I have not posted in quite some time. Read other's mostly, and since I have been in remission for 7-8 years I have not had much I could add to conversation.
I was diagnosed with GPA in 2015. Put on pred and mycophenolate initially, then two rounds of rituximab. I have been med free since 2016 other than Septrin. My first flare included episcleritis. Something I had never suffered before or since. That is, until a couple of months ago. I have been back and forth to the ophthalmologist who has been trying to sort me out with Maxidex drops. This is not working. We have tried tapering to nothing, It came back. Then one drop every other day. The episcleritis comes back and became uveitis at one point. I have been back and forth to the GP, who has been very good. She has sent referrals off left, right and centre. I have blood in my urine without any sign of infection (cultures done twice) so I had an ultrasound. It found no problem with kidneys but did find I have a fatty liver. I am awaiting an appt for a cystoscopy to rule that side of things out. Also awaiting a nephrology appt. Meanwhile diagnosed as type 2 diabetic and about to start a total meal replacement scheme in February. I have had a swollen tonsil and clicking in the throat that lasted almost a month before receding. The clicking has returned. I also have painful joints and (wrists, knees, ankles) and difficulty getting around/upstairs/personal hygiene/household chores. I have some days better than others, but I am pretty sure that I am having a flare.
I was supposed to see rheumatologist 2nd Nov. It was then moved to 7 Dec, which has now been moved to 17 Jan. I spoke to the rheumy nurse about 6 weeks ago, in between the first two appts. The joint pain had not started then, but I discussed the episcleritis. She was unconcerned at that point. I didn't worry too much as I was going to see rheumatologist shortly. Plus I have been seeing GP and getting scanned, so thought things were progressing. I don't want to take up NHS resources unnecessarily, as I was made to feel like a hypochondriac before my diagnosis in 2015. My current GP actually said that it may be worth paying to see rheumatologist privately if I could. Not sure if that was a veiled attempt to say that I may have a long wait?
Unsure what to do next. What would you do in such circumstances?
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lollypocket
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Hi I paid private because I was made to feel the same as you all the symptoms you are having is how I was feeling before I was diagnosed in 2016 with vasculitis GPA cost me £200 which was the best money I had spent tell them you think you need kidney biopsy that's where they found my GPA have they done a ANCA test as well good luck hope they sort you soon
Hi, Thanks for the reply. I originally saw my rheumatologist privately as I was having such a runaround in 2015. Hubby had private cover which also covered me. The rheumatologist I saw back then was also the NHS one I have been seeing since. Sadly hubby no longer has the cover for me as he changed jobs. The renal dept asked me to have bloods done, which I believe covered ANCA, but my appt with them isn't until 23rd Jan. I am umming and ahhing about paying £290 for a private consult when I am due an appt 17th Jan. If I knew I was not going to get pushed forward again I wouldn't worry. On top of cost of Christmas, I have had my car breakdown in last week, so not exactly flush 🤔
Hi Lollypocket I truly sympathise how difficult it must be. My advice for what it’s worth is start banging the table hard with that Rheumatology Nurse and start using NHS resources because that’s what they are there for. This is serious and in the long run if not dealt with will cost you in mind and body and the NHS financially so think of it as doing them a favour. Sorry to be so blunt but I have learnt over the past 5 years sometimes it’s the only way to get action.Nick
My case is similar to yours. Diagnosed in 2017 with C-Anca GPA. Remission achieved in 2019. Since then I have had a few times where I felt maybe I was having a flare and actually felt that way starting about a week ago. I will be sitting on the couch in the evening watching TV and this feeling comes over me. It's that unique feeling that only GPA provides. My wife has asked me what it feels like and I tell her it's impossible to describe. My Nephrologist manages my GPA and about a year ago, I called his office and told him I thought I was having a flare and he sent a 90 day prescription for Azathioprine and Prednisone to the pharmacy and said to start taking them. I took them for about a month then stopped because I felt better. I see him every 3 months and do a full set of labs each time. Every 6 months, he adds the Anca blood test to the lab request. So far, it has always been negative but you know I have this fear of it coming back because it was very traumatic for me. I had end stage kidney failure and was on dialysis for a year. And yes, Joint pain is a definite indicator that something is happening. Hope you get help soon.
That was a traumatic experience indeed. I was very lucky that mine was caught early, but only because I went private I believe. Last few years I have been having phone consults every 6 months with my rheumatologist. This next one was supposed to be face to face as I had been complaining of 'stuffiness' on the last two consults. I have been having dmards blood tests every 3 months at GP (was originally monthly for first few years). I don't think anyone has checke my ANCA in quite some time.
Hi, I also paid private in 2022 to see an ENT consultant who diagnosed me with GPA as I was getting nowhere with my GPA and I am so glad I did that.
Before you pay to go private you say that the Renal department asked you to get bloods done but your appointment with them is not until 23rd January. Have you had those blood tests done yet? If so, I suggest you contact the Renal department to see if the results are through, explaining your symptoms and concerns - if the results are abnormal they would then hopefully agree to see you urgently and avoid the expense of going private.
I have indeed had the blood tests done. I had not thought of contacting them. So used to being told that I have to wait to see consultant or GP for results.
Maddening, isn't it, when you have to push despite having a history and knowing your body. Good advice from others. ANCA isn't always conclusive but if you have GPA and have been in remission then elevated ANCA is probably a sign of trouble brewing. If your urine is free of protein a kidney biopsy may not be necessary but make sure you get it into the conversation. In addition to other bloods make sure you get a CRP. If you are suffering from inflammation it will probably be elevated -- another sign of trouble brewing.
On the road to my GPA diagnosis -- which took a private GP appointment and private appointments with a neurologist and a rheumatologist -- I had uveitis, which was fixed with steroid (pred) eye drops
ACR was 50.6 on December 1st. I was asked to bring in another sample to rule out a UTI, but told there was no rush. This has been ongoing since October. Steroids sort my eyes out as long as I am on them. when I stop it comes back. Within 3 days of no drops at all and within 7 when I have one drop every other day. Will do as suggested above and try phoning renal dept.
Hang in there. Like others have said, CRP is a great indicator I use to know if I'm just feeling bad, or if CRP is elevated, I could be going into a flare. This crazy disease comes with multiple symptoms that can't be ignored. I too sometimes feel like I'm viewed as over sensitive, but before GPA I was blessed to always feel great. Now it's a matter of do I feel less bad from day to day.
it shouldn’t be like this for those of us that already have serious diagnoses but sadly is at at times. I’m doing the same at the moment for myself, I speak to my consultant’s secretary or the nurses if I feel I really need help and then if that doesn’t work my Gp to try and get things moving, then if nothing happens I go back to the nurses or the secretary and start again. I feel a nuisance but when we’re really not well we need help.
I would see if you can talk to the specialist nurse again? Ask if you can have your appointment brought forward or at the very least be put on a waiting list for a cancellation.
Sadly there is a National shortage of rheumatologists and not all rheumatologists have an interest in vasculitis. So it’s essential you find a rheumatologist who has a special interest in vasculitis, private or NHS.
Thanks for all the replies. I finally got a cancellation appointment today. Bloods, urine and a scan of some of my joints. Been put on pred 15mg daily until my results come back. He believes GPA is active and has mentioned a chemo drug I have not had, and rituximab which I have. I believe he said they only use rituximab if ANCA is showing. Not ideal to be on pred as was about to start a diabetic meal replacement programme. Think I will be postponing that as 800 cals a day might be a tough order right now!!
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