CHURG STRAUSS SYNDROME

 A  RARE AND BAFFLING ILLNESS – CHURG STRAUSS SYNDROME!

Being encouraged to exercise by a sweet little freind

Being encouraged to exercise during my recuperation  by a sweet little friend!

 

This is the first time I have written a blog about the very rare auto-immune condition I was diagnosed  with  in January 2012.  I had been rushed to hospital a couple of weeks earlier with a suspected heart attack.  It was all a  huge shock, especially as I  had just signed the contract for my first book.

Churg Strauss Syndrome (CSS)  is a form of vasculitis  (inflammation of the blood vessels) . It was first described by  Jacob Churg and Lotte Strauss  at  New York’s Mount Sinai Hospital, in 1951.  Coincidently, this was  the year I was born.  Recently the more medically descriptive (but  impossible to pronounce  or remember)   name of  eosinophillic  granulomatosis with polyangitis (EGPA) has been preferred, though certainly not by me!  The disease in not contagious , nor is it inherited.  It is extremely hard to diagnose, and variable in both presentation and progression.  I like to call it Pandora’s Box. because so many nasty things can emerge!  However,  there are generally  three stages. The first involves  adult-onset asthma and allergic rhinitis.  Repeated surgery to remove nasal polyps is  common. Many of us lose our sense of small and taste, which I have written about HERE.

In the  second stage, white blood cells called eosinophils  become elevated and  can cause  insidious damage to organs such as the lungs and digestive system.  Despite having smoked for many years in my foolish youth, my lungs somehow  escaped unscathed.

The third and most serious stage  leads to neuropathy  (nerve damage)  and  full-on vasculitis.  If the  heart and brain are affected, as in my case,   the condition can  be  life-threatening. Several months after  my original stay in  hospital I was readmitted for surgery to remove fluid  from around my heart.  A permanent ‘window’ was created in the surrounding  sac  in case the problem should  re0ccur.  It was quite  a setback, but I recovered well.

 

Recovering after surgery, April 2012

Recovering after heart  surgery, April 2012

Spending time in my Blue Mountains garden was very therapeutic. Nothing lifts a battered heart as much as the tinkling  chorus  of fairy wrens, or the hearty laugh of a kookaburra.

IT TOOK A WHILE FOR MY ADDLED BRAIN TO RECOVER!

IT TOOK A WHILE FOR MY ADDLED BRAIN TO RECOVER!

 

At this point,  there is no cure for CSS.   Worse still, the medications  used to control it and to achieve remission  include  steroids and  powerful  immunosuppressants. Both drugs  have severe side-effects.  Prolonged steroid use leads to puffiness of the face , weight gain and loss of bone density .  Immunosuppressants leave the body vulnerable to infections and cause hair loss. Changes to body image are difficult to cope with , especially when  insensitive remarks are made.   Naturally  the great hope among medical experts and patients is that a cure will be found, or that less toxic drugs will be developed.  Happily, there  ARE  new treatments on the horizon.

The following picture was taken as a publicity shot for my publishers mid 2012. Looking at it now, I can see that  my face was  already  filling out due to steroid use.  One of the great challenges for  patients  with CSS is to slowly  decrease the amount  required without causing a flare.

The effects of steroid use.

Puffiness of the face is a side-affect of steroid use.

Against the odds, I was  not only well enough to  travel to the UK for the launch of The Water Doctor’s Daughters in March 2013, but to return for the launch of my second book in August the same year.

Sydney Launch of The Water Doctor's Daughter, July 2013.s

Sydney Launch of The Water Doctor’s Daughter, July 2013.

 

I consider myself  extremely  fortunate.  Like many patients, I was already in stage  three  at diagnosis, but  most of the damage that had occurred was  reversed.  After 18 months of treatment I achieved  full remission and  am now off  all  CSS medication.   I am  still  more easily fatigued and  have   some residual  numbness in my feet,  but otherwise I feel perfectly  well.    I am one of very  few people who manage to reach this stage.  Of course, there is no guarantee that I will not have a ‘flare’.   However, my specialist  tells me that if this occurs it is likely to be less severe, and therefore reaching remission should be easier.

I belong to  a wonderful CSS support group called Churg Strauss Friends. The group   currently has over 500 members world-wide. We have  chosen to speak out  about our condition in an effort to raise awareness of what is  a  debilitating and  still sometimes fatal   disease.  Increased awareness will lead to greater research  and perhaps to the miracle of a cure. Legend has it that when the beautiful Pandora so unwisely opened that box she released all the evils of the world. However, for sufferers of Churg Strauss Syndrome and every other incurable condition, there is something worth remembering.  When she finally forced the lid  shut, Pandora captured something hiding at the very bottom … the spirit of HOPE.

The impetus for our  PR blitz  was the death of one of our members, who died six months after diagnosis, aged just  44.   RIP  Kevin.

If you or someone you know has been diagnosed with this condition, please feel free to contact me via this site, or on my email address at paulineconolly@gmail.com

UPDATE – JUNE 5 2015   I have now been free of medications and in full remission for 18 months.

Please share this story to increase awareness.  Comments would be most welcome.  Just type them in the box below then scroll down and complete the anti-spam sum before pressing ‘SUBMIT’

 

 

89 Comments
  1. Pauline, I am so sorry. I suffer from very painful disk degeneration in my back and neck for which I am treated weekly so I understand at least part of what you are going though. However, it is not life threatening, and I admire your spirit and courage in the face of all you have been through.

    Smiles and blessings, Nancy

    • Pauline

      Thank you so much Nancy. I am fine right now, but many of my friends are not. I know you have serious health issues yourself. My heart goes out to you as back and neck pain are so horrible. xx

  2. Hi I was diagnosed with CSS 2 years ago I had for 5 years been going through allergies , pneumonia, rhinitis polyps , oesinophiles was very high had been told I had asthma which I still don’t believe I have just because I never had it, amongst other illness and taking antibiotics, antihistamines and nothing was really helping, CSS was only diagnosed as I coughed up blood which was very scary I was put on high dose of steroids for a few months and was reduced over a period of time im now taking 5mg steroids and hope to be reduced again in next few months and hate what they do to the body but im still alive .

    • Pauline

      Hello Tracy
      Thank you very much for sharing your story, although I am so sorry that you are battling with CSS. I do hope you will be able to get off those horrible steroids. I’m sure your specialist has advised you to taper VERY slowly…in my opinion that is the key!!Please let me know if you would like to join our support group. Meanwhile, best wishes for the future.

  3. Yes Pauline, you carry CSS with such courage and dignity and it is marevellous that you are spreading information about this serious and little known disease. I think statistics say sufferers are one in a hundred thousand. I wonder if CSS is evenly distributed throughout the world, or are there clusters.x

    • Pauline

      Thanks Annabelle. There do not appear to be clusters of CSS and certainly our support group includes members from around the world. It also tends to affect men and women in equal numbers. By the time people are diagnosed they are often middle aged, but sadly there are even young children with the condition. For young people there is often the problem of having to be on harsh medication for many years.

  4. Thank you for a wonderful description of this dreadful disease. My daughter was diagnosed with CCS three years ago and experienced much the same symptoms that you wrote about. It is imperative for more to be know about this disease. Thank you again for your article.

    • Pauline

      Earleen, I am really sad to hear that your daughter suffers from CSS. I do hope she is in remission. If you or your daughter would like to join our friendly support group, please let me know.

  5. Thank you so much for sharing information on this little known disease. Hope you find relief in some system of medicine. Homeopathy can treat certain ailments almost like magic at times. It goes by the symptoms rather than the causation. India can offer some rather quaint and miraculous cures. Though one should come here for treatment only if none is available at home and if one can brave through the heat and the dust.

    • Pauline

      Thank you for taking the trouble to leave a message Lakshmi, I really appreciate it.

  6. Intolerance is the poison of human society. People need to consider what they don’t know before passing judgement. You are one of the most sweetest people I know, puffy face and all. 🙂 I promise to remember the birth of Churg Strauss Awareness day, it’s exactly 36 years younger than I am! 🙂 Love to you, and sending positive energy to all who live with this disease both directly and indirectly. Hugs and love, Miss Marple.

    • Pauline

      Sweet Sarah, HAPPY BIRTHDAY!!xx You are right, self image is a huge issue for people on steroids to cope with, no matter what medical condition they have. CSS is a ‘hidden’ disease, which is why people can make cruel and insensitive comments. Having a chronic condition is also very difficult. Although I am now quite well, many of my fellow sufferers remain in bad health for years, either from the disease itself or from the affects of medication. It can be very frustrating for friends and family when a loved one simply does not get better.

  7. Thank you for your story. My daughter is 35 and has systemic vasculitis with peripheral nerve damage. It is about time that this disease was investigated and new therapies found. I am so afraid that I will lose my daughter before one is found.

    • Pauline

      Oh Maureen, it is the young people like your daughter that upset me so much. Steroids have saved lots of lives, but the collateral damage is so severe. Please give your daughter my best wishes. There are such wonderful advances in medicine these days, and brilliant minds are trying to find replacement therapies. As I have mentioned to others, please let me know if you and/or your daughter would like to join our Face Book support group. It is a closed group, where information can be shared and problems discussed in a safe environment.

  8. Pauline, you are an amazingly strong lady. Truthfully, I thought perhaps cancer was holding you, and I didn’t feel I should invade your privacy to confirm. I’ve lost so many people to cancer, it is my first thought in times of illness my friends/family experience. I admire your decision to inform others of a condition I have never heard of, and highly doubt many have either. I am so sorry you are having to deal with this decease, and of your recent loss a such a young member of your group.
    I am so glad you have Dr. Bob and Des to take care of you, and the doctors of course, but it is through the loves of our lives that healing is so evident. I’m so glad you are doing well now, as I’ve surely grown to enjoy our “cyber” friendship.
    I truly hope you have continued success with your remission and I will share your story and stand with you in an attempt to make others aware.
    Continued good health my dear friend,
    CJ

    • Pauline

      Well it takes a lot to make a tough old farmer’s daughter like me tear up C.J., but you have managed to do it! Thank you so much for your friendship and support, and especially for being willing to share my post. More awareness means more pressure for research into auto-immune illnesses.xx Yes, I am truly lucky with my partner as I know you are too. Oh yes,and the whimsy of young Des has also been a big factor in my emotional health. xx

  9. Thank you Pauline for sharing your story! My mom was diagnosed with CSS last year. She’s doing well thanks to her meds. I have proudly shared your link on my Facebook to help bring awareness to CSS.

    • Pauline

      Hi Kristen, thank you so much for sharing this on FB. So far our PR blitz has been absolutely amazing. Please give my best wishes to your mother, She is very lucky to have you to support her. Let me know if she (or you) would like to join our support group.

  10. Pauline, hang in there , I was diagnosed with CSS 2004, after suffering from years of allergies, sinus infections and polyp removal , late onset asthma, and several vascullitus attacks on my legs leaving nerve damage to feet. Since 2006, it’s under control with imuran and 1mg daily of prednisone . I exercise regularly and ensure I keep asthma under control and quickly attend to any respiratory bug, so it doesn’t trigger allergy attacks. Keep the faith. , stay well, all the best

    • Pauline

      Thanks Steve…your story sounds so similar to my own. Delighted to hear that you are well controlled on minimal meds.

  11. Hello- Thanks for sharing your story. It’s so funny reading the blog how similar all the stories are. Here is the link to my story: http://wp.me/p26GBe-3
    My twitter handle is @tinabrown
    Did Kevin pass recently?

    • Pauline

      Thanks for your message Tina. I have left a comment on your own blog. Yes, Kevin died on June 22.

  12. In my case it was diagnosed after a skin breakout all over my head and hands. I looked like I had taken a real beating. I had gone through the sinus surgery and asthma route before getting to that point. Last year I bloated up by over 60 pounds of water weight for some reason and spent some hospital time until they got about 20 pounds of it off. The new twist involves granulomas on the underside of my eyelids. I feel well otherwise, but they threw all of us, doctors included, for a loop. Evidently I am one of fewer than 10 people who have had this happen (lucky me). Now we are dealing wth insurance issues about authorizing the meds the doctors want touse because the is not much literature about the situation. Obviously it is frustrating, but we will keep at it.
    I know I have been very fortunate so far, and I am thankful for all the great help UNMC has provided. It is also a big help to know there are others who can identify with this.

    • Pauline

      Hi Mark
      Thanks so much for sharing your journey with CSS. I call it Pandora’s Box, which your story illustrates all too well! I hope the issue with your eyes gets sorted quickly. Weight gain is such a problem, isn’t it? Especially if you don’t even know what caused the fluid retention. You would be more than welcome to join our support group. Just let me know if you are interested. My sincerest good wishes to you.

  13. Hi Paulie, sorry to hear about this condition, but I am very pleased that you are able to keep it at bay for now at least. I hope that research into Churg-strauss-syndrome, will find a cure, I realize that it may not help you but will hopefully make a difference for those who contact it earlier in life. I am pleased that you have found others who share your experiences and understand when you are having a tough time. My thoughts and prayers are with you. Thank you for sharing this, love Margie xx

    • Pauline

      H Margie, yes I feel so much for the young ones, and those trying to look after children and hold down jobs etc. Even if there were better medications it would be fantastic. Thanks for your good wishes. My love to you and Art. Paulie xx

  14. Hi Pauline, my Dad has had Polyarteritis nodosa for 4 years now, since official diagnosis. It was very very scary for us all before his diagnosis, he lost so much weight and no-one seemed to know why he was so fatigued, fatigue as a word surely does not describe the feeling he had and still has. I just wondered if your facebook page mentions Polyarteritis Nodosa at all? I have read in some places that the disease can last 3-5 years and i wondered how true this was. I really hope it is true. He is being reduced off his steriods now but only because one of the toxic drugs he is on does their job anyway.

    • Pauline

      Hello Sam, apologies for not responding sooner. Your dad’s condition sounds extremely similar to Churg Strauss. I Googled it and saw that the medications are the same and that it is another autoimmune disease of the vascular system.I will ask if anyone in our group has any knowledge of it. I’m so glad you father has been able to reduce his steroids.

  15. Bless you Pauline! I was just diagnosed as well with CSS. I am still recovering from eosinophholic pneumonia and reeling about CSS. I hope you’re still doing well. This sure is a nice post you shared. Baffling and cruel disease this CSS.

    KINDEST Regards,
    Dawn

    • Hello Dawn

      Thanks for your message. Believe me, I understand how scared you must be feeling. Once the medications kick in you will feel a whole lot better. I just hope you are able to achieve remission soon and that you will have a good long term outcome. If you google Churg Strauss Syndrome you will find several support groups who will be able to answer any queries you might have. Warmest wishes, Pauline

  16. Hi there

    I have CSS, diagnosed last year after a long period of unwellness. Collapsed twice at work and eventually diagnosed in August 2013. Currently well(ish) on 5mg of pred (slow reduction from 60mg) and immunosuppression following a course of chemotherapy. For the last month I have felt BRILLIANT. The last few days I have increasing tiredness and asthma is worsening. Am aware that it is probably the change of seasons contributing to this. I wondered if you could send me the link to your FB support group? I don’t know anyone else with the condition and family etc get a bit bored/frustrated with the exhaustion I think. Be nice to ‘chat’ to folk who appreciate/understand!

    Stay well, go gently.

    Zoe

    • Pauline

      Hello Zoe
      So sorry you are dealing with this nasty condition, I hope you are right and that it is just seasonal issues affecting you. There are two big support groups…one is an open group called Churg Strauss Association which you can google and join. The other is a private, or ‘closed’ group with nearly 500 members. It’s called Churg Strauss Friends and our lovely administrator Libby will accept you. It might be easiest if you send me a friend request on FB so I can explain.It is a wonderful group and you can express yourself to people who understand exactly what you are going through.

  17. Hi Pauline,

    I was diagnosed with CSS at the end of Nov 2013, after a year’s visits to my GP, with all the attendant antibiotics, antihistamines, cortisone, colonoscopy, endoscopy etc, etc. The final straw was when I had urine retention, and was told it was all in my mind.
    Fortunately I had a specialist friend who referred me to a General Physician, who made a diagnosis on my first visit (confirmed by blood tests) and started me on the right medication.
    I came off prednisolone in June this year, so am on minimal drugs, though I monitor my condition continually, and only have an appointment with my physician in January.
    One of the weirdest symptoms was a “broken thermostat”. Winter or summer, my temperature would fluctuate between 32.4C to 40C, sometimes within an hour, and without any change of environment or clothing.
    I wonder if anyone else has had this symptom, and if so, is it common?
    I would very much like to join your group.
    Incidentally, my physician claims that adult onset asthma is always a symptom of an underlying serious condition, not a matter to be treated in isolation.

    • Pauline

      Hi Celeste
      Have sent you an email, and a link to the administrator of the FB group.

    • I was diagnosed in 2006 after the typical 6 years of misdiagnosis. I have the broken thermostat as well. You don’t say your age, but I was diagnosed when I was 45′ which is very typical. Because they had badly misdiagnosed me I landed in the ICU with a pneumonia, a collapsed lung and severe neuropathy. I was very sick and they hit me with the equivalent of 1000mg of prednisone and very hard core chemotherapy, cytoxin. It caused immediate menopause, a total shut down of my hormonal system. I was a professional athlete when this happened.

      I’ve been controlling CCS for years and I’ve noticed that if I’m on more prednisone my internal thermostat gets more messed up. I think it may have to do with the cessation of normal hormonal function as well. If I could do it over I never would have done the cytoxin. The medical literature is very divided. I was first treated at National Jewish,supposedly the finest respiratory hospital in the nation. Their treatments were very extreme. I felt they only saw my disease. When I went from 145lb to 200lb in six months which ruined my athletic career they didn’t see the problem. I found a great specialist at Mayo and fired all my other specialists. I see a great DO monthly and we are very careful with diet and supplementing glandular health. I use prednisone and methotrexate as I’ve never gotten my CCS into remission, but I still travel, train high level horses and generally have a life. I use lots of alternative treatments, acupuncture, Rolfing and massage.

      I have to be very careful of emotional triggers. It just makes the journey a bit more complex! Good luck with your thermostat!

  18. Was your book, The Water-Doctor’s Daughters, born from the
    research you did into integrative therapies, such as homeopathy,
    for your condition then?

    I have just scampered across your website this evening. Look
    forward to reading your book; right up my alley as a CAM practitioner.

    • Pauline

      Thanks for your message Delinquent Angel. No, when I wrote the WDD I was completely unaware that I was suffering from CSS. I will be most interested in what you think of the book…which is now available as an ebook. As you will discover, Dr Marsden in the Water Doctor’s Daughters was not a positive advocate for homeopathy!

  19. Hi Pauline,
    I also have CSS. I have had it for 15 years now.
    Like you, I also feel lucky when time passes by. If you think you could have died 15 years ago, you are definitely very lucky now. I have had three synus and nasal polyps operations. Now I am on 7.5mg steroids everyday, but I learned to cope with it and to live happily despite that.
    Your description of CSS has made me feel as you do. You don’t now what would be in the future, you must think and live in the present.
    Pray for you all, CSS sufferers. We are just a bunch of people. That loneliness harms a bit.
    But we must go on.
    Thanks for sharing.
    Ana (Spain)

    • Pauline

      Hello Ana. thanks so much for your message. I hope you manage to stop the steroids one day, but at least they are keeping you stable. Remember you can join our International Facebook support group if you would like to. It is a private group where we share concerns and learn from each other. Send me a friend request if you are on Facebook. My very best wishes to you. xx

  20. I was diagnosed with CSS in 1996 at the age of 24. I am no longer on any medications for CSS. I am still on sinus and asthma medications. I have been in remission for quite a few years. I had an episode last year that the doctors said was a TIA but they were unsure if it was CSS related. I had all of the symptoms you listed in your article. It is nice to know that i am not alone. I feel I have beat this disease even though there is no cure. I feel a positive attitude has a lot to do with me beating this disease. I live everyday to the fullest and never sweat the small stuff. Life is too short for that. I travel a lot because I want to see all I can of this world and have not regrets when I become too ill to travel. Thanks for writing this. It is written in a way that no matter who reads it will understand what this disease it. Thanks…..

    • Pauline

      Hello Heather, my word…that is young to be diagnosed. I agree with you about a positive attitude. nothing was going to stop me travelling to the UK for my book launches! Wonderful that you too are off CSS medications. Hope you continue to do well.

  21. Paulie: Thank you for putting into words your journey with this rare disease. I was diagnosed with CSS in October 2013, a few months before turning 50 years old. After weeks of dealing with cough and congestion that would not go away, I was referred to a pulmonologist only to receive no answers. Every doctor asked if I had ever been diagnosed with asthma, but was shocked when I said no. The next symptoms were skin rashes/hives that would turn into bruises on my torso and nodules that developed at the base of my nostrils and on my chin. Thankfully, a referral to the dermatologist lead to the biopsy that gave the answers to what had been wrong for all those months. I was quickly referred to a rheumatologist. I must admit he gave me reason to worry when he told me in his 30 years of practice, I was his first Churg Strauss patient. I am happy to report that the steroid treatment, which started with 60MG is now tapered to 5MG, has worked. Yes, the Moon Pie Face and weight gain has been the most challenging part of treatment plan. I had a friend tell me she knew something was wrong because my face changed so much I was almost unrecognizable. However, my husband told me that he loved my Moon Pie face and being able to still see me is all that mattered to him. We know that there maybe flares to come and we will face those obstacles as they come.

    • Pauline

      Hello Laurie, was quite moved that you called me (probably by accident) Paulie, as that is what all my family call me and I have a brother Laurie! I developed mild, allergy based asthma in my 30’s and had nasal polyp surgery. The disease remained in my system for many years until I collapsed aged 61 with a suspected heart attack. as I mentioned, it was in my brain by then and I was very confused. Yes, the cosmetic changes with prednisone are dreadful, although it did iron out some of my wrinkles! Every good wish to you in the future. xx

  22. Hi Pauline,
    My son in law is battling css and has been for 3 years. He was also diagnosed in stage 3, we almost lost him that night cos the doctors just couldn’t work out what was wrong. Since then they have tried everything they can think of but they get so far n then he’ll have a flair, end up in hospital. George is only just 27, n still not in remission. He has two beautiful children and my daughter and it’s them that keep him fighting. I know he’s tired of it all and depressed with the changes to his body from the medication,but I have to say he’s my hero and my daughter such an amazing person. I want to wish u well Pauline and hope u stay in remission. If i had a wish it would b for George to b told he’s got there but I’m afraid it looks less likely as time goes by.

    • Pauline

      Hello Donna, my heart goes out to George, and to your whole family. Like many medical conditions it seems to affect the young even more seriously. So unfair when oldies like me have already had a good life. If he can hang in there I feel sure that better drugs are coming! Has George read the book on Churg Strauss by Ben Watt called The True Story of a Rare Illness? He is a pop singer who was diagnosed when he was 29, back in 1992. I think George would find it inspirational. My sincere good wishes to you all.

  23. Thanks you so much for raising awareness of CSS. Our son is only 17 and struggling with this disease for quite a few years already. The medications are awful with no end in sight. I pray someday they find a cure. In the meantime we fight on.

    • Pauline

      Hi Pam, I hope you read my response to Donna. It’s a tragedy that prednisone is so effective and yet so toxic. A cure would be miraculous, but even better treatment would have a huge and beneficial impact on lives. Joe should read Ben Watt’s book too. Warmest wishes to you and please tell Joe to hang in there.

  24. Marshall Protocol is healing my Diffuse Scleroderma.

    • Pauline

      Hi Elizabeth,I don’t know much Scleroderma, but will look it up. So pleased you are doing well.

  25. Pauline,
    Thanks for sharing your story.
    For those interested there are various sites that have information about CSS specifically of which are:
    CSS Association
    http://www.cssassociation.org/

    Mayo Clinic
    http://www.mayoclinic.org/diseases-conditions/churg-strauss-syndrome/basics/definition/con-20028895

    and Vasculitis
    Vascultis Foundation (US)
    http://www.vasculitisfoundation.org/

    Vascultis Foundation (UK)
    http://www.vasculitis.org.uk/

    Lauren Currie Twilight Foundation
    http://www.thelaurencurrietwilightfoundation.org/

    There are 1/2,000,000 people diagnosed with CSS annually.

  26. Pauline, thank you for posting your story! I have Wegener’s Granulomatosis … pretty much a first cousin to CSS. Several of us have created a Vaasculitis Patient Advocacy Network and we would love to have permission to share your story or perhaps link to your website. Let me know what you think!

    Sue

    • Pauline

      Hi Sue, both would be wonderful. My website is now being archived regularly by the National Library of Australia so has good exposure. Hope you are coping well with Wegeners.

  27. I was diagnosed eight years ago with brain vasculitis after having several strokes that left me with left side paralysis I had brain surgery for tumors that ended up to be vasculitis. Long story short I’m told I will be on prednisone, Imuran,and twelve other prescriptions for the rest of my life, but I’m here thankyou God and for some amazing specialists. I work one day a week but am on disability for the rest of my life. I have a wonderful husband and children that were wonderful . I am grateful for family,friends, and life.I have put on several lbs due to meds but I have managed to take some off and am feeling better about myself. But the hard part is that every day I worry is this the day that I have a stroke again and have to start fighting for my life again? I wonder if any one has the same feeling. There used to be a support group but I think they broke up.

    • Pauline

      My work, what a lot you have dealt with. So pleased you have the support of a loving family. I don’t think I would be here without my darling husband. His nickname is Dr Bob because he looks after me so well. I understand your fear of another stroke. Every time I feel some ache or pain a little spasm of fear shoots through me in case it’s a flare. There is definitely a vasculitis support group, in fact I have just joined myself. Here is the link. https://www.facebook.com/groups/vasculitisfoundation/ Hopefully we will meet up there. xx

  28. Hi Pauline

    Thanks for sharing your story, my young son (17 months) has recently been diagnosed with Polyarteritis nodosa, another form of vasculitis and we are currently undergoing the same treatment of steroids and immunosuppressants. We are slowly trying to connect with others experiencing similar conditions as it would be nice to have some support, we are in Australia. I saw you made mention of the vasculitis foundation on facebook and wanted to know if you could invite me to join the group as it appears closed? Thank you x

    • Pauline

      Hello Cate
      My heart goes out to you and your little one. You don’t need to be invited into the FB Vasculitis foundation group. Just click on it and your application will automatically be registered.The administrator will contact you. Let me know if you have any problem. hope to see you on there. Pauline. xx Also, feel free to send me a FB friend request.

      • Thanks for getting in touch Pauline x I will give that a go 🙂

  29. Thank you for sharing your story Pauline. How did your Drs. determine/diagnose your brain involvement of Churg-Strauss?
    I have Wegner’s/GPA, but still a slight possible of Churg Strauss. ( my biopsy had various size blood vessels involved).
    My primary lesion that was biopsied was located in my upper palate and I also have sinus involment and other oral areas.
    I’m personally concerned that my impaired memory and other mood issues could be more than just stress and prednisone use and chemo brain.

    Thank you,
    Cheryl Alberternst

    • Pauline

      Hello Cheryl
      Well, my husband noticed I wasn’t really responding properly when we were editing my book. Also, I had experienced strange little ‘absences’ and dizzy spells during the previous few years which I stupidly ignored. when I was in hospital after collapsing in January 2012 they gave me MRI on my brain which showed showers of spots….this was the vasculitis attacking it. Sinus issues are certainly connected with CSS, but as you know diagnosis ca be a real problem. Good luck, and do let me know how you get on. Pauline xx

  30. Glad someone has written about this terrifing illness We keep going as if nothing is wrong ??? only seven when started thought best to keep a positive attitude towards future not always easy when you feel as if the sword of damocles over one’s head ! Hope to all never give up ,appreciate every moment.Thanks for writting this article feel less alone. wilma mckinlay france

    • Pauline

      Hello Wilma
      Thanks for your kind comment, but I am surprised and saddened to hear that you have been suffering from such a young age. Don’t forget you are very welcome to join our support group. Just let me know if you would like to.
      Warmest wishes, Pauline xx

  31. Thank You Pauline and so pleased you are doing well. Food for thought I have had several sinus surgeries and am currently having some treatment for nerve pain. Perhaps I should mention it to the Dr.
    I hope your health continues to stay on the up and up.
    Hugs Jen

    • Pauline

      Wow Jen, how odd. You would have to be VERY unlucky to have CSS but sadly, anything is possible. One of the main symptoms is adult-onset asthma/allergies. The first test they do is for a high count of white blood cells…eosinophils. Thanks for your wishes and hope you will be OK. xx

  32. Hi Pauline. I enjoyed reading your story. Sometimes I wish I could sit down and write a short summary of what it is that affects my life. I’m 42 and just not the same person I used to be. Friends will ask me to explain and it’s like I get tongue-tied. I just don’t know how to explain it and even if I did I doubt they left their home to go to the local Wal-Mart to stand and listen to someone talk about all their unfortunate issues.

    • Pauline

      Hello Becky, I’m so sorry you are dealing with CSS. And yes, these ‘hidden’ and chronic illnesses are hard to explain. Often friends and family think we should get better when many people just don’t. You can always write a post for this site telling your story if you would like to. And remember, you are more than welcome to join our support group Churg Strauss Friends. Are you on FaceBook? If so, send me a friend request.

  33. Pauline,
    Thank you for sharing your story.It took my physicians over a year to diagnose me and I have lifetime affects I.e. numbness and tingling in my right foot. I have had several episodes of breathing problems but I also have asthma. What frustrates me, maybe being in the medical field doesn’t help but I have been having increase issues with breathing and when they first started doing all the testing on me they noticed 2 small nodules, one on each lung, what makes me mad is the fact these nodules could grow once they stop my predisone which they have been having problems doing so due to my breathing. I guess I am getting frustrated and more depress because I feel they are not listening to my concerns mainly because when they did a repeat CT scan a month after being on predisone the nodules disappeared. Well duh, the predisone made it settle down. I guess I was wondering what to do because I don’t want to rock the boat but I surely don’t want to be on predisone for the rest of my life. Thanks for listening.

    • Pauline

      Hi Jill, I have permanent numbness in both feet too, no more fancy shoes for me! Were you on chemo to begin with? Being on prednisone is the biggest problem as it does so much long term damage. If you email me at paulineconolly@gmail.com I could introduce you to our CSS support group. There are many people on the site with lung problems who may have advice for you. I know this condition is very hard to deal with but try not to get too depressed. I feel sure better treatment is coming soon. xx

  34. I am so sorry for what you went through and for the loss of your friend. You are a remarkably strong individual. I have a lot of respect for you and I’m glad you’re better. Nobody should have to live through that. Praying they find a cure.

  35. Thank you Pauline for writing this article! I was diagnosed with CSS in January 2015. I am 31, and luckily my Rheumatologist caught it in the early stages.

    Life on Prednisone and the chemotherapy drug is a challenge but I’m adapting.

    Thank you so much for your post, it provides hope.

    • Pauline

      Hi Alex, Oh dear, you are very young to have CSS, but maybe that will help your body cope.
      Thank goodness it was caught early…makes such a difference. I do hope you reach full remission soon.
      Please let me know how you get on. Remember you are very welcome to join our CSS support group.
      Warm wishes and thanks for taking the trouble to leave a message…Pauline

  36. Hi Pauline thanks so very much for your story in the life of CSS. I was diagnosed in December 2012, and by that time I was already in the 3rd stage. I was 46 at the time and had my job of 17 yrs, that I had worked very hard to achieve, being in Management with UPS in Atlanta,GA.This disease has attacked my heart, kidneys,lungs,joints and even my eyes. I had became no longer able to breathe without the use of an oxygen machine 24/7. Having being placed on Hospice, also being given only 6 months to live, which was very devastating for not only me, but my mother and family.Yes and I’m still here.Thank God for his Mercy and for my Strong Praying Family. I just wanted to share my story for the first time, and helping to increase awareness of this incurable disease. Thanks for the encouragement.

    • Pauline

      Hello Pamela, I’m so sorry to hear what a dreadful time you have had with CSS. It is such a mysterious illness and can cause havoc with our bodies. I admire your courage and am so pleased you have the support of your loving family. We desperately need better and less toxic medications.

  37. HI PAULINE, JUST WANTED TO SAY THANKS FOR YOUR WEBSITE. I HAVE BEEN READING IT FOR A SHORT TIME NOW. AFTER A LONG FEW YEARS OF MANY CRAZY AILMENTS + SICKNESS’S , I SUFFERED A SERIES OF STROKES THIS PAST FEBRUARY. DURING THE NEXT THREE MONTHS, I HAD UNDERGONE EVERY POSSIBLE TEST KNOWN TO MAN TRYING TO FIGURE OUT THE REASONS WHY. FINALLY TOWARDS THE END OF MAY I WAS DIAGNOSED WITH CSS. I FIND MY SELF VERY LUCKY THOUGH , A YOUNG DOCTOR TOOK A CHANCE BACK IN FEBRUARY AND STARTED ME ON HEAVY DOSES OF PREDNISONE. I AM PRETTY SURE SHE HAS SAVED MY LIFE. CURRENTLY , I AM TAKING 200 MG OF C-TOXIN PER DAY AND BEING WEEDED OF THE PREDNISONE. I HAVE ALMOST COMPLETELY RECOVERED FROM THE STROKE, BUT NOT FROM THE AFFECTS OF THE STEROIDS. THEY HAVE LEFT SOME DAMAGES TO MY BODY. I CONTINUE MY THERAPY DAILY AND KEEP A VERY POSITIVE ATTITUDE. MY HEART GOES OUT TO ANYONE OR ANYONES LOVE ONE WHO HAS THIS HORRIBLE SICKNESS. ONCE AGAIN THANK YOU FOR YOU SITE. I KIND OF THOUGHT I WAS ALONE WITH THIS. CHARLIE C. 48 YEARS OLD

    • Pauline

      Hi Charles,I’m really sorry to hear you have been diagnosed with CSS, but at least you were finally able to start the right treatment. I was on Cytoxin and Prednisone for about 18 months. The steroids are miracle drugs, but also very nasty…I so hope they will develop an alternative soon. It sounds as though you have been through a lot, so I really admire your positive outlook and hope things continue to improve. Don’t forget there are support groups on Facebook. Warm wishes, Pauline.

  38. Hai pauline.i am diagnosed with CSS in 2007 when i was 23.I went through all the symptoms which you have mentioned. Its been nearly 8 years now i am on steroids but no symptoms of improvement. I am trying homeopathy since 6 months from an Indian doctor which kept me away from steroids. But now since 15days i can see the symptoms flaring up.my doctor days its common to have flares while under treatment. I wish what he says comes true and i can be avoided of taking steroids.

    • Pauline

      Hello Anitha. Sorry to hear you have been battling with CSS for so long, and at such a young age. I really don’t think homeopathy can help with this complicated disease. I urge you to get another opinion from a rheumatologist. You may need to be on an immunosuppressant as well as steroids, even if for just a short while to get things under control. Of course I am not a doctor, so please seek medical help. My very best wishes to you.

  39. Thank you for sharing your story!! My hubby Chad was caught final stage 4 years ago. He’s yet to go into remission with several different immune surrpressors high dose prednisone four rounds of chemo 9 months each and now trying rituximab. Thank you again for an up lifting story

    • Pauline

      Oh Shea, my heart goes out to Chad, and to you too. This awful condition affects the whole family. I know that many people have had great results from rituximab, and really hope that Chad will too. Thank you so much for taking the trouble to leave a comment. Do let me know how things go.

  40. I will publicize CSS Pauline. I never knew such an illness existed or that you had suffered from it. You are in my prayers. Love Cousin Sabina

    • Pauline

      Thank you so much sweet Sabina. I am extremely fortunate to still be in remission, it is a truly horrible condition. While we wait for a cure we hope for less destructive treatments. I do hope we can meet up again in London next year. xx

      • I’ll look forward to your visit! Hope we can spend more time together!

        Love Sabina

  41. You’ve handled all this with such aplomb! Thanks for sharing your experience to help others understand. @mirymom1 from
    Balancing Act

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