Does anyone have diffuse scleroderma?

[Roamer]

I've been diagnosed for a year now and have yet to find anyone who has the same version of the disease. It's been quite a year, but I'm keeping smiling. I'm on mycophenolate, nifedipine, ramipril and aspirin....so far....and iloprost (infusing as I speak!). Would be good to say hello to anyone in a similar position.

[Cherelle16]

hope you dont mind, but can i ask what yours looks like??

[Roamer]

Well, to the untrained eye I don't think you'd notice. Outwardly, the main sign is my hands - the skin on some of my fingers is really tight and joints are stiff. My fingers are always cold and sore. Back in April I had thickened skin over my hands, arms, legs, face and chest, but they started me on mycophenolate and now it's much better - it's just my hands and torso that feel really tight now. I've also had issues with painful tendons and joints which was affecting my mobility a bit. I do physio each day now and that helps a lot to keep me from stiffening up. It's a learning curve. On the plus side I don't reckon I'll be needing any botox!

[Cherelle16]

i have exactly the same as you, my hands are the worst, they get freezing cold and really sore. All my joints are really stiff in my body which has resricted me from doing things i used to like gymnastics. The noticible path is on my leg and that very tight skin and its a purple colour and that gets very sore sometimes.

[cookie74]

hi, i have the same,, very bad ulcers on fingers and now on my knuckles, which hurt real bad,, cant make a fist with either,just been on ilprost 2 week ago too,, i thought i was going barmy with the stiffness and joint pain,, got told im over weight!! dont exercise enough!! i even started to believe i was fine nothing wrong, and im single with 4 children to look after,,so i get plenty of exercise lol, after 15 years i changed consultants, 3 week later i had bloodclots, so now on meds for that,, then i joined this website,, n gosh as it made a difference just reading there are orther ppl suffering like me too, and learnt alot in the past week,, i ave other problems,, reflux bad,, cant swollow properly,, i am going saturday for mri scan,, first time ever, thanx to a new consultant,, x

[Roamer]

I'm a very active person and found it very difficult to be limited by my body. I am learning to adapt and find ways round issues so I can still do the things that I enjoy. Perhaps you will be able to find something for your fingers so that you can play comfortably, and stretches so that you can get back to gymnastics. Where there's a will there's a way

[zenabb]

Try exercises: livestrong.com/article or: sclerodermatt.org/article

[Roamer]

In agreement that this site is great - so glad that I found it.

Good luck with the MRI. I found it surprisingly noisy, if they say that you can take music don't bother with anything calming as you'll not hear it.....heavy metal is more suited

[SandraMarie]

I am a ballet teacher and have had no problems keeping this up until now. After 25 years of teaching I am having to succumb. My condition is internal as well as external and has gradually been creeping through my digestive system. Over the years I've learnt to deal with each issue as it has occurred. It hasn't been easy, and the eating and digesting of food has been the hardest, I would say. My dancing has also kept me sane through the process, when sometimes I have felt terribly depressed, even just simple skipping and galloping has been amazingly uplifting, and of course, in turn has helped to keep a level of flexibility in the body. It has now got my lungs and I am having to make the decision to stop teaching, but am determined to find other interests to keep the depression at bay. Keep moving and keep smiling !

[living-the-dream-ssc-ray]

I have had diffuse scleroderma for 14 years ! I was 24 at the time of having the rug pulled from under my feet ! I was one of the first patients to have mycophenolate - it was the last chance saloon for me as if I did not respond to it I would have had to have stem cell therapy, since I had not responded to cyclophosphamide, hydroxychloroquine, tacrolimus, Neoral or any of the steroids which I had been prescribed !

so thank goodness the mycophenolate worked - I was taking 2g a day as well as running around a court room as a barrister. Unfortunately at the time of weaning me off it, after 5 years, I had to stop work as it was too much for me. But I have to say the Mycophenolate did its job in that my skin is not as tight or as painful and I have quite hairy arms, which the only person to get excited by my hairy arms is Prof Denton haha !

I have minimal organ involvement which of course I have yearly checks. I am also very rigid with my skincare routine - I bathe daily in Oilatum (nice warm bath helps the circulation), creme with Hydromol and I have recently started using PawPaw creme which has healed ulcers which have been giving me agony for years, as well as the paw paw creme making my skin less tight and easing the lines around my mouth ! I feel like jumping from the roof tops (if only I was able to) about how good this creme is as I have tried all sorts over the years but nothing with results like this! Mcarthur natural products make the creme if anyone fancies giving it a go?!

Since I am currently not able to work in my dream job (or what I thought was my dream job), I will not take anymore tablets other tham omeprazole when the acid is unbearable, and co-proxamol when the pain becomes unbearable - i am trying to stabalise and heal my body by the holistic way - diet / massage / keeping warm. I have had 3 Iloprost infusions in the past and i have promised myself I will NEVER do that to myself again as the side effects for me are horrendous ! I would rather be under house arrest all winter, which is my current situation and dressed as an eskimo indoors, than go through that ever again !

I have had a 6month dose of Bosentan this year, which helped the symptoms of the Raynauds in that I felt warmer and had fewer ulcers on my hands and toes. I am currently waiting on the result of a funding bid for another 6 months supply of Bosentan ! i can not tolerate any of the other blood pressure drugs - nifedipine etc as I get too dizzy on them with a head ache !

I have to say Prof Denton at the Royal Free is THE daddy of this condition, and having had an awesome teacher in Prof Black. These 2 professionals gave me hope as well as saved my life (no drama intended!), so I would recommend anybody with this diagnosis be referred to Prof Denton and his team, even if it means there is shared care with your local hospital ( thats what I do and it works fine).

Also I have been reading case histories whereby Edgar Cayce was healing patients with Scleroderma in the 1920s in America - how amazing is that? and he didnt have any of the immunosupressive agents available to him which have been put into my body ! so I have started watching my diet, and having my hands and feet massaged twice a week with Castor oil as well as my other skincare routine outlined above !

I hope my 'not so easy as walking in the park living with scleroderma experience' helps others ! I am grateful to the other people throughout the years who have had to endure such harsh treatments to enable the medics to have the understanding they have so far.

[cookie74]

im on bosentan,, and have been for the past 2 year,,twice a day, WAS going in for ilprost every 6 week,, but things happend n i walked out,, and now have it every 3 months, ( i think it helps ), and i have heard great things about Prof Denton!! but my gp as said that PRESTON wouldnt fund it?? a friend of my mum goes down to LONDON to see him. I ave had scleorderma for 18 year n Raynauds for 20 year, got to admitt its hit me hard the last 6 month,, and for the first time ever, its hit home how bad it is and how bad it can get. i cant grab things with my right hand ( and yep im right handed!!) keep dropping things,,then i get so upset/angry, i get in a tither, then gotta fight for breathe,never heard of ( pawpaw ) creme?? can u buy it?? lol

[living-the-dream-ssc-ray]

Hi cookie ! Im based in Southport and go to the Royal Free twice a year and Southport twice a year ! I think you are witihin your patient care rights to ask your GP to refer you to see Prof Denton ?! Alternatively change your GP ! I must admit that I have been very lucky with the support I have received from all the medical professionals. i can totally relate to dropping things - its like having cold butter fingers !

the pawpaw creme is available on makeuwell.com.au Luckily for me I was introduced to it a few months ago- I have had to wear fleece lined tracksuit bottoms for a few years now due to ulcers and calcinosis on my knees - after 3 weeks of putting the creme on my left knee, the ulcer which had been giving me grief for a year had healed ! I have put the before and after photos on the photo gallery of Mcarthur's Natural Products facebook site if you want to check them out ? I was quite embarrassed at posting my halloween pictures but the results have been so amazing, I have to share them !

Also I have tried to retrain my brain and thoughts when I start to get frustrated and angry with the symptoms and lack of mobility challenges ! I also stay away from stressful situations and people as I believe scleroderma thrives on stress and frustration and I only want happy feelings flowing through my body, so that the scleroderma pushes off ! This maybe me in my fairy land but it is helping with the coping of the circumstances ! Which is why I share with you and hope that I havent sounded patronising or offended you in anyway ?!

I hope the paw paw miracle works for you also

[sgbee]

I am from the US and it is always good to read about "silver gloves" and "pawpaw" cream--is there a vendor for these in the US? Thanks for all of your good recommendations!

I too have diffuse scleroderma and raynauds and now sjogrens. The last one came along 5 years ago and caught me by surprise! Who knew they come in threes?

But I am fortunate. Between my doctors keeping on top of things and ME keeping myself educated, we've headed off kidney involvement--that darn scleroderma tried to hit me there--lung involvement, and most heart--I have one valve that has a bit of the stiffening but seems to be staying the same now. I did have the hard skin over most of my body, but most of it has softened over the years. However, I too drop things all the time and have lost a lot of the feeling in the tips of my fingers--from Raynauds, I'm guessing. But no ulcers yet.

My poor esophagus is a mess, but I cope. My mouth is tiny and tight but I'm usually okay with it. The aching of muscles and joints has eased up too. EXCEPT for the pain from sjogrens. But I'm hoping that it will pass over time. I'm glad--yet not glad--to hear that I am not the only one who has to cope with depression.

Meds: accupril for the kidneys, d. penicillamene for whatever, prevacid for the esophagus and quinapril for the sjogrens. Not too bad.

[Nancy-70 in reply to sgbee]

I too am from the US and have Diffuse Scleroderma. I also am intersted in the Silver Gloves and Paw Paw Creame. I would like to also know if there is anyone in the US that sells these products. I have Raynoads and very stiff hands and feet making it difficult to walk or pick up anything. I also have digestive problems and am now on medication for a little heart issue thats probably related to Scleroderma. I am tested every year for lung and Kidney issues. so far only a little stiffness in the lung. Thank you all for being here for me. It helps so much to know you are not alone. I get depressed sometimes.

[cookie74]

thank-you living- the -dream -ssc-ray n for the website,, and the bath thing!! i love it when im in..... but as soon as i get out,, oh my gosh,,must take a good hour b4 i get warm tried heating on,,, then left it on a few hours b4 i get in,,even towels on radiators,,d/gown on radiator,, i dread a bath now lol well the gettin out bit,,ty for the advice too, its good to communicate with ppl who know what im on about ,x

[Roamer]

Thanks for all the replies folks. It's good to read about other's experiences with this crazy condition.

I'm on 2 grams a day of mycophenolate. I was offered that or cyclophosphamide, the former being the much preferred option as far as I was concerned. Touch wood it's working

I can't fault my medical team, they've been brilliant so far and I think that must really make a difference.

[Sienna]

I have diffuse Scleroderma also. I was diagnosed in 1975 at the age of 27. So that makes it 36 years that I have put up with this dreaded disease. At the time of diagnoses they didn't have all of the medications that they have now, so I actually took nothing. They tried some medicine to dialate the blood vessels in my fingers but it did not work. three years after being diagnosed with scleroderma I was diagnosed with poly myositis (inflamation of all my muscles) I was put on prednisone and have been on a low dose of it ever since. Most of my problems have been with my hands, intestional tract, esophagus and now my heart. I think we all have been depressed at one time or another. Just try to be as positive as you can be. if you need to talk or vent just give me a jingle. take care and have a Merry Christmas. Sharon

[cherylann]

I also have diffuse scleroderma. I was diagnosed 10 years ago. I have suffered with raynauds for fifteen years. I suffer with severe ulcers on my fingers, acid reflux, small mouth, extreme exhaustion, ruptured tendons, joint pain, and lung problems. I have had to stop working and I really miss it. It can be very depressing, but it helps to have a sense of humor. Hang in there.

[Roamer]

It's nice not to feel so alone. Thanks for the replies and sending best wishes to you all x

[Jacksons_dad]

Mine is just the same! How are you progressing now?

[mad4cavs]

just been diagnosed on thursday gone i am starting mycophenolate after christmas,i am also on losartan 100 mgs its all very new to me consultant thinks the chemo i had for breast cancer triggered it, i have a small mouth my hands are tight i keep dropping things,hands very tender,i have acid reflux,my skin is very tight,across my chest and neck my joints and tendons are very painful one good thing ive lost my bingo wings and double chin lol dr wants me to take steroids but im reluctant,because of the side effects,i felt ill on them last year when i was on chemo,just so fed up of all these meds