Hi I'm 36 years old with a baby and a 5 year old. I have ILD, i'm very scared.
Does the skin thickening always progress? I have mottled skin all over my body for years but since diagnosis my muscles all over ache and are very tight, I don't know if that's the skin or muscles.
Also is the facial deformities common? My nose and lips have changed but not to the point where my teeth are visible.
I'm on the highest dose of mycophenolate mofetil and have been on this dose increasing for 6 months but my muscle weakness is a lot worse.
I understand there is no cure. My rheumatologist says we can put it to sleep. But does this mean the skin tightening etc will still continue?
I'm so confused 😐 and so scared of not fulfilling my life as a mum
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Aarts
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I was 31 when I was first diagnosed with diffuse systemic Scleroderma and ILD, with three children under three. My world imploded. This was 20 years ago and the prognosis was poor.
Twenty years later after many aggressive treatments I’m ok. I’m physically active and the proud mum of three wonderful young women who have grown up with Scleroderma.
I had methotrexate, cyclophosphamide, azathioprine but the wonder drug for me, of which I was one of the first to try, was mycophenolate. I am on the maximum dose and this has been a game changer for me.
It arrested my lung disease and initially improved some of my lung function.
My skin has tightened on my face with my nose and lips but I’m 53 now and my lips are not exposed and my skin in general is fairly good and you wouldn’t know I’ve got skin involvement.
My life is good and I have always been looked after a great team of specialists.
A very important thing is to remain positive as it has a real health benefit.
Try and join a support group. There are several around the country and the SRUK can point you in the right direction.
Wishing you a long and positive life with Scleroderma, best wishes and good luck x
Hi aarts. So sorry to hear the way you are feeling as it is almost a carbon copy of how I felt initially with the lung diagnosis. I was early 40’s with a young daughter - petrified I’d never see milestones n her life or mine. The years have been a struggle n continue to be unfortunately as I still have a lot of pain but this is more attributed to fibromyalgia rather than the scleroderma now. My lungs are relatively stable tho with highest dose mycophenolate n I am glad to say my daughter saw 14 last week n next month I will celebrate my 50th!!! The facial changes have all but consumed me at times as I have tried to explain to family n friends I wouldn’t have minded ageing. It’s the change to my appearance that is hard. I know two fellow sufferers with varying degrees of this tho so try not to be disheartened. It could all depend on your original features n the progression of the disease. I’m just so thankful to be here still and in the last few years the skin over all my body other than my hands n Face is loosening so it seems to be slowing down and my consultant says the illness is stable so this seems to be the way it goes as looking back on my notes I was deemed as progressive initially. Good luck on your journey n best wishes for the year ahead with your little family. This forum has been really helpful for me so you should post anytime you are feeling low or worried about anything. Take care xx
Firstly I'm so glad you have 2 replies from fellow sufferers who were diagnosed at an early age with our dreadful burden.
I can't imagine the shock at your age with a young family. I can truly understand your fears.
I was diagnosed at 63 with Acute Diffuse Cutaneous Systemic Sclerosis & had had an active & healthy life up to that point.
Be steered by your Rhuematologist, they are incredible with the support along our path & will do all in their power to halt this disease.
I believe Microphenolate has helped so many people stop the progress though sometimes it takes a while to kick in.
Dependant on the services at your hospital it may be possible to access Hydrotherapy, Physiotherapy, Physcological sessions etc.
Hydrotherapy for me was very beneficial, as, when you enter the water your whole body relaxes in the warm environment. I had 6 physio classes included which helped to gently ease your stiffened muscles. I then went each week on a self management scheme. I did this for over a year.
Continuing with gentle body exercises are important, which you can undertake at your own pace when you feel up for it.
The Physcological sessions were invaluable to help me deal with the complete lifestyle changes & challenges ahead. It stopped me being so hard on myself & was a great outlet for all my emotions. I personally found it easier to discuss my fears outside of my family & close friends as I didn't want them to worry.
Each individual case is so different it's impossible to compare one to another as individually we all react in a different way.
Its SO important to be positive & fight as hard as you can.
Do you know what your Roden score is? There is a scale from 0 to 51, it's an indication of your skin thickness. Ask your Consultant on your next visit.
If your appointment is not for a while see if you can speak to one of your team.
Write down a list of questions you wish to ask as its easy to forget some in all the confusion.
If you visit your Consultant take a partner or friend to write things down as it can be very overwhelming.
There are also many leaflets on how this disease affects your body. I have a binder full!!
I hope you now feel part of a community who are here for you always no matter how insignificant you feel it may be. You can always offload here as we are great listeners & individually have our own experiences to share.
Have a lovely New Year & here's to many Positive years ahead.
Thank you everyone. I just hope to get some relief from the medication and have made changes to support me but it's very very difficult to be positive as I feel very in the dark about the future. X
I can totally understand. I saw a counsellor n do meditation n recently have started yoga again. I know this might not be possible with a younger family to get the time to yourself to do this. The uncertainty of this illness n varying degrees of progression make it very difficult even for the experts to foretell so in time once you get maybe one lung function test under your belt without your lungs deteriorating or a clear echo result you start to build on your confidence n think to yourself ‘hey maybe I can beat this!’ Mortality is a huge worry with young children as your fear is for them n not yourself. The only thing I can say is nobody can predict the future or their destiny - healthy or otherwise so altho it is good to seek as much assurances as you can, it is best not to labour to much on this as I did myself as it is a stress related disease n best to try n limit your worries. Reading and googling can often give you the worst case scenario n I can tell you’ve I’ve survived about twice the amount of time some websites suggested n still no worse lung wise! I’m sure your young family bring you joy. I now have a 5 year old niece that brings me blessings every day with the funny things she’s says. Try n focus on that. Take care xx
You poor lady, you are right to reach out on this forum as I am sure some of the replies are a comfort to you. I have the milder form of scleroderma and was on MMF for some years and it really helped. The muscle aches are all part of it and if you can get into a pool/hydrotherapy/ yoga/Pilates then do as it really helps even though you might feel like curling up into a ball and taking to the bed.Link in with the rheumatology team ; Nurse,Physiotherapist, Occupational Therapist for additional support. Wishing you brighter days ahead
Hi, I'm on 1gram twice a day of mycophenolate and have been on this dose for about 2 years. I also take prednisolone and have gradually reduced that to 7.5mg a day. So far I've had no major problems apart from general tiredness which I believe is a side affect. I suffer from muscle weakness and stiffness and do a lot of walking to try and help. My rheumatologist has recommended physiotherapy. In general I would say mycophenolate has made a huge difference to my life. Very best wishes.
Hi, sorry this reply is late but have you looked at the Scleroderma News forum that Sophiebun11 has also recommended. This site has a many contributors and a lady called Lisa Baker posts many articles, warts and all, very honest emotions but also very positive and funny.She is a lady I think of similiar age and family circumstances to you and I think you would also get alot of help and confidence in reading her brilliant posts.
I am nearing 70 and worry about my pets so I cannot begin to think how much more you are worrying and going through. The one thing I do know from reading posts on this site is there are people out there who have had
this dreadful disease for 20, 40 years and are still here in this community.
My heart goes out to you in your circumstances but don’t
lose hope, treatments are getting better and perhaps a cure will come in the not too distant future.
I am new to all this but for such a rare disease it is heartening to know that the medical world seems to be
whole heartedly looking for that cure.
I wish you and your lovely family all the best in the world.
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