Diagnosed with Diffuse Systematic Schelerderma

[naila_007]

Hi everyone,

Finally decided to join the online community

I was diagnosed in December 2016 and still having various tests.

At the moment and i hope it stays this way - i have a lot of skin involvement mainly my arms, hands and knees.

The way i look at it i can either let this thing "define" me or fight it! of course i am doing the latter.

Skin on my hands is so hard - any tips on how to soften.

Thanks.

Naila

[Maryjcl]

Hi Naila, I have just been diagnosed with the same and still getting my head around it all so it's great to be able to chat with people in the same boat. Naila I have been using coconut oil on my hands and feet and seems to help.

[naila_007 in reply to Maryjcl]

Hi Maryjcl,

I have been using coconut oil and yes it has helped a lot.

Also used flax seed oil for my knees.

Are you taking any immunesuppressents - i am very reluctant to take them - but skin involvement is rapid. Trying holistic therapies too.

[Maryjcl in reply to naila_007]

Hi Naila, I have just started taking mycophenolate, just starting my third. Week now, haven't noticed much difference as yet but it's early days so fingers crossed. Would just be happy to get a bit of energy back, I now know I will never be my old energetic self again but that's ok as I will find other ways to do things as this will not define me. What are you taking and is it helping?

[naila_007 in reply to Maryjcl]

Hi Maryjcl,

At the moment i am just taking nifidapine for the raynards. I met with one of my consultants yesterday and my organs are not affected apart from slight inflamation on a tiny part of my lungs. My skin is being affected at a rapid pace - so he has suggested either Methrotrexate or Mycophenolate, just so scared of the side effects. I try to be energetic but yes not to the same extreme i was before this came along - like you i will find other ways of doing things. Yes things take a bit longer, but i wont let it beat me. When i was first diagnosed i was just so lost, never been ill and when i do get something there is no cure and so rare.

I am trying accupunture, cupping, wax baths and massage therapy and aim to do my 10,000 steps a day. i want to start yoga and pilates but at the moment cant squat or sit crossed leg on the floor. Doing plenty of stretching at home though. just a little bit more movement in my hands and i will be happy

[Maryjcl in reply to naila_007]

Aw I know exactly what you mean as I have never ailed anything till now and like you I also have inflammation on my lung, is your breathing affected much?

[naila_007 in reply to Maryjcl]

No breathing affected - climb 2 flights stairs everymorning for work.

[Maryjcl in reply to naila_007]

That's good that you don't have that problem Naila. How about your skin? Mine is so tight and stretched that my breasts stand up on their own haha but so painful also my tummy is very swollen and tight and also painful. The other problem I have is my lip disappearing and unsightly lines round my mouth, does any of this sound familiar to you.

[Elaine_Hayes in reply to Maryjcl]

Yes my lips are disappearing too. And lines around my mouth. I use lots of lip cream, just makes me feel more comfortable.

[Maryjcl in reply to Elaine_Hayes]

Hi Elaine, it is unbelievable the lip is part of it all and the lines put years on you. They can sort it with fat from your bum cheeks!!

[naila_007 in reply to Maryjcl]

Hi Maryjc

My skin on my arms, hands, knees and in between thighs is very tight and stretched. Just moisturising every day. The lip thing yes just putting Vaseline on. Do you work?

[Maryjcl in reply to naila_007]

Hi Naila, no not working, do you struggle at work?

[naila_007 in reply to Maryjcl]

At the moment (touch wood) am ok at work. Have put me in touch with fellow suffers.

Also studying too!

[Maryjcl in reply to naila_007]

That's great that you can still work as I think we need to carry on as normal as we can. Good luck to you

[naila_007 in reply to Maryjcl]

Hi Maryjcl,

How you getting on with mycophenolate?

regards,

Naila

[Maryjcl in reply to naila_007]

Hi, how r u doing. Yes I'm fine on this and skin is a lot better xx

[naila_007 in reply to Maryjcl]

Yes - its helping. Just a bit reluctant to have the flu jab

have tightness around my hands - cant make a fist or bend down fully to pick up stuff - but i will keep soldiering on

[Maryjcl in reply to naila_007]

Aw I know that one, it's so hard some days. I have now been diagnosed with raynauds so winter should be fun! Take care xx

[Elaine_Hayes]

Yes I have the same, I moisturise every opportunity I have. I find regular baths help, and I go swimming everg week and always find a session in the steam room makes a massive difference to making my skin softer and I am sure it prevents splits. But of course they still occur. Yes it is a fight 😀

[tanya1981]

Hello Naila and welcome here! I admire your attitide - keep it up and stay focused on doing what's best for you! With diffuse systemic sclerosis, as fars as I know, it's hardest in the first couple of years - have you tried wax baths for the tighr skin? Coconut oil, aveeno, diprobase and other similar creams are all quite useful. It seems like you're still at work - do you mind me asking how old you are?

[naila_007 in reply to tanya1981]

Yep Tanya , still working. How abt u? I will be trying the wax bath next week with Occupational Therapy. And yes I use all the creams, but I find coconut oil the best. One thing I forgot to mention - has any 1 lost weight - now am putting my weight loss down to worry, stress and the unknown. And does any 1 take vitamins e.g. Omega 3

[tanya1981 in reply to naila_007]

Hi Naila,

I am 36 and working as well (on top of having a 2yo and a 5yo) so schedule is full on! Thankfully, my scleroderma sypmtoms at the moment are Raynauds related only - was diagnosed Aug'16- but I do fear the unknown... i also lost some weight when first diagnosed due to the stress involved - i really had no appetite for a couple of months at all. I am back where I was now.

As for supplements, i take Ginko biloba and sometimes vitamins

[naila_007]

Ps Tanya am 45

[Marinav]

Hi Naila,

I am also 45 and have the exact diagnosis you do... hands and arms are severely affected...diagnosed June 2016...second round of all internal organs this coming week...

I an currently on Methotrexate, Mycophenolate, IVIG in-home treatments once a month for 5 days straight and I'm on my 8th month. Seems to be alleviating symptoms slowly. I used to take pain meds every 4-5 hours and now I'm only taking 1 at night to help me sleep. Constant itching, I think this is the worst part of it. I am also a fighter and won't let this define me!! I have a two year old son...

[naila_007 in reply to Marinav]

Hi Marinav,

Nice to hear from you.

I have my second round of internal organ tests in the coming month.

Are you getting any side effects with the drugs? Apologies what is IVIG?

I take pain killers before i sleep too - at the moment cocodamol with coedine, they do help - but i just dislike taking them - some nights i will take 1 and other nights 2.

Also drink a glass milk with Tumeric.

[Marinav in reply to naila_007]

Intra-venous Immunoglobulin

I feel tired easily with low energy. I think that might be because of side effects

[LilaJoe]

Anyone with dryness due to sicca too? I can't have long baths due to this, so quick showers then plaster on ultra base cream. Not very feminine, but as l can't smell anything anyway,l just plough it on!

I hope the medication/ treatment is helping your skin Naila and Marinav.

Is the ivig set up at your home? How long do the infusions take? This seems like a full time job!

I have polymyosotis too so get tired muscles, l don't think it's a lung problem as my lung function tests were good.

Hope for improvements for everyone!