My mum started suffering with symptoms in March this year. She was diagnosed about a month ago with scleroderma but they don't know which form yet as she doesn't come under the three main categories. They have told her she is a person of interest.
It is affecting the skin on her feet and legs up to her knees and her hands and arms up to her elbows.
Her skins is very warm to the touch in these areas.
Her ankles, knees and wrists are very stiff limiting her mobility.
She gets shooting pains in her legs which feel like electric shocks.
She is constantly itching which is driving her mad she feels like screaming.
She is getting very little sleep. She has tried sleeping pills but they make her feel ill and aggravate her symptoms.
She has lost a lot of weight averaging 3 pounds a week. This is the first week she hasn't lost any weight.
Medication
She has been prescribed Mycophenolate Mofetil which she has been taking now for four weeks.
She is using Oilatum on her skin but it's only reducing the symptoms slightly.
My sister and I are very concerned about her mental state. She breakdowns down crying nearly every day and can't cope with the smallest of problems without having a meltdown. Last night she said she doesn't know how much longer she can go on if the itching doesn't stop. As she isn't sleeping much she isn't getting any respite.
Is it possible to get her referred to the Royal Free Hospital in London or is there another hospital/doctor anyone can recommend?
Can anyone recommend a cream to help with the itching?
Any advice would be greatly appreciated
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JBC19
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So sorry to hear that your Mum is not coping well at the moment. I’m still waiting full diagnosis but when my symptoms first started I went through a period of being angry, scared and worried about the future. Encourage your Mum to speak to her doctor, all I can say is I’ve come through this grieving process it was a hard bitter time but I’ve learnt to accept, but without giving in, the disability and limitations and to find other ways to live as normal a life as is possible. Give your Mum time to really process what is happening to her, I know it’s hard for you and your family but life will return to some normality albeit a different one. Just be there for her.
With regard to the itching I haven’t tried creams, it does drive you crazy, mine comes and goes. I fine antihistamine works for me, it can take a few minutes but the relief is huge., I take Desloratadine, but your Mum needs to speak to her doctor or at least a Pharmacist to make sure there are no contraindications with her other medications. I get mine on prescription, it does work for me but can’t tell you why it does. Wishing your Mum all the best and she is lucky to have you on her side. Take care and stay strong.
She appears to be starting off the same as I did 5 years ago. I am glad she has the mycophenolate. My podiatrist started me with a lymphatic therapy for my thighs and doing some pressure points in the shape of an “M” on my abdomen with deep breathing along with wrapping my calves. I did this therapy twice a week for about a month. I really think it saved my legs as it would be another 6 mos before getting an appointment with a rheumatologist for the mycophenolate. I think prednisone helped a bit before the mycophenolate.
I really think the itching for me was my blood vessels. Garlic seemed to really be a trigger for me. I had to avoid it for years. Also, I read alfalfa spouts should be avoided. I avoid sugar and limit intake of carbs. I take a low dose of amlodiphine. And try to stay hydrated with water. To calm the itch from the inside. I also take a RX for vitamin D. ( In earlier days, I was given oral liquid gabepentin for the itch and skin discomfort but it kept me sleepy).
I also find the connective tissues under my skin “knots” easily. So, I avoid rubbing it too aggressively. Even to give bloodwork for labs, I advise nurses to alcohol blot the area gently, to not rub . It’s ok to cry. It takes a bit of the stress and the confusion weight off. Ask her to love the new her and keep it moving as much as she can.
I am so sorry to hear this. I know how worried my daughters were when this happened to me last year. Like your mum I found myself in shock and totally fell apart. I didn’t recognise myself at all and developed very bad anxiety and panic, all of which was totally new to me. The advice above is all good advice.
For me, a combination of CBT (suggested by consultant), reducing stresses, eating well and being as active as I could were helpful but the key change came when I was advised to take antidepressants. This helped take away a lot of the anxiety and since then I have been able to cope much better with what is happening, I am much more like my old self.
I am under the care of the rheumatology team at Addenbrookes and they have been excellent. Dr Frances Hall, at Addenbrookes, is one of the few specialists in Scleroderma. I have not seen her but my consultant discusses my case with her. I don’t know whether you are anywhere near Cambridge but if you are I would try and get your mum referred to Dr Hall.
One of the most important things to me when I was at my lowest was the love and care of my family. You are doing a great thing by being there for your mum, she will value that and it will help her get through these difficult early days.
Take care of yourself as well as your mum. Everyone here will wish you well.
Helpful comments already as always on this site. I was diagnosed with systemic scleroderma in 2005 aged 47 after a year or so of developing symptoms. I was referred almost immediately to the specialist unit at the royal free, under Prof Denton who is just wonderful. On MMF for about three years then Hydroxychloriquine although I am never sure how much the disease was slowed by this. Regarding the itching -this came early in the disease and I hadn’t linked it quite as strongly to the disease at the time, but looking back it was pretty terrible, on my legs mainly, I thought it was an allergic reaction to the dogs we had at the time but I think perhaps it was exacerbated by them, the scleroderma was the main cause. Keeping the skin hydrated is really helpful, I find our tap water very hard in my area and dries my skin terribly.
I’m now 64. I have myosotis overlap syndrome so very sore muscles and gradual muscle loss and weakness in arms and legs . Persistent digital ulcers two of which are now in to a whole year of not healing which is a bit soul destroying despite intervention by gp and plastics unit at St George’s in Tooting.
The best move in my experience is to try and see the right people who understand what scleroderma and its complications involves so your mum can begin to learn what helps, some of the best advice I have had is from other patients whilst on the ward having iloprost infusions three times a year.
This for me was one of the harder stages of Scleroderma as the intense itching was hurrendous.
Firstly, is your mum under a Rheumatologist who specialises in Systemic Sclerosis ( Scleroderma)? If not you need a referral from your Dr as they can help tremendously. The Rheumatologist teams will refer your mum to other areas in the hospital to help eliviate the scratching e g Dermatology
I found it extremely difficult to stop the scratching which was all over my legs & feet. I felt like screaming too! My legs looked like I'd been badly sunburnt & were red hot. The problem is the more you itch the worse the situation is & then you can develop sores & even ulcers.
In the end I was bandaged up like a mummy. This was the only solution for me as I couldnt stop itching.. They used a steroid cream & the dressings had to be changed every 3/4 days. Then I was given ZipZoc dressings which are like poulice stockings. These have the ointment impregnated in the stocking
I tried numerous creams most very oily & in the end after a long battle Cetraban worked best for me. Ask for the one in a large pot rather than the cream.
I can totally understand how your mum feels as this scratching does push you to your limits. It's a difficult time for your mum & for you to witness her distress. You all need to rally round & support each other. The more you all learn about this disease the stronger you will be able to fight it. You all must feel so lost at the moment, a BIG hug from me!
I think in the end my itching subsided with a mixture of medication & the help from the Dermatology team. It is an ongoing battle with each individual reacting differently to medication & well being.
The weight loss is a concern too & that needs investigating. I lost a stone very quickly & the only symptom I had was extreme tiredness. After a referral again through my Rheumatology team it was found I had a clump of blood cells inside my stimach that were bleeding. I had Argon treatment which stopped the bleeding & then I was seen by a Dietician who advised me on what food to eat & what to avoid
This is why its SO important to be under a specialist team.
They can also refer your mum for Phycological sessions to help your mum on this frightening journey
Accompany your mum to any hospital appointments, take notes. Make a list of questions you think of and ask for help in any area. Ask if there are any conferences on Scleroderma planned that you & your mum can attend. I took a friend with me at the start of my journey & it helped him & me understand how many parts of the body this disease can affect including tge mind.
I hope you now feel that you're not alone in this journey & we fellow sufferers are here to pass on our individual experience & help in anyway possible.
Its a disease you will find the strength to fight & understand. Research is moving on so fast there is always another opportunity to help as situations arise.
My 55 year old daughter has scleroderma. She is now under the Royal Free to which she was referred. Suggest you contact the RF explaining the situation. Then press (& press!) your GP & consultant for a referral. My daughter is on Iloprost but so far does not have the same symptoms as your mother. “Only” cold & sore Raynaud fingers
Dear JBC19
I am so sorry to hear about your Mum. I also have battled with itching since my diagnosis three years ago. I was referred to a dermatologist and they have prescribed various emollients and antihistamines, the most effective lotions being Dermol and Eurax cream with the oral antihistamine Fexofendine, but everyone is different. I don't know if the following things have helped but I have changed to using hypoallergic soap for washing, do not wear tight clothing, apply a hot water bottle to where it is itching but this might not be good for your Mum if she has hot skin. I try and make sure that my temperature remains constant as any small change in my body temperature can be a trigger. When the itching gets really bad, I go for a walk as it seems to help though I don't know if this is possible for your Mum. Lastly, I have stopped drinking coffee as it seems to affect the blood flow in my arms. My consultant rheumatologist and dermatologist have said my itching is not related to my Scleroderma, but I beg to differ. I wonder if there is a local support group nearby. I joined my local one and have found it really helpful to speak to people who also have Scleroderma. Here is the link to finding one in your area.
When I was first diagnosed my itching was unbearable but over time it has lessened and is now manageable. I hope this will bring hope to you and your Mum and you find support from your mother's medical team as it makes all the difference. 🌸
dear hsbc 19 and so sorry to hear about your mum and thank goodness you are nearby to support her. She definitely needs to be seen by a specialist rheumatology team that know about sceloderma. I am in London and was diagnosed very quickly at The Whittington hospital through blood tests and a question and answer list three years ago at 66.
I feel your mum must be thinking why me, and grieving for her old self and the itching must be horrendous. I can’t help with the itching as I have never had it, though I also have lupus and myositis as well as systemic sceloderma.
As I had mentioned before the mycophenolate really helped (2 x 500gm twice a day) in suppressing my autoimmune system as well as the hydroxychloquine . I was put on 20mg of prednisolone at the start, now on 4mgs.
Good luck with the itching, there’s some really good ideas here. I am visiting my daughter in Zimbabwe atm, travelling with another daughter and her partner, who have been brilliant helping with the luggage.
There is little I can add to all the advice above. Also we all seem to have slightly different problems.
I was diagnosed with antisynthetase syndrome in April 2021 and it has certainly been a long road to getting a balance back to life. This can affect muscles, lungs and skin.
My main problem was lung damage so I now only have half the lung capacity that I had before. I was looked after very well by the local Respiratory team and control gained by using prednisalone and mycrophenalate initially.
I understand mycrophenalate does not necessarily kick in for a few months so it is a slow process.
After about a year I was then referred to a specialist team 50 miles away (because of their wider experience in this sort of unusual problem) and they suggested cutting down on the prednisalone because of the long term effects. Unfortunately as I cut down the skin problems emerged but at the moment I am luckily able to keep this under control using creams and ointments prescribed by the local dermatology team.
It has taken some time to get things sorted and it certainly is a grieving process to see ones life limited and to cope with uncertainty but I found concentrating on the things I can do – be it at a slower pace - helps.
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