GPA granulomatosis with polyangiitis

Posted by suska @suska, Sep 15, 2017

Just diagnosed in May, 2017. On a maintenance dose of 12.5 mg. per week of methotrexate Tapering off prednisone since May also-2.5 mg every other day for 1 more week. Was feeling fine until @ two weeks ago with starting the maintenance dose of methotrexate. For two-plus days I have side effects of extreme fatigue and tiredness and some gastrointestinal problems. Also, some insomnia. Is this normal for methotrexate? Could the symptoms be related to the steroid tapering? Thank you for considering this.

I am seeing her Monday. I see my Drs at the University. The only Dr alloef to prescribe meds is my primary Dr. I will find another dr

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@johnbishop

Hi @jjtaylor95 — Welcome to Connect. I don't have GPA or meningitis. I'm hoping a member with similar health experiences will share their experiences with you. I did a search and found a few links that may provide some helpful information until someone else responds to your question.

Merck Manual – Granulomatosis with Polyangiitis
https://www.merckmanuals.com/home/bone,-joint,-and-muscle-disorders/vasculitic-disorders/granulomatosis-with-polyangiitis

NIH – Central nervous system involvement of granulomatosis with polyangiitis: clinical-radiological presentation distinguishes different outcomes.
https://www.ncbi.nlm.nih.gov/pubmed/25187644

FDA – Finding and Learning about Side Effects (adverse reactions)
https://www.fda.gov/drugs/resourcesforyou/consumers/ucm196029.htm

@jjtaylor95 have you asked your doctor about the immunosuppressants that you are on? Just wondering if there may be a better substitute.

John

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@johnbishop I did ask, I am being treat by Mayo Clinic in AZ. They are not comfortable with taking me off of immunosuppressants yet (azathioprine) I take 150 mg daily along with 1 mg of prednisone (soon to be stopped) for GPA. Then for fungal meningitis I take fluconazole 800 mg daily and the side effects of that medication is killing me so I wanted to see if anyone else on here takes that as well. I had a lot of complications with the meningitis which has me on 2-3 other pills as well

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@oregongirl yes you can fire your Dr.My friend in n Houston says the Dr,s at the Methodist hospital are great

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@oregongirl

I am seeing her Monday. I see my Drs at the University. The only Dr alloef to prescribe meds is my primary Dr. I will find another dr

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@oregongirl Can your specialists not prescribe medications that are related to whatever they are treating you for? I know my transplant doctors will not prescribe anything that is in what he considers to be within the realm of the care of my PCP.
I hope things turn out well for you on Monday.
JK

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@oregongirl

Sounds overwhelming. My RA Dr either comes up with a solid diagnosis or I will find another Dr. She stated I have RA but voice trails off as if she is looking for something else. They are following my blood work for Multiple mylona. I am exhausted all the time.if I do get my all my energy up for something special I am totally wiped out after a couple of hrs. I have to look up your diagnosis. I am not looking for another disease. I am sure one of mine will get me soon enough.

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I understand your weariness. Autoimmune diseases like this (and I believe we are talking about the same thing) are malicious. Question: are your kidneys involved? The term granulomatosis implies that they are. If so your exhaustion could be a result of a low red blood cell count. Oddly although red blood is generated in the bone marrow, it is the kidneys that control the production. When my condition was active all I wanted todo was sleep. A transfusion and some injections of Procrit were required until my kidneys recovered enough to do their job. My doctors needed a kidney biopsy along with the previously mentioned ANCA values to determine my specific autoimmune condition. Bottom line: the response to all these conditions seems to be the same, you take some drugs that slow the reproduction of the fastest reproducing cells, those being the immune system cells (leukocytes?). That’s why the drugs they use are, or are closely related to anti-cancer drugs (another fast reproducing cell). Methotrexate I believe is also used to treat cancer and is very possible. I’m not questioning your RA doctors diagnosis or treatment. I just saying what I’ve learned.

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When I had to go to the hospital by ambulance TWICE in one week, the Univ of Texas Hospital was full. They took me to Baptist. I was SO IMPRESSED.
They have a special wing for seniors and I venture to say that all the nurses are available to all the patients on that wing. I was SO well taken care of. One night I could not breath. The nurses were in there immediately. Everyone has a private room. My new Neurologist is approved for Baptist Hosp. That was where I met him. I was impressed immediately and asked for his card. I have good insurance and can go anywhere I choose to go. I think I made a horrible mistake going to the Univ of Texas. It is a teaching facility. So much money spent and no diagnosis and maybe blood cancer which they want to wait a year to do the tests again. I think I will keep my primary doctor at Univ and the Neurologist. But. my RA is done. Monday is the last time she will see me. I am assuming that I was unable to get the meds I needed was due to the TEACHING part of it. Before I allow them to do anything serious, I will go to Minnesota Mayo for 2nd opinion. If I find they are ON IT and will good care of me, I will stay there and get it done. My spine doctor does want to put shots up and down my spine and in my neck. My neck hurts so bad. Is the Arizona Mayo as good as the Minnesota Mayo. Do either of them offer housing for out of state patients and their family?

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@oregongirl

When I had to go to the hospital by ambulance TWICE in one week, the Univ of Texas Hospital was full. They took me to Baptist. I was SO IMPRESSED.
They have a special wing for seniors and I venture to say that all the nurses are available to all the patients on that wing. I was SO well taken care of. One night I could not breath. The nurses were in there immediately. Everyone has a private room. My new Neurologist is approved for Baptist Hosp. That was where I met him. I was impressed immediately and asked for his card. I have good insurance and can go anywhere I choose to go. I think I made a horrible mistake going to the Univ of Texas. It is a teaching facility. So much money spent and no diagnosis and maybe blood cancer which they want to wait a year to do the tests again. I think I will keep my primary doctor at Univ and the Neurologist. But. my RA is done. Monday is the last time she will see me. I am assuming that I was unable to get the meds I needed was due to the TEACHING part of it. Before I allow them to do anything serious, I will go to Minnesota Mayo for 2nd opinion. If I find they are ON IT and will good care of me, I will stay there and get it done. My spine doctor does want to put shots up and down my spine and in my neck. My neck hurts so bad. Is the Arizona Mayo as good as the Minnesota Mayo. Do either of them offer housing for out of state patients and their family?

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Hello @oregongirl, I'm not sure about the Mayo Clinic Arizona Campus but the Rochester does have some charitable lodging. Here's more information on what is available for patient's families.

Charitable Lodging
https://www.experiencerochestermn.com/mayo-clinic/hotels/charitable-lodging/

There's also some information on Mayo Clinic's Charitable Care and Financial Assistance on their website here:
https://www.mayoclinic.org/patient-visitor-guide/billing-insurance/financial-assistance

John

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I have read about this disease since my son was diagnosed with it two years ago at the age of 18 years. What I have read is that a person normally wouldn't be diagnosed with this until they are in their mid 40's. I guess he was diagnosed so early due to the fact that he is very athletic and this effected his lungs. He had what the doctor called cannon size nodules in his lungs. I cannot find another sole in the US that was diagnosed that young and am just really trying to find someone he can talk to about this. He is in College and still in and out of the hospital for treatments. He is struggling and I hate to see it.

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@rphillips85

I have read about this disease since my son was diagnosed with it two years ago at the age of 18 years. What I have read is that a person normally wouldn't be diagnosed with this until they are in their mid 40's. I guess he was diagnosed so early due to the fact that he is very athletic and this effected his lungs. He had what the doctor called cannon size nodules in his lungs. I cannot find another sole in the US that was diagnosed that young and am just really trying to find someone he can talk to about this. He is in College and still in and out of the hospital for treatments. He is struggling and I hate to see it.

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Hello @rphillips85,

Welcome to Connect. I’m sorry to learn about your son's diagnosis. We are glad you’ve joined our community. Granulomatosis with polyangiitis, formerly called Wegener’s granulomatosis, falls in a group of blood vessel disorders called vasculitis. Here is some information from Mayo Clinic:
http://mayocl.in/23sbZcI

I encourage you to read Mayo Clinic patient Trish Byrd’s story, about her journey with this condition; you can view it here:
http://mayocl.in/2oewSsF

I am tagging our moderator Kanaaz @kanaazpereira to see if we should move your post to the following discussion which will give your post more visibility.

Groups > Autoimmune Diseases > GPA granulomatosis with polyangiitis
https://connect.mayoclinic.org/discussion/gpa-granulomatosis-with-polyangitis/

@rphillips85 thank you for being an advocate for your son. The more you and your son can learn about his health condition, the better you can work with your doctors on a treatment plan. Have his doctors come up with any treatment plans that have helped?

John

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Hello @rphillips85,

I am truly sorry to learn about your son's struggles; as a parent, I can only imagine how difficult this must be for you.
As @johnbishop suggested, I moved your discussion and combined it with this existing discussion so that you can meet @suska @cpierce101604q @mikedurham34 @jjtaylor95 @tomr; I'm certain they will join us and share their insights and experiences with granulomatosis with polyangiitis (Wegener's granulomatosis).
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.

Even though this condition is rare, and most often affects people between 40 and 60 years of age, it can occur at any age. Here is a published study that you might wish to view:
– Long-term remission in pediatric Wegener granulomatosis following allo-SCT after reduced-intensity conditioning https://www.nature.com/articles/bmt2010126

@rphillips85, may I also ask if it has affected only the lungs for your son? What treatment options has he been given?

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@kanaazpereira

Hello @rphillips85,

I am truly sorry to learn about your son's struggles; as a parent, I can only imagine how difficult this must be for you.
As @johnbishop suggested, I moved your discussion and combined it with this existing discussion so that you can meet @suska @cpierce101604q @mikedurham34 @jjtaylor95 @tomr; I'm certain they will join us and share their insights and experiences with granulomatosis with polyangiitis (Wegener's granulomatosis).
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.

Even though this condition is rare, and most often affects people between 40 and 60 years of age, it can occur at any age. Here is a published study that you might wish to view:
– Long-term remission in pediatric Wegener granulomatosis following allo-SCT after reduced-intensity conditioning https://www.nature.com/articles/bmt2010126

@rphillips85, may I also ask if it has affected only the lungs for your son? What treatment options has he been given?

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So far only the lungs. Each time we go to the hospital they do a thorough exam on his muscles to make sure they have not been affected by this. He stays pretty active. He takes Methotrexate once a week, we did the injections for a year but for some reason those made him really sick. He started on the 10 tablets a week this year and has been doing well on those until a couple of weeks ago and was sick again the day after.

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@rphillips85

I have read about this disease since my son was diagnosed with it two years ago at the age of 18 years. What I have read is that a person normally wouldn't be diagnosed with this until they are in their mid 40's. I guess he was diagnosed so early due to the fact that he is very athletic and this effected his lungs. He had what the doctor called cannon size nodules in his lungs. I cannot find another sole in the US that was diagnosed that young and am just really trying to find someone he can talk to about this. He is in College and still in and out of the hospital for treatments. He is struggling and I hate to see it.

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Hello!

I was diagnosed with GPA a year ago and I found this online support group: https://www.wegeners-granulomatosis.com/forum/. There are members the same age as your son. There are also local support groups affiliated with the Vasculitis Foundation either currently in your area or you could start one. I have found both of these to be tremendously helpful as I navigate my “new normal.”

Anna

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