This is my life changing story

[ThePowerCouple]

Hello WG Members,
The following is my husband’s life changing story in his own words:

I didn’t know it at the time but my sickness began on January 3, 2014 shortly after everyone at my job got really sick with the flu. I didn’t get sick like everyone else but I did get something. It started in the middle of a flight from Fort Myers FL to Atlantic City NJ. I had a high fever and very stuffy nose. I was sick the whole time that I was there. I then flew to Mexico two weeks later. I was still sick and came back even sicker. While there, I went to several ENT doctors that prescribed Prednisone, Vitamin C, Antibiotics and Saline for my nose. The lining of my nose was full of blisters and sometimes I would stain the pillow with blood from my nose. My nose was swollen shut. I could barely breathe. One of the ENT doctors tried to put a camera up my nose but it wouldn’t go through because it was swollen shut. When I came back, I went to an ENT doctor in Fort Myers. He did the same procedure and prescribed me Prednisone and Antibiotics. It didn’t work. When I went back, he did a CT scan of my face. It showed unexplained inflammation above and below my eyes. I continued to go to him until March 2014. All of a sudden everything went back to normal or so I thought. When it returned I didn’t want to go back to him because one day I told him that I had a fever every single night and night sweats every single night. When I say night sweats, I mean soaking night sweats and high fevers of 102 and above. The ENT shook it off and said that I probably had a cold.

I felt normal from April 2014 thru mid-June 2014. All of a sudden I got a lump behind my right ear. So I went to the walk-in urgent care (7/7/14). I was prescribed Prednisone and Antibiotics again. The antibiotics didn’t get rid of anything. So I went to a different walk-in urgent care (7/14/14). The doctor who took care of me that day was a caring doctor. He prescribed Antibiotics. He referred me to a new ENT doctor. He sent me next door to his office to get a CT Neck with Intravenous Contrast. The result was: There is a symmetric enlargement and heterogeneous enhancement of the right parotid gland relative to the left.

I went to the new ENT doctor (7/16/14). The ENT prescribed Prednisone and Antibiotics. I still didn’t get better. I returned to the ENT (7/23/14). I notified him that I had experienced extreme pain on the lump behind my right ear. I also experienced a sharp pain on my chest through to my back shortly after seeing him for the first time. He prescribed Antibiotics and Prednisone again.

I was getting worse instead of better. The high fevers and night sweats continued. I was getting shortness of breath and weakness of the knees. I would come home from work out of breath, weak and very tired. I went back to the walk-in urgent care (8/14/14). They did a chest x-ray. They diagnosed me with Pneumonia and told me that I might have TB. They urged me to check myself in to the hospital ASAP. On 8/15/14 I checked myself in to the hospital. I was placed in a quarantine room. They ran every test under the sun. Everything came up negative. So the next step was to inhale fumes in order to cough up phlegm but the results came up negative. So the next step was a Bronchoscopy (8/19/14) which showed minimal phlegm and negative for whatever they checked it for. That’s when the infectious disease doctor had them check me for WG. So the next step was a Thoracoscopy (8/21/14). They had to cut out two pieces of my lung for biopsy. That’s also when they checked and my blood count showed a high level of Vasculitis. On 8/23/14 I was diagnosed with Wegener's Granulomatosis. I was given Antibiotics and 200mg of Prednisone via IV. My sugar level went sky high. So I was given insulin. I was given many other medicines as well. The lung doctor prescribed me 60mg of Prednisone when I left the hospital. I was in the hospital for 12 long days.

On 9/25/14 I saw my rheumatologist for the first time shortly after my lung doctor contacted them and asked them why they haven’t called me yet for an appointment. The rheumatologist prescribed Methotrexate 25mg/ml (9/29/14). It was a shot once a week. I took Methotrexate a total of 4 shots. It made me feel extreme pain from my knees down in the calf muscle. I also had a burning sensation on the bottom of my feet. I felt very weak all over. My blood pressure was sky high but I wasn’t aware that it was sky high. Therefore, I had no symptoms to notify me that I had high blood pressure. So the rheumatologist discontinued the Methotrexate and advised me to cut back on Prednisone as follows:
30 mg daily for 2 weeks (12/1-12/15)
27.5 mg daily for 2 weeks (12/16-12/30)
25 mg daily for 2 weeks (12/31-1/14)*
*Lung doctor said I was in remission (1/2/15). From January – February 2015 I felt normal.
22.5 mg daily for 2 weeks (1/15-1/29)
20 mg daily for 2 weeks (1/30-2/12)
17.5 mg daily for 2 weeks (2/13-2/27)
15 mg daily for 2 weeks (2/28-3/14)**
**Dry cough and fever began (3/7/15).
12.5 mg daily for 2 weeks (3/15-4/5)***
***I got worse with coughing, fever and full body discomfort. On 3/31 and 4/6 went to the primary doctor and was advised to go to ER due to chest x-ray but I decided to see my lung doctor instead.
10 mg daily for 2 weeks (4/6-4/8)****
****I got even worse with coughing up phlegm stained with blood, high fever and full body discomfort. I wasn’t able to complete 2 weeks of 10 mg.
(4/8/15) Lung doctor visit resulted in Prednisone to be changed to 60mg which I started on 4/9/15.
(5/6/15) Lung doctor visit resulted in Prednisone to continue at 60mg. He added Bactrim (antibiotic) to be taken MWF every week.
(6/5/15) Lung doctor visit resulted in Prednisone to continue at 60 mg and Bactrim to continue MWF every week. Lung x-ray is still the same as last month’s x-ray. No improvement but not worse neither. Prednisone is causing my blood pressure to rise along with my glucose level to rise. Therefore, the lung doctor prescribed Enalapril 20mg (blood pressure), Metformin 500 mg 2x per day and Glyburide 2.5 mg. I told him that I’m willing to give Methotrexate another try. He told me to go ahead and try it two times if I still have some left at home. If I can handle it better this time around, he said I can call him and he will prescribe it again for me. I asked him if the rheumatologist communicates with him about me. He said he hasn’t received any notes from him. I’ll see him again in 6 weeks.

Prednisone makes me feel very tired. I feel the need to rest constantly. The bottom of my feet gets really hot. When that happens I feel the need to raise them up on a foot stool. Then they get cold and I start to sweat all over.

Sincerely,
ThePowerCouple

[Pete]

You really need to see a Vasculitis specialist - or at least have your doc consult with one. Here's a link to a list of specialists: VF Medical Consultants (http://m.vasculitisfoundation.org/?task=get&ihash=ccd56128ea&url=http%3A%2F%2Fwww.vasculitisfoundation.org%2Fmc m_resources%2Fmedical-consultants%2F)

I believe the Cleveland Clinic has a center in Tampa. It might be worth the drive if your insurance will cover it. I drive a bit over two hours one-way to get to the Cleveland Clinic's mother ship. You'll get great care there.

[ThePowerCouple]

You really need to see a Vasculitis specialist - or at least have your doc consult with one. Here's a link to a list of specialists: VF Medical Consultants (http://m.vasculitisfoundation.org/?task=get&ihash=ccd56128ea&url=http%3A%2F%2Fwww.vasculitisfoundation.org%2Fmc m_resources%2Fmedical-consultants%2F)

I believe the Cleveland Clinic has a center in Tampa. It might be worth the drive if your insurance will cover it. I drive a bit over two hours one-way to get to the Cleveland Clinic's mother ship. You'll get great care there.

We thank you! We are willing to drive to Tampa to see a Vasculitis Specialist. Therefore, we will check into it.

[annekat]

Thanks for sharing your story. I don't know what all meds you were given in the hospital but WG patients with both lung and sinus involvement are usually started off on a heavy hitting immunosuppressant like cyclophosphamide (Cytoxan, CTX), which can be given by infusion or orally in pills, or rituximab (Rituxan, RTX), given by infusion, in addition to prednisone and Bactrim. Methotrexate might not have been a strong enough med for your situation initially, though it might be fine for a later stage. But it sounds like it was problematic for you, and there are alternatives which your rheumatologist should know about. It also seems like there should have been a CT scan of your lungs in the hospital, if there wasn't. Your doctors may be inexperienced, and Pete's recommendation to try Cleveland Clinic in FL is a good one, I'm sure. Luckily, it sounds like your dx came relatively soon after unusual symptoms began, unlike some of us who have gone a couple years or more before dx, since WG tends to mimic things like allergies and sinus infections. This earlier detection will minimize permanent damage that can be done by the disease, although not getting proper treatment will counteract that benefit. Yours is another example of how every case is a little different. Keep us posted on how things go.

[mishb]

Hi Power couple and welcome to the forum.

I'm so glad you found us and it really sucks, that you needed too :crying:

I hope that you get to catch up with members in your area, it really helps knowing that you are not alone in this.

Your story is so familiar and also different, to many of us. I also would recommend checking out the Cleveland Clinic (from what I have heard), to get the correct treatment plan.

[gilders]

As Anne mentioned, most people diagnosed with Wegener's need some of the stronger drugs to get in to remission.
It seems like the prednisolone is keeping Wegener's from becoming even worse than it is at the moment and your 4 shots of MTX "may" (I say "may as it's quite hard to definitely say if you're in remission or not) have briefly knocked you in to remission. But I really think you need to see a vasculitus specialists and get Wegener's butt kicked in to remission with the big guns (cyclophosphamide or Rituximab).

By the way, your story was well written. Well done with remembering all the dates, it helps to follow your "journey" when it's written chronologically accurate.

I'm not sure if it's the prednisone that is making you feel so tired. I'd guess it's Wegener's, itself, that is giving you fatigue.
Are you raising your feet just to relieve pain or are they swelling as well? If they're swelling it could indicate Wegener's activity in your kidneys. Without wanting to worry you, kidney damage can quickly progress and is often not reversible, so keep an eye on that.

[MikeG-2012]

I agree with everyone else. Find a good wegs specialist and a clinic where all the docs are at the same place. With doctors at the same clinic, all your records are there too, so the ENT can see what the pulminologist is doing, the rheumy, etc, etc.

[jakekell]

I agree with the advice of getting a good Wegs doc. I don't know if they have Rhemy's in the Tampa, but there is suppose to be a good one in Naples. I will find out/put his name here for you if you want. I do have a great ENT in Naples Dr. David Greene, he is very up-to-date with wegs. Dr. Greene was was Cleveland Clinic when they were in Naples. I see him when I am in Naples during the winter, he has helped me a lot. I go to Cleveland Clinic in Cleveland when I am home for my main course of treatment. I have Dr. Greene's number if you want it and he most likely knows the right rheumy in the area.

Mary

[gilders]

Mike makes a good point about trying to get all Drs to be at the same place.
In this day and age it should be simple for Drs to pull up test results electronically (via internet) from any hospital, but in my experience this doesn't happen. Even the most dedicated Drs don't have enough free time to be chasing up emails and faxes of results and reports from various hospitals.

[annekat]

Mike makes a good point about trying to get all Drs to be at the same place.
In this day and age it should be simple for Drs to pull up test results electronically (via internet) from any hospital, but in my experience this doesn't happen. Even the most dedicated Drs don't have enough free time to be chasing up emails and faxes of results and reports from various hospitals. I agree. My ENT has to be prodded to send reports to my WG doc and my primary care provider. Then I end up having to tell the WG doc what the ENT said. This annoys me, as I don't think it is my job. Finding a team that works together is more likely at a well-known facility that has a competent rheumatology and vasculitis clinic along with the related specialties for the areas that affect us. I feel the need myself to find something like this.

[Pete]

I agree. My ENT has to be prodded to send reports to my WG doc and my primary care provider. Then I end up having to tell the WG doc what the ENT said. This annoys me, as I don't think it is my job. Finding a team that works together is more likely at a well-known facility that has a competent rheumatology and vasculitis clinic along with the related specialties for the areas that affect us. I feel the need myself to find something like this.

While having all our docs in the same place and on the same page is ideal, it's not reality - yet. My PCP in Columbus orders and reports my monthly labs. My rheumy at Cleveland Clinic needs to see them too. To make sure she does, I update a MS Excel spreadsheet and send a copy to her (by snail mail now - until Cleveland Clinic's MyChart system will allow me to include them in an e-mail).

[annekat]

Well, as long as it works for you, Pete, it seems OK to me!

[jakekell]

I haven't had a problem with my docs providing the info to each other, guess I am lucky. My ENT in Naples dictates a letter to CC while I sit there, provides me with a copy before I leave works well.

[annekat]

I haven't had a problem with my docs providing the info to each other, guess I am lucky. My ENT in Naples dictates a letter to CC while I sit there, provides me with a copy before I leave works well. Maybe it's just my deadbeat ENT. I actually like him, for the most part, just think he's too casual about things, or maybe it's his office staff's fault.... who knows...

[jakekell]

I maybe just got lucky with my ENT, happens sometimes. :hug3:

[ThePowerCouple]

Thanks for sharing your story. I don't know what all meds you were given in the hospital but WG patients with both lung and sinus involvement are usually started off on a heavy hitting immunosuppressant like cyclophosphamide (Cytoxan, CTX), which can be given by infusion or orally in pills, or rituximab (Rituxan, RTX), given by infusion, in addition to prednisone and Bactrim. Methotrexate might not have been a strong enough med for your situation initially, though it might be fine for a later stage. But it sounds like it was problematic for you, and there are alternatives which your rheumatologist should know about. It also seems like there should have been a CT scan of your lungs in the hospital, if there wasn't. Your doctors may be inexperienced, and Pete's recommendation to try Cleveland Clinic in FL is a good one, I'm sure. Luckily, it sounds like your dx came relatively soon after unusual symptoms began, unlike some of us who have gone a couple years or more before dx, since WG tends to mimic things like allergies and sinus infections. This earlier detection will minimize permanent damage that can be done by the disease, although not getting proper treatment will counteract that benefit. Yours is another example of how every case is a little different. Keep us posted on how things go.

Now more than ever, we are feeling the need to find new doctors that are experienced with WG. We were on the phone today calling different rheumatologists and our first question to them was, "Will you please ask the doctor if he/she knows how to treat WG?" They told us they would and get back to us. We thank you all for your responses. It has helped us a lot.

[ThePowerCouple]

Hi Power couple and welcome to the forum.

I'm so glad you found us and it really sucks, that you needed too :crying:

I hope that you get to catch up with members in your area, it really helps knowing that you are not alone in this.

Your story is so familiar and also different, to many of us. I also would recommend checking out the Cleveland Clinic (from what I have heard), to get the correct treatment plan.

We thank you. We hope to be under the correct treatment plan soon. We feel as though something is missing. Hopefully we will find a Vasculitis Specialist soon. We will keep searching until we find one.

[ThePowerCouple]

As Anne mentioned, most people diagnosed with Wegener's need some of the stronger drugs to get in to remission.
It seems like the prednisolone is keeping Wegener's from becoming even worse than it is at the moment and your 4 shots of MTX "may" (I say "may as it's quite hard to definitely say if you're in remission or not) have briefly knocked you in to remission. But I really think you need to see a vasculitus specialists and get Wegener's butt kicked in to remission with the big guns (cyclophosphamide or Rituximab).

By the way, your story was well written. Well done with remembering all the dates, it helps to follow your "journey" when it's written chronologically accurate.

I'm not sure if it's the prednisone that is making you feel so tired. I'd guess it's Wegener's, itself, that is giving you fatigue.
Are you raising your feet just to relieve pain or are they swelling as well? If they're swelling it could indicate Wegener's activity in your kidneys. Without wanting to worry you, kidney damage can quickly progress and is often not reversible, so keep an eye on that.

I'm raising my feet to relieve pressure, discomfort and fatigue. I don't feel pain and they aren't swollen. Sometimes the bottom of my feet get very hot. All of these symptoms come and go. Some days I feel almost normal for about an hour or two. Thanks for the heads up regarding the kidneys.

[ThePowerCouple]

I agree with everyone else. Find a good wegs specialist and a clinic where all the docs are at the same place. With doctors at the same clinic, all your records are there too, so the ENT can see what the pulminologist is doing, the rheumy, etc, etc.

We thank you. We will try our best to get all the doctors at the same clinic as soon as we find a new rheumatologist.

[annekat]

We thank you. We will try our best to get all the doctors at the same clinic as soon as we find a new rheumatologist. Either that, or find a rheumy who treats enough WG and other vasculitis patients that he will be very familiar with other docs that he works with regularly as a team, and can refer you to them, even if not at the same clinic! That seems like one option, anyway, if the perfect doc that you find doesn't happen to be with a big clinic. Just speculation on my part, though.....

[ThePowerCouple]

I agree with the advice of getting a good Wegs doc. I don't know if they have Rhemy's in the Tampa, but there is suppose to be a good one in Naples. I will find out/put his name here for you if you want. I do have a great ENT in Naples Dr. David Greene, he is very up-to-date with wegs. Dr. Greene was was Cleveland Clinic when they were in Naples. I see him when I am in Naples during the winter, he has helped me a lot. I go to Cleveland Clinic in Cleveland when I am home for my main course of treatment. I have Dr. Greene's number if you want it and he most likely knows the right rheumy in the area.

Mary

May we have the name of the rheumatologist in Naples? We found Dr. Greene's phone number on the internet. We thank you for forwarding his name.

[jakekell]

May we have the name of the rheumatologist in Naples? We found Dr. Greene's phone number on the internet. We thank you for forwarding his name.

Dr. Alper, Jeffrey
239-262-6550

Dr. Alper and Greene are with the NCH Hospital group so the information exchanges very well.

Good luck hope things get better soon,

Mary

[ThePowerCouple]

Dr. Alper, Jeffrey
239-262-6550

Dr. Alper and Greene are with the NCH Hospital group so the information exchanges very well.

Good luck hope things get better soon,

Mary

We thank you for forwarding the name and phone number of the rheumatologist. We will give him a call.

[jakekell]

I hope they get things under control soon. I really liked Dr. Greene he is on top of everything that was going on with my sinus, breathing, ears, etc. He told my husband and I at the first visit that he would give me all the information I need to stay in better control. I was surprised that he did just that, he takes everything seriously. Dr. Greene handed my a copy of my scan along with a letter for my rhemy and for my ENT here in MI. The letter stated right where my condition was when I left for home, hope you have the same results.

[Lilly]

Hi PowerCouple, I hope you are getting the best of care at this point. I love the way you document your events and meds, etc. I do the same thing. Sometimes it really helps if you have to see a new specialist, or if you just have to try to remember what meds you took when. Ive had wegeners for 25yrs, and I still keep a basic journal of information. My question is, at any point, did you ever have pain in the bottom of both feet? The only way I can explain it is it feels like someone took a hammer, and beat on the bottom of my feet, and they are totally bruised. I also have lumps on the inside of both feet, that I can feel, but they move around. They are inside, so I see no redness, inflammation, or heat. But, I use a cane when I'm up and around because I will get a bit unsteady sometimes, and the LAST thing I need is a broken hip from falling! Also, the bottom of my feet are sometimes tingly when sitting and have them up. If I am standing in one place for a minute or two, they feel like they are very tingly, like they are falling asleep. Thank you for any ideas you have. Hope all is well with you! Lilly

[Alysia]

Hi PowerCouple, I hope you are getting the best of care at this point. I love the way you document your events and meds, etc. I do the same thing. Sometimes it really helps if you have to see a new specialist, or if you just have to try to remember what meds you took when. Ive had wegeners for 25yrs, and I still keep a basic journal of information. My question is, at any point, did you ever have pain in the bottom of both feet? The only way I can explain it is it feels like someone took a hammer, and beat on the bottom of my feet, and they are totally bruised. I also have lumps on the inside of both feet, that I can feel, but they move around. They are inside, so I see no redness, inflammation, or heat. But, I use a cane when I'm up and around because I will get a bit unsteady sometimes, and the LAST thing I need is a broken hip from falling! Also, the bottom of my feet are sometimes tingly when sitting and have them up. If I am standing in one place for a minute or two, they feel like they are very tingly, like they are falling asleep. Thank you for any ideas you have. Hope all is well with you! Lilly

Dear Lilly. I had those pains in my feet after the acute onset and while being for a while on pred 60mg. I dont know if it was because of wg or pred. The dr. Prescribed for me some soft silicon footholds for the heels. It helped.

[debra]

Lily, hi. Weird as I was just saying my pain for the last almost four years now, stopped at the top of my feet, ankles. Mostly just burning leg pain throughout, and roaming? Worse lying down, which makes sense with the circulation being affected? Well, stupid me for even opening my mouth, cause now its in my feet as well... I'm sitting here typing this, and my feet are now as sore as my legs. Bummer... The feeling sometimes moves to tricking? Is that a word? Ya, I guess if you spell it right! Tricking! So sorry.. Also, feels like falling asleep? But not quite... This has been happening to my arms and shoulders now. Much worse when lying down. Roaming. Now hands, at times... Lily I'm not on meds, so mine wouldn't be a pred side effect. I'm on my own natural pred. Alysia, can fill you in there! Hi, Alysia my sister! Lily, I hope this can help a little.... Good luck! Debra.

[debra]

Pricking, Lily, not trickling!!!!! Two times it changed my words! I had to program the word prick, into my phone! Sorry, Deb.

[debra]

Oh no!!!!!!!!!!! Please forgive me!!!! Why me??? No, Pricking!!!!!! I should have just used a different word! I'm so sorry you guys. Maybe Andrew can take this away? Oh boy..... Deb.

[Birdie]

Dear Lilly. I had those pains in my feet after the acute onset and while being for a while on pred 60mg. I dont know if it was because of wg or pred. The dr. Prescribed for me some soft silicon footholds for the heels. It helped.

I got compression stockings, hurt like crazy putting them on but helped greatly with the swelling and pain. Even let me get shoes on my feet when half an hour before, the feet were actually bigger than the shoes.

[debra]

Birdie, hi. I dont have the swelling. Just the burning pain? I went through something different some years back, with these type symptoms and it was horrible... Interesting how everyone is effected different yet similar? Very strange.... The weg dog, Realy bites..... But not for long, cause I'll be biting back! Me.

[Jaha]

Lily,
I was just dx'd with small fiber neuropathy, which effects the feet and the hands mostly. It can effect other parts of the body. It is a different kind of neuropathy and is not detected by a EMG test, you have to have a skin biopsy to find it. It will cause stabbing pain, burning, swelling, itching,unusual sweating, and numbness and is very hard to treat. I wish you all the best in getting some relief from your pain and numbness, take care.

[Pete]

Hi Jana,

Do you have a treatment plan for your neuropathy?

[renidrag]

I'm with Jaha on this one, neuropathy. Gabbapentin is the drug of choice for the pins, needles and pain. I resisted for years but once I did most pain went away. The feeling of walking on bubbles did not.
Dale

[Birdie]

most pain went away. The feeling of walking on bubbles did not.

Hey Dale, bubbles? I had ziplock bags full of Jello on the bottom of my feet. Compression stockings went to the top of my legs. Worked magic on the swelling all the way up. A week wearing them and I got a few weeks without a problem. Put em back on at the first sign of Jello bags. After a few months... no more issues...

[MikeG-2012]

I'm with Jaha on this one, neuropathy. Gabbapentin is the drug of choice for the pins, needles and pain. I resisted for years but once I did most pain went away. The feeling of walking on bubbles did not.
Dale

Ditto, mine is very well managed by gabapentin too.

[drz]

Ditto, mine is very well managed by gabapentin too.

Gabapentin didn't do much for me except disturb my balance so walked into more door jams. But my pain from neuropathy wasn't that severe and it decreased as the nerves died. I still get an occasional stabbing or burning or itching sensations from time to time.

[debra]

Drz! Drz, I'm on a posting binge! Drz, what's happening to me? Does it pass? I was wondering if this drug is neurotin? Spelled wrong no dought, but... So maybe the generic of this? Deb.

[drz]

Drz! Drz, I'm on a posting binge! Drz, what's happening to me? Does it pass? I was wondering if this drug is neurotin? Spelled wrong no dought, but... So maybe the generic of this? Deb.

yes it is. A newer drug thought to be more effective but lot more expensive is Lyrica.

[debra]

Drz, thank you! Deb.

[Aneinu]

Power couple....any update?
Hope you are doing well.

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