ANCA positive small cell vasculitis and coug... - Vasculitis UK

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ANCA positive small cell vasculitis and coughing up stomach fluid

Jools52 profile image
15 Replies

Hi to all,

I am still into the process of having a definitive diagnosis so, right now, I am told it is ANCA positive generalised small cell vasculitis. I bet rigors and my temperature will rise to 104 but I feel freezing cold and am even scared to expose even a hand, from u dear the bed covers.

After these rigors, I've often coughed up dark blood but it seems to clear after around 3 days but I feel totally beaten up for at least a week to 10 days after.

I was recently screened for H- Pylori and it was positive so I was put on metronidazole and amoxycyllin plus omeprazole. I finished this on Monday but I had one of my rigors yesterday and was apparently talking to a non existent person or people and was so very ill all of yesterday and had a really awful headache all day. I was coughing up what I believe to be stomach juices but had got into my lungs. My chest was so painful that I could not take a deep breath and I somehow managed to clear my lungs at around 02:00.

Has anyone else had this type of thing and, if so, can you give any advice please. I am seeing a lot of medical people within the next 10 days but I couldn't make my appointment to have a nerve block into my lower back and I am so upset and the leg pain is excruciating. I really do feel like I am about to die when I get these rigors but now it seems my lungs really are taking a big hit.

I won't lie and pretend I am being strong, I feel extremely low and depressed and I really wouldn't mind if I passed. This disease and the meds make my quality of life so very poor.

Thanks in advance


15 Replies
DevonLottie profile image

Hi jools. I haven't had the same as you but just wanted to send you my support. Whereabouts are you going for your tests? Are you being treated by a knowledgeable vasculitis team?

Jools52 profile image
Jools52 in reply to DevonLottie

I am being treated at Bristol but by proxy as Addenbrookes are making the calls on tests and more. I am going to the London free to have generic testic for periodic fever syndrome next. I had an H Pylori infection and was treated for it then just 3 days after the end of meds and I had the rigor and am still bringing up blood.

I knkw this will sound dramatic but I feel I am not long for this world now. Just too much going on and so many meds over so many years. My lungs are the worst affected and my upper stomach and upper right quadrant are very hard. I did have fatty liver prior to this and believe azathioprine isn't good for liver problems.

I am tired of life like this to be honest. I don't live now but exist and I feel that maybe it could be time to let it all go. I really am done in and can't cope with the many hospital appointments and phone calls. It is as if I am in some kind of breakdown to be frank. Weak bones and awful bone and joint pain, teeth breaking and snapping, random sweats, abscesses and so much more. I don't know if I can or even want to carry on right now.

It's sickening to see others doing things and loving while I watch from my chair, through the window. I don't think I've ever felt so sad and alone. My GP helps with all he can but he can only do so much. The complexity of the Crohns colitis plus long standing disc degeneration is bad enough without this vasculitis.

Thanks for your kind words

DevonLottie profile image
DevonLottie in reply to Jools52

Sounds like you've had a tough time of it but you are getting treated at some excellent hospitals so there is hope for a positive outcome. I know those words must sound banal to you right now - I know Ive felt really defeated at times - but please try to keep your spirits up if you possibly can. You're not alone.

johanna-68 profile image

Dear jools

I second what devonlottie said. I'm thinking of you and my heart really goes out to you,, you're suffering so very much. I just wish there was something I could do to help you.

Take each day as it comes and try and have some fresh air each day.

Keep all you're medical appointments. I hope the specialists will be able to give you something to give you some relief

Take care


Jools52 profile image
Jools52 in reply to johanna-68

Thanks Jo x

Hi Jools,

I think we can all identify to some extent with the way you are feeling just now. The search for answers and effective treatment takes such a long time and can be overwhelming.

Are your Dr's aware of the depth of your despair at the moment? You need some help to put all this in some kind of perspective to decide what you want to do next. I saw a Clinical psychologist for over a year and found her help invaluable in helping me come to terms with my illness and the way it had impacted on my life ( losing my job and driving licence ).

You have choices, whether that's to continue with the diagnostic process and finding a treatment that will hopefully make a difference or pull back and accept what that brings. My concern is that you are not in the best place psychologically to make decisions without help at the moment.

Jools52 profile image
Jools52 in reply to

I have repeatedly asked for CBT but it never happens. I am seeing a counsellor but she clock watches and is a student and I feel uncomfortable with her as it seems she has no real put.ine or plan to work to

I just need to get a grip I guess but some days it all gets too much. I honestly can only take it one day at a time which I know is cliche but it's true. I somehow manage to get through the days but it's a real Groundhog Day thing where each day is the same as the previous. No life or excitement but pain and suffering.

Mgtrob profile image

Hi Jools, I feel so very sad to read about all your going through and truly wish I lived near you and could come and have a chat. I know the pain I have from arthritis and cannot even imagine what you must be going through. Please know that all the people on Health Unlocked are here for you. With love Margaret x

Jools52 profile image
Jools52 in reply to Mgtrob

Thank you so very much Margaret

Mgtrob profile image
Mgtrob in reply to Jools52

Hi Jools,

I am so very pleased you have managed to do your gardening jobs and do not feel so down. My husband was in his 40's when he had his first back op this was to remove a displaced disc at L1/L2 and then he had a further op early 50's to remove a disc at L3/L4 so I can understand what you are going through re back problems apart from everything else. He always tells me that nobody can know the pain he has. Our son has WG which keeps flaring up - life is hard but we always try and stay positive & cheerful which as you know is sometimes difficult. It is very good that you can talk to people about your illness and remember there are people here who are there for you.

Margaret x

CloudGazer6 profile image

You must be having a really tough time at the moment, not least feeling so unwell physically.

Counsellors do a great job but are rather different from clinical psychologists who specialise in health conditions and who take a variety of different approaches, depending on what is most helpful to a person at the time. I second Keyes' question - is it with your hospital team that you've been asking about CBT? I believe that there may be a clinical psychology team at the hospital(s) in Bristol who take internal referrals from the specialist medical teams. I would encourage you to talk to your specialist team (again?) and to your GP. It is very important that they are aware of the level of distress and worry that you are experiencing. It's not easy to share such personal emotional information but you have conveyed it so well - and courageously - here. I wonder whether you would feel able to print out and share with your health-care professionals what you have written here and shared with us. I hope that they will then assist you with an appropriate psychology referral.

Jools52 profile image
Jools52 in reply to CloudGazer6

That is actually a good idea. I habe done this before but not when I had the physical diseases and it was "just" the depression !

I have been taking pregnenolone plus high dose magnesium malate and DHEA. Yesterday I forced myself to cut the grass. Trim the fir trees and privet hedges. It meant taking extra slow release morphine but I slept so soundly. I really enjoy physical work but am unable to do the simple things and I often habe ended up seized up with muscle spasms and a locked out lower back. I've had times when I've been on the floor and outside for 5 hours, before my neighbour got home and he,led me in.

I am hurting very badly today but I feel a real sense of achievement in doing the work. It's so hard being put out to pasture at 52. I have tried to get work but as soon as the Crohns and Vasculitis are mentioned in human resources forms then the jobs have either been miraculously filled or were made redundant by magical restructuring lol. I've a long standing and chronic back problem at L5 and L4. One disc is split in the middle and the other is bulging.

I used to be a sales director and then MD of a blue chip German plastics company and earned very well. All of that is now gone and I am struggling to just pay the bills. Thank god I at least had the foresight to buy my own house. I really don't think I would have made it. I went from the Royal Marines straight into sales buy also had periods of manual labour as I did the Aug weirdesein pet stuff and pretended to be a brickie. My brothers were brickies and so I learned enough to get by

My partner, Sophie, says I should use the disability cats to get work but I don't even know where to begin with that.

I find that having long term diseases means we stay in and therefore away from other people and for too long. This obviously makes us less sociable and we lose social skills.

I feel that I would be so much better if I had some kind of job. I know that most employers would not want an employee who can sometimes have to be off and for weeks at a time but it would be great if we felt we could contribute in some way.

Boy, I can really feel it where I did the work yesterday but I can handle it as I know I habe dealt with what was a major headache for me.

I find that I don't tell new people of my ailments as I feel that society is like a big fish tank and when the bigger fish see a weak one then it's nature that it's gets hurt and eaten. I know it's a daft analogy but I feel it fits.

Thank you to everyone who replied. You guys probably saved me from doing something very silly. I had counted out 126 morphine tablets, 200 diazepam and 5 fentanyl patches which I had planned to suck rather than to stick on my body.

You guys very literally played a part in potentially saving me from myself.

You rock, God bless you all

Balderick profile image
Balderick in reply to Jools52

Please be careful with the androgens. I have seen my friends lose limbs due to impure DHEA & pregnenolone. Having been around the rugby circuit you maybe wouldn’t believe the performance enhancing stuff still used and the 2 you mention are not without their dangers.

BTW a little bird tells me you share much of what I go through. I would leave my telephone number but I will try to do so by private message.


CloudGazer6 profile image

Dear Jools52

It's great that you managed to get outside yesterday, but I'm sorry to hear that it's left you in pain. My apologies if I have missed you talking about this in previous posts, but have you come across the ideas about pacing and exercise and pain? They can be very useful if you find you have a tendency to a 'boom and bust' pattern, which so many of us do when we have a good day and want to take advantage of being able to move again.

Here is a link to a site that talks about how to spread activity across the days:

(ignore the references to princesses - it was the site that explained it best and that didn't take too long to download!)

Have you thought about looking into doing something on a voluntary basis during this period? You sound like someone with many skills and a lot of expertise and who enjoys being useful. Local councils as well as charities have offices that coordinate even a few hours a month to suit someone's individual situation. I wouldn't be able to commit to a regular number of hours at the moment, for instance, but could volunteer to do something that fits around my health situation.

I'm so sorry to hear that you were feeling so despairing that you had counted out tablets and other medications. If I could urge you to do one thing in the next few days, please go to see your GP urgently and talk to him or her about how you have had plans to hurt yourself. This is not at all a sign of weakness, but an indication of how much pain and distress and illness you are having to deal with at the moment. Pain is very difficult to cope with on one's own, especially if you are feeling socially isolated and that your day to day life at the moment has changed dramatically from how it used to be. You are doing really well to see the counsellor but I think your GP needs to know that you would benefit from additional psychological input and support at the moment. Your doctor in this way will also be able to understand more clearly the impact of the illness on you. If it's easier, print out and take to show your doctor these conversations we have been having here on the website.

I have to confess that I will be worrying about you. Would you feel able to let us know when you have seen your GP and explained how difficult things have become for you?


Jools52 profile image
Jools52 in reply to CloudGazer6

Hi Cloudgazer,

Is seeing my doctor early this morning. In 3 hours and I will let you know how it goes.

Many many thanks.

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