you really push for an appt at UAB asap. You rheumy can do that very easily. It sounds like she's very willing to help you get the best care.

elephant
02-26-2010, 10:32 AM
Gina good luck and like the rest stated you are heading in the right direction. Hang in there your going to make it. :)

peachyhugsgina
02-27-2010, 01:51 PM
I forgot to mention that the other reason the rheumy wants the CT of the chest is that I am coughing up thick white plugs of phlegm at times, not constantly. She did ask if I had fever, and I haven't had fever that I am aware of, and if I was coughing up blood, which, so far I haven't. I have developed some sores inside my nose again, and that concerns me, as I have had this problem.. nasal ulcers off and on since 2003. I have been on all kinds of ointments to apply into the nose, antibiotics, anti fungals, anti virals, and none of the above corrected the problem. I called the imaging center today, and they had not gotten a fax from my rheumatologist office requesting to set up a CT. That is probably a good idea to refuse the contrast, especially since I am very allergic to many things, as well as hard to start an IV on.. I actually have a port a cath in place because I am so hard to stick.
To answer the other question, I have been on methotrexate injections since mid Dec. I was very ill in Jan for 3 weeks, and was off the methotrexate, and started back in early Feb.. so almost a month again. However, the rheumy is very slowly increasing my dosage, and I get blood draws once every month, the week before my appt with her so they can have the results back when I see her. So far, my kidney function, liver function, and blood counts are stable .
I will call the rheumy's office again Monday morning, and ask them to please start the process for setting up the appt for the CT scan and the referral to UAB with Dr Fessler. I will keep in touch.
I forgot to add that I had 2 plus pitting edema in both my lower legs,and that seemed to be a bit of concern to the rheumy as well. I have had edema for several months.. drink lots of water, have normal blood pressure, normal kidney function, and etc. She said she didn't want to treat the edema unless I started having blood pressure or kidney issues.
Take care
peachy hugs,
Gina

Jack
02-27-2010, 06:36 PM
nasal ulcers off and on since 2003. I have been on all kinds of ointments to apply into the nose, antibiotics, anti fungals, anti virals, and none of the above corrected the problem.
That is because they are a symptom of Wegs. Get that sorted and the problems will go away.
Easier said than done I know! ;)

JanW
02-28-2010, 01:34 AM
Yes, nasal crusting and ulcers are pretty much a classic symptom of WG nasal involvement. Why is your doc giving you mtx by infusion rather than pills, especially if you are hard to stick? Just curious. Good luck with your CT...even if it shows nothing (and mine showed the slightest of groundglass nodules, practically non-existent) don't let that rule out the WGs...that cost me more than six months of a delay in diagnosis.

elephant
02-28-2010, 01:40 AM
Gina, sounds like active signs of WG. Also with pitting edema, need to check the heart too. Gina, you are doing great being persistent.

peachyhugsgina
02-28-2010, 01:44 AM
I had gastric bypass surgery 10 years ago, and have a short gut, with a great deal of malabsorption. I am not getting mtx infusions, but injections weekly. The rheumy feels that I won't absorb the pills very well, and the injected is a better delivery method for the medication for me.

peachyhugsgina
02-28-2010, 01:45 AM
I probably should mention the pitting edema to my primary care doctor and get a referral to a cardiologist as well, since we have moved and my old cardiologist is booked into next year, and over 2 hours away. I probably should have one closer by.

JanW
02-28-2010, 02:09 AM
Always a good idea to get baseline heart tests with WG. I just had my first EKG (having surgery next week). Even though the surgeon didn't require it, my rheumo did because of my diagnosis before he would write the letter clearing me for surgery.

Sangye
02-28-2010, 12:24 PM
Gina, definitely get the edema thoroughly checked. It may be caused by active Wegs but all other causes must be ruled out. You should have an echocardiogram done annually if you have Wegs, no matter what areas are involved. Heart involvement is not common, but it occurs silently.

LisaT
06-06-2014, 11:35 PM
And another post from Danny-with-no-Wegs in a thread mentioning gastric bypass. Danny this is not a site to sell products or solutions.

Alysia
06-07-2014, 12:40 AM
Can you please share here some more symptoms of wegs?

GO TO HELL DANNY :predrage:

Alysia
06-07-2014, 12:41 AM
And another post from Danny-with-no-Wegs in a thread mentioning gastric bypass. Danny this is not a site to sell products or solutions.
Lisa, Jack passed away more then a year ago :crying:

drz
06-07-2014, 01:13 AM
Can't we have this guy removed and all his posts deleted?

Alysia
06-07-2014, 01:48 AM
Can't we have this guy removed and all his posts deleted?
Hi drz.
I wrote yesterday to vdub and today to andrew. I hope they will do it soon.

annekat
06-07-2014, 11:26 AM
Well, maybe they did it, because I don't see the post! Or did I miss it somehow? Oh, now I see it quoted in your post, Alysia. But no original post. Good job, Alysia!

Alysia
06-07-2014, 03:55 PM
yes. they did Kick him out. thanks andrew :thumbsup:
now, I wonder if we should delete our posts here because they are no longer relevant to this discussion.... but then maybe the troll send some PM to the people on that thread, I am thinking "aloud" while writing... ok then, I will write down these:
If anyone is reading this thread and does not undersand what is going on in the last 2 pages it is because we had here a troll which was trying to sell something and abused the site. thanks to our genius andrew he is off now. but if he messaged anyone, be careful from him.
done. whew. :)

annekat
06-08-2014, 12:08 AM
I don't think he can send any PMs as long as he's not a member. Nor can he browse the archives. But he can read the forum as a guest and see what we wrote about him. I doubt he'll even bother.... he'll be on to messing with other forums.

Alysia
06-08-2014, 02:43 AM
I wrote it just in case he already did send.