Thank you for letting me join this forum. This is the 1st time I have written on a forum, and have so many questions. Please do forgive my ignorance.
In brief: Hospitalised twice with Covid January & March 2001, but although positive for C19, my symptoms were mainly coughing up teaspoons of blood multiple times throughout the day & having pneumonia. Since then I’ve not been well at all and I’ve continually said my symptoms are: proper & painful fatigue, body aches & pains, coughing blood every morning, generalised just feeling pretty unwell, increasing shortness of breath so I have to breathe mid sentence - finding talking exhausting, and ‘pneumonia-type pain’ in both lungs. (Was v fit 55 yr old women. Represented GBR in 3 Triathlon based sports. 4 years ranked under #10 in world, so know / understand my body well). Since then, I believe I may have been constantly misdiagnosed with post-Covid syndrome. My Sats have always been in what’s considered ‘ normal range ‘, and my underlying fitness masking my symptoms, although consistently telling Dr’s that general ‘normal range sats’ is not normal for me as an athlete, eg: HR went up to 70+, when it was always under 45, unable to train at my normal level etc
November 2004, after multiple medical visits, being put on multiple doses of antibiotics/steroids, a Locum lung specialist going the extra mile, 5 high res CT scans, countless blood tests & urine samples, two bronchoscopies, & a kidney biopsy, was diagnosed with the above. (With lung and kidney impairment).
Rheumatologist said we need to “be aggressive & go in hard”. Treatment started the day of my diagnosis. Have already been on weeks of 60mg Preds, had two Rituximab infusions, & am on 60mg of Avacopan daily for 2-2.5 yrs, and strong pain meds for ongoing pain in my body, especially my lungs.
Many of you here seem to know a lot about your blood results, and talk about remission, and generally seem to know a great deal about your conditions. (I’ve been told I don’t need to know my blood results as the hospital will deal with this)
Questions: (please do forgive my naivety).
1) How do I know if / when I’m in remission?
2) What did you feel like before diagnosis, and how do you feel after your treatment has progressed?- What is the difference?
3) How can I become more educated? (I have read all of the vasculitis UK website, studied recent papers written in The Lancet, been on the Internet, but I just don’t feel I’m getting properly educated, & am still feeling very out of my depth).
4) Should I understand and ask for the results of my blood tests?
5) Can I work whilst being treated and having very low immunity?
Right now, I have stopped all of my jobs, (I’m self-employed since having to reinvent myself after Covid & feeling I had no option but to give up my lifetime teaching career).
I’ve been told to self isolate, and treat this as if we were back in the pandemic. I have a PPE station door, and very rarely go out side, and I’m very strict about the social distancing, and mixing with anyone. Am I going over the top?
I guess in a nutshell, I feel that this forum might be the only place where I might be able to get real life understanding from a personal viewpoint.
Thank you so much for taking the time to read this.
I would so very much appreciate any and all help you might have on hacks, tips, your journey, dietary supplements, handling the medical profession, anecdotes on how you are dealing with your condition and how you feel etc
…as of right now, I can’t seem to see trees. 😔😔😔
Hoping you’re all having a good day today, and sending strength and patience.
🙏🏻❤️🩹😷🏥🩺🙏🏻x
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SparkleGinger
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Wow, what a lot to deal with. I was diagnosed with MPA in 2015 with mainly kidney involvement. Though I do now have bronchiectasis and COPD. I did have the the standard induction regimen of rituxan while also taking prednisone.
I have not had treatment since 11/2019 and am still in remission—yay!
While I am not near as athletic as you have been I am again able to enjoy walking an hour each day with my dog and doing moderate strength training 2x per week at the age of 70.
I remember before treatment that my main symptoms were malaise, fever, weight loss — until my kidneys began bleeding which finally led to a biopsy and diagnosis. Now I feel great and rarely think about MPA.
To answer some of your questions—you absolutely have every right to your lab results and I would insist of having that information. I have learned a lot from the US based Vasculitis Foundation. The webinars are especially informative regarding diagnosis, treatment, understanding your lab results.
I can’t comment on work issues because I am retired.
I wish you all the best and hope that you get in remission and stay there!
Thank you so very much for taking the time both to read my long post & take the time to respond back. You have given me some more insight - I hadn't looked to the US for guidance, & will certainly be doing so., & will ask for reports from my fortnightly blood tests.
Thank you very much indeed.
Enjoy your walks & strength training. Keep well & fit.
hello welcome to the community, please see below my own personal thoughts based on my experience.....best of luck going forward!!
1) How do I know if / when I’m in remission? [Your specialist should tell you this based on organ function, ANCA levels in your blood tests and symptoms (if any)]
2) What did you feel like before diagnosis, and how do you feel after your treatment has progressed?- What is the difference? [Before diagnosis I felt some fatigue and a bit of weight loss but nothing too significant. I really caught the problem as part of my routine annual checkup. Lucky for me I did because my kidney was actively being damaged without any symptoms. After diagnosis there is some relief in certainty but the disease has totally changed my life and that adjustment was very difficult. I went from someone who ate and drank whatever he wanted to no alcohol, counting protein every meal, completely new diet. I won't sugar coat it, the lifestyle change is huge and it is had a depressive impact on me at times].
3) How can I become more educated? (I have read all of the vasculitis UK website, studied recent papers written in The Lancet, been on the Internet, but I just don’t feel I’m getting properly educated, & am still feeling very out of my depth). [Besides what you are researching this forum is the best because you get real stories from real people. I have benefitted greatly from much of the advice I have received here and I suspect you will too].
4) Should I understand and ask for the results of my blood tests? [100% absolutely yes. Set up a spreadsheet and track your results from test to test. See how the numbers change because then you will gain more understanding of the disease and also importantly how you can affect the #'s through your own behaviors].
5) Can I work whilst being treated and having very low immunity? [Tough question and needs consultation with your specialist but I would strongly recommend working if you can as that will give you less time to mull over the disease itself. But you want a low stress job to keep your blood pressure down and allow for sufficient sleep].
Thank you so much for this fantastic response. It is so appreciated that you’ve taken the time to go through each of my points. I will certainly ask for my blood test results and set up a spreadsheet like you suggest. And that way I can gain more understanding of things I wonder if you might clarify why your diet has changed, and you no longer drink alcohol. I haven’t been told anything about eating and drinking, apart from it has nothing to do with what I eat and drink or what I’ve eaten and drunk in my lifetime but I’m very keen to be as healthy as I can be. And I want to be proactive so please if you have time, could you expand.
All of my work is/teacher based.
I was told I should not sympathetic nervous system in, I am a specialist in Cold Water Immersion, and Coach my athletes in the water, whether that be in the pool or in lakes. I have been told that I should not do any of these.
Thank you again so much for your kind response and look forward to hearing from you if you have a moment.
Happy to help, when it comes to kidney involvement there are several variables to watch and a lot of them are driven by diet (your specialist might set a daily protein target for you as protein causes work for the kidney, likewise will want low sodium diet as high blood pressure is also bad for the kidney.). So whereas before I used to enjoy big steaks, lamb chops, hamburgers etc I cut that all out for "better" protein from tofu, chicken breast, white fish and egg white. I stopped the alcohol during Induction because I just knew it would be beneficial and I didn't want it to impede my progress. It was tough because I love my wine and beer but I'm glad I did it as it also helped me sleep better which of course is best for overcoming any illness. I eat zero processed food as the less processed the better from my research. In addition to sodium you should probably be monitoring potassium, chloride, calcium, phosphate and bicarbonate (these are standard in kidney bloodwork monitoring). There are some good articles and advice out there on good kidney diets. As for alcohol longer term the jury is still out. I used to be a chronic drinker for many years and I also reasoned that the benefits to cutting back would be beneficial for my liver and pancreas. This has definitely proven to be the case in my liver markers. Bottom line I will eventually enjoy a few drinks on weekends only (wine/beer) as it still gives me pleasure with friends and certain meals. I am just planning to go really slow at least until completion of my 2yr Maintenance period. That's just my plan as a sample size of one and if it helps you great. But you will find other stories and approaches that suit you better. Any other questions please feel free, we are here to help one another.
thank you so much for your succinct response. You have given me food for thought with regards to getting my treatment from a specialist vasculitis. I believe there’s one in Bristol, and Birmingham. I live in Worcester - unless you know anywhere else.
I will definitely call the vasculitis.uk helpline as right now, I don’t even know what I don’t know, if that makes any sense. I don’t even know what questions really to ask.
I’m really pleased to hear that everyone has said that self isolation is not good for you. I’m just trying to be so careful so if I do go to the shop shops I go just before closing time. when no one seems to be around. My friends are super cautious and we each other, and we always wear masks if we are in the same room. I also have But I might just be going well over the top here.
Thank you very much for sharing your views with me. That makes a lot of sense and something I need to do as soon as possible.
Wishing you good health, and thank you once again for give me such good advice.
Hi SparkleGinger. Just a bit of background for your own comparison and I will give you my opinion to your questions, I would rather help that way rather than give divinities answers. I have GPA, diagnosed 2019 was on 60mg steroids, Cyclophosphamide now finishing Rituximab after 5 years. I live a normal life as GPA currently well under control. I am not at your level but have always trained and did so during my illness. I cycle about 30 miles a week and Power Walk 6 miles 4 times per week. If weather bad then it’s weights or exercise bike. My resting HR is 59.
1) How do I know if / when I’m in remission?
Your Consultant / Specialist / GP has a duty to tell you this. Full Stop. When the disease is no longer harming you need to know.
2) What did you feel like before diagnosis, and how do you feel after your treatment has progressed?- What is the difference?
I was really ill. Severe headaches, kidney involvement, coughing up blood and short of breath. Now I live a normal life with only a few side effects from Rituximab. I had already adopted a low carb/high fibre lifestyle and have maintained this with the occasional treats and I like a glass of wine.
3) How can I become more educated? (I have read all of the vasculitis UK website, studied recent papers written in The Lancet, been on the Internet, but I just don’t feel I’m getting properly educated, & am still feeling very out of my depth).
I did all the above but to be honest I learned more from this forum
4) Should I understand and ask for the results of my blood tests?
Deffo. I always check my blood tests against the agreed tolerances posted by the NHS on the internet and question if they are occasionally outside, things like WBC Count, Heaemaglobin, etc. I also have the backup of saying “well these are your quidance”.
5) Can I work whilst being treated and having very low immunity?
I worked from home during Covid but didn’t when things died down. I think the advice about isolation is out of date. That’s just my opinion but it does you more harm mentally in my experience. I was scared witless about Covid at the start but as I have had my jabs and the virus is less severe I am careful but try to lead a normal life. I have had Covid 3 times and the last time got through it without any drugs. I have had chest infections and got through them, they linger but rather have that than lock myself up. My Wife goes to work I am now retired, I don’t think about it. Look I fully understand your anxieties because I was like that for 2 years and it’s your choice but you can still live a good life if you’re careful. Nick.
Good afternoon Nick, thank you so much for taking the time to write about your personal journey. I am in full agreement that I’m learning more from this forum than I can do medical journals. It is the real life experience of people like yourselves, that give me hope that is not all doom and gloom.
I keep reading about the one in five mortality rate within the first year due to infections that overwhelmed the system. I just don’t want to be that statistic, and I’m doing all I can to avoid germs.
Because I am so new to this, this is only my third month, I guess I’m being quite extreme about PPE, isolating, socially distancing etc.
So far, everybody who has very kindly written back, all mentioned knowing the results of the blood tests. My rheumatologist said I didn’t need to worry about the blood tests, and he wouldn’t give me any results. I will definitely push to know the results, so I can become more educated about what is happening on a fortnightly basis. I think the more I know the more I can chart my journey against how I’m feeling. Some days have been pretty horrible, barely being able to walk 30 m without severe what I would call pneumonia pain in both my lungs, but today I walked 4 km, and the pace was brisk.
it sounds like you are able to keep yourself fit with the amount of regular exercise you take. This also gives me hope.
Thank you so very much for responding. I’m looking forward to gaining much as the weeks and months go by.
No worries, remember we and I are always here to help you. I was just like you. Once you get your current infection/disease under control being fit like you are you will slowly slacken off you worries about catching infections. Remember the stats of mortality are different wherever you look, I was told 10% with Vasculitis but it’s important to remember that these stats include people who have other health issues or are in general poor health and maybe in thier 80s or 90s, I think in reality your rate like mine is much, much lower. I can promise you one thing. There is a very good chance you will lead a normal life just persevere until you get used to things and you’ll get there. Nick
thank you so much Nick, this is just what I needed to hear. I think that it’s taken so long to get a diagnosis because my stats have always been so good but in fact they were pretty poor for me personally. But it took someone who actually listened to my symptoms rather than just. Looking at the numbers to actually realise I was quite poorly. I really am projecting myself into this summer and hoping that I will feel so much better than I do now.
It’s good to know that we will start somewhere, and I really feel like I’m back in nursery ! I just probably need to give myself a bit more time, I have a bit more patience.
Thank you once again again for your swift reply. All good wishes to you, Nick. Jules. 🙏🏻🙏🏻
I was confused by your timeline, was it 2021 and treatment in 2024 ( rather than 2001 and 2004)?
The best way to assess remission are your symptoms - the fatigue especially. The way to get your blood results is by email to the rheumatology nurses help line at the hospital and ask for them. The best blood results to look at is your CRP level - its an inflammatory marker. Normal is 5 or less. More than 10 means that the disease is active (or that you have a bacterial infection). Mine was 250 when I was ill but now its 5 and I feel fine. Rituximab is the game changer for GPA vasculitis. An infusion intravenously every 6 months for 2 years seems to be the formula for remission.
You do need to be careful - but you can go out. I still use hand gel when I go to supermarket or open doors and I spot people with a cough or sneezing and keep away from them. Public transport makes me nervous.
Find out what your recent CRP blood result is. Good luck
I realise now that my dates are not correct. Please forgive me I’m very dyslexic, and use the dictation tool to write for me. As you said, I was hospitalised with Covid for the first time in January 2021, and I was diagnosed after being sick really since being hospitalised with Covid in November 2024.
like all of the other replies I have been given, everybody seems in agreement that I should know my blood results, and thank you for enlightening me as to what Markers as I should be looking for. Also another response was to speak to specialist vasculitis nurse, and I can then ask what markers I should be looking out for. I will definitely ask phlebotomy about sending me all of my results. I’m having my blood done tomorrow again so this will be easy to do.
like I’ve mentioned a few times I am incredibly cautious and carry hand sanitiser, and a proper graded mask if I do go out. I was definitely advised not to get into groups like restaurants, cinemas, theatres, pubs etc. And was advised not to teach in schools as they are a hot bed for germs.
Because I have been feeling so poorly over the last few months, and have had multiple visits and arguments with the various benefit agencies, I have not been idle for a moment, but once things settle down, I’m sure I will be able to become more flexible about going out in public.
Thank you again so much for taking the time to respond and let me know about your journey.
I really hope that things stay positive for you. Keep well. With best Wishes, Jules 🙏🏻🙏🏻🙏🏻
I have a slightly different variant of vasculitis having Vasculitis GPA.
1) How do I know if / when I’m in remission?
Me - Absence of active symptoms. For me that meant no more joint pain/coughing up blood/nasal crusting/fatigue. Corresponding reduction in blood markers
2) What did you feel like before diagnosis, and how do you feel after your treatment has progressed?- What is the difference?
Me - lots of severe joint pain moving about different limbs and fatigue before treatment. Reduction as per point 1.
3) How can I become more educated? (I have read all of the vasculitis UK website, studied recent papers written in The Lancet, been on the Internet, but I just don’t feel I’m getting properly educated, & am still feeling very out of my depth).
As you are already doing.... reading and asking questions. If you are a Facebook user there are a few Vasculitis type groups e.g. search for Vasculitis Support UK, but don't take it all as gospel... well it is Facebook I tend to avoid the US orientated groups.
4) Should I understand and ask for the results of my blood tests?
Most definitely. I believe most NHS hospital trusts have a patient portal of some sort to which results can be published. Ask your consultant which they use and ask to be signed up to it.
5) Can I work whilst being treated and having very low immunity?
Me - Yes, I do. Though I guess it depends on the nature of your job. I take rituximab so am immune supressed. I have a desk job, so it is not physically exerting. I don't avoid meeting people, but will maybe be a bit more cautious if people around me are ill. Work colleagues know I am immune supressed so they are more circumspect too. I did catch covid late last year. Symptoms were not so bad for me, but I did find it took me longer to shift it than my wife.
I do get every vaccination going too... flu/covid/shingles.
You have already had some great advice, so will only add from my personal experience of MPO ANCA, from July 2023. If you are like me, you have been hit by a bus and the best advice I received was to accept the shape shifting nature of the condition and be patient. Yes, in time you should understand the blood counts, how the antibodies work and monitor the results, but you have plenty of time. Ask your consultant, who should repeatedly explain what is going on with the results as it is so easy to misinterpret. For example, your ANCA score should ideally be below zero, but is probably sky high, but it is only an indicator. You get into remission when the Vasculitis, which you will always have as a latent condition, ceases to be active. Blood and urine tests will confirm this. It will probably take completion of the steroid course and several Rituximab infusions for this to happen. I've been in remission now for 6 months or more, but some of my symptoms are only now beginning to improve. It seems once the damage stops, the body takes time to adjust. I still have a high positive ANCA score, despite being in remission. I shall need further monitoring but I am beginning to get on better with my daily life, free from the effects of Vasculitis. So long as there is no long-term damage to your lungs and kidneys, you most likely will get to remission in a year or so. Has your consultant told you the nature and extent of the damage to your organs?
Is your rheumatologist a Vasculitis specialist? He doesn't seem confident in explaining the blood results. Demand referral to a Vasculitis clinic, where you meet doctors and nurses who know the condition inside out. It may mean a journey every 3 months for monitoring, but it will be worth it.
Good afternoon. Gosh, you have absolutely hit the nail on the head here. My mind is blown away with what is going on. I definitely haven’t processed this. I would say I’m definitely in panic mode. I spend much of my time getting rid of my possessions so that no one else has to do this if treatment doesn’t work. I know this sounds but it’s how I feel I need to deal with things at this moment in time. I might regret this down the line.
your advice about the bloods and understanding the results and finding a proper vascular Centre is definitely what I will be asking him when I see him next week for my update.
When I was originally told about this, I still felt very sedated from a second bronchoscopy that I had just a couple of hours earlier. I remember thinking that I was feeling quite ‘Drunk’ & not really with it. I also have never heard half the words he was speaking anyway. So I really am starting from scratch. Like you’ve said, and I couldn’t agree with you more, the responses here have been absolutely amazing.
Thank you so very much for writing your experience here.
so far my lungs are about 50% affected, but I think I remember him saying that my kidneys hadn’t been damaged too much and he wants to keep it that way. And this is why I started treatment the very next day.
I’m not sure if I’ve misunderstood this, but a number of people say that they are still on steroids. I haven’t taken any steroids since about two weeks before my first infusion which was at the very beginning of January. I am taking a prophylactic antibiotic to stop me getting pneumonia, Avacopan 60m daily and my two starter infusions of Rituximab.
I have also heard that the infusions are a slow burner and perhaps should feel better within 6 to 9 months. Which corresponds to what you have written.
you so bothering to write back in such a comprehensive way. I really really appreciate piece of that I have found on this site.
You have been through an awful lot, and maybe it took longer than it should, but you have at last been diagnosed, confirmed by biopsy and there should be no need now to panic. You are on the home straight. You have had lung damage and there will be challenges and you deserve the best treatment. I go to Addenbrookes (Cambridge University Hospital) where the doctors there wrote the text book on the treatment of Vasculitis. They take patients from all over the country. I don't know why the use of steroids was so short lived in your case, but you need to get immuno-suppressed to stop the Vasculitis and steroids are useful in the short-term, with a two year course of chemo like Rituximab. There are other chemos and medicines to be used to you get your immunity into a balance. Suppressed enough to stop the Vasculitis, but enough immunity to stop you getting every infection. Everyone is different, but you should be able to lead a functioning, symptom free life, given the right treatment for your Vasculitis and protection of your lungs.
Pace yourself as time is on your side. I wish you the very best on your Vasculitis journey.
I think when I See my rheumatologist, which is on Tuesday, I will ask him about referring me to a specialist vasculitis centre. Having also read so many of the replies to my floundering essay, I feel much more optimistic about the future. And Although I am very new to this, I hope to be less strict on the way I do things, and behave.
I press the reply button before finishing! Just to say once again, thank you so much for your insight and wisdom. And thank you for your kindness. This Platform has made such a difference to my mood. I’m sure I will be posting again soon.
Thank you, and thanks to everybody Who has made the effort to kindly respond.
Hi I was diagnosed with GPA (MPO not PR3) in 2012. PR3 tends to be more aggressive and renal, MPO tends to be less aggressive and airways/ENT. Both tend to make you knackered when flaring and at some stage you’ll probably get pains into your muscles and joints which are hideous. Sorry but that’s the way this tends to rumble.
Huge advice that I got on diagnosis from my consultant was “if anything at all happens with your body for 3+ days which isn’t normal for you, don’t go to the GP go to the hospital vasculitis team” this disease moves around your body and can pop up anywhere so ANYTHING unusual go back to the experts not your GP. Including red eyes, skin rashes, weird pains, etc
So my advice is, ensure you are treated at a vasculitis specialist centre, who will see you in under a week at any time. Travel to get to the best place possible - I go 3 hours each way to get into London to the Royal Free. And all specialist centres should share blood results via an online portal it’s your body and your results and your disease to manage, consultants will help but every one is so different and what are high results for you with MPO may be considered very low for others, the best consultants work off how you feel and then the bloods help them and you understand what levels are “red flags” for you - it’s not a tick box job.
Before diagnosis I’d been incredibly fit swimming a mile a day and running 5k - 10k and working flat out in a high pressure role. I am convinced I “over leaned and over stressed” my body physically and imo that caused the disease to kick in. I will never know for sure, but I am 100% convinced. I know a scary number of people with MS (also an auto immune disease) who were previously marathon runners which has probably shaped my view.
The USA vasculitis foundation site has brilliant videos and in the US they now treat MPO and PR3 GPA differently. If your kidneys are affected heavy meds are the only real option. With MPO it tends to grumble up and down and be less likely to go into the kidneys - from what I’ve read on the USA site.
For me I was flaring up and down for 5 years then symptom free for 4 years, when it came back it was pains and stiffness in my back - everyone told me I’d put my back out, then over 4 months the pain gradually moved to my hips and shoulders and then when I couldn’t walk I went to my vasculitis specialist in desperation not thinking it was vasculitis (paid for a private consultation) and was amazed it was a flare, and after a short course of steroids 20mg/day tapering to zero over 3 months I was fixed.
So finally the second advice I got on diagnosis was never to drop off the radar even if you are fine (in remission) as it can come back at any time in any way - guess who ignored this. So now I’ve promised myself to always get checked every 6 months for life even if I think I’m all fine!
I find avoiding all physical stress helps, so I’m no longer a fitness bunny and have accepted my body will never be the same again - I find emotional stress (from crao utility companies to idiotic family or friends) also don’t help. Zen living in my veggie garden certainly helps along with long walks every day and a bit of light swimming.
Good luck on your journey, the disease isn’t great but at least we are all still here, and the good days are great, you just have to ride through the bad ones. And if you don’t get on with your hospital team, change hospital to a better one - the NhS let you choose!
Wow! Thank you so so much for your words of wisdom, and your advice here. You sound really certain and determined. I also have stressed my body and mind extensively. Not only the continual training keep my place on the GBR age group squads, but also was director of Art, and Houseparent at a well known boarding school.
I would definitely agree with you that the more stressed I am, the worst I feel. I was seen by a chronic lung disease disease who happened to be a regular Open Water/Cold Water Immersion dipper/ she told me that I was no longer allowed to even Cold Water dip in my pod & definitely not go swimming/training in rivers.
Please may I probe a little deeper, so even if you are feeling fine, who do you see to get to know whether you are having a flareup again? Is this due to bloods or do you ask to see your specialist rheumatologist?
I’m just beginning to realise how little I know, and how much more I need to understand before I feel a little more , and more comfortable with what I should & shouldn’t do.
Thank you for pointing me to the vasculitis America site, I guess that because they’re much greater than, they would have more people this applies to.
I’m looking forward to rereading and making notes about everyone’s responses.
And once again, can’t thank you enough for taking the time and making the effort to respond.
I really do appreciate everything you’ve written.
Wishing you all good wishes for a healthy flareup free future.
Hiya, for the first 4 years flares were usually in my throat and/or lungs and I would know as I would have a dry irritating cough that got worse with running, and that ended up with a dull ache in my back at my shoulder blade on the left (my lung) which is where the inflammation often set in along with the main airway. During that time (2012-2016) UCLH had a superb NHS run specialist airway clinic and within a weeks notice I could be under anaesthetic being reviewed by a brilliant respiratory consultant (now sadly retired) who ran the clinic and a top ENT consultant from another London hospital at the same time and wherever the problem was (lungs or throat) they could surgically sort it out there and then or confirm no inflammation back to the vasculitis consultant at yet another London hospital. They all worked really well together and a visual inspection so much better than CT scans which are less reliable. It also meant that I had an annual review of the exact state of my airways. I think this was a rare and unorthodox approach which started before Rituxumab was around. I suspect from reading posts on this forum that the approach now is just to put people onto Rituxumab.
During those years I had a number of other weird things, massive short lived swelling (7 days)and pains (crutches not able to walk) of my foot (twice) and shoulders every couple of months for a few years. I would go and see the vasculitis consultant who ran bloods etc and as long as they were OK it was a case of ride it out.
Now I go and see my vasculitis consultant at the Royal Free every 6 months and have bloods checked etc. If I have problems in between appointments I just get in touch and they usually fit me in for the next week at the NHS hospital clinic or I might go and see him at his private clinic as I do get some cover on medical insurance.
Its worth knowing that at the NHS clinics you can insist on only seeing a Consultant (this usually means the same person) rather than a registrar (which often means lack of consistency and having to keep repeating yourself which after 10 years takes for ever if the disease moves around your body). As this disease impacts everyone so differently I find seeing the same Consultant and not a random selection really works well and they don't hold it against you!
I admit that I see my consultants privately from time to time if I want a long chat as the NHS just doesn't have the time, and since the UCLH difficult airways clinic changed respiratory consultant and ENT I haven't used it as the disease has left my airways alone for over 6 years.
In London most of the major hospitals have Renal leading on GPA (MPO and PR3) as the biggest risk is kidneys, but they understand every facet of the disease if they are any good and so I have never been under Rheumatology.
The debilitating joint and muscle pains that I have had on and off for 3 years are a new thing to me and all post covid/covid vaccines and I have been advised by a vasculitis Consultant that many many more problems with joint and muscle pains have been reported through vasculitis clinics since Covid, they think there is a link but they don't know why. I find very very low doses of steroids taken symptomatically works ok - my Consultant is slightly baffled that this works but hey ho. I do wonder having read posts on this forum whether it is actually Polymyalgia Rheumatica (PMA) alongside GPA as PMA responds to steroids and not Rituximab, but I'm not chasing that rabbit down the hole! This is the last set of vasculitis symptoms that I have now, and if they would just go I would be so happy, my Consultant tells me to be patient as GPA "waxes and wanes" - hmm patience is not my middle name!
Hope some of this helps, and feel free to ask me any other queries anytime. Take care Helen
Hey there. Abit about my journey/experience first. I was diagnosed mid December 2024 with ANCA vasculitis GPA. Like you I'm very new to this. I've just had my second Rituximab infusion and I'm starting Avacopan today. I'm still learning about the disease and expect to continue to do so for many years.
Be patient and kind to yourself. I'm not a doctor and I don't think it's realistic to expect to be an expert in such a short time. Listen to your body, do what's right for you and pace yourself. We have a serious but very treatable disease, and there is ever reason to hope for recovery.
Your questions
1) Remission- my Doctor said we're aiming to be in drug free remission in 18 months. I'll be looking to him to confirm when this happens and as others have confirmed my blood tests will provide the evidence.
2) I was bed ridden with muscle and joint pain. I also had severe pain in my ears, nose and nose. It was very scary but the steriods worked wonders. I'm back to 70% normal. Rituximab infusions take 2-4 months to work so tbc.
3) My Rheumatologist warned me the Internet is filled with worse case scenarios when it comes to this disease. Be careful online and take the information in context. Try not to over research!
4) I don't understand my blood results either but they are shared with me. Maybe your Rheumatologist was trying to stop you worrying. I intend to learn about all the markers and test results but when I feel ready. There is no hurry, unfortunately this disease isn't going away.
5) I'm not currently working but aiming to return once the Rituximab infusions kick in. I think whether you can work is very personal. Everyone's symptoms are different and different careers have different demands. I can completely understand why you've been advised to not go in swimming pools and rivers if your lungs are damaged and only working at 50%.
When diagnosed I also self isolated to avoid infections. It's what I felt I needed to do to protect myself. There is so much respiratory illness around at this time of year. My Rheumatologist said recently I don't need to hide away so I've gradually ease this. It's your choice, do what's right for you. My well being has improved since I've started to do more but I'm still being sensible.
I'm quite impressed by how quickly your Rheumatologist started your treatment by the way. I'm being treated at the specialist Vasculitis clinic at Southmead in Bristol. I had to wait a good few weeks. My Rheumatologist is good and I trust him but yours also sounds on the ball. Maybe don't shop them in just yet. Be a shame to have to travel loads for appointments if you don't need to. Everyone has different experiences, do what is right for you.
I feel completely out of my depth some days. I try to remind myself this is a new reality that will take time to accept. I've been focusing on my well being, doing things that make me calm and happy (reading, music, meditation, crafting and cooking).
Pace yourself and remember to be kind to yourself too. Oh and please stop selling your possessions.
I'm a little late replying to your questions. I haven't gone through all the response, so, if this is a duplicate, I apologize. Here are a couple of websites that may help with info.
I am in U.S. and was extremely lucky to get ill in Raleigh, N.C. I was minutes away from UNC Hospital where there's a world-famous research facility, headed by Dr. Ron Falk (nephrologist), for treating GPA. I was diagnosed in 2016, and am also a triathlete and marathon runner. I am in remission now, I have been without any treatment for 5 yrs. Dr. Falk calls this LTROD, Long Term Remission Off Drugs. Good luck to you. Continue to excercise the best you can. Your story is so similar to many, many other patients I have met during this journey. The best part is getting diagnosed,
1) How do I know if / when I’m in remission? Blood and urine tests did it for me.
2) What did you feel like before diagnosis, and how do you feel after your treatment has progressed?- What is the difference? I had no ill effects after my Rituxan infusions, maybe a little tired, but I was so fatigued due to GPA, it was hard to tell the difference.
3) How can I become more educated? (I have read all of the vasculitis UK website, studied recent papers written in The Lancet, been on the Internet, but I just don’t feel I’m getting properly educated, & am still feeling very out of my depth). See above.
4) Should I understand and ask for the results of my blood tests? These should be provided to you without asking, but YES! Certainly request, no DEMAND, your results.
5) Can I work whilst being treated and having very low immunity? As I got stronger, I did go back to work and explained to the staff about my new "compromised" condition and to please stay away from me if anyone is not feeling well. I won't be insulted.
I am in remission. How do I know because after each 6month checkup, my consultant sends my GP a letter clarifying my current situation, including blood and urine results, but he sends me a copy too. Clearly this does not happen for everyone. I google the blood results to understand better what the individual values mean.
Yes you can work whilst being immune suppressed - I did apart from two months where I was really ill (wheeled into hospital for 7 days whilst they figured out what was wrong with me) and then until the steroids and biologic kicked in. I had two years worth of biologic infusions.
My consultant made the comment that my life style choices had helped my path to remission. I was pretty fit before Vasculitis. After I worked on my fitness again (you have to listen to your body but don't prevaricate). I also eat a mostly whole food diet with lots of foods the are anti-inflammatory, and avoid ultra-processed foods.
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I tend to avoid the US orientated groups.
Discharged from QEBH 
How was you diagnosed? My bloods are normal , I don’t feel normal and the doctors seem baffled. 
Bloating and Rituximab 
