I have had some tough health battles in my life but this CSS thing is muurder , Any tips on coping with the breathing and pain

[Skipper55]

I have had a spine rebuilt from a head on , chrohns disease but since the breathing

Issue started 1 month ago on top of the kidneys 3 years and feet ,it's like I have lung cancer , with someone drilling through my chest and or it's been crushed , 2 weeks to 2nd I'V steroids and chemo , that's if I do not go bankrupt in the mean time

[HiveMind]

Hi Skipper,

I do feel for you I really do. I have CSS and my chest issues, in the early days, were sheer hell. As bad as it gets. Just know that, with the right medical care, much determination and a positive attitude (not to mention a wee bit of luck) it will get better.

All I can say to help you is, own your condition and be proactive in managing it. Feel free to contact me if you want to discuss.

[Skipper55 in reply to HiveMind]

To berkshirebird I have now thank you to a fellow member of our group and my GP it's the inflamation of the cartilages between the ribs 6 of them this makes up 80% of my pain and disability ,

I have a codeine patch which help stops the pain kicking off but when it breaks that I go to endone but rarely does it pull it back from time to time it halts it getting worse but the best outcome it over 3"days low level morphine shots maybe 3 to 5 of them and each time is different but I can over 1/2 and hour feel the pain slowly leave my body . I have had 7 good days in a row , there has been a few times when it was bubbling up so I used endone a laid very still for 3 hours or so. I saw all of that on a back drop of going from 15mg to 50 mg of Pred for 2 weeks pain terrible and implementing that regime once but in the weaning off the pred of 5 mg after each 3 days it was at the 40mg of pred that my regime worked . This 5 days has been priceless . But the medical system hates it . I hope to hear from you and KatieB as I believe KatieB and myself here in Aust are patientsof the same Doctors in the same position and pass each other at the medical centre at St Vincents and share similar compexities in health coping etc. and maybe hospital issues which maybe the area of our greatest risk , sure the disease is there and the risk of the medications and catching bugs off people that our body cannot fight , but the system and policies cannot cope with CSS given my last trip on news years day to hospital and emergency dept is the only way in , but the reading those doctors under that dept in stress is not the answer we need a quick brief for them to go to on file contact a Prof and take it from there . I am best off at home and if I die I die , previously I left it to late for the above reasons and I get the riot act read to me ,ie did you know you were within 4 hours of dying and it was only through good luck that you are still here .crazy

[HiveMind in reply to Skipper55]

Don't give up Skipper. It's a very hard road we travel but stay strong. I, myself was ill all through Dec this year gout (twice!) as a result of my diuretics, two bouts of a heavy cold and a kidney infection. I'm only now back to a "stable" condition. I have various issues (I won't bore you with here) that ensure that I never have a completely "normal" day but this is the hand I've been given so, I deal with it. Please don't discount the medical profession as it's (partly) got me where I am today. Good luck & I send you all good wishes for continuing improving health.

[Skipper55]

I treasure your response , thank you berkshirebird , just cannot tell when to hit the too hospital button as 5 weeks ago I had pneumonia on the outside of the lung walls , and it was serious weird thing I had no idea I had it , it's been downhill since with the lungs on fire since chemo and steroids , just cannot pick illness to treatment , beginner problems I guess

[tintinrob]

Hi Skip

when I first had CSS flare up in 2007, i'm not sure what knocked me out the most, the steroids, the chemo or the illness, probably a combination of all three. What I can tell you is that I could barely sit upright as the muscles in my trunk were giving way, even had to have a big cushion on the toilet cistern so I could lean back whilst having a cr#p. Needed my food cut up for me when I got home, too weak to cut it myself and nerve damage in cranial nerves meant I could hardly chew either. Needed two elbow crutches to get around and not v far at first. Chest hurt when trying to walk... felt that my lungs were no longer up to the job. Heart was hurt by it too and heart valves.

Currently Can't feel feet & arms & finger tips due to nerve damage which showed up after the chemo sessions. Brain a bit foggy but that could be the 450 mg Lyrica for pain each day.

Thought I was having a heart attack at one point - rushed to hospital - and this is the bit you might find interesting - found out that lots of steroids can erode the lining of your gut so it hurts just like a heart attack. Just like someone slowly pushing a knife into your chest from your back. Hurt so much couldnt breathe in or breathe out - just taking tiny mini-breaths!

Anyway had to take some pills against this (ranitidine) and been relatively OK since then in that respect. Palpitations quite often - went to the docs with this several times, tested OK on ECG so don't worry now.

Had to get a big terry towelling dressing gown so I could lie down and let it dry me after a shower. Couldnt lift my arms to wash my hair.

I thought 'I've got to fight this' so sent one of the kids out to get a cheap exercise bike. Was a struggle to home asemble it as the allen key felt too heavy! Got on it and turned the pedals about a dozen times and had to go and lie down. Kept at it and managed to walk a bit more each day and turn those pedals a couple of turns more.

When I was up to it I crawled into my camper van seat (VW combi) and oh no the b##### battery was dead as it had been left alone for so long. Got a new battery on it and it fired up so that lifted my spirits. I bought a waist belt - elastic support thing - and that helped me walk a lot better.

Put the dog on the lead and he pulled me over.

Gradually been getting a bit better in some respects and a bit worse in some respects.

Got more strength back but endurance has got to be a tenth of what I was before churg.

Lungs fairly cream-crackered due to pills and infections and were going downhill rapidly till started vit D self treatment..

I finally stopped getting a monthly chest infection after starting to take vitamin d3 at 4000 to 5000 i.u. a day. thats right 4000 not 400. Got a rituximab infusion as well at the end of May / beginning of June this year and I think this is helping me walk further as well. I'm hoping the lung repair will continue with the vit D, reasearch papers say it is possible.

Eat healthily more of the time now, like you - no sugar or vegetable fats / oils and v little wheat. Veg oils and sugars (fructose) are causers of inflammation and modern wheat messes up your gut. Stick to animal fats like our ancestors.

Still improving, I would say - but it has taken since 2007 to get here. Trying to get the steroids down - now down to about 15 mg a day and hoping to reduce further. My breathing is my guide - gets difficult if I drop too quick.

Don't let it get you down is the main thing but not easy in practice!

All the best

Rob.

[Skipper55 in reply to tintinrob]

Tintinrob I hope you can help me use words to explain to my specialist , regarding the chest . I came into hospital a week ago fot the steroid chemo Iv treatment , except they kept finding issues , nerve damage ,potential lung damage , amongst other things , so the neuros lung specialist are in volved , so I have yet to start treatment no 2 ,

What is not bothering me is the wheezing or asthma as they are surface issues , what is and I cannot explain it is the spasms in the lungs and the crushing feeling from the ribs , which for some reason seem to be pressing in on the lungs , then there is the deep coughing attacks that leave the lungs not the throat roar , going onto oxygen through the nose helps and morphine seems to relax the whole lung and chest spasms and crushing combination which wears me out ,

So. Can you shed any light why the ribs either hurt or the pain is coming from the lungs , I thought it maybe reflux or heart but its not that , I just cannot split the two , but boy is it causing me curry , being assessed for nerve damage today , like yesterday being in thevMRI. Tube for an hour my chest like it had 50kg of weight on it either side of the Brest bone .

Can you relate or explain from your extensive experience , it's frustrating not being able to articulate this deliberating side affect from CSS

Thanking you

Mel

[Skipper55 in reply to tintinrob]

Hi tintinrob found the answer to that crushing chest pain , it should come to you via the system but in brief it's inflamation of the walls of the heart I hope it has not gone inside the heart and is treatable CSS at work again ,work in progress regards Skip

[Skipper55]

Thank you very much tintinrob , my feet kidneys balder , nuts, are crook lungs are 8/10 rest is 6 , walking radar out falling over

But your response is very comforting , not many in aust with this , so peddling helps , I also wondered about swimming on the back with flippers and , I will follow through with suggestions , in 2 months I ave gone hill very quickly

[Derek]

Hi Skip, had CSS since 2009. When on Steroids I'm always given meds to protect stomach, Lansoprazole, and It's very important to be prescribed calcium tablets to protect the bones otherwise they deteriorate and cause pain. I also take Lansoprazole now, while on the maintenance drug Mycophenolate. I initially found it hard to use my muscles when first diagnosed and an induced TIA. However, perseverance seems to be the vasculitis mantra and not to give in to it. Like tintinrob normal use of muscles took a dive and

[Skipper55 in reply to Derek]

Hi Derek the docs have found the cause of that chest pain , or at least stage 1 and I hope that's as far as it goes , it's inflamation of the walls of the heart called something like pericarditis , the heart is doing some weird things ie going fast , but missing or not pumping as well , it's part of the CSS , it feels like having a 50 kg boulder on the chest if not more , at least I know what it is now and it can be treated , just hope it has not got into the heart itself ,gee it took some work and a lot of docs to solve it , thank fully they could , hope the info is enlightening for you and others regards

[Skipper55]

Thank you Derek but would the bone issue occur within the first 8 weeks of diagnosis ?

I will get onto the calcium tablets pronto , I am yet to have second treatment as they are working out extent of nerve damage etc clots and so forth , maybe Monday 2ns doses start

[Derek]

I was given calcium tablets as soon as I was on steroids Skipper, which was almost immediately after diagnosis. I'm lucky to have a wife (ex nurse) who understands oncology procedures. Pleased to hear the docs have found the problem for you and hopefully the pains will subside quickly with treatment.

[tintinrob]

Hi Skipper,

yes, the heart pain thing - its a real bast### but it will wear off when your treatment calms down your immune system. I had it too, it was called pericarditis - there's a sort of bag around the heart and this gets inflamed, squeezes the heart a bit and makes life really hard. I knew there was something up with the heart right away - I was lying in the hospital bed doing nothing much and my heart was pounding away like I was running up hill. I told the medics and they said nah its normal, going faster just because you're on lots of steroids! I kept nagging at them and eventually they put me in the mRI machine, injected stuff (gadolinium) in my arm to make all the tubes show up better and this showed the inflammation round the heart as well. It didn't fix it but it makes you feel better knowing what the hell is going on. It took so long to get the MRI appointment it had started sorting itself out anyway.

I would say, at the moment you've got to let the pills and potions get your immune system calmed down (which actually means it gets knocked out) - your body's been working overtime creating too many eosinophils and instead of going round bumping off viruses and any threadworms, guinea worms etc, which is what they are supposed to go after, these little bug-fighters go nuking everything else, especially the blood vessels - in your lungs, the heart, the bowel, the ones feeding your muscles, your nerves. It's like the copper thieves have been in and ripped out the wiring and plumbing. No wonder you fell knackered with this illness. Your chemo treatment will shut down the cells being rapidly manufactured e.g. the eosinophils. Steroids work in the same sort of way, but the chemo is like 'bring out the big guns'.

That's why it also works with cancer, another rapidly growing bunch of cells. Except to bump off the cancer they give the patient loads of the stuff, and their hair can fall out etc. It made me feel crap the next day after the treatment, they told me to drink lots to flush it out of my body, trouble was I couldn't pee as soon as it got in my bloodstream - took 15 hours for the kidneys to restart refilling the bladder. Don't know why, what I do know is I felt like I was going to be the magic exploding man. Kindly nurse offered to put a catheter up my jacksie to let the pee out but it didn't work as the bladder was empty. Still, 'not every day' etc...

Regarding your walking radar being out of action. If you've got nerve damage in your feet and lower legs, this is what happens. I used to think you did all your balancing with your inner-ear kit but the physio who got me walking again told me that you do most of it with your feet and legs ( a bit like positional sensing), so when they go crook, you have to rely on the ear stuff more as well as (for me anyway), especially the eyes. If the lights go out I fall over, simple! It's also tiring, you don't realise how much extra work your eyes have to do, if i stay upright too long I start getting woozy and feeling cross-eyed. Just have to lie down and let my brain and eyes reset themselves, then I'm OK again. Just have to recognise that there are new limits and people may think I've been on the beer when I haven't.

Do as much as you can but don't burn yourself out would be my advice. If you do too much to start with you'll set yourself back a couple of days. Do a bit of swimming on your back with the flippers if that's comfortable, BUT perhaps stop BEFORE you feel tired. It's not like being an athlete where the more you push yourself the fitter you get, you may well get the opposite effect. But keep working at it and you'll get there, everybody is different, what's taken me 6 years may take you just a couple.

Re calcium: steroids mess up the balance of bone creation vs bone destruction, so you can weaken your bones after a long time on high doses. They prescribe Vitamin d3 and calcium here to give your bones a fighting chance, so keep taking it. My doc told me to stop taking alendronic acid though, it used to be given to make my bones 'stronger' but turns out it was making peoples bones more brittle. Denser, yes, but brittle. i.e. oldies falling over and snapping a hip (femur). Like a steel file snapping I suppose. He told me to get my teeth checked too as alendronic acid can cause probs there too, like the bones.

I think my illness is thinking about flaring up again at the moment, I get a roaring noise in my ears when this happens, like sound of leaking compressed air if you know what I mean, so I've cranked up my steroid intake while I wait for blood tests. Will keep you informed - I've had this Rituximab treatment which is supposed to be done every 6 months, maybe it's run out early.

Hope your treatment goes well and gets you on an even keel again, Skipper! All the best. Keep talking about it through this website, you're definitely not alone with this. The Rituximab is good for most people with Churg Strauss if you can get it where you are.

Rob.

[Skipper55]

Thanks for all that , the hearts specialists have me really confused at the moment , the lung and auto immune docs I can follow , I am in hospital at the moment have been for 7 weeks , the heart guys keep at this andgine tablet under the tongue , totally useless and throbbing head ache , have to follow up this rituximab and calcium and that 4000 dose age , will talk to auto immune doc tomorrow when I start treatment , again thanks for all your advice , my resilience is low at the moment , I have been through every medical machine known to man