Churg Strauss Syndrome - Total Confusion - No continuity of care.

[Mitz]

Yesterday, the doctor at the Hospital got things wrong and told me lies, now I do not know what to do. 4 hours round trip to Hospital, now I can hardly type let alone move. Been ill for well over 5 years, been fighting for 5 years, thought I had got the answer at last, but yesterday I lost all faith. Now totally confused about what drugs are available for this condition and said cannot be sure if I have got CSS.

What drugs are available for CSS. Have pain in abdomen, do not sleep much, totally exhaused at least 4 days a week. Too many symptoms to state, but I get feverish, then cold (now told, once again, its not a symptom). Feet and hands/legs painful/stiff/weak. Find it hard to get to the Hospital now, the journey is a nightmare, fallen upside down on bus when it went around the corner, I was sitting down and my husband was with me. 2 Asthma attacks also on the same journey too. Yesterday told no more drugs have to go back on original drugs again. Do not believe. What can I do? Sorry for the tirade, upset and cannot think straight. On the dreaded pred again which does not help. Was originally fit and healthy now with the Pred I am 5 stone overweight. I have had everything checked twice except my heart. Told by Doctor yesterday CSS does not affect the heart. The Doctor said I have no trouble breathing when walking upstairs etc. Unbelievable, I have great trouble for the last 3 years.

Sorry, I do not know the spelling, but I originally had Anzothoprine and it was working great for about 6/8 weeks then I had a terrible sickness attack ended up in my local A&E, it had attacked my liver, tried it twice more, but each time made me terribly ill, even with anti sickness drugs. Last time told by my local A&E my White Cells were bad. (Also left without in room for 11 hours without a drip, treatment, blood pressure checks etc in A&E, also went numb down one side so I cannot afford to take it again). Yesterday the consultant told me to take it again, I thought he was joking, but he was not. Eventually he admitted that he had got it wrong, unbelievable. I have had a terrible 5 years and I thought someone was going to do something, but I seem back to square one again. I have listened to doctors for 5 years and if I had not done something myself I would be dead, and I am not joking! It has been a complete nightmare and it seems it is going to start all over again. Sorry for the long tirrade, but this is only 1% of what has happend.

[John_Mills Volunteer]

if you would like telephone John anytime please do 01629650549...John will also try and help and get back to you here on HU later today.

Susan

[Mitz in reply to John_Mills]

Hi

Thank you so, so much. I have been going mad and so has my husband we were totally fed and worried, but just knowing there are people out there like yourselves is fantastic. Yes, I would like some advice, but am extemely exhaused and tired, my head is bad due to yesterday. I was on my own at the Hospital and I refused to take the Azathioprene again. But, I'm glad I went back in and asked more questions, even though I was given lies. Eventually, he admitted it would be wrong for me to take Azathioprene again at the moment. So much NHS money is being wasted on unnecessary tests, emergency treatment, hospital stays etc and still, even a specialist vasc unit does it wrong. Sorry, I am really exhausted and probably making no sense. Thank you for your reply. I will look on here later and perhaps I can phone John some time, if it is alright. Once again thank you so, so much.

[HiveMind]

Hi Mitz,

You poor thing! You seem to be going through hell at the moment. I truly feel for you, I really do.

I too have CSS (diagnosed 2008) and I can tell you now CSS CAN & DOES affect the heart because it's affected mine. It's also affected my lungs (Bronchiectasis) as well as having asthma. I'd gladly speak to your Dr and confirm it too!

Who is treating you? Because it sounds, in my humble opinion, like your condition (whatever it is) is NOT being adequately controlled.

As far as I am aware, Azathioprene is a drug that is metabolised by the liver BUT if you do not have the enzyme in your liver to do this, then your liver will toxify. I know this because it happened to me. I was given it WITHOUT being tested beforehand to confirm if I had the enzyme needed to metabolise it. It sounds to me like you don't have the enzyme either. My Dr. Stopped me taking it when she saw my blood results and saw how ill I was.

My Rheumy next put me on Mycopheneolate (stopped working) then Methotrexate (stopped working). Now I'm on Leflunomide (having bad side effects) and currently waiting for Rheumy to review what to try next.

Initially, when 1st diagnosed, I wasn't happy with my care, so I asked to be seen by a Vasculitis specialist. I would suggest you contact John Mills (on this site) and ask him to point you in the direction of the nearest specialist to you.

Also, please feel free to contact me if you need any further help. CSS is my speciality!

Good luck!

[Mitz in reply to HiveMind]

Thank you very, very much for responding. I thought I was going to go mad. This last 5 years has been hell. It is not the being ill so much as the treatment that I have had. Yesterday was unbelievable. I am under a Vasc Clinc and all seemed good, apart from the fact that you see different doctors, but they always get things mixed up. But, yesterday, well I am still seething. Thank god for this site and John and Susan Mills. I am extremely exhausted at the moment I've had no sleep since yesterday. So I am going to try and rest now and hopefully get back to John Mills tomorrow when my head is more collected. As you know it is bad enough being ill, let alone trying to get someone to listen and, tell the truth. It is unbelievable how much money it has cost me and the NHS on wasted hospital stays, emergency treatment and unnecessary tests, let alone the cost to my husbands health etc. A few years ago one Doctor was going to take out my Gallbladder and another told me to buy a special bed to keep me upright. I cannot thank you enough for replying to my blog, I only wish my head was straight which, after a rest, hopefully it will be. It is soh good to know that there are other treatments. Oh, by the way, I did have an infusion of rituximab earlier this month and my throat started to close up, so they stopped the infusion. However, whether it was part of the infusion or the steriods, my breathing and nose felt a lot better, I got my smell back for 1 whole day, this has not happened since I took the Anzoph. Well they have made another appointment in 3 weeks time, but who I see next time, who knows. I do wish you well and am so glad you responded it has been extremely helpful. I will get in touch with John Mills thank you.

[Alanfern in reply to HiveMind]

Hi do u still use this site?

[Mitz in reply to Alanfern]

Yes and still alive just.

[John_Mills Volunteer]

Hi Mitz. John here. If you want to phone any time feel free. Or if you prefer just send a private message. As this is your personal medical information I feel uncomfortable discussing details on the discussion group - even though you are among friends here, of course.

Where do you have your treatment?

According to the textbook, 44% of CSS patients have cardiac involvement and of course the lungs. As BB said above, it does sound as though your disease is still active and indeed, azathioprine doesn't suit everyone.

Don't despair - we are all here to help you!

John

[lillylangtree]

I am so sorry that you have to go through this, Of course Churg Strauss can affect your heart, it can affect multiple organs, It affected my lungs. I lost the use of my legs and In couldn't type either. I was rushed to er because my Doctor didn't know what was wrong. The Doctor sounds like a total moron who told you that. Please go to Churg Strauss groups on facebook. Also, we have one called "healing from the inside out" Also one called Churg Strauss friends. You need support now, please, there are people who can help. I am in the USA. I was diagnosed in 2007. I am now able to walk, drive, exercise and type. I also got off all drugs and the asthma is ok. It was a lonely journey, thank God for my husband, but I felt so different. I didn't have any groups or friends that understood. I am off all medications now because I went to a Naturopath. I was fit, active, loved jogging exercise, life til I got CS/Vasculitis. But I got better, you can too. Please get a different Doctor. Blessings to you. If there is anything I can do, please let me know. !!!

[Kazam in reply to lillylangtree]

Hi there! I read your comment and am really happy to hear that you regained the use of your feet and hands!!. That's GREAT !!..Wow!..... I don't have CSS.... I have Cryloglobulemic Vasculitis..{well actually that's what they are assuming },and have lost the use of both feet and now my left hand !!!.. My two toes on my left foot are totally BLUE,..''ischemic'' and could turn to gangarene and I'm scared to death I'm going to lose them!!! If I lose the use of my right hand too I'll be totally disabled! ... . I am to start Rituximab treatment next week.. I hope it will at least stop this. from doing more damage........I 've been searching the internet to find if this nerve and muscle damage was irreversible,and haven't been able to find anything...,One of my Nerve Dr.s said it was permanent?..but I've had ''drop foot'' a few times before and recovered............It took me 16 long ,yrs to finally be diagnosed. ..long story!... ...I'm in Canada and not many Dr.s here know about Vasculitis,,.....,,I'd love to hear about your Natural Healing......your comment has made my day and given me some hope!!

Smiles. Katherine

[lillylangtree in reply to Kazam]

Hi Katherine, I am glad that I was able to give you some hope. I have complete and total believe that all dis-ease is an imbalance and can be remedied.. I was taught this in Naturopathic Medicine, I had to change just about everything. I took a risk because the thought of being in the shape I was physically in made me so depressed. I felt as if my life was at the end, but I always had that deep inside the knowing that I could get better. But I had to really work very had at it. Some of the methods that my ND used were against what I believed but now make so much sense. I was on 100 mg per day prednisone for about 2 months in the hospital and several other meds like gabapentin, oxycodone because I was in terrible pain. I did pray and and ask for help and asked if God would send someone to me. I didn't like what the rheumy was giving me or wanted me to take as I only seemed to feel worse and nothing changed. I was still on the Prednisone and then the Rheumy gave me Methotrexate and I started to throw up, lose my hair and felt terrible. I called her office and always felt like I was bothering her because I hated the side effects. I begged her to let me stop the Pred. There was no ok, so I went on a taper myself and just cut it down 5 mg per week or so and the last dose was the day I saw my ND. He told me that if I continiued with the Mtx that it would cause cell death, or death of the blueprint in my cells and that they can never be restored again. So I stopped the MTX cold turkey. I never recommend others to do what I did without the guidance of a good Doctor or Naturopathic Doctor. He cared and he never charged me to help me. He had me call every morning to check in with him. I really was afraid to die and certainly thought I might as I was told by the head of the hospital I was going to and also by the Rheumy for stopping the drugs. That was a big risk, but I didn't die and have been off all drugs since November 2007, the day before thanksgiving. I have had a steroid burst for pnuemonia 2 times as my immune system was thrashed from the immunosuppressants that I had taken. It wasn't as bad as I thought. I even stopped the oxycodone cold turkey because the Doc told me to wait til he got back from vacation? So I just quit. I had a few sweats and chills but got over it. The ND put together a program of supplements and herbs as well as a detox and healthy whole organic veges (no sugars of any kind, including fruits). I ate quinoa, no coffee for a year and a half and only clean pure water and probiotics, digestive enzymes and green drinks. I started walking (very poorly) very quickly and it got better and better and I got rid of my high toilet first, haha, also next was the walker, the wheelchair and have been without a cane for 2 years. I can even run now. But I was as willing as the dying could be to make big changes in my life to overcome this. This is the 2nd year I have not had to be rushed to er for Pneumonia or asthma because I got sick so easily. I have a bit of a cold now, but it is leaving!!! No drugs, just lots of fluids, vitamin c, and a killer cold medicine I make. Do you have Naturopathic Docs in your area? Please be sure they are recommended and that they are familiar with autoimmune. If you can, get a good referral to one if you'd like. It has been a road for me and my family, a journey of sorts, but I never really thought I 'd walk again. And II am not the only one. My first CS/Vasculitis friend went through both feet with foot drop, major hear involvement, as well as not being able to walk or even use her hands at all. She is normal today,s he gave me hope. She did use meds, she used alpha interferon and said that is what has changed everything for her. She was 10 years on Pred and Chemo drugs and afraid not to have babues and has 2 beautiful daughters since and a wonderful husband. Also, the Doctor who said that is another ignoramous. Sorry, but I went to a Neurologist and he told me that our nerves do regenerate, it takes time and may not grow back the same. I still have some numbness in my lower legs but now my husband can tickle my feet and I laugh, so it does come back. We have to nourish our bodies, feed them what they recognize. No processed food, sugars, nothing from a box. Whole foods, it really made a difference in my life and my husband and mothers too! We alll eat this way and no one is sick here. I have been the sickest, but getting better all the time. Blessings to you! Janet

[lillylangtree in reply to lillylangtree]

I forgot to add that I was afraid to lose my feet too. My feet use to turn blue and sometimes black. It was quite scary. My husband massaged them, it does help. They no longer turn black and blue. They are n't perfect, but I can stand and even lift them when they use to flip like fish and even when I stood with a walker my feet would collapse. No more, thank God.

[Kazam in reply to lillylangtree]

Thank You Janet, you have really given me hope.!!!...I feel like I'm dying.too and it's a terrible way to live......I'm only 57 ....I've lost about 50 lbs and am losing my hair now,.before I even start any chemo treatments. I look absolutely terrible...I believe in what you are saying, it makes sense..we eat far too many processed foods ... I sure do !..... I live alone and its easy to open a microwave dinner. rather then cook a big meal for just one person.. I eat alot of sugar too......

Wow You describe my feet exactly! my feet and toes flop like a fish too,and so do my ankles. like there's no joints holding them there anymore...they feel tight and frozen and burning and tingling all at once..with shooting stabbing pains too..Nobody that hasn't felt this pain has any idea what we are feeling. Just to hear you describe your symptoms ,they are MY symptoms too! I've had Peripheal Neuropathy in both feet for 10 yrs but this is much much worse... I had a;leg brace made in 2008 for my left leg when my foot dropped. but its too big now and its my right foot now too so I have two canes.. the brace wouldn't fit into my shoes anyway and hurt my leg... My feet can't be massaged tho..it hurts to touch them I moved in late Nov. and I've been really sick since before Christmas.I attributed it to over doing it moving. because now my muscles were all aching too especially behind my knees..... Both my feet seemed to drop but not totally..like before...Then on New Yrs Eve got severe pains in my left arm bicept and thought I was having a heart attack.,woke to my left hand being totally useless i have no strength in it at all .its turning in now too.....I went to the hospital and have been to 5 different Drs in the past few weeks and they all said something different about the seriousness of my Blue toes.. One Internist said I needed Plasmapheresis immediately that I could lose my toes,.so I went to a bigger hospital up here. and wasted 7 hrs before they told me they didn't do that procedure there. I was finally referred to the Vasculitis Centre in the city and that Dr called it ''ischemia'' and mentioned plasmapheresis.,but decided to treat with Rituximab instead,...but he didn't say why?. The nerve Dr just said Yes they are definately Blue! another Dr said it WAS urgent.. another said just try the prednisone for 5 days and see??? UGH!!!...Just to hear that your toes were blue and even black and you still have them !! makes me feel so much better...you have no idea how relieved I am!!.....I thought once the tissue was dead that it couldn't repair itself. I'm so glad I was wrong!!!!

.I've been on hydromorphone for 10 yrs and it does nothing for my pain. now. It's so bad I can't even describe it . especially at nite. ....I haven't slept for months because I refuse to take sleeping pills.,,they stay with me the next day .. I have horses and have to be awake! I' haven't been able to do my chores for 3 months . my boyfriend comes everyday and does my animals for me.....I'm on 25 mg prednisone and bloodpressure meds.and hydromorhone contin.

... I tried a Naturapath yrs ago but it was very expensive.,.she wanted me to take bottles and bottles of supplements costing over $600 a month...., I'm on a disability pension and couldn't afford it so stopped after one month... I'm suppose to start Rituximab next week,,,my Rheumy is the head of the Vasculitis Centre at Mount Sinai Hospital in Toronto and he says I have no choice that the Vasculitis is killing me.and Rituximab is my only hope....Now I don't know what to do! I don't want to kill my cells. Is Rituximab as strong as the drugs you were on??? I read that it wasn't as bad? doesn't cause hair loss and the side effects aren't as bad as other chemo drugs??? It's not used for autoimmune diseases here in Canada.,and it had to be approved for me..that's why its taken 3 weeks.,.. they had to arrange for it to be paid for as well... its $10.000 per infusion.

Janet can I ask how much did your Holistic treatment cost? just for the herbs and supplements.?? Can you remember what ones you took??..... Changing my diet would certainly be a good start....only it's hard to peel potatoes and veges with one hand!!. I can do it tho....I'm sure going to try.... it can only help..even with the Rituximab.....The friend you mentioned..who says interferon helped her? was she on a Holistic treatment as .well? I tried interferon in 2008 but couldn't tolerate the side effects .

After searching for months You are the first person who has had the same symptoms as me.even tho we have different forms of Vasculitis. Just knowing that you and your friend have recovered will help alot of us get thru this!! THANK YOU!!!!! ......to be honest I didn't think any natural remedies could help such severe symptoms.The nerve Dr who did my nerve conduction tests 2 weeks ago and said the damage was permanent said Vitamin B 12 wouldn't help...I'm taking them anyway because like you say nerves do regenerate!!!!

Sorry for rambling on ..Janet..I didn't realize everyone else saw my reply to you....... I didn't mean to get into all my symptoms and go on and on.but finding someone who has gone thru this, and recovered is just the best news ever!!!, I've now got hope and a new mission!!.....I'm definately going to find a Naturopath somewhere!!! and research this. I wish I would have found you and this site sooner!.....I go for tests and liver utrasound Tues.,before I get the Rituximab. infusion.....at first I was suppose to be admitted to. hospital in Toronto but now they say I can go to an infusion centre.closer to where I live .Again, I apologize for all the questions Janet..I appreciate your help!!.If you have time....you could email me at [e-mail]....so I don't fill this site !! It looks like I've written a novel here!!! I'd love to learn more about what herbs and supplements you took just in case I can't afford to see a Naturapath...Thanks again!

Katherine

[lillylangtree in reply to Kazam]

Hi Katherine. My email addie is [e-mail] I will email you.

Janet (:

[EbonyWillow]

Hi Mitz

So sorry you are going through all this. I too have CSS, diagnosed in 2004 after well over a year of serious problems - only finally recognised by the Cardiologist on admission to hospital after an angina attack. CSS CAN affect the heart, I was fit and well before this. I have been managing well on Methotrexate (and Prednisolone during flares) right up until the last few months but now it appears the Metho has stopped working and I am under review for a change in treatment. Sometimes when you are really low, it's hard to be strong enough to get the medics to listen to you and to take all those different symptoms seriously. When they get the treatment right you should feel a lot better and I do hope they sort you out very quickly now. Thank goodness for this site - you are not alone!

My very best wishes x

[whlslr55]

let me say that weather it is css or some other form of vasculitis, it doesnt really matter. you have inflamed or narroed blood vessels that have a ripple effect throughout the body. medicine will or might help the symptoms but will not cure you.

The way I understand it: I am no doctor: css is obviously a vascular inflamation disease that incorporates a coincidence of breathing/respiratory issues. most likely caused by a FRAUDULENT REACTION to a drug that produces an ANTIGEN that confuses your brain and makes it think that certain good cells are bad cells when they are not. This is now an autoimune disease. Prednizone is a steroid that will only help calm the inflamation, SINUQUEST from Dr. William Von Peters is recommended for optimal respiratory health/ sinuses/ etc.. Perhaps an asthma drug is what caused the body to fight off good cells. ..Vitamin D3 is essential for many things including cardiovascular health, perhaps you are deficient, as we all are? The ingredient found in an Indian spice, TUMERIC is necessary to reverse the inflamation. The active ingredient in the tumeric is CURCUMEN. You will find this to be a key ingredient in reversing the inflamation. For optimal absorption of the CURCUMEN, you must have PHOSPHATIDYL CHOLINE. you can mix a level teaspoon of tumeric in a glass of water 3x per day or use it on food at luke warm temp. 1800 mg. of vitamin C per day and 20,000 - 25,000 units per day of D3 will boost the immune system, although it is a little busy fighting off the MD's perscription drugs. other ingredients to the "cure CSS" stew are magnesium for circulation, iodine (found in sea salt), Zinc, and perhaps a cancer fighting natural medicine called FLORESENCE. Raise essential fatty acids, raise antioxidents to 100,000 orac per day. stay AWAY from processed foods. One more thing. SELENIUM will recycle antioxidants, letting them go round and round instead of a short lived impact. this is friendly advice. please do the research and I believe you will see a turn around.

[tumeric1578 in reply to whlslr55]

Hi, can we please get in touch. [e-mail]. I liike what you wrote but have some specific questions and would love to get in contact with you. Best regards Sonja

[MikeMTE]

Hi , I've been diagnosed with CSS and your symptoms are exactly the same as mine . I've had 5 different types of chemotherapy drugs . The latest one is cyclophosphamide which is doing something. The disease is fully active and systemic . I've now developed muscular neuropathy which has made me lose 3 1/2 stone . I look like a holocaust victim . There seems to be 6 drugs that they use in a cycle of treatment . When the cycle is complete all they do is start again with the same drugs unless there was serious toxicity . With regards to rheutuxamab it should only be given to positive Anca patients as there is medical evidence supporting that the drug advances the disease in negative Anca patients . I hope this helps .

[JontyW]

Hi MikeMTE,

Re your comment .."rheutuxamab it should only be given to positive Anca patients as there is medical evidence supporting that the drug advances the disease in negative Anca patients".

Please could you provide the link to this evidence on -ve patients, since I'm ANCA -ve and my consultant is considering changing me from Aza to Rituximab but believes that NICE will not fund this since all trails have been done on +ve patients.

Thanks ..... Jonty

[MikeMTE]

Hi , I've was diagnosed with CSS nearly 3 years ago . I'm told it's systemic and the disease is fully active now . I've had 22 infusions of cyclophosphamide and this is being used as a maintenance drug due to all the other drugs failing . I'm told there are no other drugs and that I will be prescribed this drug until it is no longer viable to treat me . I totally sympathise with you regarding your symptoms due to the disease and side effects of the drugs . It is a horrible disease and you will experience new symptoms as the disease progresses . I'm fortunate that the consultants assisting me are very honest and open . They've been very open about the neuropathy and have acknowledged where this is going to take me . I found that attaining some knowledge has helped in the communication with the medical staff . I quite often generate a list of questions for the consultant's for which they do try their best to answer . If they don't have the answer at least they open enoug to tell me they don't know . I wish you all the best and please realise you are not alone , there are others suffering the same . If you are unsure about anything then please speak up . Talking to other patients who are prepared to listen can help you see your situation through a set of fresh eyes . Not everything works for all CSS patients but sometimes talking gives you that edge you need . My thoughts are with you as I do fully understand how you feel . We all get dark days . Kind regards Mike .