How are you doing ?

[Alysia]

I thought we can have this thread to update, how are you doing, my friends ?

[gunnyl]

Still alive here [emoji2]. Hope you all are well!


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[Arleta]

Doing ok. Had Covid once for sure (delta) and probably omicron, too. Very thankful for the vaccine…I’ve had all 4 doses. Still in remission, sort of. Just need to be careful not to overexert…hard to do with grandchildren you want to play with [emoji12].

[Vero84]

Not too well. Going through emotions quietly.

Doctor took me out of prednisone for the first time to see if I was stable but the pain doesn’t let me live normal. Thinking of even quitting my job. That though breaks my heart.
I know getting back into prednisone will make me feel nauseous, dizzy, migraines, and never ending tiredness. It’s that or my pains which I’m literally limping at night.

A soldier is mentally down this week. 😞

[mishb]

I am well thank you

Off pred now, and down to 10mg MTX and 200mg Plaquenil
Nose & coughing is still the bugbear, but we continue to go on.

As always

[freakyschizogirl]

Hey Mishb

I'm back. Been away from the forum and other support groups for a while as i went through a really rough patch 3 years ago when i flared hard.
Currently on the ABROGATE trial and having weekly injections of Abatacept. Feeling good, although fatigue is my constant companion :unsure::unsure:
Trying to stay sane with all the craziness going on in this world, getting out and about in nature is really helping.
I hope you're well

[drz]

i have been on Avacopan (Tavneos) over three months and might be having trouble with side effects. I spent the afternoon in our ER thinking I had a infection of my BAHA site and bladder infection. Pneumonia and Bladder infection are common infections while using Tavneos. I have trouble emptying my bladder and it often feels half full even after voiding and I often have several urges to void in a short period of time. Even thouogh my bladder felt full I had trouble getting enough urine for their urine sample but the lab said I had no signs of infection so it might be a side effect of Tavneos since that is one listed and they say to avoid use with prostrate problems that limit urination.i had some problems until my GPA flared and I had to take high dosage of Pred (60 mg daily) and then the urination seemed fine but now that i tapered back down to 6 mg it might also be back. I had a UroLift scheduled that I had to cancel when
the GPA flared up.

The BAHA site is a question. It might be infected since that has happened before and the area is red and sore but I have a tendency to develop allergies to any antibiotic i use several times so there is a great reluctance to be cautious about using them unless it is clearly indicated. It was too late to get the prescription filed today so I will get reassessed tomorrow and then get the antibiotic if it seems warranted by the second evaluator. The next day it began draining so it is definitely infected and I started an antibiotic that I need to get extended today.

My labs were mostly the same but I noticed a couple were slightly lower and they might be contributing to the extreme fatigue and weakness I have been feeling lately. I spend 16-18 hours in bed most days and it is a struggle to get anything done in the few hours I am up between naps.

But i felt lucky and relieved that i got to go home and did not have to do a few days in patient care. But the uncertainty of what is causing the symptoms is stressful for me. i will hold the Tavneos until my GPA doctor reviews my issues.

Otherwise I am bored and tired of isolating to try avoid the Covid virus. I can't get any more shots since the first two caused a serious flare of my GPA that did a lot of damage and right now it is unlikely a vaccination would do any good given my repressed immune system from the medicines.

[smileyurbs]

Hello,

After being on 4mg of prednisone my doctor has finally dropped me down to 3mg. So far I am doing okay with that dosage. Still taking 175mg of Imuran and going every 6 months for 500mg of Rituxan. There are days I am in lot's of foot pain from my neuropathy, as well as nerve joint pain. However, in the last 6 months I have had two colds that have impacted my lungs and caused wheezing and coughing, the first one put me in the hospital because I had gotten phenomena as well. They up my prednisone to get through the lung issues and put me on Albuterol. It troubles me why after having GPA for 4 1/2 years why all of a sudden I am getting these colds and getting sick. I did fine as far as staying healthy from colds, until recently.

I still try and keep with positive thoughts and grateful that I am doing better then I was 4 1/2 years ago.

[MikeG-2012]

Thanks for this thread Alysia! Hello everyone!!

I have been very absent for a couple years. Just needed time for life to happen and gave up a lot of things for that to happen.

I had Covid back in December 2021, and about a month later, bilateral PE (both sides - lung) blood clots. Blood clots kicked my ___!! I am still on anti-coagulants, but should be able to get off those in a month (6 months worth). I have never experienced anything like the lung blood clots--and I've been through a LOT! I was off work for 2.5 months because I just did not have the lung function r energy to work. When I came back to work in March it was with a rollator walker because I had no lower body strength and fatigued very regularly. I still use the walker when I need to go long distances. I still struggle today with coughing and other amazingly annoying lingering Covid symptoms, but things are making SLOW and steady positive improvements. Maybe at my one year anniversary of all this, I might be back to a semi-normal.

Covid and the blood clots really screwed up my RTX schedule! I had to wait three months after Covid to have RTX, so that pushed me out to almost 10 months on my 6 month schedule. I have to say, I was more than a little concerned. But overall, it worked out and things are back on schedule--for now.

Wegs is pretty well managed, and Rituxan is still keeping me in chemical remission. My "greatest doc ever" rheumatologist retired at the end of April, and i have an appointment with another rheumy at the same clinic about a month before I am due for RTX again. I hope I get along with this guy, or I may need to make a trip to Cleveland or Mayo Clinics and have a doc there manage my RTX with my local healthcare providers.

My wife and I just got back from a 5 day visit with my parents in Cody, WY. That was a short trip! I wish I was old enough to retire so I could spend more time out there with them. <sigh> I will say, traveling with a rollator walker does have its advantages! We were always the first to board the plane--even before the "important" first class people. (-8 That was really nice!

I am looking forward to hearing from my group of "old friends". Sorry I've been away and inactive for so long. This time, I'll try to get on here more often.

Mike G

[gunnyl]

Mike, sorry to hear about all you've had to endure but glad you are still here with us!!


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[MikeG-2012]

Thanks! Glad to be back. Things certainly have never went the way I expected after my 2012 diagnosis. I am sure everyone here can say something similar!

My healthcare has been a rollercoaster ride--forward/backwards--up/down--IN THE DARK!!!

[little sister]

You are a saint for asking! I’m feeling pretty low. I haven’t been on this site for many years (6) because I was in remission. This past April after 7 years remission I had a sudden dramatic relapse and was in hospital with stage 4 kidney failure. Never had renal involvement before. Last time I got into remission fairly quickly, within 8 months. I guess I didn’t appreciate how lucky I was. Since COVID it seems like a lot of the doctors at the vasculitis center have left so I don’t have a relationship with anyone there now. I know everyplace is understaffed now. But I’m being treated by a fellow in nephrology (not associated with the vasculitis center) who isn’t a specialist in vasculitis. She consults with a nephrologist who is but I feel swept under the rug. The nephrologist I see is so sweet and calls or messages occasionally even though they have her working nights. I just feel that with my severe relapse that the expert nephrologist could at least have met me or spoken to me once. Instead of shoving me off to a fellow who is doing the best that she can. I’m worried about my care and am feeling very depressed and hopeless about it. I had an in person appointment May 31 (2022) and televisit in June but that is all. In September I finally messaged through the patient portal to the doctor that is seeing me about some of my concerns about treatment being stalled. She messaged me back and I got my first rituximab infusion Sept 29. I also evidently have no antibodies to anything except COVID (interestingly enough). I am supposed to start subcutaneous antibody therapy. This level of care is so different from my first diagnosis. But everything was so different. Everything that could go right did go right. This time everything that could go wrong has.
Anyway, thanks for the opportunity to vent.
Even if this just goes into the void it helps.

[tmesis]

little sister, I'm sorry to hear things are going badly for you. I'm feeling low too, so we can be grumpy together. My story's similar but kind of opposite to yours. I had kidney failure in 2005 but they recovered somewhat and I've been in remission with stage 3 CKD since then. Came off meds about 5 years ago.

Anyhoo, now I've relapsed. Have had severe joint pain for 3 weeks and bloods taken yesterday were all over the place. Kidneys have taken a further hit and I'm just praying they hold up above stage 5. Got 60mg pred to take and Cyclophosphemide infusions incoming.

I know I should have expected this to happen, but after 17 years of remission you kind of forget about ever being ill. So it sucks, and I'm sad.

[chrisTIn@]

Little sister and tmesis, I'm sorry to hear that you both feel so crappy. I sure hope you will find the care you need, and recover soon!

[little sister]

See, I knew I should realize how lucky I am and count my blessings! How do you manage your diet? This has been very hard for me, the information seems to change and you have to be careful when you google that you're getting the newest info.
Has your doc brought up avacopan (Tavneos)? It was just approved 10/2021 for GPA and it can help you get off the prednisone more quickly. I saw someone here talking about side effects but I haven't had any. Certainly nothing compared to Cytoxan.
I know what you mean about forgetting this illness after remission. 17 years is a long time. 7 years is longer than average. I didn't know until my relapse but evidently the average remission is 5 years.

[tmesis]

How do you manage your diet? This has been very hard for me, the information seems to change and you have to be careful when you google that you're getting the newest info.

I haven't changed much, just reduced my salt intake, cut out alcohol and added a lot more green veg. At the moment my bloods are all in the normal range, kidney function & inflammation notwithstanding. Do you have a nutritionist? Quite a few of my fellow Cyclophosphamide day patient buddies have specialist dietary advice.


Has your doc brought up avacopan (Tavneos)? It was just approved 10/2021 for GPA and it can help you get off the prednisone more quickly. I saw someone here talking about side effects but I haven't had any. Certainly nothing compared to Cytoxan.

No, I don't know about avacopan. I know he was dithering a bit at first (I assumed it was between Cyclophosphamide & Rituxan) but he decided quite quickly on Cyclophosphamide because we know it worked well first time round - although back then I was on tablets rather than infusions. I've not had any side effects so far and am down to 25mg pred, dropping to 20mg on Wednesday. Really hoping for quick remission like last time.

Potential upset is that I may have a growth or growths of some description on my left kidney - but I'm still waiting for the doctor to read the ultrasound scan report & tell me what's going on & next steps. I've been flip flopping between 'oh my god it's cancer' and 'nah, the immunotherapy will just vanish it' for 2 weeks now. On the upside, I feel completely well in myself & am able to crack on with work and childcare and stuff, soooo... this is fine.

UPDATE 9th Nov: Dr finally called about the scan. It's just a simple cyst!! This is more than fine. :D

[little sister]

The avacopan is taken along with cytoxan but replaces prednisone (at least in my case). Now my kidneys have improved enough to get off cytoxan and I'll get rtx every 6 months in addition to avacopan daily. Avacopan is a new targeted drug that is more effective for GPA and has fewer side effects than prednisone. But it is expensive.

[tmesis]

The avacopan is taken along with cytoxan but replaces prednisone (at least in my case). Now my kidneys have improved enough to get off cytoxan and I'll get rtx every 6 months in addition to avacopan daily. Avacopan is a new targeted drug that is more effective for GPA and has fewer side effects than prednisone. But it is expensive.

Oh, I see! I don't think it's available on the NHS yet, although it looks as though it will be. Fingers crossed your kidneys keep on improving!

[gilders]

Hello All,
Only just spotted this thread, so I'll give a quick update.
Main thing is that my WG is still in remission and my transplanted kidney is still doig quite well at around 35%.

I have suffered for over 20 years with crushing fatigue. Over the many years the fatigue has been attributed to many of my conditions, e.g. renal failure, Wegener's, sleep apnoea, anemia, etc, etc. All these conditions have been managed, but I've never felt any benefit, even including the transplant.
I have now been diagnosed with fibromyalgia, which really does explain why none of the treatments for my other conditions changed my lack of energy. Unfortunately, there is no cure/treatment for Fibromyalgia.