Recently diagnosed

[Hege]

Hello
So happy I stumbled on this forum, it’s been great hearing about peoples experience with GPA and you guys really do know a lot and some of my questions have already been answered.
Anywho, I’m a 27 year old girl from Norway and got diagnosed with GPA in May 2016, so yeah, fairly new to all this.

My story goes like this;

I’ve had sinus infections every other month for the past two years. My doctor finally succumbed and referred me to an ENT in December 2015. He found lots of polyps in my nose and set me up for surgery in March 2016.
At the beginning of 2016 I started having severe joint pains, but it would move around; one day it was my knees, the other my shoulder. I felt like a 100-year old woman – couldn’t sleep and do normal everyday stuff; I was in so much pain! I went to see a rheumatologist in April. He did some bloodwork and some tests, but couldn’t find any reasons for my pain.

Fast forward a month: Traveled to another city for a concert. During the concert my right foot swelled up badly. I couldn’t walk, so my friends carried me back to hotel. During the night it swelled up more and got discolored. Went to the emergency room the following morning and got admitted because they thought I had necrosis. Did some blood work, x-rays and ultrasounds and quickly ruled out necrosis.
My CRP and SR (? don’t know the exact term in English) were elevated and my creatinine levels where quite high. They decided to do the c-ANCA test and sent me for a chest x-ray. They saw some stuff on the x-ray and sent me do a CT-scan. It turned out to be granulomas. The c-Anca test came back positive. A biopsy of the kidney was taken and it had granulomas in it too. So there goes – officially diagnosed with GPA.

I was put on 50mg prednisolone, Bactrim, Somac, calcium and vit D supplements. As treatment goes I’ve had Solu-Modrul infusions over 3 days, 3 doses of cyclophosphamide over 6 weeks and also 2 doses with Rituximab. Luckily I’ve had no side effects of these infusions. Prednisolone on the other hand; A miracle drug, with some mad side effects: high blood pressure, heartrate through the roof, starting to see signs of Cushing’s, shaking of hands and I feel nervous all the time.

To be honest I feel kind of lonely in all this. I’ve got my family and my boyfriend supporting me, but I still have the feeling of loneliness. I’m not scared, but sad all this happened. It wasn’t my plan. Trying to stay positive, but at times is hard. I also feel like I have so many questions, but I don’t know what to ask. I just want to go back living my life – going to work, working out, hang out with my friends and do normal stuff.

[renidrag]

We all can understand your feelings. After the initial shock of diagnosis, especially with a disease we can't pronounce, and the drugs they put in you it seems everything is moving so fast. In a month or two things will probably start to level off some. So ask away here, we come from all over the world, I think we have Norway represented here now also. You won't find a more caring group of people, sometimes we even attack with humor. Take care others will soon follow.
Dale

[andrew]

Hi Hege
Glad you found us. We're happy to meet you! It's a whirlwind of symptoms, doctors and drugs at the start. Seems like you're keeping a good handle on it though - despite how you're feeling :) Yes Pred is indeed a miracle drug but it's both a blessing and a curse as you're finding out. 50mg is reasonably high but you'll need that early on and hopefully you can start tapering as your symptoms subside. When will that be? No idea I'm afraid, everyone's different.

As for the medications you're on - pretty standard sledgehammer approach to knock the disease back into submission. I assume you have a Wegener's specialist looking after you?

Loneliness and isolation can definitely be an issue. I hope that can be in some way relieved by the interactions you'll have on this site. It's an isolating disease in many respects, particularly because many of us don't look sick. If we were in wheelchairs or used walking sticks - maybe had an arm in plaster or wheeling around a drip, people might be more accomodating or perhaps just listen when we're feeling like crap. As you'll probably hear on this site many times it's a matter of finding a 'new normal'. After the initial bumpy ride of diagnosis, getting the meds right, side effects and numerous doctor's visits you gradually start to develop a routine. For some, it's the same routine they had before diagnosis and for others there are some adjustments to be made - sometimes small, sometimes large. Best advice I can give is find a way to stay positive. The mental battle with this disease can be a challenge - hopefully made easier by sharing your ups and downs here with people in the same boat. You'll find many friendly and supportive people here whether you want to ask a question or just have a rant. Both questions and rants are acceptable here :)

Again, welcome. You're now have approximately 2,619 more friends :)

[NikkiNicole]

Welcome!! :thumbup:

I understand the sadness and loneliness that comes with this butthole of a disease. I am not as bad off as some. My kidneys haven't joined the party yet, and I've really only had some sinus involvement and major joint pain, not to mention I feel like roasted hell all the time. So, it's hard to even get the doctors to pay attention to me. But, the tests all pointed to Wegener's so ... I wish they would actually pay attention to my chart.
The best one is when I can't see my doctor and I get one that says "I vaguely heard of this but really have no idea what it is, and you look just fine." AHHHHH!!!!
I still struggle to find a new normal because I am still trying to get the monster to rest awhile. I'm about to head in for my second Rituxan infusion tomorrow. I'm crossing my fingers that after the initial feeling like garbage, I'll start to see some turn around someday.
Best of luck to you!! You've come to the right place.
Endless support and knowledge at your fingertips now. I have been known to come here and toss my questions out there before talking tomy doctor. Better info here, I've found.
I hope you find some peace soon.

[MaxD]

Hege, Sorry to welcome you to this club - but you will find support and hopefully draw emotional strength from this forum. Your symptoms prior to diagnosis were all too familiar (minus the kidney involvement). Prednisone does have many side effects - sleeplessness, tiredness and anxiety among them. Now is the time to be kind to yourself and to learn what your body tries to tell you. The best advice I got was to stay as active as possible (within reason) while on prednisone (walking is best). As you start to taper down on the prednisone, some joint pains may reappear - this will not be the disease coming back, but withdrawal symptoms. Feel free to ask any questions, or simply to express frustrations, or whatever else on this forum. You will be heard and people will reply - we're all in this together. All the best.

[Hege]

Thanks for replying, it does feel great knowing there's a place to ask questions. My rheumatogogist is working together with one of Norway's top GPA specialists, so I know I'm in good hands there. I try try to get at least a 30 min walk in everyday, sometimes more. My legs are quite week at the moment and I would like to start lifting weights again to build up some more muscles. Don't know if that's wise though, with my high blood pressure. Any thoughts?

[Pete]

Hi Hege,

As far as exercise is concerned, increase the effort very gradually. I started out after diagnosis, and it took a lot of effort to just walk to the closest street corner (about 100 meters). Over a few months, I built up to walking 4-5 km without stopping and at a good pace. On vacation today, I walked almost 10 km with no problems.

[drz]

Welcome to our elite group that no one wanted to join but are very glad to find after they join our select club. Sorry the admission price is so high.

You can send a private message to anyone with any question when you find a topic of interest to you and most people will respond. Some are no longer active here because they are again busy busy with with their normal life again and you should be too in a few months. You can find out who is active by checking their profile on here.

[MaxD]

Thanks for replying, it does feel great knowing there's a place to ask questions. My rheumatogogist is working together with one of Norway's top GPA specialists, so I know I'm in good hands there. I try try to get at least a 30 min walk in everyday, sometimes more. My legs are quite week at the moment and I would like to start lifting weights again to build up some more muscles. Don't know if that's wise though, with my high blood pressure. Any thoughts?

You should definitely check with your doctors before starting anything strenuous, especially while you're on prednisone taper, and with your kidney involvement. I recall my rheumatologist not wanting me to exercise too intensely - no interval training etc. I'm sure some weight training will be good and at your young age you will bounce back much faster than many of the rest of us!

[Middlesista]

Hege - like many others here I walked the initial GPA walk and was overwhelmed and I would be lying if I did not admit I was depressed and frightened. The drugs I was and am still taking scared the beejeebees out of me. I found this site and the folks here are so supportive and have so much helpful info and experiences to share that it helped me realize that with time and treatment as well as good docs - life would go on. I am back to work with some modifications including rest and not overdoing. I try to be vigilant in paying attention to symptoms and have gotten second opinions from GPA specialists to make sure my treatment plan is optimal for me because as you know we are all different n how we present and how we respond to the meds. It sounds like you are receiving good care and that is so important in keeping the disease in check. I learned I can't control the reality that I have GPA but I can control how I cope and deal with it.

[annekat]

Welcome to the group, Hege... everyone has said all the right stuff, and your case and treatment do sound pretty typical so far. It's a weird and overwhelming diagnosis to get, and it's a blessing to have this forum here to walk you through it. I honestly don't know how I'd have coped without it. Knowing a whole crowd of people with the same thing makes all the difference in the world. And it is often easier to find information from here than from most doctors. Check out the search function for older posts about all aspects of this thing we have. Let us know how your treatments go, and keep in touch!

[jlove]

Hi Hege! I'm a little late to this party but I wanted to hop on the welcome train too. Receiving the GPA diagnosis can be jarring at first but, like others have said, you will find plenty of support here. I was diagnosed almost 4 years ago and now, with a good treatment plan established and regular check-ups with my rheumatologist, I feel like my GPA is less of a dominating force in my life. My symptoms are much more under control now thanks to Rituximab and I also think I've gotten used to the idea of having this extra thing to worry about.

Much like you described, I felt very isolated when I was first diagnosed. Coming to this site is very helpful for those times when you feel particularly alone or overwhelmed. Otherwise, I do feel like the isolation gets better overall. I still have moments where I feel isolated or wish I could talk with a fellow GPA patient in person but luckily this site is a great way of keeping in touch with people going through similar things. I am close in age to you (26) so if you ever feel like lamenting the pains of being a GPA patient in your twenties, feel free to message me! Good luck with everything :smile1:

[Hege]

Thank you all for great advise! I've been reading through a lot of the old posts and feel like I'm getting my head around all this craziness that comes with this diagnosis.
My treatment is going great. Started tapering down on preds a couple of weeks ago so down to 30mg now and then another 5mg on Saturday. So far so good and crossing my fingers it'l stay that way. Since my first post I've started both Amlodipin for my high blood pressure and Selo-Zok (beta blockers). Having another Rituximab infution in November, so for now it's just avoid getting sick and having check-ups with my doctors. I feel eerily good, which for some weird reason worry me a bit. It's almost to good to be true

[annekat]

That's great! If you feel like you are doing well, you probably are.

[drz]

You most likely are doing better but remember that pred at higher dosages can create euphoria that might lead you you to feel better than you are so just be careful and enjoy the nice feeling. At higher dosage is easier to taper pred faster. It seems to get harder when you get down to the lower dosages of single digit.

[Jeanette]

Hi, I'm not the one with Wegener's my son is.
He too went through what you're now going through.
He was just 13 and lost his hearing in both ears. He was finally diagnosed 8 months later.
He's was rushed into hospital there and then, but on a steroid drip for 4 days, then he was having chemotherapy once a week, then it went to once every 3 weeks for about 10 months.
He was on 150mg of Azathioprine a day and steroids 3 times a day.
They cut out the Steroids after after his chemo so that just left him on the Azathioprine. Over the years they also cut his Azathioprine down to 50mg a day. Now 8 months on Jonathan (My son) is off Azathioprine and is in remission. He still sees a specialist ever 3 months, and he's doing really well.
Please don't feel alone, Jonathan was very depressed when he was first diagnosed, he could not go to school and had to have a tutor. But he's got great friends and family that got his out of it.
I went through a very bad place myself, I felt so guilty thinking I could have done more. But I just keep reminding myself, yes he's got GPA but he's well and happy. He's even going abroad to Spain in September.
If at anytime you need a chat I can ask Jonathan to come on here to speak to you.
Love Jeanette x