shankxonline - My path to identify GPA and overcome it

I am going through a lot of blood tests, urinalysis, CT scans, MRIs ... just to get to know if its GPA, which organs are affected and then get away from current Prednisone to a non-steroid immunosuppressant med.

Time period: Last 2 months

Symptoms:

• A lot of joints and muscles ache. Mostly in bottom of both feet, elbows and back of the hands
• Pressure in the top of eye, red eyes
• Slight pain on the front of nose (sinus)

Whats known:

• Kidney functions are normal
• Lungs are clear from CT scans taken
• No pain or inflammation in the throat area

Whats still unknown:

• Nasal, Eyes and head MRI scans

Keeping me awake:

• What part of my body starts paining tomorrow?
• When can I get over Prednisone and to a known med which will balance my immune system
• Do I need to go to GPA specialist or continue with Rheumatologist I have

Share your thoughts in this thread. I have gotten great response in the new patients thread - but here I will keep posting my path ahead as I go through the experience.

The first thing that jumped out at me was regarding your desire to discontinue prednisone when you start one of the standard immunosuppressant meds, that is IF you are found to have GPA or a similar, but less common Vasculitis, such as MPA. It is generally accepted that people stay on prednisone when started on an immunosuppressant med. It would be very unusual not to use both together, or start them both at the same time, even if you are already taking pred. They each perform somewhat different functions and they work together. If your current rhematologist says otherwise, it may mean you need a more experienced specialist. I'm not sure if you are the one in the SF Bay area, but it should be a lot easier to find a good specialist there than in most places.

The other thing I noticed was a biopsy wasn't mentioned, unless I missed it. It's great that you don't apparently have lung or kidney involvement! But those can crop up later without proper treatment. If you have nasal involvement, a biopsy can be done there, or a specialist would know where else based on your symptoms. Nasal biopsies are known to give false negatives fairly often, but if that is the place that makes the most sense according to your symptoms, then it's worth a try, and in my case it provided a positive result, which was considered conclusive. It can be done on an outpatient basis, and in my case was done on the spot in my ENT's examination room. If you don't have an ENT, you should, as they are better able to see what is going on in your nasal area than most rheumatologists, and would be the one to do the biopsy. Your rheumatologist should know all this.

With the nasal, eye, and joints involvement, and a positive ANCA if I remember right, it does sound like GPA or another Vasculitis. If you had a positive c-ANCA, it would usually indicate GPA, and if it was positive p-ANCA, it would usually mean MPA. What little eye and joints involvement I had disappeared quickly with treatment, but my lung and nasal/sinus/ear involvement took considerably longer. I was on immunosuppressants and prednisone the whole time, and am still on a maintenance med and low dose of pred, after 9 years. Yet I am in better shape than many. At 2 months, you will be lucky to have gotten an early diagnosis, if you get one. Mine came 2.5 years after start of symptoms. An early dx means better chance of quicker remission and less damage to one's tissues and organs.

I might sound like I know a lot, but it is only info I've soaked up in 9 years of being on this forum and reading lots of case histories as described by patients. And it can be corrected if necessary. Everyone's case is at least a little different and sometimes a lot. Sorry I went on so long. Best of luck and success at getting this figured out and taken care of!

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It

Now looking at your original post, where there was some kidney stuff going on, and here, where you say kidney function was found normal. If there is any doubt about WG being in your kidneys, a biopsy there would be the way to go, I think. But your nephrologist would be the one to know that and anything else regarding the kidneys.

Anne

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Originally Posted by annekat

Now looking at your original post, where there was some kidney stuff going on, and here, where you say kidney function was found normal. If there is any doubt about WG being in your kidneys, a biopsy there would be the way to go, I think. But your nephrologist would be the one to know that and anything else regarding the kidneys.

Anne

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Hi Anne - they have concluded that my kidney issue is different from the (possible) GPA issue which seem to have suddenly shown up at the same time. I am having surgery to get kidney stone out from my kidney soon.

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Originally Posted by annekat

The first thing that jumped out at me was regarding your desire to discontinue prednisone when you start one of the standard immunosuppressant meds, that is IF you are found to have GPA or a similar, but less common Vasculitis, such as MPA. It is generally accepted that people stay on prednisone when started on an immunosuppressant med. It would be very unusual not to use both together, or start them both at the same time, even if you are already taking pred. They each perform somewhat different functions and they work together. If your current rhematologist says otherwise, it may mean you need a more experienced specialist. I'm not sure if you are the one in the SF Bay area, but it should be a lot easier to find a good specialist there than in most places.

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My Rheu is still figuring it out. Its just me not wanting to continue on Prednisone (or any steroid) for long period if possible. I don't know what long means. Right now at 40mg per day.

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Originally Posted by annekat

The other thing I noticed was a biopsy wasn't mentioned, unless I missed it. It's great that you don't apparently have lung or kidney involvement! But those can crop up later without proper treatment. If you have nasal involvement, a biopsy can be done there, or a specialist would know where else based on your symptoms. Nasal biopsies are known to give false negatives fairly often, but if that is the place that makes the most sense according to your symptoms, then it's worth a try, and in my case it provided a positive result, which was considered conclusive. It can be done on an outpatient basis, and in my case was done on the spot in my ENT's examination room. If you don't have an ENT, you should, as they are better able to see what is going on in your nasal area than most rheumatologists, and would be the one to do the biopsy. Your rheumatologist should know all this.

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Her plan seems until she sees an organ where its likely to have affected she would go for biopsy. Lungs and kidney tests have come out normal and I was directed to specialists in those fields who said biopsy is not needed. Eye/Nasal reports to be seen.
Joint pains and muscle dont seem to give them enough evidence to do any biopsy it seems.

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Originally Posted by annekat

With the nasal, eye, and joints involvement, and a positive ANCA if I remember right, it does sound like GPA or another Vasculitis. If you had a positive c-ANCA, it would usually indicate GPA, and if it was positive p-ANCA, it would usually mean MPA. What little eye and joints involvement I had disappeared quickly with treatment, but my lung and nasal/sinus/ear involvement took considerably longer. I was on immunosuppressants and prednisone the whole time, and am still on a maintenance med and low dose of pred, after 9 years. Yet I am in better shape than many. At 2 months, you will be lucky to have gotten an early diagnosis, if you get one. Mine came 2.5 years after start of symptoms. An early dx means better chance of quicker remission and less damage to one's tissues and organs.

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Keeping my fingers crossed and all the inputs from this forum helps a lot.

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Originally Posted by annekat

I might sound like I know a lot, but it is only info I've soaked up in 9 years of being on this forum and reading lots of case histories as described by patients. And it can be corrected if necessary. Everyone's case is at least a little different and sometimes a lot. Sorry I went on so long. Best of luck and success at getting this figured out and taken care of!

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Thank you for your detailed post and I need all the inputs I can get until I know what I have and where it takes me! So - THANK YOU!

Yes, 40mg is kind of a lot of pred to be on for two months. Everyone handles it differently, some can't tolerate it and some actually like it! Or the improvement it makes for them, like when I was getting short tapers of it for what was thought to be allergies and sinus infections, which turned out to be GPA. It always made a huge difference and even my voice cleared up. Anyway, if you are found to have GPA, once they start the immunosuppressant, they will likely start tapering the pred down as your symptoms improve, to levels where you can live with it better. It's dangerous to stop it all at once when at that dose for that long.

True, joint pain doesn't provide much to biopsy, and eyes would be difficult and maybe risky. I have heard of people with bleeding gums getting a dx from tissue there. But a real GPA specialist can often proceed with a dx based on symptoms and response to meds, when a biopsy is impossible or inconclusive. And I'm not trying to put down your rheumy when he or she may be competent and obviously knows where to turn to cover all angles. And more experienced GPA docs may be available for consultation, even for free, by any docs needing help or confirmation about handling of a case. The Vasculitis Foundation site has had info on that, though I haven't looked for some time.

I hope to see some more responses to your post. It's always good to hear different points of view. Good luck!!!

Anne

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I remember being diagnosed with plantar fascitis from pain in my feet years before I was finally and correctly diagnosed with Wegener's. The treatment for the plantars of course did little or nothing to help the pain. And all the foot pain went away after treating the Wegener's.

The treatment for scleritis did help those symptoms. The treatment for nose bleeds and crusting made things worse until I was treated for Wegener's. I had various GPA symptoms for two or three years before getting the right diagnosis and treatment but then things were really bad with lot of permanent damage. It is good to hear your lungs, hearing vision and kidneys still seem OK since those are the most likely areas for permanent damage in your body. I lost my balance too but that is not very common. They did save my vision from any significant damage from the GPA but my diabetes has also impaired that.

Welcome to the forum. Please remember that being on 40mg pred for 2 months already - should change the symptoms and the tests' results. While trying to figure out your diagnosis the dr needs to check what were your symptoms and labs BEFORE you have started the pred. Wg expert will know.

As far as I know positive C-anca is an indication for WG or for Crohn's disease.

Update 9/10/19: Had my kidney stones removed surgically - so one of the parameters is gone. Planned MRI of head and orbits planned followed by more tests I assume. Not knowing if its GPA and where all will it affects is still killing me.
Prod is ON and I feel good so far. Some joint pains continue and little eye pressure (with redness) persists through the day.

I just registered as a member to this forum. I have spent this week trying to learn everything about this Wegeners condition. I read your thread with interest because it includes two people, one with experience on this condition and one who has not had this condition for a long time, and I want to know and learn about your path, and what you have done. I was just diagnosed with Wegener last week. It started in May, what my doctors thought it was just a sinus problem, and I got antibiotics, and nose sprays, and 5 days steroid/anti -inflammatory pills. Three or four times I went to different doctors and all gave me the same. Finally I requested to be referred to an ent doctor. This doctor gave me antibiotic and steroids for 14 days, but nothing happened. I had a CT Scan (I don't know why he could not detect anything) so he thought it was a "normal" sinus problem and he scheduled surgery for chronic sinusitis. During surgery he found that the problems was not sinus but granulomas, so he did non proceed with surgery. They made a biopsy of the granulomas and found they were not cancerous. Tuesday 10-8-19, I will go and she a specialist on this and I will find out where i am. My ears got clogged and they got to a point where I could not hear anything, and my septum has collapsed some. My ENT doctor referred me to the second specialist that I am going to see on Tuesday, but put me on steroids and I have started taking the steroids before I see the second doctor. My ears have clear some, and I can hear a person 4 to 5 feet away from me, but what worries me know is the rest of my body, lungs, kidneys, and everything else. How do I know what has been affected so far? I also started having pain on the bottom of my feet. Everything now feels OK maybe because I am taking the steroids. My septum worries me because it has collapsed some and I can see the saddle chair a little bit. I would like you to give me any advice on what's next. What is going to happen when I see this second doctor and what is normally done, and how should I be ready for this? I will appreciate any advice you can give me. Thank you very much. I am 57 years old, female, and I am a high school teacher (Teach Spanish). I have stopped working since September 15 and I am also concerned about my job. I guess everything depends on what this second doctor says.

Annekat, I have not read all your posts but I think they are very informative, and I hope to read them and learn a lot from you. Lea

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Originally Posted by Lea

Annekat, I have not read all your posts but I think they are very informative, and I hope to read them and learn a lot from you. Lea

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Hi, Lea, and welcome to the forum. I have been coming here since March 2011 right before I was diagnosed. My saddle nose happened suddenly around the same time that I was in the hospital overnight for tests including a lung CT scan. I'd been seeing an ENT for 2.5 years for what seemed like a never ending series of sinus and ear infections. From reading the forum and getting the saddle nose, I pretty much knew in advance what was going on, plus the CT scan showed probable lung involvement. I went in to the same ENT and got a nasal biopsy which, though they are not always reliable, was conclusive for Wegener's. Lung biopsies are more reliable but much more invasive, so I was lucky that the nasal one worked.

Well, it gets pretty complicated, but the point of all that is that everything I have learned about this disease I have learned right here on the forum! There are those on here who know more than I do, especially about biochemical or clinical aspects. But I guess I have just soaked up a lot of information like a sponge! And you will learn a lot the same way, by reading lots of posts, and searching the archives is a great resource going back many years. There's a link for that on the main page. I know it is overwhelming, though, to try to do much research when you are still trying to wrap your head around having WG. So just take it one day at a time.

I should have said this before, but you might want to start your own introductory thread as a new member. You might get more attention and responses that way, with your own words in the subject line. You could even have the moderator move your post or you could copy and paste it to a new location. Or just write a new post. If you need help with anything or want to ask me anything, feel free to send me a private message. There's a link for that, too, or you can do it by clicking on a member's avatar. I've forgotten a lot of how the forum looks on a computer, but I can always go there. I know I didn't answer all your questions, so just keep plugging away at it. Best of luck!

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Hi Lea,
Welcome to our forum. You will learn a great deal here and find plenty of support.
Anne is right. If you move this up to New Member, you will get a lot more responses.
Your question of what to expect has one very solid answer-expect the unexpected. This disease comes in so many forms, with different medical treatments depending on the patient and doctor.
Having a top notch doctor, experienced with Wegeners is key. Unfortunately, some people don’t live near one, nor do they have the ability to get to one.
I go to Duke, others have great luck with CC. More good ones across the country.
By having a variety of blood tests and yes urine tests, your doctor should be able to determine where you are and what course of action should be taken.
I was diagnosed over a year before I found this site. I was just plain too frightened to read about what I had, stuck my head in the sand.
After changing doctors and going to Duke, I feel I am on the right path. RTX infusions have been great for me, I take bactrim three times a week, and yes I am on the dreaded prednisone. That is an up and down thing.
For the sinus problem, I got a Sinu Pulse machine (Amazon) I also use Flonase and for the leg and feet pain I take nightly Epi Soak baths.
My C-anca always comes back positive, but that is not the only thing to consider. Most of the time I feel pretty good. I am retired and have had to make some lifestyle changes.
Early on I had tooth involvement, so it’s like I said expect the unexpected.
Tell us what your new doctor says and what the next steps will be.
I hope you have a pretty fair sick leave. Teachers need to be taken care of too. Spanish was my HS language. I just took enough to get into college. Unfortunately, I didn’t retain it. I am trying to be lite and add a little levity to the situation. Stress is a trigger for our disease. So try to stay calm, let the doctors do their work, you do yours and the Power to be will take care of the rest.
Masha

Annekat- Our symptoms are so similar to each other, ugh, I hate this disease! But you are right, we are much better off than some. I am down to 7.5mg Prednisone, my voice is hoarse a lot of the time, sinus issues, constant cough, even my heels hurt lol. Positive GPA from nasal biopsy, mass (in lung) with needle biopsy confirmed GPA. I still have double vision in rt peripheral field, they still don't know if that will return to normal. Another Retuximab round in December. Sherry

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Originally Posted by sshiveley

Annekat- Our symptoms are so similar to each other, ugh, I hate this disease! But you are right, we are much better off than some. I am down to 7.5mg Prednisone, my voice is hoarse a lot of the time, sinus issues, constant cough, even my heels hurt lol. Positive GPA from nasal biopsy, mass (in lung) with needle biopsy confirmed GPA. I still have double vision in rt peripheral field, they still don't know if that will return to normal. Another Retuximab round in December. Sherry

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Sherry, for me it took 2 rounds of rtx (6 months between) and 9 months since I started it, in order to see a real difference.

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Originally Posted by sshiveley

Annekat- Our symptoms are so similar to each other, ugh, I hate this disease! But you are right, we are much better off than some. I am down to 7.5mg Prednisone, my voice is hoarse a lot of the time, sinus issues, constant cough, even my heels hurt lol. Positive GPA from nasal biopsy, mass (in lung) with needle biopsy confirmed GPA. I still have double vision in rt peripheral field, they still don't know if that will return to normal. Another Retuximab round in December. Sherry

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Hi, Sherry,
Actually my symptoms are really much better now, since I started treatment in 2011. That doesn't mean it will take you that long, since you had a fairly quick diagnosis and I was living with symptoms for 2.5 years before dx, which gave more time for permanent damage to occur, hence the saddle nose, hearing loss, reduced lung function, etc. Although I had a fairly inexperienced doctor for WG, he was good enough to get me started on the best treatment available to me at the time. I did have a great deal of improvement in the first year, and after that, it took a few years longer to get to where I am now. It sort of leveled out for awhile. I do remember the hoarse voice and still get that sometimes, while most days I sound just fine. Allergies and stress do affect me. I do have double vision but in both eyes together, not just one, so it is different than yours, and if I close one eye, the other sees perfectly. It is thought by ENT and opthalmologist to be caused by sinus erosion under one eyeball so that the eyes can't work well together. Not to go on and on about me, but you are doing very well to be down to 7.5mg of pred after such a short time, while I just recently tapered from 7.5 to 5mg. I'm a little concerned that this could be too low too soon for you, causing some of your continued pains and other issues, but on the other hand, those things are pretty common this early on, and tapering pred quickly is a good goal. I'm still impressed at the low number, as long as you aren't having a full blown flare, which it doesn't sound like. So keep hanging in there with the RTX and you can always increase pred later if necessary. Keep us posted on how it goes.
Anne

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Originally Posted by sshiveley

Annekat- Our symptoms are so similar to each other, ugh, I hate this disease! But you are right, we are much better off than some. I am down to 7.5mg Prednisone, my voice is hoarse a lot of the time, sinus issues, constant cough, even my heels hurt lol. Positive GPA from nasal biopsy, mass (in lung) with needle biopsy confirmed GPA. I still have double vision in rt peripheral field, they still don't know if that will return to normal. Another Retuximab round in December. Sherry

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Early in this disease, before it was diagnosed properly, I was having double vision. At one point , my right eye swoll up. The doctors were then treating my symptoms. Lots of Prednisone brought my eyes under control but caused premature cataracts. Once I was diagnosed with wegs and we started on the Rituxin protocol, things started getting better. I've been on it for about 2 1/2 years now with infusions every 6 months. Things are SOOOOOOOOO much better now.

Like the cat poster says "Hang in there".

Hello All - didn't get a chance to come back to this wonderful family with update. 1025/19 - got my kidney stones removed, things went back to normal on blood tests (CRP, ESR etc) and MRI scans came back normal too. Dropped Prednisone to 20mg but then the sinus and eye pressure/redness came back within a week. Clearly indicating a systemic thing going on within my body for GPA. At least - that I know now. Back to 40mg prednisone and getting on Methotrexrate next week or so. Hopefully I find the right balance between Prednisone and Metho. Rheumatologists specializing in vasculitis seem very rare in SF bay area :( 2 known ones are not accepting new patients and that's a bummer. But my Rheu is very responsive and seems to have a good handle on treatment. Praying and hoping it all works out and doesn't cause more flare else where in my body. The unknown path sucks - but at least i know I have it and need to pay attention to it.

Glad you're on a good path now. Kinda surprised there aren't more vasculitis docs around Bay area. I'm at Mayo/PHX and they started me on the pred/MTX path. Took almost 2 years to wean the pred and 4 to get off MTX. Didn't have many side effects. Was off all drugs for about 5 years and after a long flare am now on RTX. Seems to be working...best to you and keep at it!

I take 1 step forward 2 steps back. When I had written that I was down to 7.5 mg of Prednisone, yet another flare up, I was weaning slower this time. Rt eye is beginning to protrude again, Double vision peripherally isn't going to get any better. Rheum bumped me up to 20 mg Prednisone and possibly getting Retuximab sooner. :( Sherry

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Originally Posted by sshiveley

I take 1 step forward 2 steps back. When I had written that I was down to 7.5 mg of Prednisone, yet another flare up, I was weaning slower this time. Rt eye is beginning to protrude again, Double vision peripherally isn't going to get any better. Rheum bumped me up to 20 mg Prednisone and possibly getting Retuximab sooner. :( Sherry

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my eyes have been fine since I went on retuxin

11/6 - Starting with Methotrexate (12.5/week) along with Prednisone currently at 40mg. Rheu is optimistic that I will be able to taper the Prednisone dosage. Anyone else on similar dosage? How was your Methotrexate introduction experience? What should I watch out for?

Eye symptoms remain (redness, pressure) - but other reports look normal (touch-wood!)

I'm on the same dose of MTX as you are. I was started on 10mg/wk about 7 years ago but that is a really low dose, and I flared, so it was raised to 15mg, which is pretty common, though some use more, possibly depending on body weight. I was probably on around 20-30mg prednisone and am now down to 5mg. This is a level that many stay at, due to the difficulty of tapering further, when we have been on pred for several years. It seems these days many docs are getting people off of it before that happens. At first, with MTX, I felt slightly nauseated and just kind of yucky, but I got used to it and now feel pretty much nothing. It helps to split the dose between morning and evening. Some will have worse side effects than others, and I hope you aren't one of them. Good luck!

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I don't post a lot on here, as I too am new to this ugly disease, there are so many that have so much more knowledge about this than I do, so I will continue to read their thoughts and advice. There are days that I have been ready to walk into my boss's office and say that I can not do this anymore, (I work in a level 3 trauma ER) I am constantly exposed to every germ you could and could not imagine, but I have to pay the bills, funny thing, they just keep coming every month haahaa. Some days I feel good, others not so much, decreasing my prednisone takes its toll, I can tell every time I am decreasing that I know I will have to start at a higher dose and then wean again, only to go to a higher dose again, the cycle keeps repeating, spilling blood in my urine, constant runny nose, cough. Seems all I do is complain, but being a part of this forum, I know you all understand how it is. I strive for a positive attitude for attitude is everything. Best of luck to you Shankonline and all of the others struggling.

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Originally Posted by sshiveley

I strive for a positive attitude for attitude is everything. Best of luck to you Shankonline and all of the others struggling.

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Indeed - positive attitude is everything, sshiveley! Seems like the only thing we can have control over!
Good luck on your journey as well! Keep sharing!

Update 12/20/19: Follow ups on blood tests were OK. Reports are getting back to normalcy - ESR and CPR numbers included. Still on Prednisone (30mg) and Methotrexate (20mg/week). Most symptoms are normal but my right eye pain and pressure is pretty high. Opthalmologists have suggested onset of scleritis and treating with local eye drops which are not helping much frankly. Right eye is RED most times, gets worst in night and have started getting some headache and sinus like symptoms on the right side. All in all - the day starts feeling not very fresh and not wanting to wake up at all. But then have to keep positive and fight it!

Any one with scleritis from GPA diagnosis here? Would love to connect.

@all - Happy holidays to everyone in this family! ..

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Originally Posted by shankxonline

Update 12/20/19: Follow ups on blood tests were OK. Reports are getting back to normalcy - ESR and CPR numbers included. Still on Prednisone (30mg) and Methotrexate (20mg/week). Most symptoms are normal but my right eye pain and pressure is pretty high. Opthalmologists have suggested onset of scleritis and treating with local eye drops which are not helping much frankly. Right eye is RED most times, gets worst in night and have started getting some headache and sinus like symptoms on the right side. All in all - the day starts feeling not very fresh and not wanting to wake up at all. But then have to keep positive and fight it!

Any one with scleritis from GPA diagnosis here? Would love to connect.

@all - Happy holidays to everyone in this family! ..

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what is your sed rate?

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Originally Posted by John S

what is your sed rate?

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Its at 20 right now. Was 100+ on first diagnosis.

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Originally Posted by shankxonline

Update 12/20/19: Follow ups on blood tests were OK. Reports are getting back to normalcy - ESR and CPR numbers included. Still on Prednisone (30mg) and Methotrexate (20mg/week). Most symptoms are normal but my right eye pain and pressure is pretty high. Opthalmologists have suggested onset of scleritis and treating with local eye drops which are not helping much frankly. Right eye is RED most times, gets worst in night and have started getting some headache and sinus like symptoms on the right side. All in all - the day starts feeling not very fresh and not wanting to wake up at all. But then have to keep positive and fight it!

Any one with scleritis from GPA diagnosis here? Would love to connect.

@all - Happy holidays to everyone in this family! ..

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Hi,
On 2015 I had a wg flare in my eyes. I caught it "on time" so it was only episcleritis. (Lighter then scleritis).
Sounds like your wg is active and that you need a stronger med. Mtx is not strong enough to treat a flare. It is only for maintenance. Also in my case mtx didn't work, only rtx.
Please talk with your wg dr. And ask for a more serious treatment asap. Sending you prayers.

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Originally Posted by Alysia

Hi,
On 2015 I had a wg flare in my eyes. I caught it "on time" so it was only episcleritis. (Lighter then scleritis).
Sounds like your wg is active and that you need a stronger med. Mtx is not strong enough to treat a flare. It is only for maintenance. Also in my case mtx didn't work, only rtx.
Please talk with your wg dr. And ask for a more serious treatment asap. Sending you prayers.

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Thank you. @Alysia. Yes, I have reached out to my Rheu and will have to switch up the treatment to Rituxan. Prednisone dosage increase helps - but I am not happy with the amount of Prednisone I am taking for such a long time. Hoping things calm down once I move to Rtx. Weird that its only the right eye which seemed to be attacked - but then Wegs is weird I have realized.

I am also having follow ups with Opthal and so far the eye pain and inflammation seems to be on the frontal side of the eye. Hoping to keep it restricted there and not cause more trouble. Fingers crossed.

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Originally Posted by Alysia

Hi,
On 2015 I had a wg flare in my eyes. I caught it "on time" so it was only episcleritis. (Lighter then scleritis).
Sounds like your wg is active and that you need a stronger med. Mtx is not strong enough to treat a flare. It is only for maintenance. Also in my case mtx didn't work, only rtx.
Please talk with your wg dr. And ask for a more serious treatment asap. Sending you prayers.

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For some people, MTX is enough to serve as an initial treatment and to treat a flare. I was started on Cytoxan because I had lung involvement. I think I could have been taken off it a few months earlier than I was and switched to MTX. When I did switch, my doc at the time prescribed too low a dose of MTX, only 10mg a week. Part of that time was overlapping with CTX. Eventually, on the low dose of MTX alone, I had a flare, which was taken care of by raising the dose to 15mg per week, where I have been ever since. Eventually I had another flare, a bit less serious than the first. I had been tapering prednisone and was down to 10mg, which was raised to 20mg, which worked fine, and I slowly tapered back down to my current 5mg. So I did not need to go on any stronger drug to get out of those flares, which consisted of increased nasal crusting, coughing and trouble breathing, low grade fevers, night sweats, and increased fatigue. If I were to get new significant eye issues or any kidney issues, I would not mind a doc telling me I needed RTX or some other stronger med. But no one has ever told me I'm in remission, so it's hard to say whether my MTX is for some kind of maintenance or as a continued treatment, since I still have excess mucus in my sinus and lungs, moderate peripheral neuropathy in my feet, coughing, and fatigue, etc., which I don't consider a flare, but just business as usual. I think those things are related to permanent damage, and I will always have them. My point is that every case is different in severity and symptoms and what doesn't work for one person may work for someone else, and not everyone needs the strongest meds, although there will always be that possibility someday.


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Update Mar 9, 2020:

Sorry folks - didn't get a chance to post an update for some time. Gone through many more steps and tests and docs to be now here...

I did get a second opinion from UCSF vasculitis specialists here in SF and the doc confirmed from the symptoms and tests that I do have GPA. While the joint pains have gone, my right eye issue with redness and pains persisted with Prednisone and now on MTX 25mg/week. Followed up with eye doc specializing in inflammatory conditions and they have dx ed me with scleritis (mild). The eye docs are recommending me to move to Rituxan infusion from MTX to really get a control over the eye issue.

I am still in denial and the thought of "infusion" of a new drug is weighing on my mind. Everything you read about Rtx points to cancer - and I don't want to think about it :(

But .. anyone here who has had scleritis and Rtx experience? Did it work? What are the side effects of Rtx compared to Mtx? How concerned should i be?

My last flare included scleritis in one eye. Pred cleared the scleritis up immediately with no effects, then went on to 3 infusions of RTX to down the flare. I used to take MTX after 1st flare. MTX had more side effects for me than RTX...after 3 infusions of RTX, I feel as well as I've felt in over a year, and just as good as when MTX was working if not better (no immediate side effects). Best to you.

8/15/2020: I switched to sub-cutaneous Methotrexate and it has done a lot of wonders in getting my sceleritis pain down to zero. also the lab numbers are looking good - no inflammatory markers seen. Hoping that this state continues for sometime and I dont have to move to Rtx or other treatments. *praying*
Pred dosage has also come down to 2mg/day.