My Skin Is Cured of Scleroderma, but the Rest of Me?
Almost 18 years to the day from my visit to the Scleroderma Unit at The Royal Free Hospital in London, I was exhilarated to have been told on Nov. 30 by world-renowned scleroderma expert Prof. Chris Denton that my “skin is now cured from scleroderma.”
I was given 15 months to live by my medical diagnosing doctor in autumn 1997 when I was 24. In December 1998 I arrived at the office of Prof. Denton and Dame Prof. Carol Black at the Royal Free Hospital in a very bad way. My body had turned to stone.
The skin covering my entire body had become tight, itchy and painful — it felt too small for my body, sort of like shrinking a piece of clothing in the wash. This was accompanied by swollen joints and weak muscles, making any physical exertion, including standing, a huge feat. My fingers and toes were always blue, with a minimum of 4 digital ulcers at any one time. All this, along with a level of exhaustion I had never experienced before (even the week I spent in Ibiza after my A-level exams couldn’t compare with how tired I felt).
Following many extensive medical tests, the good news was there was minimal internal organ involvement. However, the progression and aggressiveness of the fibrosis and lack of elasticity of my skin and connective tissue placed me on the “diffuse systemic sclerosis critical patient” list. An urgent medical treatment plan was drawn up with numerous IV cyclophosphamide infusions scheduled. If they were ineffective, I would have a stem cell transplant.
The only way I can explain how I felt leaving the hospital is an overwhelming sinking feeling inside. I recall having to consciously force myself to breathe. But I also felt comforted knowing that I was now under the medical expertise of global leaders in their field. Their dedication and commitment to improving the scleroderma patient landscape invoked huge hope in me that a cure would be discovered within my lifetime.
And most of all, they would “pull out all of the stops” to do everything they could to help me — and, of extreme importance to me, help me realize my childhood dream of becoming a barrister (British attorney).
My new medical team took no time in getting me hooked up to the chemo drips. I had two sessions before the Christmas holiday, which was repeated at the start of 1999. At the same time I was taking mycophenolate mofetil (mmf, 2g/day). By Easter 1999, my skin symptoms gradually eased, and I was taken off the stem cell transplant list.
On March 1, 2004, I qualified as a self-employed practicing barrister, and so, having achieved my personal life goal, I reduced the mmf dose with a view to stopping it completely. By the end of June, I was back on my settee after experiencing a relapse with my symptoms, mainly lethargy, intense musculoskeletal pain and neuralgic pain. Six months later I relocated to my birth town of Southport, and my full-time job was now keeping my symptoms at a tolerable level.
Digital ulcers were my nemesis until I began taking Bosentan 125 mg twice a day until October 2012. Due to my Raynaud’s sensitivity, I have found that the prevention of attacks is far less painful than having an episode. This makes me a “home bird” all year long. Again, words are difficult when trying to describe an attack of Raynaud’s phenomenon. I could compare it to slamming your hand in the car door, but the pain is impossible to articulate.
For more information about Raynaud’s and scleroderma, read my column from September:Â Raynauds seasonal changes.
If I am honest, 18 years ago I would never have believed (given the medical advice I had been given, combined with how I was feeling and what was happening to my body at that time), that I would still be alive, let alone be told that my skin would be cured of scleroderma. I don’t want to be morbid, just honest about my reality at that time.
Again, I struggle to describe the level of gratitude and appreciation I have for Prof. Denton and the scleroderma unit team at the Royal Free Hospital. I am also extremely grateful to my local medical team here in Southport, Dr. Sykes and the rheumatology team, as well as Dr. Bontea and the dermatology team at Ormskirk hospital, and of course my dentist, Andrew Booth, and hygienist Louise.
As a long-term scleroderma patient, my main health challenges now include extensive calcinosis, telangiectasia, dry mouth and gum recession, chronic MSK pain and Raynaud’s. I have stabalized my gastrointestinal symptoms by altering my diet and including daily smoothies and fresh juices for maximum super-food nutrition.
These unmet clinical needs certainly show that scleroderma is more than skin deep, causing devastation to the vascular and soft tissue and connective tissue processes along the way.
I have written about the the scleroderma olympian and what I can expect from a scleroderma diagnosis, as well as the long term scleroderma patients’ annual check-up.
All in all, I am more than aware, and I am extremely humbled to know, that I am a very lucky scleroderma patient regarding the “mild” set of symptoms I now experience compared to some of my fellow patients, who are far braver than I in dealing with their disease activity.
But one day, hopefully very soon, I want to be able to say, “I used to have scleorderma.”
So until then, I will continue to be delighted in how I feel, knowing that “my skin is cured from scleroderma.”
This is the T-shirt I was wearing on the day I was reminded that I was a medical miracle:
Living the dream, scleroderma style, hoping for a cure …
#SclerodermaFreeWorld #RaynaudsFreeWorld
Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News, or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to scleroderma.
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Comments
Kay Womack
My daughter has Scleroderma into 2 years now, breaks my heart to see her suffering so much. If anyone has help let us know..
micshell
Focus on her relieving pain levels and use alternative meds, vitamins & esential oils. I was diagnosed in 99 & given 5 years to live...I refuse to let them be right.
Nicola Whitehill
Thanks for sharing! i was diagnosed in 1997, given 15months prognosis, then changed doctor to an expert specialist in scleroderma :)
Mercy Carv
Please reach out to me. I was diagnosed and I am loosing my mind.
Cherry Rhodes
I have Schloderma, 2019,till now Raynauds phenomenon, or connective tissues deases, Im still suffering. :(
Marie
I love you encouragement I am not sure if you believe in god but I pray that he continues to bless you and keep you love
Nicola Whitehill
sorry to see this... did you see the UK guidelines? sending lots of wellness wishes http://sclerodermanews.com/blog/2016/07/20/uk-guidelines-for-scleroderma-treatment-and-management/ Nicola
June
Go to Roadback.org and read about patients wh have used the antibiotic protocol to treat rheumatoid arthritis and scleroderma. I am one who has used the minocycline to put my scleroderma in remission. Mainstream medical community do not support this even though there are hundreds or maybe thousands who have been helped by this protocol. Minocycline is not the same as most antibiotics and has been used for acne long term for a long time.
Denise Smith
I took minocycline for 8 years! Complete remission. Now 21 years later, I’m having swollen fingers, joint pain and increased Raynaud’s! So bummed. ANA 1:320 speckled. Wondering if I should go back on minocycline! Any thoughts?
Caroline Pratt
Hi Denise - why would you not go back on it ? Are there side effects? or is it that it destroys your gut bacteria? Also I am not sure if anyone has looked at the elevation of the Epstein- Barr virus as a possible cause ?
Nicola Whitehill
sorry to see this... sending her lots of wellness wishes.
did you see http://raynaudsscleroderma.blogspot.co.uk/2018/02/the-pandoras-box-of-rare-autoimmune.html
#SclerodermaFreeWorld
Dali
I was diagnosed almost a year ago.
I removed dairy, red meats,any white flour foods, legumes , soy and foods with lectin.
It has brought down my inflammation significantly my markers are almost normal I'm hopeful my next blood draw will be normal.
I take plaquenil and methotrexate along with diet.
Exercise does help it eases stiff muscles (I walk)
Roberta Hutchison
I have had Systemic Limited Scleroderma since 1997. About 2 years ago I became so sick I wouldn't have minded dying. Then, one year ago I started taking AG1 supplement. After 3 months of daily drink, I felt much better! And now I feel like 'I have my life back'. I used to feel like I had a hangover every day. Now that's completely gone and I feel good and very good on some days. In particular, my digestion and circulation have improved. No more freezing feet in bed. Whatever my body needed, AG1 has it. I still have frequent fatigue and brain fog, but these are small issues compared to poor digestion. Good luck everyone!
Nusrat
What is AG1 , I am suffering same symptoms could you please help me out .
Regards
Nusrat
Suffered
I helped my self a lot by using whatever natural treatment I could find. My first target was digestive system: broken cell Chlorella, lots of fruits, removed eggs and milk from my diet, reduced red meat intake, used sage tea, lots of kefir drink for good bacteria, reduced coffee and eliminated processed sugar out of my diet. This resulted in regular sleep, highly reduced bloating, weight gain and energy increase. I also experimented with natural herbs and had great results for my blood flow: curcumin, grape seed extract, neem, sage, gotu kola, and Chinese herbs for blood flow such as white peony root. Adding zinc and vitamin d3 along with vitamins proved to be a very beneficial.
Nicola Whitehill
Thanks for sharing! I have also seen a remarkable improvement with my symptoms further to a diet change - http://raynaudsscleroderma.blogspot.co.uk/2017/04/diet-and-nutrition-of-raynauds.html
Emilia Pitrelli
I'm glad to see you took grape seed extract and it helped blood flow. . . I have scleroderma and I want to try that . . . the pressure in my pulmonary artery is going up and I have to see a specialist . . . I know the grape seed extract has a form of nitric oxide in it to help blood flow, but wasn't sure it was ok for a scleroderma patient.
Also I'd like to mention a helpful tip for others who have calcinosis due to Raynauds . . . you can make a bandage from a banana peel . . . soft part (pulp side down on top of the calcium "plug" area (put a bandage around to hold). . . leave it on overnight and depending on how hard the calcium plug is the "banana pulp" will release it . . . took about 2 weeks for a very hard plug to come out of my finger and if it's still liquid the calcium
, it will come out in a few days. . . . I've cured my fingers of the calcinosis plugs every time . . . Thanks for writing about the grape seed extract. . . Emilia
Ramesh
My 7 year old son has been suffering from past 2 years,it is very difficult as we parents going through and for him I don't no what he is going through because as a child he cannot express and we are also trying to understand him but one thing definitely I will cure him so please help me by references and hope that God will never punish his pupil like this type of deadly rarest desease any more
Nicola Whitehill
so sorry to see this - sending your son lots of wellness wishes... Does your son follow / know Wyatt the Warrior via Facebook? I think that they would be great buddies... http://raynaudsscleroderma.blogspot.co.uk/2017/03/wyatt-warrior-linear-scleroderma-and.html
Jay
My mom was diagnosed with systemic scleroderma in 1997 and she past away in the beginning of 2013. She was only 54. I miss my mom a lot.
Nicola Whitehill
sorry to see this Jay.... we must find the cure and cause... #SclerodermaFreeWorld
Subrat Mishra
My wife was diagnosed scleroderma , two years ago, recently she again having problems with getting up from floor or chairs,without grabbing some hold from her hands to pull herself, please let me know what treatment to be given her
Nicola Whitehill
sorry to see this.. here is the link to the UK guidelines:
http://raynaudsscleroderma.blogspot.co.uk/2017/04/uk-guidelines-for-treatment-and.html
this article may be of interest also:
http://raynaudsscleroderma.blogspot.co.uk/2017/03/living-dream-as-real-life-tin-man.html
H yoder
Some people have some success with dsmo and msm.
H yoder
Book by ; Stanley w. Jacob
MSM
The definitive guide
Lucky
I am suffering from scleroderma for last one year I have huge problem of skin tightening and darkening I need a tip for it
Joe
When is this world going to find a cure to help all the people suffering from this ??? All this sorry this ! Sorry that is BS!! Someone in some lab has got to know something . We are way to advanced to keep apologizing to people. Kids , Mothers, Fathers brothers and sisters this is ripping family’s apart!! The United States of America landed a man on the moon I’m sure we can find a cure please .
God bless everyone going through this hell I’ve been walking this road for 9 years now with my wife .
Dali
I was diagnosed almost a year ago.
I removed dairy, red meats,any white flour foods, legumes , soy and foods with lectin.
It has brought down my inflammation significantly my markers are almost normal I'm hopeful my next blood draw will be normal.
I take plaquenil and methotrexate along with diet.
Exercise does help it eases stiff muscles (I walk)
Dimpal
I am suffering from scleroderma for last two year I have huge problem of skin tightening and darkening I need a tip for it Please help me
Sourav
Hi,
I am at a very very early stage, still very little skin thickening, no pronounced raynauds,mild fatigue and acid reflux, presently only on calcium channel blockers amlodipine 2.5 mg for hypertension what can I do now to stop progression.
Janet van Zyl
I was diagnosed with aggressive scleroderma in February 2021. I am in terrible pain and not sure what to do. Feeling g scared
Janet
rewati kulkarni
Hi all -
I was suffering since March 2021, and even though my general practitioner suspected lupus, it took two years (January 2023) to get officially diagnosed with Scleroderma. I have Raynaud's, muscle pains, headaches, sometimes joint pains and in the first few months of the start of symptoms I lost about 7-8 kgs.
I have felt very hopeless and scared but then I came across the world of Naturopathy, Yoga and Ayurveda (more holistic health practices). I consulted with an Ayurvedic doctor for a few months and she recommended I do Abhyanga (oil massage) daily, together with Yoga. I modified my diet and now try to eat lots of vegetables, fruits and the 'good' grains - millets, quinoa, buckwheat etc. However, sometimes I do cheat and have some not-so-healthy things - I just don't have that much will power yet :/ but anyway, I try my best to eat as healthy as I can and do yoga and exercise, eat vitD and magnesium supplements. Good luck to everyone suffering from autoimmune and God bless.
Elizabeth Sanchez
I was diagnosed in 1985 as a young child. My skin was extremely hard and my legs were deformed. My hands ended up like claws. Dr's told me I wouldn't make it to be 10 years of age, which wasn't that far away. With the help of prednisone and alot of physical and occupational therapy, I went into recovery in 1986. It was a fight but I made it. I'm a very active 46 year old woman now. My skin feels great, even though I have small hands and my legs are very skinny. Over all I'm doing good. Would love to see a cure found for this disease one day.
Saima Mairaj
My son has also recently been diagnosed with this awful disease, and it’s so painful to watch him suffer. His inflammation is high, and I have been researching ways to bring it down. Many people are claiming that Black seed oil significantly brings down inflammation and cures many diseases. Has anyone tried it? I will try it and provide some feedback. I hope a cure can be found soon, and I pray that all the people suffering from this disease will soon be healed
Mary
I’ve had scleroderma for 27 years this July, it’s getting bad in my feet, the skin is so tight. I now have plantar fasciitis in both legs, hard to exercise/walk and toes are so swollen, especially in the humid hot weather here in the Midwest. Does anyone have the same problem? All I want to do is stay inside in the AC and my husband is an outdoorsman.
Matt
My wife and I have had great luck with controlling the scleroderma by gut health. There is a product called Restore along with probiotics, and no gluten. Her natural path doctor also found a parasite in her intestines from a trip to India. Getting rid of the parasite has appeared to put it into remission. Prayers to all.
SAJID ZAHOOR
I too am a proud Sceleroderma patient, proud coz I have acceptance now that it has come from God and only He can cure me of it. I have everything that's on the list Raynaud's, Crest, ILD and so on. Was diagnosed in 2004, still fighting. Taking 100 mg Azathioprine daily as part of a maintenance plan.
Delcia currie
I have had scleroderma for 35 years, I’m 77 years old, with lung involvement. I’m on oxygen 24/7, but manage fairly well looking after myself. I would like to find a way to improve the wrinkles in my face. Suggestions please?
susan
Laser, skin bleaching cream, ivermectin cream
Kelly Seely
I’m in remission due to Retuximab infusions. Nothing else helped me much, I had open sores on my arms that wouldn’t heal, I had all my fingers curl and I had 3 amputated. It’s an awful disease but they need to stop telling people they will die in 5 years
C.
It's a extremely CRUEL disease. Only with immunopresants medicines but the disease progress anyway. Why there's nothing yet to stop the collagen over production? The skin fibrosis. Why we have to suffer so much in silence because there's not much to do.
Also many rheumatologist are lost, they don't even know how to treat it correctly, what tests order, etc. (At least in my country).
I was misdiagnosed by the "director" of the Scleroderma association, with positive antibodies , positive ANAS, and she misdiagnosed me with fibromyalgia and depression.
Years that I could use to begin a treatment and slow down the progression.
Nobody should suffer from this condition. It's a nightmare everyday.
I don't have Scleroderma only but also other health conditions. And it's been difficult because rare conditions are difficult to diagnose and I pray God to find the right doctors that point je yo the right diagnosis.
I pray for a cure, and better treatments. #HOPE for Scleroderma
Warm regards!