Diagnosed 3 months ago with GPA

[Wonderbird]

Hi,

I had always been relatively healthy, until August of 2013, when I had a bout with pericarditis. I was in the hospital for a week, and a last minute procedure to drain the fluid around my heart literally saved my life. While in the hospital I had a rheumatology consult, since pericarditis tends to be associated with certain autoimmune disorders (particularly lupus). After I got home from the hospital I started getting pains in my joints, mostly hands and feet, but these went away, and I was fine for about a year. In June of this year, I was diagnosed with endometrial cancer. In July I had a complete hysterectomy/oophorectomy. Fortunately the cancer was caught very early and I didn't require any further treatment. The surgery was done robotically, so I was on my feet the day after the surgery, but still had a lot of internal healing to do. In August, I had a terrible disagreement with my psychiatrist (who was treating me for ADHD, anxiety and depression) that stressed me out very, very badly. I'm convinced that the stress from this disagreement triggered the GPA, especially considering that I was already recovering from a major trauma to my body, not to mention the surgical menopause I was going through. I was diagnosed in September of this year with GPA. I was so overwhelmed that I stayed away from all the information about the disease online. At first, my rheumatologist put me on 60 mg/day of prednisone, which made me very anxious. I had several panic attacks from it. I had to start with a new psychiatrist, who is pretty good. After 4 Rituxan infusions in October, I was able to decrease the prednisone dose and have been tapering down slowly since then. I've been on 10 mg prednisone for 3 weeks, and was scheduled to go down to 7.5 mg yesterday, but I stayed on 10 because I couldn't reach my doctor before the weekend. I didn't have any GPA symptoms at all when I was on 12.5 mg, but this past week, I started to have joint pain in my right hand (carpal tunnel also) and pins and needles in my left foot and ankle. This is what prompted me to start looking for information online. I am totally freaking out now. I have a small family and only a few friends I would ever share this with, and there is literally no one for me to talk to about this. So here I am.

I'm sorry this is so long-winded but I've been holding all of this in since yesterday. I don't even know which of my moods are really mine, and which are a result of the menopause, prednisone, GPA, etc.

[Debbie C]

Hi wonderbird...well now you have a BIG family you can talk to , vent to, and ask away. There are so many knowlegable and caring people on here and its open 24-7 since the are people from around the world here ...so when you are up at 2:00 a.m. from the pred, there will probably be someone here.I don't know where you live but the most important thing you need is to make sure your dr is familar with wg/gpa.Where has the wg affected you ? Are you only on pred. right know ?

[Wonderbird]

Hi Debra,

Thank you so much, just reading your response makes me feel better. My rheumatologist is a specialist in vasculitis, and I have a lot of confidence in her. I'm on 10 mg pred right now. My symptoms are carpal tunnel syndrome in my right hand and pins and needles in my left foot and ankle. These symptoms are minor compared to what I experienced back in August. This disease seems to like to attack my left foot - my left ankle and knee swelled up and it was very painful.

I really like your quote!

[mishb]

Debra is right Wonderbird - you have now found the biggest WG/GPA family that you ever needed.

I would say though that if your knee and ankle are still swelling then the reduction in pred has been a little bit too early. I would think that a higher dose should be required until the inflammation is under control.

Anyway, just wanted to say, sorry you had to find us, but so glad you did.
If you have any questions, ask away. Nothing is too small or too crazy.

[annekat]

Welcome, Wonderbird! I would echo everything that Debra and Michelle said. You have been through a lot alone, and being here, you are alone no more. Ask as many questions as you want, rant and vent away, share stories, browse the archives with the search function, and don't believe the scary statistics you may read online. Most of us are dealing with this well and coming through it just fine. Many of us have gone into remission. The more time you spend here, the more you will learn and the easier it will be on a day to day basis. Having a good vasculitus specialist is a great foundation to your treatment. As for the pred, it is common to feel a resurgence of symptoms when tapering, especially at that level, and I would not rush into dropping it to 7.5 yet. Your doc will help you sort that out; she might even have you go back to 12.5 for a bit. I myself have not been able to get below 10mg. successfully in the 3 years and 9 months I've had GPA. Stress is definitely a factor for many people both in the triggering of the disease and in having trouble getting off the meds.

[vdub]

Welcome! We're not doctors, but most of us have personal experience with what you are going through and can identify with all the ups and downs. The first few months or year after dx can be very overwhelming. Sounds like you have already discovered the good, bad, and ugly of pred. Hang in there -- it gets better.

[brew22]

I AM IN REMISSION BUT HAVE THE CARPEL TUNNEL PAIN AND THE TINGLING AND PRICKLING IN BOTH MY FEET.. ONE OF MY DOCS SAID IT WAS FROM ALL THE TRAMMA MY BODY HAS GONE THROUGH AND PROBABLY WOULD NOT GO AWAY!!UNLESS I TAKE MORE DRUGS WHICH I DONT WANT TO DO. Neuropathy can be caused by inactivity, or holding still too long in one position. Carpal tunnel syndrome is a common type of peripheral neuropathy.I WAS IN A DRUG INDUCED COMA FOR 12 DAYS BUT IT COULD BE FROM THE DRUGS TOO. Autoimmune diseases like rheumatoid arthritis and lupus affect the peripheral nervous systems AS well.. This disease is full of mysteries to me.. They still need to do lots of research. Especially on how much of each drug should be taken....KEEP IN TOUCH!! YOURS SUSIE

[annekat]

I am pretty much symptom free and disease activity is low, but I still get the tingling feet, along with cramping, especially when trying to fall asleep. Some of the damage done by vasculitis and other AI diseases can make symptoms persist even when one is in remission or close to it. I hope some of this damage will repair itself with time, but I know that not all of it will.

[MaxD]

Wonderbird: The joint pains are most likely from prednisone withdrawal. When I came down from 10 to 7.5 (early September), I started having similar symptoms. The docs all said it was prednisone withdrawal and will eventually go away. As of last week I'm off prednisone (yay!), but my knees are painful going up and down stairs and every time I sit down or stand up it's painful. I also have tendonitis in my left ankle and foot, and arthritis in my left hand. None of this prevents me from doing things I need to, but it has definitely slowed me down. I've started physical therapy and that has been helping a little.

Hang in there!

[Wonderbird]

Thank you so much to all of you who've shared your wisdom with me. It's very comforting and I really appreciate it.

[Wonderbird]

Thank you so much to all of you who've shared your wisdom with me. It's very comforting and I really appreciate it.


Hey everyone - I went to see my rheumatologist about my symptoms. She thought it was unlikely that it was a flare-up of the GPA, and that the pain was most likely neuropathy resulting from prolonged elevated blood sugar by the prednisone. She took blood for a lot of tests (urine too). Provided that the inflammatory markers are negative, she's going to resume bringing down my prednisone dose. She wants to put me on Lyrica for the neuropathy and carpal tunnel syndrome and referred me to a neurologist. I felt so much better after seeing her - I had never experienced neuropathic pain due to my diabetes, which is why I was so alarmed. I have mild diabetes, but the prednisone obviously aggravated the condition. Hopefully once I get on to lower doses of prednisone (and maybe altogether?) I'll no longer have the neuropathy. I've lost about 30 lbs. since I had my hysterectomy in July, and this will help improve the blood sugar situation.

Have a very happy, HEALTHY and prosperous new year! Thanks for being here for me and everyone. I hope to be a productive member of this group and give back as much support as I've gotten already, not to mention the support I look forward to receiving in the future. I'm so glad, and relieved, that I'm now a member of this great big family who understands GPA and who are very supportive.