Due to the intensity of this day and my lack of wi-fi for the next week I will be publishing Day 3 and my end thoughts in sections. Please be patient, it will be worth the wait.
The A-team of Vasculitis information and knowledge was present on the third and final day of the Vasculitis Foundation’s (VF) 2015 Symposium in Jacksonville Florida. I was very tired by day 3 and it was hard to stay focused on so much great information that was being shared.
The morning started with The Vasculitis Foundation’s annual meeting. There was a surprise announcement that 2 NEW studies have been funded by the VF in the area of CSS. These studies were funded though a donation from Ben and Cathy Johnson. WOW…. This is incredible news for CSS patients around the globe. I do not want to give out mis-information so when I get the specifics of each of the studies I will post them (soon… very soon).
We were also given the financial statement of the VF and news about programs, grants and fellowships that they are working on. I could appreciate when the speaker said we are not ‘rare’ we are ‘extraordinary’. If people think something is rare, they think it will not happen to them or someone they love. The word extraordinary gives one a much different feeling.
The digital age is being welcomed by the VF. There are over 4,000 members in the Facebook group and over 30,000 view of the u-tube Vasculitis awareness videos. Ed Becker has worked very hard on all these videos and was there filming many, many more for future release. I even did one….. and the camera lens did not shatter (surprising).
Something VERY important to note here. Just because you belong to the VF Facebook page does not mean you belong to the VF as a member. As a member, your $35 a year is helping to fund research in the field of Vasculitis. You are also part of raising awareness. If you are interested in joining the VF, the membership application can be found here.
The first talk of the morning was titles Research As A Form Of Patient Care by Peter A. Grayson, MD. His talk was fasinating and I had trouble taking notes due to the profound interest I had in his slides and his research. I will start with the the most important part. They are actively looking for people with Large Vessel Vasculitis to come to the National Institute of Health in ______ for imaging test studies. So IF you have large vessel vasculitis contact the NIH and please participant in their study. It could help you and patients in the future. He went into the fact that there are so many ‘opportunities’ in research in Vasculitis. He sees the greatest opportunities in:
– unclassified vasculitis
-treatment of refractory disease
– unusual features and presentations of vasculitis
He sees every case that does not fit into the ‘normal’ vasculitis box as an opportunity to learn more. He enthusiasm was contagious. He presented a case study of a family that ended up not being vasculitis in the end, but he was thrilled at being able to classify things as vasculitis or just being able to find out what it may be if it wasn’t vasculitis. He spoke about “NETs”. Neutrophil extracellular traps (NETs) are networks of extracellular fibers, primarily composed of DNA from neutrophils, which bind pathogens. If you have never heard or read about NETs now might be a good time to blow your brain and read about them. They are fascinating and the imaging is amazing. Here’s even a cool u-tube video about them.
Talk #2 of the morning was by the amazing (in my humble opinion) Ronald Falk, MD. His talk was entitled, ‘Understanding Vasculitis: A View From 30,000 Feet : Where We Are, Where We’re Headed’
I initially did not understand the title but as he explained the meaning behind the title it made sense. Dr Falk compared having vasculitis to the views of the Grand Canyon. You may be, at times on the ground… unable to see around the next rock formation and no end in sight and you look up and can’t figure out how you will ever get out of it. Or you could be sitting on the edge of the canyon, looking down. seeing small sections and seeing the way to go forward but not seeing the whole thing. The 30,000 feet view is way about, you see it all laid out before you but you are so far away that you can’t see the tiny details like the person on the ground.
As a patient we are usually at the bottom of the canyon unable to see the clear pathway and only seeing more obstacles in our way to better health. The doctors tend to be at the rim, looking down. They see the pathway, but not the whole picture, they can;t see the ‘little things’ we are encountering. The researchers are at 30,000 feet — they may see the whole picture but sometimes lack the details.
Dr Falk gave a fascinating talk about the discovery of Humoral Immunity by Ehrlich who was a pioneer in this field in the 1800’s. He showed a great see-saw image of how we need our antibodies to be in balance with the regulatory cells. What we want is balance and what we lack as Vasculitis patients is such Balance. When we have balance, we can be considered to be in remission. He sis a fantastic job of describing what’s going on and what the ‘break down’ is in our bodies. Antigens… Antibodies…. lots of great slides and info but way too much to take notes on (once again should be released soon by the VF for all to see).
Dr Falk went on to explain that “we all have 50 different type of immune cells and we are just beginning to understand some of them”. He also emphasized that ” If you get stressed, you get worse”. How wonderful to really hear it from a doctor that stress is such an important player in our Vasculitis flares. He also talked about the C5A receptor blocker being studied as it worked on mice for ANCA associated Vasculitis but human trials have not begun.
He stated, “We need to learn how to use the drugs we have better or create a device to assist patients”. Emphasis was placed on the fact that the drugs we have are so good that we are over suppressing patients and infections are a real possibility. They are studying what is the lowest effect dosage of medications and how to test that so patients have the lowest possible chances of infections.
The most common question from patients seems to be, ” When should I stop immnosuppressent therapy?” In order to answer this questions doctors have to figure out what will prevent your disease from coming back or becoming active again. 1/4 of the vasculitis community reach long term remission. He would love to find a biomarker so the doctors could predict when you are in remission and when you are going to flare.
IS THERE A CURE?
Well, sad to say no cure at this time but the research is heading toward the idea of restoration of health and well being for the patients and that is why patient powered research is so important (see day 2 post to find out more about becoming part in patient powered research). Dr Falk stated that 81% of people with Vasculitis admit to using some sort of complementary health practice to help them feel better and restore their health. He states, ” Whatever you do that makes you feel like it restores your health…. Do It!” Just don’t go to extremes and share with your doctors what you are doing.
The most exciting part I thought was when he stated…. Yes, boys and girls and respected medical doctor and researcher stated that, WE as patients, tend to know when we are going to relapse (flare) before the tests know. We should trust our instincts and our experience. I don’t know about you, but to have a doctor admit that we know before the tests show is AMAZING to me. I have always known, I have little feelings, and little things start to happen but usually I wait too late for the tests to show and I end up in a huge flare. Now I know to be more proactive and stand my ground when I know a flare in on the horizon even if my lab tests show otherwise.
His last thought was ” Merging of science and patient voice will get us where we want to go…”
That is where I am going to leave you my friends and followers. Think about that last statement. Decide how you can assist and help out so patient and doctors can merge as one in our treatment.
My next installment will be out in a few days and I will go over the last 2 speakers of the day and my closing thoughts. Be well, and remember knowledge is power and maybe it’s time to take the lead in your Vasculitis health to more forward.
Posted in Uncategorized by karen in wonderland with 1 comment.
Put one foot in front of the other And soon you'll be walking 'cross the floor Put one foot in front of the other And soon you'll be walking out the door
Anyone remember that famous animated Christmas classic – Santa Claus is Coming to Town? How about the Song? Put One Foot in Front of the Other. Sung by the voice talents of Mickey Rooney and Keenan Wynn?
After Day 2 at the Vasculitis Foundation’s Conference I am reminded of the lyrics of that song. It strangely keeps running through my head:
You never will get where you're going If you never get up on your feet Come on, there's a good tail wind blowing A fast walking man is hard to beat
Today theme for me was research. When it’s been and where’s it’s going. Dr Peter Merkel from University of Pennsylvania Health Services gave a wonderful overview of the Research Advances that are being funded by the VF talk. He really emphasized the importance of keeping researchers interested in researching vasculitis.
I really think the ‘there is a good tail wind blowing’ and we need to start walking toward more and better patient centered research. Dr Merkel quote of “There has never been more research going on in vasculitis in the the world than right now” was a statement I think every Vasculitis patient needs to hear. I could hear my inner song of the day… We are putting ‘one foot in front of the other…’ The research is going on at all levels and because of new affordable care act funding there is money being made available for Patient Centered Outcome Research and the VPPRN is taking full advantage of that.
Dr Merkel went on to explain the whole list of acronyms that would make you head swim and how each is working together. I am sure these will all be available in slide form soon so I am not going to attempt to even sort them out for you but the bottom line is Hospitals are being linked together to better share data about Vasculitis and Patient Network centers are being formed and getting up to running speed to gather the intangible patient information about how vasculitis really affects the patient and how we really feel (not just lab numbers and test results). So in essence, the groups needed to further research in Vasculitis are getting together, forming partnerships and moving forward at a pace never seen before. YEAH!
But… always a but right? This CAN NOT happen without the patients being involved. We need to as a group speak up and get involved. There are many things we may not share with our doctors or our doctors may not ‘hear’ when we tell them. This is our chance to be heard and start, ‘ walking out that door’ to better health in the future.
How can you help? Funny you should ask. Join the V-PPRN (Vasculitis Patient Powered Research Network). I find it kinda fun if you do it through their portal called V-Bold. Then it seems more fun and you can earn ‘points’ to get some of that cool SWAG you saw from the convention and you can even get enough points by just answering surveys about how you feel or about a recent flare that you get to have a one on one conversation with a researcher (kinda cool…).
Please do not think because you are feeling better OR you are in remission that your information is not needed. You are needed more than ever! How did you get to remission? How are you staying there? You can share as much or as little as you choose and can change your settings in the future. (baby steps people…).
If we don’t participant than we are saying, as a group, that we don’t care about Patient centered research… got you thinking now? I do not work/volunteer for the V-PPRN and was highly skeptical when they first came out about the security of my medical records and how much to share. I like the idea that I have options and the latest secure data resources are being used to protect your medical record. I get to choose how much to share and when? And I can earn points toward some nifty VF stuff… kinda nice incentive. You can even earn points to pay for your annual VF membership fee (even better).
If you want to change your direction If your time of life is at hand Well don't be the rule, be the exception A good way to start is to stand
Time to stand -up people for research. We can be quiet and sit back in our bubbles but the squeaky wheel gets the grease and I plan on being that squeaky wheel. If we all band together image how squeaky we can be. SO it’s time to ‘start to stand’ and ‘put that one foot in front of the other’.
If I want to change the reflection I see in the mirror each morn (Oh you do!) You mean that it's just my election (Just that!) To vote for a chance to be reborn
That my readers is my take-away for Day 2 of the Vasculitis Conference.
After the morning session, I listened to some insightful talks by researchers and doctors that were funded through some of these programs. They gave us insights to their advancements and findings in the world of Vasculitis (all which will be on u-tube videos and slides I am sure in the not too distant future).
I had a delightful river cruise (aka river taxi ride) with a few fellow vasculitis patients and we spent most of our time laughing, talking and sharing and to tell you the truth 95% of our conversation had nothing to do with our illnesses. We are people with Vasculitis and we are still exciting and fun people and sometimes we need to put Vasculitis on the back burner and just smile, laugh and have fun. So, if you think these conference are Vasculitis all the time, you are far from the truth. The VF conferences are what you make of them. Attend with a positive attitude, an open mind, and a smile on your face and you will be rewarded both mentally and emotionally, but more on that tomorrow… for today just remember…
Put one foot in front of the other And soon you'll be walking 'cross the floor Put one foot in front of the other And soon you'll be walking out the door
Posted in Uncategorized by karen in wonderland with .
Hey Dorthy, We’re not in drought ridden California anymore! Ok, probably just me but I am loving taking a break right now and just listening to the thunderstorm and seeing the lightening. It’s a nice chance and a peaceful way to spend the next hour till dinner with other members with CSS group tonight.
Today was exhausting and enlightening. First let me say that getting involved has really made these conferences more entertaining. It has given me a way to connect with more people and hear more stories.
The Opening speaker of the conference did a presentation on being a proactive patient. It was very informative and basically was reminding us that WE are the heads of our teams and as such it is important to keep good records, educate ourselves and take control of our Vasculitis.
One of the opening statements by a Vasculitis Foundation Board member said it best, “ you are to be congratulated because you took control of your Vasculitis by coming to this symposium”. I guess jumping out of my seat and cheering at that moment would have been appropriate but if I could have high-five that man I would have.
The biggest question is WHY should I show up to one of these conferences when most of the slides and presentations show up on the internet and u-tube within 6 months?
Good question and here is my take-away.
#1 – Many of the slides and information shared by the speakers is cutting edge’ and has not even been submitted into medical journals yet. For this reason no video, recordings, or pictures of their slides may be taken. So, coming is the one of the only ways to be ahead of the research curve.
#2 – You get more by the inflection of the speaker, their body language, their unique sense of humor then you ever would by just reading the notes and see a slide of the presentation. Everyone may be listening for something different so coming is the only way to really make sure you hear (or you ask the speakers your questions) what is important to you.
#3 NETWORK, NETWORK, NETWORK – Wait should I say that again? I had the pleasure of working the T-shirt station and upon handing someone their t-shirt and they saw my button stating I had CSS/EPGA they burst out crying and nearly jumped the table to hug me. Weird… a little but I so get it. I was the very first person in 4 years that they have ever met that had CSS. They finally felt like they belonged and weren’t so alone. These multiple day conferences really give you a chance to seek out others with your type of Vasculitis and carry on meaningful conversations with them. In my opinion this provides so much to Mental Well Being which translates to Physical Well Being in the future.
There are so many intangible things you get from attending a conference and staying in a strange city where you have more time to meet and socialize. It is informative and enlightening in so many ways. Am I a conference pusher? YES… but it is because I know because of the Vasculitis Foundation Conferences I have a different outlook on my CSS/EPGA and life. I look around and know I am not alone, I know all things are possible, maybe not in a straight line but in a round about way we have the power to be happy and get through these things. Also I always feel HOPEFUL by the end. I know I can go on, I get new ideas, new tricks , new tips… may be as simple as realizing no, your rheumatologist can’t OK that medication through your insurance but your allergy doctor can (light bulb moment!). I always walk away with something new that makes the trips worth it.
I am not going to do the in depth notes of the conference like I did previously but instead I will give you a few insights from the sessions that I went to and hope that other attendees will do the same.
During the break out session for CSS/EPGA by Dr Andy Abril chair of Rheumatology at
the Mayo Clinic in Jacksonville was our speaker. He that depending on the specialty, CSS may categorize it differently. Rheumatologists consider it to be an ANCA associated Vasculitis. Hematologists will put it under the heading of Hypereosinophilia. While Pulmonary doctors may categorize it as Eosinophilic Lung Disorder. Same illness three categories. We are truly a hybrid is what it gets down too. (makes you wonder if that is why it is so hard to treat and we can present so differently). The consensus is 2.4 – 4 per million worldwide have this chronic ailment. Usually (notice the word usually) it affects people 14-75 years old (interestingly they are seeing more younger patients than in the past).
Once again… You can be ANCA positive or ANCA negative and still have CSS/EPGA. There is ongoing discussions about weather there are two different illnesses (positive vs negative) but no conclusive evidence yet except that they see similarities in presentation if you are of one type or the other (but then… there are many cross-overs hence the Lots more research needs to be done).
We may all be very familiar with the criteria for CSS/EPGA:
Asthma (wheezing, expiratory rhonchi)
Eosinophilia of more than 10% in peripheral blood
Pulmonary infiltrates (may be transient)
Mononeuritis multiplex or polyneuropathy
You need 4 of the six but the deciding factors for most doctors is they also like to have PROOF (yes he emphasized this) of proof of vasculitis. This Vasculitis proof can be anywhere in the body but without this proof CSS/EPGA is ‘suspect’ but may not be a confirmed diagnosis.
He also stated the if a patient has Asthma + rhinitis or sinusitis + high EOS + proof of Vasculitis than a CSS/EGPA diagnosis is 99% specific. He once again emphasized that documentation of Vasculitis with some sort of Pathological finding is essential.
So those were my take-aways from today. The conference concluded at 4:30 and then the other FUN began.
It was GREAT! Everyone seemed to become instant friends. The conference was discussed. CSS was discussed. Family, friends, where we lived… everything was discussed. I think we were by far a very talkative group and everyone seemed to walk out of the pub very happy with at least 1-2 new found friends (we even adopted an Bechet’s patient). I apologize because I was in the moment and took No pictures (yes, I am bad….) but being in the moment is so much more important at times.
I have to say the CSS group seemed to mesh very well together and we all seem to be a happy and lively group. We know that alone we stand but as group we can make things happen and push for more CSS/EPGA research.
Time to go rest because tomorrow starts very early for this girl that is still having time zone change difficulties (ordering room service at 9:30pm because to me that is dinner time in California).
I hope other attendees will post their take away thoughts too. We all see things and hear things through different glasses so it’s great to hear what others learned.
Posted in Uncategorized by karen in wonderland with 2 comments.
Guess where I am? I feel like Carmen SanDiego right about now. (1990’s joke)
If you guessed Jacksonville, Florida then give yourself a gold star.
This may not sound like much but you can imagine if your particular illness only afflicts 2-4 people per million worldwide. Your chances of meeting another person with your illness is slim. The greatest part of the conference, for me, is the chance to meet others with Vasculitis and in particular Churg Strauss Syndrome and just spend some time listening to each others stories and learning what medications may work or what some non listed side effects of some medications have happened to people. Finally you no longer feel like the Zebra in the sea of horses. You ARE with your herd and it is wonderful.
My trip to the conference wasn’t without my usual amount of craziness. I came out to Florida a few days early and while driving at night from the airport in Orlando I manage to hit an Armadillo. Who ever hits an armadillo? Let’s just say, Chevy 1, Armadillo 0. Knew I should have gotten that added rental car insurance.
I was able to spend a few days with my parents in Florida and then headed for Jacksonville. Excitement was definitely building as I would check my phone and see people posting as they checked into the hotel. It was very exciting to see who was there already and trying to make plans to see them. After I arrived I quickly was able to make contact with a few people from the Vasculitis Foundation’s Facebook group and we met up to go out to dinner. Conversation was great and it felt so weird to be on of the ‘old timers’.
While I was listening I remembered those scary first few years and how it was all consuming and I never thought I would be around to see my kids graduate High School. I realized how important is all that people with ALL types and ALL experience levels of vasculitis come to these conferences.
I think sometime we feel like we ‘know it all’, ‘seen it all’ and ‘experienced it all’ by the time we are nearing our decade of Vasculitis. What we may forget is how much we needed mentoring and assistance during those early years and how we can now give back and help out the ‘newbies’. Maybe we can’t give them the magic pill but we can give them hope, that we continue to go forward. We have full lives and wake up putting one foot in front of the other and move forward. Is it easy? ” Hell No!” but we do it because we all have hope for the future and the discoveries that are happening in medicine and in the field of Vasculitis. Are we cured? No. but we still have hope and can pass on caring and compassion that you will get through it and life goes on.
If you are at the conference I can be found Friday morning at the sign in table. Looking forward to meeting and probably not remembering many people’s names. It is a pleasure to meet you all.
Posted in Uncategorized by karen in wonderland with 3 comments.
Gill , Essex, UK, aged 45
I was a very active child, teenager and adult who exercised regularly each week until about 26 years old. I wasn’t sick from school much, apart from contracting measles around 9 years old and then from around 16 years old I had repeated attacks of tonsillitis and they were taken out when I was 20. When I look back, it’s difficult to say when it all went wrong, but in hindsight there may have been some early warnings of trouble brewing. At 15 years old, I went to A&E with chest pain and difficulty breathing and at this time this was dismissed, apparently if I was well enough to put make up on then I can’t have been that ill. As a teen, I also suffered from terrible mouth ulcers. I think I had more days with ulcers in my mouth than without, that’s what my memory tells me it felt like.
I always worked hard after leaving school, always striving for that better position. In my early twenties on trips to both Turkey and the Caribbean, I contracted awful stomach bugs or food poisoning. At around 26 years of age, not long after returning from the Caribbean, I contracted a chest infection which left me asthmatic and I ended up on inhalers for some years. I was now diagnosed with asthma and on the occasions I tried to stop the inhalers, it just came back.
Apart from repeated chest infections and asthma, life was still okay until around 2002 (33 years). I started to get regular problems with my sinuses. At this time, I had not long been in a brand new, state of the art (for the time), building. Various things were going on in my life – stress at work and I was getting married in 2003. In 2004, I accidently took the lift to the ground floor one day where they were re-tiling the floor and as the lift doors opened it was as if someone has punched me in the face with the smell of glue that hit me and it felt as if I was being stabbed in the nose. Why bother with this, you may ask. I have two friends from the same building, one started to get ill when they were working there and has now been diagnosed with mycosis fungoides, and another who a couple of years later after leaving got diagnosed with sarcoidosis. Maybe nothing but they are only two people I know of, who happen to be friends.
Between August 2003 (just after returning from the Seychelles) and April 2004 my sinuses got worse and worse. When I look back, and knowing what I now know, it never occurred to me that the repeated antibiotics I was being prescribed were just not working and it should have been investigated further. I started to get a cough.
In March 2004 I was coughing so badly, that on a commute to London, people were trying to move away from me on the train. I had to carry water with me everywhere. I was the only way I felt comfortable to try and alleviate my cough, which of course it didn’t. As I reached London, I realized I could not carry on and lead a whole day meeting and phoned my boss to confirm I was getting back on the next train out to go home. Stress from my job was at an all time high and in April 2004, I left my job with no other to go to. For the first time in 16 years I found myself without a job. From this time my ability to breath through my nose was gradually worsening.
I managed to drag myself to interviews in London and even secured myself a contract, even though I was coughing all the way through the interview which I found quite amusing. My ability to walk at speed was diminishing. Luckily, I was offered a contract closer to home and I started there in May 2004. By this time, I was trying anything to be able to breathe through my nose – Vicks inhaler, decongestants, and steam. I had to leave my friends walking to and from work because I could not keep up, in fact I could barely walk, not because of my legs but my lungs. When I got to both the office and car, I was going through copious amounts of tissues to cough up all the clear sputum that was being mass produced that I just could not get rid of. It was quite disgusting. My husband and I went on a beautiful walk to Pinetum in Kent sometime in June and when I was unable to walk up a slight hill it dawned on me that I was in real trouble and felt the end was close. I saw my GP and she suggested a private referral to a respiratory physician and this happened within a matter of days. That was the best referral I could ever have had. He also specialises in allergy. That consultant has been my rock along the way and boy have I given him some grief.
At his initial consultation from the chest x-ray, after about 20 minutes, he told me the mass on my lungs looked like possibly tuberculosis or lung cancer, the latter of which could be ruled out by taking steroids. Bloods were taken. I started on prednisolone, went back and the patches on my lungs had started to clear very quickly. The bloods showed raised Eosinophils, and he confirmed I had Eosinophillic Pneumonia (EP). Wow, what a difference that made but what I chose not to hear and take in and that time was I remember him telling me that this condition could lead on to another disease. Wish I had my ears pricked up a bit harder. I was just relieved to have a diagnosis that was not cancer and started to feel more human again. The treatment was steroids and since that date I have been taking a seretide inhaler. I had a second case of EP some months later. Sinuses were still causing problems.
In 2005 I became pregnant, now off medication, and had my first child in 2006 and my second in 2007. My bloods were referred to my consultant during pregnancy because they were concerned I might have had AIDS, because my CD4 count was abnormal. Luckily he was able to rule that out. My consultant had predicted that during pregnancy I might feel very well and of course I was. I had not felt so well in ages. Pregnancy and birth were wonderful to me but to stay in that permanent state I would have a huge family and probably be bankrupt by now.
When my second child was 11 months old, I started to feel very fatigued again. Sinuses an every day burden but I think I just got used to the pain. We discovered some mold in our house, which I believe made my sinuses worse and in late 2009, I was rapidly going down hill. The ability to do things was diminishing and so frustrating then I started to get pins and needles in my arms, legs and feet. I was fortunate to be able to ring my consultant’s secretary and on this visit he confirmed that he felt I had now moved on to Churg Strauss Syndrome. At this point I met 5 of the 6 criteria for diagnosis. The only one I have not met is biopsy but most of my problems are lung related and he felt it too invasive.
Well I cried for 3 weeks after reading about it on the internet, assuming I would be dead within 5 years. I put my consultant through hell. I researched every other possible disease linked to eosinophillia and pulmonary infiltrates that I could find and asked him to confirm to me that none of these matched me. I was even paranoid that I had only fallen ill after being abroad and had I contracted some awful parasitic disease. I even requested a second opinion at the Royal Free, who confirmed the same diagnosis. In the end I thanked him for being patient with me to which he responded it was a pleasure. I guess I was in the denial phase for a long time. All my allergy testing was negative and I am also ANCA negative. In 2010 I was again on steroids but no immune suppressants at this time.
When I tapered off the steroids, I was soon chronically fatigued again. In 2012 my cough was getting worse, although this time a slightly different cough. I didn’t really have any pain, except I was getting more occular migraines and my eye socket on one eye was itchy and swollen. Lying down on my back was slightly uncomfortable. Sinuses as usual were a problem. I went back to see my consultant and the chest x-ray again showed pulmonary infiltrates but also he and I noticed the shape of my heart. I was immediately referred to the heart ward there and then and was given an ultrasound. This time it was a pericardial effusion. So from then on I was seen by a Respiratory Physician, a Rheumtatologist and a Cardiac Consultant. Apart from the cough, this condition did not give me any symptoms at all. So back on the dreaded prednisolone again and I was also started on MMF.
As of today, I am now down to 1mg of steroids and 2000mg of MMF (Mycophenolate mofetil) . I am, according to the doctors, officially in drug induced remission. After 3 years, assuming I don’t go in the wrong direction, they will try and reduce the MMF very slowly.
I know I have been saved any nerve damage so far, even though I am at stage 3, by being referred to the correct consultant for my symptoms at the time. This, I believe is fundamental to everyone’s right direction on their journey forward in receiving the appropriate treatment. I was not coping mentally until I reached acceptance, again I think this takes each individual a different amount of time to come to terms with but makes the journey easier once you have reached this milestone. I have learnt to accept my life will never be the same again. I am no longer regularly under a cardiac consultant but see an ENT instead. I don’t have any polyps, have only a slightly deviated septum and the nasal lining is currently is much less inflamed than it was in 2010. I have also persevered with nasal steroid drops and sprays, which has helped. Because of my deviated septum I have not been able to master the art of nasal rinsing.
Although my consultants are not vasculitis experts, they do have seminars with the specialist doctors who are and at least they know what vasculitis is. Every time I see my consultants, I take brief notes and try and impress them with my knowledge, well let’s face it you don’t get diagnosed with a rare disease and sit back and just do nothing. I know my relationship with them and my GP have helped me greatly.
Obviously, being on MMF has not been without problems. My hair is much thinner and dull and dry. I keep catching infections and after a trip to Greece last year, I ended up in A&E with a non specified infection that I had to fight for antibiotics for. I remember thinking in my head, when they were scratching their heads after ruling out a deep vein thrombosis and not even knowing what MMF was – “just give me the damn tablets, I know I am not showing a fever, but I am on medication that might be masking it”. In the end I ended up getting some tablets and came away with a 2850mg a day dose of two antibiotics for 7 days. Within half a day I was back to normal – well almost apart from the effect of the antibiotics. That’s what you get for asking for it.
I feel very lucky that I am not as badly affected as some of other people with this awful disease. I am not religious, but I believe only those strong enough to deal with it have been given this awful fate. The only thing I get sad about is not having had enough energy for my children but my husband is good with them. I worry of course about passing something onto them as the maternal side of my family are riddled with auto immune conditions.
I am learning to listen to my body when it is telling me something is wrong and I have finally learnt when to sit down and rest. I do part time work two days a week and have set up my own little giant bauble business because I know I can never do the long hours that I used to. I don’t bother trying to explain my disease to people who aren’t really listening because they usually only offer advice on how to boost my immune system which is really what I don’t want to do. Only my few good friends understand. Some people think I am lazy but my “in the mind” response to that is they want to look at themselves and I just ignore their cruel comments. I’m still alive and I am fighting. I still have a sense of humour thank goodness.
Kevin Selig was diagnosed in January 2014 with Churg-Strauss Syndrome and fought a courageous battle against the disease. Kevin passed away on Saturday, June 21, 2014, at the Mayo Clinic Hospital in Jacksonville, Florida.
We in the CSS community were saddened by the loss of such a vibrant human being and reminded how our illness often goes undetected until too late. Glenys , a very brave CSS warrior, set us into motion to bring awareness to our disease with a challenge to raise awareness of Churg Strauss Syndrome by posting a story on the the 1st of every month in an effort to let the world know we exist and we want to help others obtain earlier diagnoses.
Posted in CSS by karen in wonderland with 1 comment.