Good Morning to you all. I was hoping someone who could advice me on GPA Replase. I was diagnosed back in April of this year spent over 2 weeks in hospital and treated with Rituximab and continue on steroids unable to tolerate Azathioprine so spent the summer reducing steroids down from 60 mg to 10mg there was gap of 12 weeks with no blood tests or review. GP happy to leave my care to the consultant Right now are recovering from a very nasty chest infection have been seeing consultant weekly and have completed a high dose of septrin over 3 weeks. Bloods taken weekly confirmed infection with CRP 147 Now on low dose daily septrin. Due to see consultant in a weeks time. Had t/c from his team a week ago to attend for chest X-ray prior to Rituximab treatment. One planned session has been cancelled due to infection. My concern is that on my original chest X-ray taken 4 weeks ago the consultant rang me at home which was a big surprise to discuss cancelling booked Rituximab he said that my X-ray having discussed it with the radiologist and respiratory doctors was showing potential damage due to the Vasculitis but they wernt 100% certain if it was due to infection/Vasculitis. He said if things didn’t improve he would organise a CT scan. I am pleased to say the chest infection has much improved and my energy levels are climbing. I have to say i felt so so ill over a number of weeks.
My biggest problem now is my shortness of breath which has got worse. Any activity of any kind leaves me struggling to breath. I have been positive that it would improve up until now but it doesn’t and I am worried that there is permanent damage on my lung(s) due to the Vasculitis
If there is anyone who could give me some sensible advice I would be so grateful
My husband has had GPA for 11 years. Most recently his chest infection and shortness of breath led him into hospital with Covid. Have you been checked???
Hello Nadine. Thank you for your reply it is much appreciated. I was tested for covid by the hospital within the last few weeks I was negative. My daughter has tested me with lateral flow since then and thankfully I remain negative.I mentioned I have had 2 of the covid vaccine since my Rituximab in may but unfortunately cannot squeeze in my 3 rd or my flu vaccine due to the infection and the planned Rituximab Thank you again Janet
You need to have that scan and to speak to your rheumatologist to find out what is going on. I can only tell you my experience, which is that vasculitis damaged my lungs straightaway, showing up as shortness of breath. Bronchiectasis followed, and I can get chest infections very easily, so tend to keep myself safe. The shortness of breath is chronic and worsens on effort. My vasculitis is controlled by preds and mycophenolate. It is the damage it has done to my lungs and kidneys and more that sucks. Do get yourself checked out if that is possible these days. Best wishes.
Many thanks for your reply. Of course you are right in saying I should push for a scan and yes I will when I see my consultant Monday. I am covid negative I was tested at my last hospital appointment and have managed to squeeze in 2 doses of the vaccine but cannot take up a 3rd or my flu jab as I was told I need a month clear of the vaccines before I can have my Rituximab I was an extremely strong person but this illness has knocked my confidence completely and I feel I am a shadow of my former self I should have pushed for the CT scan before now. Thank you you again
Thanks for your reply. I know exactly how you feel regarding being a shadow of your former self. I was very fit and healthy, having looked after myself, before being very suddenly struck with this wretched autoimmune disease, although nobody had any idea what it was at the time. It is coming up for seven years since my life started to change, and with more and more things piling on, I feel that I have lost the person I was. When I post I usually try and encourage my companions on here, but my own courage is wearing thin now. I hope you fare better than me.
Hello May. Don’t give up on yourself you are doing ok if after 7years you can still offer kind words to other bedmates. Can I ask you did you have a problem with weight gain during the early stages of being diagnosed. I have gained 3 stones and a face and neck possibly twice as big as normal. I am ashamed of my body and my face which I avoid looking at. My husband and daughter say “it doesn’t matter it can’t be helped”. I wish I could see it from their point of view but I can’t. I lost hair on a daily basis following the Rituximab but luckily I am blessed with hair galore so it was hidden quite well and it’s settled down now. If I could sort the shortness of breath which leaves me hanging onto furniture as I move around the home it would lovely I have an idea in the back of my head that I will look into in more detail a nhs programme for getting back ones fitness to a level en par with the new me. But that’s on hold till I get myself sorted with the lungs and Rituximab
Roll on Monday appointments with my consultant and the results of my latest chest X-ray.
Dear Janet, How kind of you to offer support so quickly, especially while you are going through the mill. I have spent the first five years or so looking on the bright side as much as I can. I have been hoping for better things, as well as realising that there are many people worse off than me, both within the vasculitis community and outside. I faced lockdown in good spirits because I have a husband and two loving cats, and a garden. I wasn't stuck in a flat alone like some poor souls. However, the good spirits wore thin this year, especially after so called Freedom day when masks were no longer compulsory, and my own new found small freedoms were curtailed again. I am not alone in this, I know. Now I face another Zoom Christmas with my sons, which I find so depressing. These are all things which others on this forum will identify with and fully understand. But it is the loss of my former self that gets to me the most. I was a mum and a daughter, as well as a wife, and always in control of myself. I helped my parents through their last days with such energy, but before the sale of their bungalow was complete, vasculitis struck and the energy was lost. Sorry to ramble on, and I will now answer your questions............ Since taking prednisolone, I have gained weight, about 2 stones. I don't put it down to the medication alone, but also the consequences of it. A month after taking a high dose of preds when I was first diagnosed, I suffered a huge, new pain in my back. The first GP I saw said it was a muscle spasm, but several weeks later I saw my own GP and was sent for an x-ray which showed that I had a vertebral fracture, osteoporosis and osteoarthritis. I lost several inches in height and my back looks like my mum's did in her eighties. I now walk with a stick. My back aches if I'm on my feet for too long, and walking, especially up a gradient, gets me puffed out. So I don't enjoy walking anymore, and this doesn't help the weight problem either. I have made various efforts, these last few years, with physiotherapist advised exercise regimes, but at the moment I've gone tired and lazy because I don't sleep too well. Breathing problems are chronic. Vasculitis narrowed my airways immediately, and they call it Moderate Airflow obstruction. I'm fine when sitting down, but any effort such as light housework, going upstairs etc. gets me puffed out. I use walking upstairs as one of my exercises though. I can't comment on your face and neck, as I never had this problem, and you are on different medication to me. I expect your consultant will advise on how long this may last... Oh goodness, I have been going on a bit today, I don't usually. Well good luck for Monday, and don't forget to report back. Best wishes May.
Sorry to hear you have been so poorly. Rituximab leaves you with a weakened immune system so you pick up infections easier. I had one chest infection after another and a CT scan showed I have Bronchiectasis like May7. This can only be diagnosed on CT scan. Bronchiectasis makes you liable to chest infections. I agree you should push for the CT. It’s a fine balancing act as another dose of rituximab will make weaken your immune system further. If possible you should get a sputum sample to the GP for testing before you start antibiotics.
Many thanks for your reply. I was asked for a sputum specimen a number of weeks ago and at my last appointment the results were not available I am covid negative. My consultant mentioned recently that the latest blood tests were showing my immune system is still below par. Again thank you for your reply Janet
I have only had one kicking from Vasculitis where I went in the space of a few weeks from very fit and active 50+ to being wheeled into a hospital. Now back to fit and active with 6 monthly Rituximab transfusions (plus statins and blood pressure med - apparently they both have benefits to Vasculitis condition) to keep me in remission. In my personal life, I do a lot of exercise which helps mentally and physically, a lot of raw fruit and veg, and plus daily multi-vitamins - to boost natural immunity to infections. I also use a Power Breathe (powerbreathe.com) to strengthen my lungs. You have to listen to your body and consultants but occasionally give it a little push to break out of the homeostasis loop.
I’ve got lung damage from vasculitis and prednisolone. Infections and reflux aggravate the situation with all my respiratory system. I’ve been in situations where I’m relapsing (with scleritis in eyes, rash, joint pain etc) and been very breathless. It can take ages to recover. I am very careful now to avoid irritants like dust in my lungs which seems to help. I also have a fostair inhaler from my respiratory consultant - he blamed prednisolone damage but said he wasn’t 100% sure, no one could be. Hope you feel better soon. Do you know about square breathing? It’s worth looking up on you tube.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
How quickly can you relapse after rituximab
Aortitis- prednisolone tapering and relapse
GPA and prostate cancer
