Confirmed Diagnosis

[John S]

I just got a phone call from Dr. Villa-Forte. She has reviewed my files and the recent CT scan of my lungs and has confirmed the diagnosis of GPA. My local rheumatologist called it "Limited Wegener's". Dr. Villa-Forte prefers the term "mild GPA". To me that's six of one, half a dozen of the other.
She is prescribing 30 mg Prednisone, infusions of Rituximab and a liquid antibiotic (I'm allergic to the sulfa in Bactrim).
The next step is to get my local rheumatologist to work with Dr. Villa-Forte. After a year and a half, I hope to start getting better.
I'm hopping on the train !!!!!!! Next stop......wellness?

[Pete]

Hope your treatment goes well!!!

[Alias]

John,

Having a firm diagnosis is a relief in a way, right? At least you know for sure what you are dealing with and how to proceed, and clearly you are getting good care.

Mild, limited, non-severe... none of those terms are adequate or accurate. My illness is characterized the same way, but it has still been life altering. I guess the distinction is that there is little or no vital organ involvement. I started with 60 mg of pred when I was acutely ill, and had a slow taper down to 0, and that went well. I've not had to go back on it at all, but still take MTX for maintenance. The pred can have some lousy side effects, but will make you feel better.

Best wishes...

[mishb]

Well done John

I like the direction your train is heading
- all aboard everyone, the wellness train is on it's way :hug3:

[John S]

https://www.youtube.com/watch?v=e2XwZTc7QHw

Due to the Granuloma Annulare sores on my hands, I have given up ukulele and guitar. I hope to play harmonica this good someday.

[Alysia]

John, you are in good hands and getting the best treatment. You are going to be be as good as new.

[Aneinu]

John, my son had her as a doctor. She is very good. Keep us posted on your progress please.

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[John S]

My local rheumatologist is on maternity leave and her replacement wanted to start from ground zero, delaying any treatment for at least 6 weeks. I messaged Dr. Villa-Forte with an idea and she agreed. She has gotten approval from my insurance to start the treatments at the Cleveland Clinic. My wife and I will drive there Sunday and get the first infusion next Monday. I'll spend Monday night there and we'll drive back home on Tuesday if all goes well.

Dr. Villa-Forte is FANTASTIC.

[Aneinu]

Agreed! Great news. Hope all goes well.Keep us posted please.

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[Alias]

Hard to imagine a doctor proposing delay in treatment, in the face of a confirmed diagnosis. Good job of self advocacy and getting things moving forward. Best wishes.

[Jaha]

You are in the best of places and with a top doctor. I am wishing you all the best with your treatments.

[John S]

I had my first infusion of Rituximab today. Everyone at thr Cleveland Clinic worked as an efficient team. I cant sleep tonight. Maybe that is due to taking 30 mg of Prednisone and also having an injection of it at the start of the procedure. I'm also experiencing some pain in the elbow and shoulder that they used. This may or may not be related.

[Aneinu]

Wishing you well. Keep us posted please.

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[Gab122]

I had lung and ear involvement- dx on 8/1/16. I am treated in Boston. I started at 60 mg pred and ritux infusions every 4 months. I'm tapered down to 2.5 mg pred now and my disease is in remission :) I did catch bronchitis 4x and the flu once since Jan due to immune suppression. Wishing you the best!

[John S]

I'm allergic to th sulfa in Bactrim so tomorrow I start taking a liquid antibiotic that costs $1000 for 3 months worth. Luckily insurance picks up $750 till I get in the donut hole.
Good news. Headaches have caused me to take 1 Extra strength Tylenol every four hours for the last several months. I haven't had a bad enough headache all day. Also, I drove most of the way home from Cleveland to Chicago today. Last time, me eyes only let me drive a 1 hour shift.

[Pete]

Great news, John!! I hope your improvement continues!!

[drz]

I'm allergic to th sulfa in Bactrim so tomorrow I start taking a liquid antibiotic that costs $1000 for 3 months worth. Luckily insurance picks up $750 till I get in the donut hole.
Good news. Headaches have caused me to take 1 Extra strength Tylenol every four hours for the last several months. I haven't had a bad enough headache all day. Also, I drove most of the way home from Cleveland to Chicago today. Last time, me eyes only let me drive a 1 hour shift.
I get pentamadine inhalation treatment monthly instead since I am also allergic to sulfa and can't take Bactrim.

[John S]

I get pentamadine inhalation treatment monthly instead since I am also allergic to sulfa and can't take Bactrim.

It was either the antibiotic or the inhalation therapy. We want the freedom of travel for the Summer and the mothly procedure might have interfered.
The antibiotic reminds me of yellow mustard or worse yet, infant poop.

[John S]

I want to emphasize again how nice everyone at Cleveland Clinic is. They kept asking what my birthday is, I think they are getting me something.......

[Pete]

I want to emphasize again how nice everyone at Cleveland Clinic is. They kept asking what my birthday is, I think they are getting me something.......

Probably better health...��

[John S]

I don't know how fast the Rituximab is supposed to work but, I'm feeling better already. Very few headaches and my thoughts seem clearer. My arthritis aches seem to be going down as well.

[Pete]

You probably got a big dose of steroids and Benadryl before the infusion. Rituximab usually takes a few weeks to take full effect. Hope you continue to feel better.

[John S]

You probably got a big dose of steroids and Benadryl before the infusion. Rituximab usually takes a few weeks to take full effect. Hope you continue to feel better.

You are probably correst. The headaches, the scleritis eyes and nasal crusties have been sneaking back in. This will be an off week and then I'll get the second treatment the following week.

[John S]

Headaches and eyes are real bad now. Second infusion is a week away. Should I expect to feel miserable for awhile? How long does it take to get better?

[Gab122]

Lol - my drs always ask my birthday too! 😉

[Pete]

Headaches and eyes are real bad now. Second infusion is a week away. Should I expect to feel miserable for awhile? How long does it take to get better?

You may want to ask your doc about increasing your pred dosage to calm your symptoms while you wait for the rtx to kick in.

[John S]

How long does it take for the rtx to kick in? The sores on my hands are going away rapidly right now. Not sure if that is from the rtx or the pred though.

[Pete]

Rtx usually takes 4-6 weeks to take full effect. Since you had a dose two weeks ago, you should be seeing some improvement. Hope so!

[John S]

I had my second infusion of Rituxin last Tuesday. Next one will be in 6 months if all goes according to plan. I'll start he Prednisone tapering in 3 days.

[John S]

I'm looking forward to remission. Do the big boogers, wooly bears, crustaceans go away? I swear that I have a vault in my sinus large enough for a safe deposit box.

[Pete]

Yes, the big boogers, etc do go away. They're easier to manage if you rinse your sinuses regularly.

I take 10 mg/day of Claritin and 20 mg/day of phenylephrine to keep the sinuses dry and clear. I've been doing this almost since I was diagnosed. My pulmonologist suggested this. Please check with your doc before taking a supplement or OTC med.

[John S]

Why do the Doctors call them "crusting" they are snot

[Pete]

Why do the Doctors call them "crusting" they are snot

More "polite" than boogers or snot?

[drz]

The drainage from the sinuses can dry and attach to the nasal passages. These "crusts" can become very dried and hard and cause bleeding when removed when hard. Rinsing helps soften them up and makes them easier to flush out. Some times it can take a lot of rinses to get things feeling clean and clear again.

[John S]

Yeah, I've had these large wooly bears from my nose on a regular basis since last June. Every time I bring one out I think of a line from the movie "Spawn" where the evil clown (played by John Leguizamo) sneezes and says "You think it's funny but it's snot"

[John S]

It's been a month since my first infusion. I am down to 20 mg of Prednisone, will taper to 17.5 tomorrow. The granuloma annulare sores on my hands are almost completely gone. I still wear sunglasses and a large brim cap whenever I'm in bright light. I feel more awake but I am still napping a bit. The nasal crusts are still very large and frequent.
My wife, who is my wellness barometer, says that I am looking better. I plan on trying to ride my bicycle today.

[drz]

It's been a month since my first infusion. I am down to 20 mg of Prednisone, will taper to 17.5 tomorrow. The granuloma annulare sores on my hands are almost completely gone. I still wear sunglasses and a large brim cap whenever I'm in bright light. I feel more awake but I am still napping a bit. The nasal crusts are still very large and frequent.
My wife, who is my wellness barometer, says that I am looking better. I plan on trying to ride my bicycle today.

Are you doing lots of sinus rinses for the crusting? it takes a while to get them healed but rinsing helped me.

[John S]

Every day!

[drz]

Every day!

You can rinse more than once a day. And some people found they had to rinse several times at once or use a couple liters rinse to get some tough stuff dislodged. One doctor told me you won't over rinse.

[John S]

During the 18 months of well intentioned doctors fighting my symptoms, my eyes changed a lot. My eyes were some of the first manifestations of the disease. I had double vision for awhile, followed by my right eye swelling up and almost hitting the lens of my eye glasses. One of the diagnosis was Optical Pseudo-Tumor.
In the course of treating these symptoms, I took a lot of Prednisone, which caused additional problems. My cataracts got so big that both eyes were operated on last fall. I had the less expensive lenses installed so I need to use reading glasses for close up work. A month after the cataract surgery I got a prescription for reading glasses. They worked fine for 2-3 months and then my eyes changed. I suddenly needed a much stronger pair of readers.
Now that I am on Rituximab and have cut back the Prednisone to 15 mg, it seems my eyes are changing again.

Has anyone else experienced this phenomenon?

[Alysia]

During the 18 months of well intentioned doctors fighting my symptoms, my eyes changed a lot. My eyes were some of the first manifestations of the disease. I had double vision for awhile, followed by my right eye swelling up and almost hitting the lens of my eye glasses. One of the diagnosis was Optical Pseudo-Tumor.
In the course of treating these symptoms, I took a lot of Prednisone, which caused additional problems. My cataracts got so big that both eyes were operated on last fall. I had the less expensive lenses installed so I need to use reading glasses for close up work. A month after the cataract surgery I got a prescription for reading glasses. They worked fine for 2-3 months and then my eyes changed. I suddenly needed a much stronger pair of readers.
Now that I am on Rituximab and have cut back the Prednisone to 15 mg, it seems my eyes are changing again.

Has anyone else experienced this phenomenon?

My vision is deteriorating fast since the last summer. I have changed glasses for distance to 2 numbers higher at January after in August they were ok. Now again I dont see well enough in one eye. All those months I took lots of pred and had a flare. Although not in the eyes this time. I do have cataract but not severe enough for a surgery. Yet ?
I did a check of my vision field and in was ok. Brain MRI was also ok. I am going to see my neuropthalmologist on Wednesday so will see what she will say.
Will be grateful also to understand what does it mean and what to do about it.
I have glasses for distance since I was 6 years old. Also pair for readings in the last few years.

[im so blessed]

My eye sight changes when i am tapering prednisone. Not every time. But i have had to change my prescription when it happens and the eye doc says it has to do with the pred. Not sure exactly what it does, but i know it definitely effects it.

[drz]

Pred seemed to speed up my cataracts so I had surgery and that greatly improved my vision. I was able to see well enough to drive without glasses and to get along without glasses for first time in 65 years. My vision often fluctuated due to variations caused by blood glucose levels with fluctuate continually. Dry eyes also affects my vision acuity.

I had scleritis before the diagnosis of Wegs but it did not affect my vision much. Wegs can cause damage to our eyes and several users have reported loss of vision or decreased vision from Weg damage so annual eye check ups are strongly advised. And any vision changes should prompt assessment ASAP. That was the advice I got on my first post hospital follow up appointment.

[John S]

It's been 7 weeks since my first Rituximab infusion. I'm down to 12.5 mg of Prednisone. The plan is to go to 10 mg next week and then hold at that level for 4 weeks, then reduce by 1 mg per week for 5 weeks.

The bad: Headaches are still pretty common. My sinuses feel full but not much coming out with the rinses. I don't have my old energy level.
The good: I've been riding my bicycle! I've done several 4 mile bike rides in 90 plus degree heat. My scleritis seems to be improving. I've been outside during the day without sunglasses on a few occasions. My ability to learn new things has improved dramatically. I am not always fatigued. I tried flying a Radio Control model airplane (I'm still as bad a flyer as I always was).

[John S]

I had some blood tests done this week. My SED rate is 9! In January 2016 is was 126.

[MikeG-2012]

I had some blood tests done this week. My SED rate is 9! In January 2016 is was 126.

Way to go! Keep up the good work!!! (-8

[John S]

I was at 10 mg of Prednisone for the past month. Today is the day hat I dropped to 9 mg (following the directions of Dr. Villa-Forte). I'm looking forward o finally getting off of it.
I had 6 grandchildren visiting over the past two weeks and was able to keep up with them. Bicycling is now a regular thing, despite the temperatures being in the 90's. I have also started flying model airplanes again.

[John S]

I taper to 5 mg Prednisone this Friday :) . Dr. Villa-Forte wants me to stay at 5 for a month. I so want to get off of this nasty stuff.
I have historically had a rapid build up of ear wax and have to get my ears flushed out regularly. Is this a symptom of GPA? Any others have this?
I have not had any giant nasal crusts in a long time. I continue to rinse my sinuses regularly but very little coming out. :)

[Aneinu]

I taper to 5 mg Prednisone this Friday :) . Dr. Villa-Forte wants me to stay at 5 for a month. I so want to get off of this nasty stuff.
I have historically had a rapid build up of ear wax and have to get my ears flushed out regularly. Is this a symptom of GPA? Any others have this?
I have not had any giant nasal crusts in a long time. I continue to rinse my sinuses regularly but very little coming out. :)Yes, it seems that the tapering off the preds is from the slowest and longest part of this disease. My son is now being lowered weekly by five; now at 55. Good luck to all.

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[Pete]

I taper to 5 mg Prednisone this Friday :) . Dr. Villa-Forte wants me to stay at 5 for a month. I so want to get off of this nasty stuff.
I have historically had a rapid build up of ear wax and have to get my ears flushed out regularly. Is this a symptom of GPA? Any others have this?
I have not had any giant nasal crusts in a long time. I continue to rinse my sinuses regularly but very little coming out. :)

Sounds like you are in pretty good shape overall. As far as ear wax buildup is concerned, I doubt that it's related to wegs. I usually stand in the shower and let the stream flow directly into my ear canal. That, and wearing hearing aids, keeps my ears pretty free of wax. My childhood ENT always reminded not to put anything smaller than my elbow into my ears... :)

Good news about the nasal crusting.

I see Dr Villa Forte at the end of the month. I'm planning to discuss tapering off pred (been at 5 mg/day for three years) and also getting off bactrim.

Good luck!!

[John S]

https://www.youtube.com/watch?v=X0W9yKmzp0k

In late February I gave up playing fretted instruments like guitar and ukulele because my hands were covered in Granuloma Annulare sores. Rituximab cleared them up quickly and I've been playing again since July.

[Alysia]

https://www.youtube.com/watch?v=X0W9yKmzp0k

In late February I gave up playing fretted instruments like guitar and ukulele because my hands were covered in Granuloma Annulare sores. Rituximab cleared them up quickly and I've been playing again since July.

Wonderful :) Thanks for sharing John. I am so glad you can play again. Keep on playing :)

[elephant]

You have a great rheumatologist and she will give you the right treatment.

[John S]

My sister sent me this video. This is not me:

https://facebook.com/HotSpringsBroadcast/videos/1973992779549499/

[drz]

My sister sent me this video. This is not me:

https://facebook.com/HotSpringsBroadcast/videos/1973992779549499/

Good video about GPA and how it can affect one.

[John S]

My infusion of Rituximab was in May. I believe I am experiencing a flare right now. Flare is such an appropriate word for this. A week ago, I started getting the headaches again and the nasal flush started bringing up the hunks again. I'm already feeling miserable. The headaches have increased in intensity and frequency, the crusts are building faster, I'm feeling exhausted, it feels like something is chewing on the back of my eye again and the sores are starting to appear on my hands.
I put a message into Dr. Villa-Forte and now am waiting to hear back from her.

[Alysia]

My infusion of Rituximab was in May. I believe I am experiencing a flare right now. Flare is such an appropriate word for this. A week ago, I started getting the headaches again and the nasal flush started bringing up the hunks again. I'm already feeling miserable. The headaches have increased in intensity and frequency, the crusts are building faster, I'm feeling exhausted, it feels like something is chewing on the back of my eye again and the sores are starting to appear on my hands.
I put a message into Dr. Villa-Forte and now am waiting to hear back from her.

Sounds like the beginning of a flare. I am sorry. The rtx works like a shape of normal curve which lasts about 6 months. At the edges of the curve, wg is more active. You are around the 6th month. So I guess its time for the next treatment. I am glad that you have a good dr.

[John S]

I had a Rituximab treatment in October and another in early November. The symptoms are now under arrest. I do feel kind of run down and my eyes never seem as good as they were in pre-disease days. I suspect that these might be permanent conditions now. I'm adapting my behaviors to the conditions as they exist. I'm trying to enjoy every day to the max.
We took 2 grand-children, ages 4 and 11, to Disney World. I rented a handicapped scooter and it was wonderful.

[John S]

My last RTX treatment was early November. The Dr. had me increase Prednisone to 30 mg. I have been tapering rapidly and am down to 6 mg now. About two weeks ago I got a rash around y armpits which has now spread to my elbows. At first I thought this might be due to the drop in humidity (Illinois heating season) or change of laundry detergent. I se that GPA sometimes has rashes associated with it and that RTX sometimes has rashes as a side effect. I couldn't get an appointment with a Dermatologist till late Feb. so right now I'm applying cortisone cream.
Could the rash be due to the rapid tapering?

[Aneinu]

My last RTX treatment was early November. The Dr. had me increase Prednisone to 30 mg. I have been tapering rapidly and am down to 6 mg now. About two weeks ago I got a rash around y armpits which has now spread to my elbows. At first I thought this might be due to the drop in humidity (Illinois heating season) or change of laundry detergent. I se that GPA sometimes has rashes associated with it and that RTX sometimes has rashes as a side effect. I couldn't get an appointment with a Dermatologist till late Feb. so right now I'm applying cortisone cream.
Could the rash be due to the rapid tapering?We have found that rashes can be associated with weg flare up. It also may be a delayed reaction to the rtx. The doctors were not able to confirm by us.

Wishing and hoping that you feel better.

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[Alysia]

My last RTX treatment was early November. The Dr. had me increase Prednisone to 30 mg. I have been tapering rapidly and am down to 6 mg now. About two weeks ago I got a rash around y armpits which has now spread to my elbows. At first I thought this might be due to the drop in humidity (Illinois heating season) or change of laundry detergent. I se that GPA sometimes has rashes associated with it and that RTX sometimes has rashes as a side effect. I couldn't get an appointment with a Dermatologist till late Feb. so right now I'm applying cortisone cream.
Could the rash be due to the rapid tapering?

Yes. Rash can be the result of too fast tapering. Do you have rash as wg symptom ?
I have, for example, ears or joints pains as wg flare symptoms, and I can get them if I taper the pred too fast after being on higher dozes. Try to go back to the doze you were on before the rash started and see if it helps.

[John S]

Today marks 14 days without Prednisone. I'm not on a diet but my appetite has decreased. I've lost 5 pounds so far.

[John S]

My next Rituximab infusion will be May 15. Symptoms started reappearing about a week or two ago. At first , they were sporadic and I wasn't sure they were connected to GPA. Now I can count on them showing up every day. Headaches have been creeping in, along with eye aches, hand weakness and overall malaise. Think I'll call on Monday and ask if they can move up my appointment.

[drz]

My next Rituximab infusion will be May 15. Symptoms started reappearing about a week or two ago. At first , they were sporadic and I wasn't sure they were connected to GPA. Now I can count on them showing up every day. Headaches have been creeping in, along with eye aches, hand weakness and overall malaise. Think I'll call on Monday and ask if they can move up my appointment.

I hope the next treatment helps get you back into a better remission. Those mild symptoms can be stressful since you can't be sure what they indicate and mean for your future.

[John S]

Since January, my skin has been itching like crazy. It seems to get worse every day. I thought that it was just the dry Winter air and low humidity but now I'm not so sure. Is there any correlation with GPA, TTX or Pred?

[Alysia]

Since January, my skin has been itching like crazy. It seems to get worse every day. I thought that it was just the dry Winter air and low humidity but now I'm not so sure. Is there any correlation with GPA, TTX or Pred?

Might be wg related although not typical. Might be not wg related. Do you have other wg symptoms ?

I think that I can say that in most cases when wg is active there will be few symptoms which are wg related and not only one. Although I also saw cases where only one symptom indicated wg activity.

[John S]

This morning I had a 4 inch nasal crust. First one I had since my last RTX treatment in November. Regular headaches have returned, eye aches, hand aches and general tiredness.
All this along with a crazy itchiness.

[Alysia]

This morning I had a 4 inch nasal crust. First one I had since my last RTX treatment in November. Regular headaches have returned, eye aches, hand aches and general tiredness.
All this along with a crazy itchiness.

Sounds like the wg beast is trying to raise its head. It is also almost 6 months since your last rtx. For me when the 6 months are coming to an end, I have more wg symptoms.
When are you going to get your next rtx ? Are you on maintenance med ?

[vickivee1961]

I'd had various symptoms for a year or two. During the months before my diagnosis, I started have a lot of breathing issues and chest pain. My lungs and kidneys were involved. I've weaned down from 100 mg to 50 mg of pred after my discharge from the hospital after a 7 day stay. I've completed 2 infusions of RTX. Feel better but dealing with the side effects of the steroids. Moonface, jacked up sugar and BP. The latter two somewhat under control but my face is the size of Texas! I'll take it if it's the road to remission though!

[John S]

In December of 2015 my Step-daughter, Jennifer https://www.drjenniferkessmann.com/ , a Functional Medicine Doctor from Southlake, TX, came to visit for Christmas. I had an unknown illness that Doctors were just guessing at. They sent me home for the Holidays and I was spending all of my time in bed, with the lights off. Headaches were excruciating, and any kind of light hurt my eyes. My right eye was swolem to the point that it nearly touched my glasses.
Jennifer took one look at me and ordered that we call 911 to get to the hospital. She didn't have any idea what was wrong with me but she probably saved my life. The local hospital never came up with a diagnosis so they sent me to Loyola in Chicago. Loyola ran multiple tests and got me on a steady diet of Prednisone.
After a few months, Jennifer sugested that I go to Cleveland Clinic. In Cleveland, I met Dr. Villa Forte who diagnosed the Wegs and me on a recovery course.
Now that I have been in recovery for a few years, I am trying to lose weight and get my health in order. I've lost 40 pounds, so I'm at the weight I was Christmas 2015. I'm trying to get off insulin and blood pressure medication. My step-daughter can not treat me, her office is in Dallas, but I do ask her advice and she always is spot on.
This Christmas, I pray that I won't be in the hospital. I'm feeling better than I have in 10 years and I think I'll feel even better in the coming year. I hope to lose another 60 pounds to finally get rid of my "Quit smoking weight".

[Pete]

Here’s hoping (and expecting) your prayers will be answered. As Thanksgiving approaches, I remain thankful, especially my former PCP Dr Steven Draeger (retired) and Dr Villa Forte. I was in the initial stage of disease onset when I first saw Dr Draeger. He, like your step daughter, quickly realized I was very sick, but also that he didn’t know how to treat me. A week in the hospital at Ohio State yielded the GPA diagnosis and a treatment regimen. After about 18 months, I found this forum and learned that a worldwide center of excellence in vasculitis at Cleveland Clinic was within reasonable driving distance. I was allowed to self refer to Dr Villa Forte. She’s the best!! I look and feel like I did pre-GPA.

You’ll get there!! Just keep on keeping on...

[John S]

I just got back from Cleveland Clinic. Dr. Villa-Forte ordered one in fusion of 1000 units of Rituxin this time. Every previous time has been two treatments of 1000, two weeks apart. She told me that I'm set to go to 500 units in 6 months. One of the nurses in the infusion center said she remembered what I was like the first time I was there and that I could be a poster boy for Rituxin. :)
God bless Dr. Villa-Forte and the Cleveland Clinic. I could choose to get my treatments in Chicago now and save 1000 miles of driving but I like this Doctor. She keeps up with all of the latest studies on treatment protocol and really, really, really knows her way around this disease.

[John S]

I’m approaching my 3rd anniversary since diagnosis. My next rtx infusion is next Thursday. Daily mild headaches started coming back in January. Blood pressure has increased dramatically and For the last two weeks I have had recurring bouts of muscle pain in my back and/or left upper arm. These pains appear and disappear spontaneously.
i suspect that all of these symptoms are related to GPS, but I’m not sure.

[drz]

I’m approaching my 3rd anniversary since diagnosis. My next rtx infusion is next Thursday. Daily mild headaches started coming back in January. Blood pressure has increased dramatically and For the last two weeks I have had recurring bouts of muscle pain in my back and/or left upper arm. These pains appear and disappear spontaneously.
i suspect that all of these symptoms are related to GPS, but I’m not sure.

One of our wise members years ago said "Just because you have GPA doesn't mean you can't also have another problem"
Of course many new strange symptoms do appear from GPA from time to time but it is good to get them all assessed cause some times they might have another cause or need some extra attention and/or treatment. Some residual symptoms of GPA that come and go may improve from an increase in pred meds.

[John S]

Once again I am a week away from Rituxin infusion and I find headaches and fatigue have been on the increase. I’m going to get this infusion in Chicago rather than Cleveland Clinic.
I hope that the virus crises will have passed by next March so that I’ll be able to see Dr. Villa Forte but for right now, no overnight trips.

[John S]

I get Rituxin today. For the last month I have had three separate days of fevers. Each bout was after going on a bike ride. Temperatures up to 103+. No infection, no Covid, I’ve just read that fevers may be a symptom of GPA. I know that not everything is related to Wegs but I suspect this is. Supposedly, exercise can cause autoimmune flares.
If they are related they should go away in a few weeks.

[John S]

Dr. Villa Forte told me that my over reaction to exercise is probably not related to GPA. It really doesn’t matter what causes it.
I recently bought an electric assist bicycle. I wear my heart rate monitor when I ride. Now I’m keeping my pulse at a maximum of 80 (previously it was 100). No more incidents since I made this change.

[John S]

Five years ago, family had gathered at our home a few days before Christmas to celebrate the festivities. I spent most of the time in bed with massive headaches. It got worse in the light so I stayed in the darkened bedroom. One of my eyes was swollen and we had no idea why I had been having these weird symptoms.
I spent Christmas in the hospital. I had a “Fall Risk” wrist band and an I.V. My wife, children and grand children tried to make it as nice as could be.
I am so grateful for my treatment team.

Merry Christmas to all.

[John S]

It’s been a few years since I had the granuloma annulare spots on my hands. Suddenly, similar spots are showing up on feet and legs. I believe they are associated with GPA.

[drz]

I just got a phone call from Dr. Villa-Forte. She has reviewed my files and the recent CT scan of my lungs and has confirmed the diagnosis of GPA. My local rheumatologist called it "Limited Wegener's". Dr. Villa-Forte prefers the term "mild GPA". To me that's six of one, half a dozen of the other.
She is prescribing 30 mg Prednisone, infusions of Rituximab and a liquid antibiotic (I'm allergic to the sulfa in Bactrim).
The next step is to get my local rheumatologist to work with Dr. Villa-Forte. After a year and a half, I hope to start getting better.
I'm hopping on the train !!!!!!! Next stop......wellness?

I also have a sulfa allergy so they give me the half of Bactrim that is not sulfa Trimethoprim and Pentamadine inhalant treatment every 4 weeks. I think the term limited or mild is intended to indicate it is not in major organs like lungs or kidneys but it i still a serious issue and can change if you do get correct treatment so it is good you take it seriously. Hopefully you will get into a good remission soon and remain there for years.

[John S]

The biopsy of my new sores came back as eczema

[Pete]

The biopsy of my new sores came back as eczema

I hope the treatment plan works.

[John S]

I see Dr VillaForte in the morning, then an infusion. I’ll ask her about Evusheld.

[John S]

The good doctor said that my next infusion of 500 units can be in 8 months (unless symptom appear).
Evusheld can not be given at the same time as Rituximab. Since I live in the Chicago area, I’ll need to get my local rheumatologist to prescribe it, depending on availability.

[jrslim]

Hey John, Good luck with everything!

[John S]

I got the call yesterday. I get the Evusheld tomorrow.

[John S]

I’ll be getting an infusion at Loyola in Maywood, IL today. I’m still getting 500 units every six months. Rituxin has done miracles for me. I rarely think about Wegeners.