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Brooke
01-22-2010, 05:41 AM
I saw my pulmonologist today and I had a ct of my sinus and chest, and I also did a breathing test. He said my chest ct was great but my sinus ct was not good. He said it is inflamed and thick. He wants to keep me on 20 mg of prednisone for another 3 months and still wait for the methotrexate to kick in. My breathing test is a smidge better than it was in September. I asked if my sinuses are inflamed due to an infection and he said no it is from wegener's. He said an infection would look more like fluid on the ct.
He said if I have more wheezing I could bump up the steroid but he said for my sinuses I should stay at 20 mg.

elephant
01-22-2010, 05:52 AM
Sorry to hear that your sinuses are inflammed. Hope that the prednisone works for you. Will your Pulmonologist transfer his notes on to your WG specialist. Glad your breathing test is good.

Brooke
01-22-2010, 08:06 AM
thanks elephant. I told them to send my notes and results to mayo clinic.

GARYfromBOSTON
01-22-2010, 08:18 AM
Good luck Brooke. Keep after those docs!

Sangye
01-22-2010, 03:49 PM
Well, not good news, Brooke. But if it'll keep you from a major flare, then it's worth it. Take care--

moyan
01-28-2010, 11:23 AM
Yahoo! Hi all. My wonderful gp got me an ent that got my immidiate approval. I am so lucky, it seems he asked the right questions, took his time and instructed about follow up. He even knew facts about WG!
moyan :)

Sangye
01-28-2010, 11:28 AM
That's great, Moyan. I hope he helps you get all the way better. :)

elephant
01-28-2010, 12:03 PM
Happy for you Moyan. Yahoo!

Doug
01-31-2010, 09:21 AM
Gary, I'm pleased to formally invite you to that group of us on the forum known as "The Nags"!

I propose your words as our official motto, too: Keep After Those Doctors!

Nags, what do you think to that as our motto?

Sangye
01-31-2010, 12:10 PM
Well, part of what we Nags nag about is Weggies not going into denial. So I think that aspect needs to be integrated into the motto somehow. :D

Brooke
01-31-2010, 02:08 PM
A couple of days after my appt with the pulmonologist, my ent doc called me and decided to put me on another antibiotic for 7 days. He said the wegener's is not "eating" away any more to my sinuses but they are inflamed pretty bad. I was the one who asked him if it was "eating" away any more to cartilage in my nose and he said no. Just so you know he didn't actually say that.

elephant
01-31-2010, 02:10 PM
Brooke do you take Bactrim DS three times a week?

Brooke
02-01-2010, 01:33 AM
I take bactrim on a lower dose every day.

pberggren1
06-01-2010, 01:38 PM
I see my Pulmo and Rheumy on Wednesday, June 2.

Any tips would be greatly appreciated.

I know that I am going to insist that Dr. Gary Hoffman or another Wegs Specialist be part of our team. I am going to insist that he/she gets copies of every test done and that they sign off on everything - so to speak, like getting their final approval.

I will also insist that any future CT scans have no contrast media.

I am also going to dicuss going off of Alendronate. I feel that the risks outweigh the benefits.

I am also going to discuss tapering my pred 1mg per month. Right now I am on 10mg.

I will also discuss having my plasma blood levels checked for Cellcept to see how much is being absorbed. Has anyone else had this done?

Lola
06-01-2010, 01:47 PM
You go, Phil! Armed with your lists.

pberggren1
06-01-2010, 03:27 PM
Thanks Lola.

I forgot to add that I feel like my airway has been tightening up lately. I also see my ENT on June 10.

elephant
06-01-2010, 08:47 PM
Phil, sounds like your wegeners is very active and they will not lower your predniosne, I had a small flare and my ENT told me to increase it back up to 10 mg of prednisone and I was taking 5 mg of prednisone at the time. The rest of other stuff you listed, good for you.

Brooke
06-01-2010, 11:52 PM
Phil,
Sounds like you have a good plan and good questions. Good luck at your appointment and let us know how it goes!

Sangye
06-02-2010, 05:03 AM
Hey Phil, I'm really glad to see you taking control of your care. Good for you! :)

I agree with Elephant about the pred thing, but everything else sounds great. I don't know about measuring blood CC levels. That's a good idea to ask about it.

pberggren1
06-02-2010, 01:51 PM
I just got an e-mail from my Rheumy.

She says:

I heard back from Dr. Hoffman and he thinks you have a secondary infection and if we use the Rituxan we need to prove recurrence - with a boipsy for proof - need ENT assessment as well then.

That sounds promissing.

pberggren1
06-02-2010, 05:28 PM
What exactly does secondary infection mean. Does it mean an infection due to my immune system being supressed by Cellcept?

elephant
06-02-2010, 08:42 PM
Phil that is correct. How long have you been on antibiotics? I would do a daily log starting today on how you are feeling when taking these antibiotics and see if there is improvement. This could also be Wegeners in disguise. So glad you got your email.

pberggren1
06-02-2010, 08:58 PM
Hi Elephant:

Thanks for the reply. I have been taking regular strength Bactrim every day since January and before that I was taking it every other day since about January of 2009 and before that I was taking it every day since November 2007.

I think it may be Wegs in disguise as well.

I can't link taking the Bactrim to how I am feeling.

I was on Avelox (Moxifloxacin) for 2 weeks in May and before that I was on Cefuroxime for 2 weeks. I took Avelox for 2 weeks in January and Cefuroxime for 2 weeks in October of last year.

Sangye
06-02-2010, 10:59 PM
A secondary infection means an infection in addition to another. It can happen because of the treatment or because your immune system is compromised. For example, if they're treating you with antibiotics for a bacterial infection, you could also get a fungal infection on top of it.

Dr Hoffman's note seems to be saying he thinks it isn't Wegs and before they use something like rtx, they'd have to do a biopsy to prove that it is indeed Wegs and not just infection.

They have to rule out infection since it would be very dangerous to use rtx if you had an infection. Looking at your symptoms declining for the past 7 months, it sure looks like Wegs to me, but I don't think it's possible for anyone to know without a biopsy. I'm glad your doc got a hold of Dr Hoffman and I'm really glad she gave you his exact answer.

Col 23
06-04-2010, 02:05 AM
Thinking of you Phil and hope they can sort this one out quickly.
cheers Col 23

DEE
06-04-2010, 06:24 AM
take care PHIL Hope its sotred soon DEEx

pberggren1
06-05-2010, 01:00 PM
I saw my Pulmo first on Wednesday.

I told him about Dr. Hoffman and my symptoms.

He got a copy of the CT scan for me and showed me on his computer as well. The CT showed larger and more nodules in my lungs from the CT a year earlier.

He agreed that a sinus biopsy should be done as well as a culture of the sinuses.

I then went to see my Rheumy. One of the first things she said is that I look too good to be having a flare.

She got a hold of an ENT, not my regular one, that was willing to do a biopsy of my sinuses after he got out of the OR for the day.

I then saw that ENT, Dr. Peter Spafford. He seemed a little abrupt and rushed. He said it was a hectic day in the OR.

He looked in my nose and said he didn't see any granulomas but would do the biopsy anyway. He also said that a culture was useless and would just show what would normally be growing in my sinuses anyway. He did the biopsy. I thought I would hurt or bleed a lot afterwards. Very little bleeding and just a little pain now and then. He also asked me what antibiotics I have been on lately. I told him 2 weeks of Cefuroxime followed by 2 weeks of Avelox. He asked me if I showed any improvement while on these 2. I said a little bit. He said it is most likely infection then and to make sure I irrigate my sinuses regularly and then sent me on my way.

So now we are waiting for the biopsy. My Rheumy said we wouldn't know the results until Monday at he earliest and that she would send samples away to clinics that specialise in WG.

I have a feeling that the samples will come back negative of WG.

Then I guess it will be to try some other antibiotic or a biopsy of my lungs.

I will post a copy of my CT report a little later.

Thanks again everyone.

jola57
06-05-2010, 01:10 PM
I don't know if that is good or bad news if they don't find granulomas in your sinuses. At least you would know what it is. i am seeing my ENT on 10th for my yearly checkup. I wander if my sinuses are better or worse. I will have my audio test so I can compare with last year's. It feels like its a bit better. Phil, when I was small I remember having these quartz lamps about my nose, I asked my Mom about it and she said that in Poland in the 60's it was popular to send kids and adults that had sinusitis for quartz treatments. I don't remember how many I've had but they worked and I have not had a problem since. Maybe you need a trip to Poland? :)

pberggren1
06-05-2010, 01:46 PM
That's very interesting Jolanta. Could you tell me more details about it?

Here is my CT report:

REASON: wegners? sinusitis
 
 
RESULT:
CT CHEST, CT SINUSES
HISTORY: Wegener's Granulomatosis.
TECHNIQUE: Contrast-enhanced axial imaging of the chest as well as imaging of the sinuses was performed.
20 minutes upon completion of the examination, the patient returned to the x-ray department with itchiness and hives around the face. No bleeding complications were present. The patient was sent to the ER for observation. The patient has had previous contrast without allergy however certainly these were classic hives and this was suggestive of an acquired contrast allergy. If contrast is considered in the future, the patient will need steroid prophylaxis.
FINDINGS:
CT CHEST
Comparison made to previous study of June 10, 2009.
No appreciable mediastinal or hilar lymphadenopathy is seen, and no pleural or pericadial effusion is identified.
On evaluation of the lung parenchyma, there are findings of pulmonary nodules with cavitation within both lungs. Many of these lesions do show central cavitation. The largest lesion is seen in the left lower lobe which is a cavitation lesion and measures 2.7 x 2.9 cm in size. This is markedly progessed from the previous study where it measured 1.5 x 1.8 cm in size. There are also new lesions, with a lesion in the lingula which was not present on the previous study measuring 1.7 x 1.3 cm in size. A new cavitation lesion is seen in the right middle lobe measuring 3.0 x 1.7 cm in size. There is a new cavitating lesion in the upper left lobe in the lingula measuring 1.6 cm in size. Multiple other nodules which were present on the previous study have enlarged slightly. There are also right-sided pulmonary nodules which are relatively stable. These findings are consistent with WG with new lesions with increased areas of cavitation.
On evaluation of the superior aspect of the abdomen, no pulmonary mass lesions are seen. There is lobulation of the spleen which is unchanged from the previous study. The adrenal glands are unremarkable.
CT PARANASAL SINUSES
As seen on the previous study, there is complete opacification of the left maxillary sinus with bony sclerosis and destruction. Mucosal thickening is also seen in the superior aspect of the right maxillary sinus as well as the ethmoidal air cells. The spenoid sinus is relatively clear with mild opacification at the left side. There is destruction of the nasal bone on the left which is unchanged from the previous study. As well, the anterior aspect of the nasal septum is destroyed and these findings are consistent with WG. Opacification of the left side of the frontal sinus is relatively clear. There has been mild progression in the right maxillary sinus when compared to the previous study of June 10, 2009 however apart from this the findings in the sinuses are relatively stable.
I do not see the middle on inferior turbinate on the left and these have been either destroyed or surgically resected.
IMPRESSION:
Progression of the cavitating nodules in the lungs. There is also diffuse sinus disease with bony destruction. These findings are consistent with WG.


This is mostly Greek to me so any input is greatly appreciated.

I see my regular ENT on June 10 so I will get his opinion as well and maybe get him to scope me as well.

My Pulmo also said that a boncoscopy wouldn't be a bad idea either. I think he is going to arrange this.

I have also asked my Rheumy in an e-mail if she thinks I should quit the Alendronate and get my Cellcept blood plasma levels checked to see how much is being aborbed.

I will also get my local GP to give me a requisition for a 24 hour urine and glucose levels.

Thanks again all.

jola57
06-05-2010, 03:21 PM
Ok Phil here it goes in laymens terms as much as I know. mediastinal and hilar lymphadenopathy enlarged lymph nodes are in cavity in between the lungs where blood vessels and nerves are. Granulomatosis can cause the enlargement. Effects like in TB. So good news you don't have it.
Lung parenchyma - stuff that lungs are made of. You have cavitating nodules/lesions. From what I understand the lesions cave in on themselves producing cavities - empty spaces in the lungs. It seems your cavities have grown. Wegs can do that but also infection. Sinuses have not worsened since last time.
Bronchoscopy is good to rule out infection or other reasons for the bigger cavitation in lungs.
Hope this helps a bit.

pberggren1
06-05-2010, 04:38 PM
Thank you very much Jolanta.

With a broncoscopy do they go down into the lungs past the bronchial tubes?

Sangye
06-05-2010, 11:12 PM
Phil, the words that leaped out at me on that report are: "Progression of the cavitating nodules in the lungs" which are later attributed to WG. There was a "marked progression" of one nodule. That's typical of active Wegs doing silent damage. If it's just one or two tiny nodules that appear and disappear, that can happen even with controlled WG. This looks like a general and worsening trend.

It also correlates with your generally worsening symptoms for the past 7 months. I don't think that should be ignored. Wegs activity is determined based on diagnostic tests and symptoms.

Man, I can't believe your rheumy would say you look too good to be flaring. Wait. Yes I can. I've been told the same thing, even when I was hospitalized for "pneumonia" and was flat on my back with profound weakness, sweats and was coughing up lots of blood. And my CT looked like hell. The non-Wegs docs who told me that just didn't know Wegs. That almost cost me my life. When Dr Seo heard that's what they told me, he got pretty upset.

Did Gary Hoffman see this CT result?

I'm sorry that ENT treated you poorly.

elephant
06-06-2010, 12:20 AM
Phil you need to send your CT scan of your lungs and sinuses to the WG specialist Dr Hoffman at the Cleveland clinic ( you probably can have your ENT- ask him to send them to the cleveland clinic). I agree with Jolanta and Sangye...that was the first thing that popped in my mind too! You are definitely having a flare of WG!

Sangye
06-06-2010, 12:32 AM
Why on earth would they want a lung biopsy? They already know you have Wegs with lung involvement. Every procedure carries risks and should only be done when the benefit outweighs the risks. If that were me, I'd insist on a good explanation.

pberggren1
06-06-2010, 07:23 AM
As soon as I looked at the report and saw the lesions on my Pulmo's computer I immediately thought that it must be a WG flare.

I know what you mean about my Rheumy saying that I look too good to be having a flare.

About the lung biopsy. They only mentioned it to confirm WG activity. But to me the CT scan is proof enough.

Gary Hoffman has not seen the CT yet. But I have asked my Rheumy to send it to him ASAP. I think Gary's comment will change once he sees the CT report. He said that before we need to prove recurrence if we use the Rituxan by a biopsy - will need ENT consult.

Sangye
06-06-2010, 08:17 AM
This might sound crazy..... Sometimes when they can't figure out if you're flaring it's "helpful" when something undeniable shows up. In your case it's worsening lung nodules. In mine (last summer) it was beginning to cough up blood. Otherwise a flare goes untreated, it drags on and you feel lousy day after day. And damage is done. It'd sure be nice if they could discover a 100% accurate indicator of a flare. I keep picturing something like a mood ring that turns bright red the moment Wegs wakes up. Anyone wanna invest in the research? LOL

elephant
06-06-2010, 12:34 PM
I think your on to something Sangye, when I get stressed out ( real bad stress) , I actually spiked a temp of 99.5 or 100, and that is emotional stress.

jola57
06-06-2010, 01:01 PM
Oh how sweetly easy it would be with the mood ring for wegs. Phil, in your case the problem is that the cavitating lesions seem to have progressed while your bloodwork is better (if that is true)it was the same case with me when i was spitting blood last year. Before being put back on cyclo I had lung test done. How are your blood test, is anything idicating a flare or just the lungs and sinuses? There are many reasons other than wegs for cavitating nodules this is why a broncosopy and biopsy to rule out any nasties.

pberggren1
06-06-2010, 07:33 PM
I don't know what my blood work was like for May. I go once a month and the last time I went was May 5. I only saw my ANCA and my C-ANCA was down to 7 from 11 the previous month. But I do know that in most people ANCA is unreliabe. For my 3 previous flares though the ANCA was a reliable marker. But I also know that ANCA can become unreliable as well.

I have been constantly coughing up bloody mucus and blood since June of 2008.

I know that my April white count was 13,000 and the CRP was 26, both high.

When you speak of biopsy do you mean sinuses or lungs. From what I understand doing a biopsy on the lungs is very risky.

pberggren1
06-06-2010, 08:23 PM
I just read an e-mail that I got from my Rheumy and responded to it. Here is copy of it:

Thank You Dr. Markland,

I didn't show Dr. Spafford the CT report. I felt he was rushing and didn't want to deal with me longer than he had to and just wanted to go home for the day. I don't know why he thinks a culture of the sinuses is a waste of time. I should have pressed him further and shown him the CT report. Anyway I see Dr. Franke on Thursday and will definitely show him the report. I will try and contact his office on Monday morning to get him to look at the actual CT itself so he can have a look himself of the sinus areas. I will get my GP's office to fax a copy of the report to him as well.

Thank you for the info on the Alendronate.

I really appreciate you keeping in contact with me via e-mail. I am a little stressed right now with the uncertainty of this being a flare or infections so this helps me immensely in dealing with the emotional side of things.

I came across an interesting article from the Journal of Rheumatology about Mucormycosis and how it may mimic disease relapse in Wegener's Granulomatosis. Here is link to it:
www.jrheum.org/content/37/6/1364.extract (http://www.jrheum.org/content/37/6/1364.extract)

I hope that works. I will fax a copy of it to your office just to make sure.

I highly doubt that I have Mucormycosis. It sounds quite quick and deadly.

What all did Dr. Spafford say in his note? I can't remember if we talked about having samples of the biopsy sent to other clinics for evaluation. Were samples sent away?

Thanks again,
Phil Berggren


Date: Sat, 5 Jun 2010 21:26:32 -0600
From: [email protected]
Subject: RE: PHIL BERGGREN
To: [email protected]

Hi Phil,
I have not forgotten about you by far. I just got Dr. Spafford’s note and no report as yet
Did you show the CT report as I mentioned to Dr. Spafford?
I certainly agree with follow up with Dr. Franke too and be sure to show him too the CT report.
In NO WAY should you stop the Alendronate as you are going to require even more steroids if we have need and get approval for Rituxan.
Dr. M.

Aunnie
06-09-2010, 04:13 AM
Hi Phil,
I'm new to this site and I want to wish you a quick response from your docs. I know sometimes the wait is very frustrating,but hang in there. Let us know how you make out on the 10th.
Good and healthy thoughts are being sent your way.Have you been on Rituxan before?
Aunie

pberggren1
06-09-2010, 04:58 AM
I have not been on Rituxan before, Aunie.

pberggren1
06-11-2010, 04:37 AM
I just got an e-mail from my Rheumy. She says:

"Biopsy shows chronic infection - abscess - I will see what Dr. Franke (ENT) says today and will contact Dr. Gowda (Pulmo) with these results. Mucormycosis is a possibility."

What exactly does "abscess" mean?

Jack
06-11-2010, 05:02 AM
An abscess is like a big spot. It is a collection of puss in a sack caused by infection or a foreign body. You have to be careful here because Wegener's also presents itself in the form of infected tissue, but in this case it will not respond to antibiotics and I think it is usually more generalised and not contained within a sack. If it is Wegener's, a biopsy will also probably (but not always) show granulomas. I trust your docs are qualified to tell the difference because it is so common to treat Wegener's symptoms as if they are infections. In my own case, I was treated for a chronic sinus infection without success until I was at death's door!

pberggren1
06-11-2010, 05:12 AM
I was at death's door when I was first diagnosed. The docs said before that I had a chronic sinus infection.

This abscess thing sounds scary.

pberggren1
06-11-2010, 05:13 AM
So what you are saying Jack, is that this abscess that I have will not respond to antibiotics?

Jack
06-11-2010, 06:08 AM
No, not at all. If it is an abscess then it will respond to the right antibiotic, but they might need to grow a culture to check which one is best. I was mainly trying to warn against the confusion between infections and Wegener's, but if you have already been through all the sinus infection stuff in the past, I'm sure you will be well aware of it.

pberggren1
06-11-2010, 07:25 AM
Now I get it. Thanks Jack.

I have had sinus infections since last September so I hope this is not WG.

elephant
06-11-2010, 07:43 AM
Hope you start to get the right medical treatment. Like Jack said...need the right antibiotic....sometimes they use the big gun( very strong antibiotics) like Levaquin. Cipro, ....

Jack
06-11-2010, 07:20 PM
If they try to grow a culture and fail, it may well be Wegener's. I think you should press for some analysis results from the stuff in your nose.

elephant
06-11-2010, 08:34 PM
Hey Phil I just had my ENT look into my nose (sinuses) yesterday and he took cultures...he found my left maxillary was red. It will take a couple days to find out if I have a fungi or bacteria infection....if not I know it is the WG!

DEE
06-11-2010, 09:12 PM
wg consult confirm my nose doing much better but i still have sinus issues douching still helps with that DEEx

pberggren1
06-12-2010, 08:37 AM
I saw my ENT yesterday and he put me on 2 months of Avelox. He also wants me to see a new ENT that does some special kind of sinus cleanout surgery using guided imagery, I think. He said I would be able to see this new ENT in about 1 to 2 weeks. We looked at the biopsy results together and it just showed infection.

elephant
06-12-2010, 12:53 PM
Phil wow Avelox is a very powerful antibiotic. Make sure you take probiotics and read the side effects. Two months is a very long time to be on this drug. You might want to see a infectious disease doctor to confer if you should be on Avelox for two months. Don't mean to scare you but this drug has some scarey side effects.

pberggren1
06-12-2010, 04:39 PM
I guess I should look into the side effects.

Jack
06-12-2010, 07:13 PM
I know I should not indulge in diagnosis by internet, but I still feel very uncomfortable about this infection theory. I expect it is because it sounds so familiar and nearly resulted in killing me. Please do all you can to rule out Wegs first.

Sangye
06-12-2010, 10:05 PM
I agree with both Elephant and Jack. Avelox is WAY powerful. I've never heard of someone being on it for 2 months. If they're using the right antibiotic (ie, they cultured it to find out the right one) they don't need ridiculous doses. If it's the right one, it works.

I also question the infection theory. It doesn't explain the worsening lung nodules or persistent bloody mucous. Though I don't have sinus involvement, treating "infections" endlessly instead of active Wegs almost killed me, too. My lungs were hemorrhaging and I was being treated for pneumonia. Several times, now.

I wonder if your docs are realizing you could have active Wegs AND a sinus infection? Wegs lowers the immunity, even without the immune-suppressing drugs.

pberggren1
06-13-2010, 05:57 AM
Thanks Jack and Sangye. I am worried too that it is Wegs.

I feel uncomfortable about the lung nodules. The coughing up of bloody mucus is from post nasal drip.

I also think it could be a smoldering type of Wegs that is getting worse being masked by these sinus infections. The lung nodules on the last CT scan just doesn't make sense.

My Rheumy is on holidays starting June 18 and not back until July 5. This worries me a little too.

I wish I could just go down and see Dr. Langford or Dr. Seo.

elephant
06-13-2010, 08:14 AM
Phil I wish you could too! If I had mucho amount of money I send it your way and get to the Wegeners specialist.

pberggren1
06-15-2010, 06:06 PM
THAT'S IT. I HAVE DECIDED TO CALL DR. SPECKS AT THE MAYO CLINIC TOMORROW TO SEE IF I CAN GET AN APPOINTMENT.

I doubt that my government insurance will pay for the medical side of things but I am going to try anyway and even if they don't I am still determined to get down there.

I googled medical flights for free and got some numbers to call as well.

Please pray for me that I can get down there with minimal out of pocket expenses.

Thanks All,
Phil

pberggren1
06-16-2010, 12:08 AM
I have called the Mayo Clinic and talked to Robin who looks after the booking of appointments for Dr. Specks. It would cost me about 500 to 700 to see Specks and about the same to see an ENT and I could have all my tests like blood work, chest x-ray, urinalysis, CT scans, etc. done here to save costs. She said to have all of those tests done there could cost about up to 4500. So this puts my mind more at ease. I will wait till the end of the week to decide but I think I will make the appointment anyway.

elephant
06-17-2010, 11:48 AM
Phil that sounds like a good idea. Make the appointment anyway ....you can always cancel. I will pray that thing work out for you financially!

pberggren1
06-20-2010, 12:26 AM
I remember telling my ENT on my last visit about suggesting to my Pulmo about having a broncoscopy done. I said the Pulmo said it wouldn't be a bad idea and said that I would be partially under and it would take about 30 to 40 minutes at most. My ENT said that my breathing is good and no signs of wheezing or tracheal stenosis and so he thought that a broncosopy is not neccessary. He said that going under general anesthetics often is not a good idea and worries about patients like me that already have complications like WG. He did admit he doesn't know much about WG but that he doesn't like to go where he is not experienced. I think that is why he has refered me to this newer ENT that is trained in some new stuff. I am going to give this new ENT a call on Monday and wee why I haven't got in to see him yet. Everything takes so long up here in the medical field. Wait times are ridiculously long.

Sangye
06-20-2010, 01:05 AM
Everything takes so long up here in the medical field. Wait times are ridiculously long.
Same here, Phil. At least you don't have to go bankrupt or lose your home paying for the huge bills after waiting forever for the appointments!

Sangye
06-20-2010, 01:12 AM
A friend told me this:
Two patients in the US are experiencing severe hip pain. One has to wait 3 days for a doctor appointment. The other has to wait 3 months to see their specialist. Each of their doctors decide they need a hip replacement. One is scheduled for surgery in a week, and the other (who has already waited 3 months for the dr appt) is scheduled for surgery in 6-12 weeks.

The difference between them? One is a dog and sees a veterinarian. The other is a human.

The friend who told me this is a veterinarian and has also undergone orthopedic surgery.

pberggren1
06-20-2010, 03:01 AM
You are so right Sangye.

Well, at least we treat our pets good.

pberggren1
06-23-2010, 09:47 PM
I saw my GP yesterday and she put in a request to get an echo-cardiogram done.

I also got her to refer me to Dr. Carette. So hopefully I will hear something from Dr. Carette's office by the first week in July.

elephant
06-23-2010, 10:21 PM
Good Phil, glad to hear that.

pberggren1
06-28-2010, 08:49 AM
I have been off for a few days because I have been in the hospital. I am currently on a pass for a few hours.

I was having some chest pains Tuesday and Wednesday and went to the ER Wednesday night. I saw a new doc, Nephrology and Internal Med. We talked for qute a while. He knows Wegs docs like Savage and Bacon over in UK. He has been involved in diagnosing about 350 cases of Wegs over the last 25 years. He is the first doc that I haven't had to explain Wegs to.

I had a chest x-ray that night. It is very comparable to the CT scan I had on May 19.

I also had blood work done. CRP was 14 down from 25 on the 7th of June and ESR was about the same at 32. The ANCA takes about 7 to 10 days to come back. He says he relies on ANCA quite a bit, especially in cases like mine where the C-ANCA has been a reliable marker for increased disease activity. My C-ANCA for the last few months has been going down again. It was 11 in February and now is 6 for June. I suspect it will be 4 or 5 this time around. But we both acknowledged that the pred alone can bring down the ANCA a bit.

I also had a ECHO done of my heart. I haven't got the results of that one yet. I will talk to the doc tomorrow. I have my Chest x-ray repeated tomorrow as well.

He increased my pred to 30 and put me on IV Avelox. I am responding a little better to this treatment.

He is a very good doc. He spends a long time explaining things and answering questions. He seems very knowledgable about Wegs.

He also says that in most cases the Wegs has to knocked out with ctx versus rtx because of the data that is currently available. He doesn't say that rtx doesn't work but that it doesn't have the track record that ctx has. He also said that ctx will work long term repeatedly but that is has to be a bug dose. He uses 2mg per kg of body weight. I was only using about 1.3mg per kg.

I will keep you guys posted answer some questions some of you guys had.

I may be in the hospital for 2 to 3 more weeks but am able to get passes to come home for a few hours.

He said Wegs patients have to be monitored closely, especially if it looks like it might be a flare or while on ctx.

Take Care,
Phil

Sangye
06-28-2010, 10:58 AM
Why would they keep you for 2-3 more weeks?

Aunnie
06-28-2010, 01:08 PM
Hi phil,

So glad you are in good hands.You will be in my thoughts,for sure.
What is Avelox??
Please keep us posted on all of your results.
We have to care about each other because,we are the only ones that understand all of the different symptoms!!!!!
And how we feel so terrible some days and not bad the next,there is NO PREDICTING..........


I talk to you guys in my head a lot lately,but when I get to the computer,I lose my train of thought.I'm in a funk big time and hope to pull out of it soon!!!!
I do go to counseling....

Hoe you feel better soon!

Aunnie

Sangye
06-29-2010, 01:37 AM
Hang in there, Aunnie. The funks hit but they do dissipate. :)

Col 23
06-29-2010, 03:02 AM
Hello Phil
Im very worried about you, but pleased that you are finally under what sounds like some good medical care now. My thoughts are with you. Wish I had a magic wand for everyone.
Col 23

Col 23
06-29-2010, 03:09 AM
Hi Aunnie
A couple of months ago I was putting kitchen utensils in the fridge and other things in strange places, I would go to make a cup of tea and walk downto the bedroom and couldnt remember what I was going to do. I would be in conversations and stop mid sentence and ask what I was talking about. My daughter made a personal card with my phone number and address because some days I couldnt remember it. I hope it was the meds. I seem to be getting a bit better now. I didnt worry about it too much as I remember Sangye saying how she originally was really worried about her memory and had tests so I reckoned it was the meds.
Hope things improve for you soon.
Col 23

Lightwarrior
06-29-2010, 03:19 AM
My daughter made a personal card with my phone number and address because some days I couldnt remember it.

I'm not happy that you are going through this, but it helps me to know I'm not crazy, sometimes when I am really tired or stressed i have trouble remembering my address and phone number. I guess I should make a card that reads "I'm really not demented, I have Wegs and right now I can't remember that I live at... and my phone number is...."(lol)

Sangye
06-29-2010, 04:26 AM
It's amazing what pred does to your thinking. Last week before I increased the pred to a "happy" dose, I was struggling to find a word. Word choices kept popping in my head, but I was totally aware that they had no connection to the word I was seeking. They weren't synonyms, they didn't start with the same letter, nothing. I was thinking of a verb and some of the words that popped in my head were nouns. It was like trying to think of the word "hammer" and the words that come to mind are: wind, crying, notebook and Mary. It was actually quite terrifying. I wondered if I was having a stroke.

Just a couple days at a good dose of pred, and it's not happening anymore. I actually participated in a lively conversation with a couple of very quick-witted, fast thinkers yesterday. I could keep up with their jokes like I did pre-Wegs. Even my creativity is coming back online.

pberggren1
06-29-2010, 06:30 AM
I talked to Dr. Tagboto this morning and he said I should be out tomorrow or Wednesday.

Avelox is a broad spectrum anti-biotic.

pberggren1
06-29-2010, 08:19 AM
Why would they keep you for 2-3 more weeks?

Because I am lovable Sangye. Would you want to part with me?

elephant
06-29-2010, 08:51 AM
So how long will be be on Avelox? DId they do blood cultures to confirms a bacteria infection? Phil get better soon. :)

pberggren1
06-29-2010, 09:07 AM
Nothing showed up in the blood cultures. He said I will go back on the oral Avelox on Wednesday or Thursday. Thanks elephant. I will keep you guys posted.

Aunnie
06-29-2010, 10:48 AM
To: Sangye,Col23 and Phil,

Thanks for your encouragment and kind words ,Pred makes me crazy,I can't stand it.I've been on it for 3 years,on 7 mg now. I can't seem to get lower than that without new lesions or other symptoms.

Phil,I'm glad you are going home soon and you don't have to stay 2-3 weeks.....

We have to be cheerleaders for each other....rah,rah

Take care all,Aunnie

Lightwarrior
06-29-2010, 11:18 AM
I talked to Dr. Tagboto this morning and he said I should be out tomorrow or Wednesday.

Avelox is a broad spectrum anti-biotic.

I'm happy you are going to be going home, take care and don't overdo it Phil.

Sangye
06-29-2010, 11:35 AM
Glad to hear you're getting sprung from the hospital, Phil. (I was thinking "Two or three weeks? What? They didn't even keep me that long when my lungs were hemorrhaging.") You're more likely to get infections the longer you stay in a hospital, and they're more likely to be difficult-to-treat infections.

Aunnie, I understand. I can't even tolerate 5mg pred. I hope you can get to a Wegs specialist. They might be able to get your pred lower-- at least to 5mg or below.

LisaMarie
06-29-2010, 12:15 PM
Phil glad to hear u r getting sprung..they r right about being in the hospital:....unless u get negative air reverse isolation u can catch a nasty bug....i have to wear a mask at work when I am in patient care areas....luckly my main work area is away from all that..keep ur chin up Phil...hopefully Mayo will help coordinate ur care

elephant
06-29-2010, 01:41 PM
So Phil they are just covering you just incase you have a sinus infection?

Col 23
06-29-2010, 06:17 PM
Lovable or cheeky Phil they still needed the bed.
Great to hear your out of the hospital. I always worry I would get more infections in the hosptial.
Remember to rest Phil and take care of yourself when you are home.
cheers Col 23 :)

Col 23
06-29-2010, 06:20 PM
Ha Har..lol Lightwarrior I should have thought to put a bit of humour with it... Suppose at the time it didnt feel very funny..
cheers Col 23

Col 23
06-29-2010, 06:28 PM
I would have thought I had lost my mind if I hadnt read your discussion on here a while back Sangye. I noted that you didnt even put in thumb for the hammer.lol.. It is a bit scary but Im so use to all sorts of weird WG/ Med stuff happening now. This morning after do some minor household chores I went into full dizzyness and thought I was going to pass out. Checked blood pressure and sugar levels all good. So took it easy and hasnt returned for the rest of the day. If all is well after visit to Rheumy tomorrow I will be going down to 12.5mg Pred a day. I just want to get to the 10mg, is that the magic one where you begin to deflate like a balloon???
cheers Col 23

Col 23
06-29-2010, 06:35 PM
Its very frustrating Aunnie and all so unknown. You never know if your going to have a good day or bad day. Rah Rah Aunnie... turn the music up....go for the fun even if its 5 mins... I have been telling all my friends I have "life is too short syndrome" and that I am now a" spontaneous woman ". Works for me right now.
cheers Col 23

Sangye
06-29-2010, 11:12 PM
I would have thought I had lost my mind if I hadnt read your discussion on here a while back Sangye.
That's why we're here. To convince each other that we're not losing our marbles. :D

Aunnie
06-30-2010, 01:25 PM
I love to play marbles.red is my favorite !!!!!!

xoxo
Aunnie