the long road to diagnosis

[makabe]

I haven't posted in a while, but thought I'd check back in as I start MTX today.

It seems to be the consensus that I am weird, even for a WG patient. I'm at a point where most doctors agree I have WG, but without as much evidence as they would like. I had sinus reconstruction in February that showed no granulomas upon biopsy, but I bled for 15 hours straight afterwards, which everyone felt like was an indication of vasculitis. Go figure.

Since then, my pred (all I have been on up until today) was tapered down from a high of 65 mg to just 5 mg. a day. When I crossed the threshold from 10 mg down to 5, my symptoms all reappeared... Joint pain that moves from joint to joint, sinus infections, ear infections, almost daily fevers, MAJOR fatigue, severely dry eyes/eye pain, dry mouth, persistent but not serious cough (I call it a kitten cough.) My ANCA was positive at first, but is now negative.

I was also diagnosed with POTS, a heart "condition" that is considered to be a defect in the autonomic nervous system caused by autoimmunity. Treatment for that has helped a lot.

Now that the symptoms are back so clearly, the rheumatologist I see has decided to try MTX with the pred to see how if I do better. I am also switching over to a rheumatologist that has consulted with mine up until now. He's moved to Philadelphia from Boston, where he was the director of the Vasculitis Center. Probably best for me to be with him either way.

On one hand, I certainly don't want to have WG, so I've not pushed for them to definitively call it that. On the other hand, I'd sure like to know what the heck is going on and just get on with treating it.

I'm nervous about taking this first round of MTX, and am praying for minimal side effects!

[drz]

I haven't posted in a while, but thought I'd check back in as I start MTX today.

It seems to be the consensus that I am weird, even for a WG patient. I'm at a point where most doctors agree I have WG, but without as much evidence as they would like. I had sinus reconstruction in February that showed no granulomas upon biopsy, but I bled for 15 hours straight afterwards, which everyone felt like was an indication of vasculitis. Go figure.

Since then, my pred (all I have been on up until today) was tapered down from a high of 65 mg to just 5 mg. a day. When I crossed the threshold from 10 mg down to 5, my symptoms all reappeared... Joint pain that moves from joint to joint, sinus infections, ear infections, almost daily fevers, MAJOR fatigue, severely dry eyes/eye pain, dry mouth, persistent but not serious cough (I call it a kitten cough.) My ANCA was positive at first, but is now negative.

I was also diagnosed with POTS, a heart "condition" that is considered to be a defect in the autonomic nervous system caused by autoimmunity. Treatment for that has helped a lot.

Now that the symptoms are back so clearly, the rheumatologist I see has decided to try MTX with the pred to see how if I do better. I am also switching over to a rheumatologist that has consulted with mine up until now. He's moved to Philadelphia from Boston, where he was the director of the Vasculitis Center. Probably best for me to be with him either way.

On one hand, I certainly don't want to have WG, so I've not pushed for them to definitively call it that. On the other hand, I'd sure like to know what the heck is going on and just get on with treating it.

I'm nervous about taking this first round of MTX, and am praying for minimal side effects!

Hope Merkel can help you sort it out. He has a very good reputation in his field. Good luck and best wishes for better health.

[Dirty Don]

I'm nervous about taking this first round of MTX, and am praying for minimal side effects!

I've been on pred and mtx for 10 months now...aside from pred being weird, the mtx doesn't seem to have many side effects. Had some hair loss, but extra folic acid stopped that & all has regrown. Other than that, nothing noticeable for me...good luck!

[Natalie]

Good luck with The MTX , you sure have had a rough time of late , 15 hour nose bleed sounds horrible! :( Can I ask how you were diagnosed with Heart condition during all this . Nat

[Lightwarrior]

I haven't posted in a while, but thought I'd check back in as I start MTX today.

It seems to be the consensus that I am weird, even for a WG patient. I'm at a point where most doctors agree I have WG, but without as much evidence as they would like. I had sinus reconstruction in February that showed no granulomas upon biopsy, but I bled for 15 hours straight afterwards, which everyone felt like was an indication of vasculitis. Go figure.

Since then, my pred (all I have been on up until today) was tapered down from a high of 65 mg to just 5 mg. a day. When I crossed the threshold from 10 mg down to 5, my symptoms all reappeared... Joint pain that moves from joint to joint, sinus infections, ear infections, almost daily fevers, MAJOR fatigue, severely dry eyes/eye pain, dry mouth, persistent but not serious cough (I call it a kitten cough.) My ANCA was positive at first, but is now negative.

I was also diagnosed with POTS, a heart "condition" that is considered to be a defect in the autonomic nervous system caused by autoimmunity. Treatment for that has helped a lot.

Now that the symptoms are back so clearly, the rheumatologist I see has decided to try MTX with the pred to see how if I do better. I am also switching over to a rheumatologist that has consulted with mine up until now. He's moved to Philadelphia from Boston, where he was the director of the Vasculitis Center. Probably best for me to be with him either way.

On one hand, I certainly don't want to have WG, so I've not pushed for them to definitively call it that. On the other hand, I'd sure like to know what the heck is going on and just get on with treating it.

I'm nervous about taking this first round of MTX, and am praying for minimal side effects!

If the consensus is that you are weird then you have most definitely found the right group (LOL). We seem to find a way to defy the odds and sustain more than one condition that happens to 1 in a million (okay, I am exaggerating, but not by much). It is what it is and while I hope you don't have Wegs, your symptoms are eerily familiar.

I hope that you are wrong and that you do not have Wegs, but either way we welcome you to our group. We will understand your fears and frustrations and celebrate with you when you successfully drop your pred dose by 0.25mg.

MTX has not been too bad to me, I had to lower my dose because it dropped my white count but other than that it hasn't been to bad. This may not be the right drug for you though. You need to run as fast as you can (or drive without getting a ticket) to the nearest Weg's specialist) You can find them on the Vasculitis web page. Here is the link:

Granulomatosis with Polyangiitis (Wegener's) (GPA) | Vasculitis Foundation (http://www.vasculitisfoundation.org/wegenersgranulomatosis)

[Fran]

Hi Karen, Well I googled POTS and I am very glad the treatment you are receiving is helping with this !!!!!

I have been on methotrexate for many years and don't find it too bad, but make sure you get folic acid as this helps to deal with the methotrexate side effects.

Do hope you get 'sorted' soon, best wishes,

Fran

[annekat]

I have been on methotrexate about a month and find that it makes me drowsy and fatigued for a day or two. I have gotten around this partially by taking it at night before bed. It seems to be getting better. Also, my doc didn't mention the folic acid at first, so I started taking it on my own, and then the next time I went in he mentioned it. I'm taking 1.2mg/day of that and 10mg/wk of MTX.

[renidrag]

You made the right move with Merkel. Boston's loss your gain. We do still have Dr. Monach and Dr. Grayson, both very good and worked with Merkel. Can't forget Dr. Stone @MGH.

[makabe]

Well, the first round wasn't too bad!! No nausea, which was my biggest fear. With POTS, any vomiting at all dehydrates me so quickly that I always land in the ER for fluids. I was pretty tired the day after I took it, but otherwise can't complain. I feel pretty good today after resting so much for the last day and a half. I am taking 1 mg of folic acid with the MTX and pred.

I ended up with the POTS diagnosis when I was seeing a ton of docs, always had a high heart rate in their offices, but was concerned that no one seemed to be worried. When I brought it up, my primary sent me to an interventional cardiologist who figured it out almost immediately. Thankfully the treatment worked right away and I don't even have to take blood pressure meds anymore!

I am on my way to a true WG specialist... I'm glad to hear some of you know of him and approve!

[Sangye]

I'm glad you're going to be treated by a Wegs specialist, Karen. Dr Seo calls less severe forms of Wegs "Wegs Lite." LOL He's also talked about how it can take time for Wegs to really take hold. That's consistent with how holistic docs view AI disease-- that it takes time to develop, even if the symptoms appear abruptly. At any rate, you will be in excellent hands with Dr Merkel.

[Dirty Don]

He's also talked about how it can take time for Wegs to really take hold. That's consistent with how holistic docs view AI disease-- that it takes time to develop, even if the symptoms appear abruptly.

After much discussion & analysis & retracing, that is exactly what happened with mine. I presented very mild symptoms about 3 to 5 years ago along with an onset of anxiety. Then last year, the main symptoms appeared abruptly, probably triggered by a viral infection, and whammo! But, according to docs, the anxiety was probably a physical reactionn to 'something' being wrong with the body, although anxiety in and of itself is a chemical deficiency...hmmmmm

[Sangye]

Interesting about the anxiety, Don. It can be due to your body detecting that something is off, but I lean more towards the chemical imbalance hypothesis. Many things can create such an imbalance-- toxic exposure, prolonged stress, chronically staying up very late, etc....

[Dirty Don]

Interesting about the anxiety, Don. It can be due to your body detecting that something is off, but I lean more towards the chemical imbalance hypothesis. Many things can create such an imbalance-- toxic exposure, prolonged stress, chronically staying up very late, etc....

Yup, done allllll those AND have a history of bi-polar in the family...just thought I'd throw Wegs in on top of the mess...why not...I always look for motivating factors in life! LOL!

[vdub]

From the way you talk, I'm guessing your mtx was thru IV. I was on mtx tabs for 18 months. Starting first with 20mg/wk for about 4 months and then ramping up to 25mg/wk for the remaining 16 months. At 25mg, I felt pretty bad for the 2nd, 3rd, and 4th days after taking it. It wasn't exactly knee-dragging bad, but it was very uncomfortable.

I was really thankful when tapered me off of mtx last Aug. Unfortunately, that only last for about 4 months and I was further dx'ed with psoriatic arthritis, so I was put on a maintenance dose of 10mg/wk. 10mg/wk is very tolerable, tho. I'd rather not have any, of course, but 10mg isn't bad at all.

Good luck to you!

[makabe]

I've been taking oral MTX. I went up to 20 mg. this week. Three doses/weeks so far, and it hasn't been too terrible. I'm super tired the night I take it (in the afternoon) and most of the next day, but then I bounce back. I also find I have zero appetite while taking it. Not a bad thing, but if my tummy gets totally empty, I end up a bit nauseated during the first day of the dose. Not a major problem to remedy, obviously!

I did notice this week that I have not really had any joint pain for a few days. Seems a bit early for MTX, but I'll take whatever improvement I can! Can't recall the last time I went days without something hurting!!

[Dirty Don]

I'm on oral mtx...was experiencing nausea, severe lethargy...doc had me split the once a week dose into two doses 12 hours apart...nausea and most of the lethargy went away...just a thought.