Hi all, I have only recently been diagnosed SSc and have seen a rather rapid increase in progression of the skin and joint (and raynauds). After my 6m follow up with Professor Denton, he advised I start with hydroxychloroquine (for 4m until my baby is weaned off the breast when he is 12m old) and then straight onto mycophenolate.
I'm curious whether you've had to make adjustments around your life being on immunosuppressants. My son will be off to nursery in 4m and I'm sure will be exposed to a whole host of germs.
My emphasis is on creating lovely memories with my family, but I want to be able to be well enough to do all those things and not be ill all the time.
Any guidance? Appreciate that the disease (and impact) is also so individual, so I'm just looking for the impact it's had on you and how you've dealt with it and any considerations you've made. TIA!
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hi there. Sorry you were recently diagnosed with SSc - particularly at this stage in your life with a little one. I’ve been diagnosed with various autoimmune conditions for much of my life and also not diagnosed with others which were running riot through pregnancy and when my kids were born and growing up. With hindsight I can see the impact this had on me and my parenting.
I look back now and recall how endlessly tired and lacking I felt - slightly ratty and never as fun or enthused as I’d like to have been although we are all very close and they have all prospered as young adults. With what I know now to have been untreated hypothyroidism, connective tissue disease - SSc and Sjogrens evolving in my gut - I was often nodding off or suffering abdominal troubles, self diagnosed as IBS and gastritis. My Raynaud’s and joint problems didn’t kick off until later on with arrival of an early menopause.
I’m now maximally treated on Mycophenolate, Levothyroxine and Iloprost plus others such as Losartan and Vit D, B12 etc. I don’t have young children now - no grandkids yet either so I don’t have this particular worry - and I can see it’s a big concern.
But Professor Denton will have factored this in I’m sure and to be honest I have always been at my sickest when untreated. I did and do still shield from Covid to an extent. But I found out that- by having a week off my Mycophenolate (I’m on maximum dose) from day one of each of the six Covid vaccines (and also flu and pneumovax ) - I have mounted a very strong immune response to these. So blood tests (monitor my health - home testing kit sent in to an nhs lab) have recently shown. I did seek advice from a rheumatology registrar in 2021 on this and am so glad I followed his informal suggestion as it meant I could see my young adult family for visits without worrying unduly.
So it would be worth asking prof Denton about this and be sure to get all vaccines done prior to starting if possible.
Otherwise Mycophenolate has been side effect free and gold dust for me personally. Best of luck 😊
Oh that's really interesting - and reassuring to hear as you've had quite a lot of exposure. I've had the chicken pox vaccine, as I'm not immune to the varicella virus, so hopefully avoided that. Thank you!
Thank you so much! It really is incredible for we begin to become even more in tune with our bodies! I've been diligently taking notes and pictures since my very first symptoms, so there is a lot of data! I'm really pleased that you've found a routine that works and, importantly, your body is responding well to treatment. That's half the battle isn't it? I'm up to date on my covid jabs, but will enquire about the flu and pneumovax too! Especially coming out of winter! Very helpful!
I’m so pleased if you feel that outlining my own experience has helped. 😊. To be honest the long years in delays in diagnosis and treatments has caused a lot of damage so I try to explain to younger people now how much this impacted on me and my young family with hindsight. There are always risks from medications and always stuff to weigh up short and long term. But this is prof Denton’s expertise so I’d be inclined to trust him first and foremost. X
Hi Tia, I am sorry you have been diagnosed with Ssc. I know how you feel. I have been diagnosed in 2021 as well and been very worried with lots of pain in my upper body and in general which I still have but is moderate now as I am on Gabapentin as well as Mycophenolate and other medication for raynauds and acid reflux.
The swelling on my hands improved and the skin softened and stopped itching. I just have to be carefull and have the flue, Covid vaccines as it will affect you bit more that before if you get a cold. But in general I am trying to be positive and live a normal life. Limited exposure to sun which is a pain as I loved going to the beach but using lotions with higher uva protection I can still enjoy a bit of sun.
Hi Miha, it really is devastating, but I'm thankful that we're under the best, specialist care and we got diagnosed (relatively) quickly! It's easy to get lost in Dr Google, lol and get really down about it, but we're trying to stay positive and take everything as it comes.
Glad to hear that the medication has had some effect on your skin. The daily burning gets annoying at times and I'm realising that my skin is tightening and limiting what I can do easily (like open bottles etc) - but I'm hoping for stability and reduced progression! Sending you support ❤️
Hi, I'm sorry to hear that you've had this diagnosis. I'm on mycophenolate and haven't had any bad side effects, except I caught a lot of colds at the end of 2019 so stopped taking it for a few months. During that time my inflammation and tight skin returned, so I went back to the mycophenolate and have been fine since then. I had all the extra covid jabs and had a very mild dose of covid once. I hope everything goes well for you and your baby too. 😍
Thank you so much! Modern medicine is truly revolutionary isn't it? It's good to see evidence of it working - especially as you just never know sometimes! The consensus is little to no terrible side effects, so crossing fingers for me!
Hi, I'm so sorry you've been diagnosed with this, especially when you have a little one. I have diffuse SSc, and was also diagnosed fairly young as you are (late twenties for me). I also had very rapid skin tightening, joint issues and Raynaud's (and lung fibrosis).
Mycophenolate has been a real God-send to me in several ways:
-Skin: Over time, it has reduced some of the skin tightening, which previously had been so bad that just bending my arms would tear the skin at my elbows. It tends to work that the skin that was latest to tighten is the first to soften again, so the skin on my upper arms is a lot better, although I still have tight skin on my lower arms and hands.
-Joints: It also reduced the inflammation in my body which was causing the joint pain. Before mycophenolate I would have a lot of hip pain (to the point of limping) if I walked for more than 30 mins, but I don't get any hip pain at all now, even on long walks. It also reduced swelling around my joints, which has allowed me to regain some of the flexibility I lost (e.g. things like crouching or kneeling are a bit easier than they were, although not back to normal). This all makes a big difference to quality of life.
-Lungs: My lungs have stayed pretty stable since being on mycophenolate, which has been a huge benefit. I probably had scleroderma for at least a couple of years before I saw Prof Denton's team and was put on mycophenolate, so if you can get on it early and prevent any lung damage (or prevent any worsening of damage), that's a big win!
In terms of adjustments I've had to make, I am more careful about being around people who are ill, although pre-Covid I worked in an open-plan office in quite a big company, so wasn't shut away from people. I don't tend to get more colds than other people (probably fewer actually, because my immune system is still so overactive), but if I do get a cold I'm more prone to it turning into a chest infection (because of the lung fibrosis), and sometimes find the cold harder to shift. But a course of antibiotics is usually all I need to clear a chest infection.
I've been told to avoid people with chicken pox or shingles, as this is more of a risk when on immunosuppressants, and obviously I've been really careful to avoid Covid (I still wear FFP2 masks on the train or tube). But it's worth bearing in mind that there are also lots of simple things you can do that add up - like hand-washing, keeping regular-contact surfaces (like door handles) clean, changing hand towels regularly, getting all the vaccines offered, etc.
For me, the benefits of mycophenolate have been huge, and have helped me retain the ability to do normal tasks like clean my house, do gardening, exercise, etc. These were all things I found very difficult when I was first diagnosed. So definitely weigh up the benefit of retaining your ability to do things like run round after your little one, kneel down to play on the floor, etc. And also the preventative aspects of the drug, like preventing lung damage, which is really common in SSc.
The other thing to bear in mind is that diffuse SSc tends to be really aggressive for 3-5 years, and then plateaus. So my understanding is that the aim of mycophenolate is to prevent the damage that would otherwise be caused during that time. You'd probably then be (slowly) weaned off the drug as your disease became less active. I'm now on a reduced dose, which is gradually being tapered down, as I've had scleroderma for about 13 years now. So it doesn't mean you'll be on the drug forever.
And finally, just to say that Prof Denton and his team are the best! They really are so knowledgeable and experts in this field, and are pioneering research into SSc. So you're in good hands with them. They'll keep monitoring you, and you can feedback about how you're getting on. If you did happen to find you were getting a lot of infections, then they can advise what's best to do at that point.
I hope that helps. Sorry about the essay! If you have any questions, just shout.
Wow! I'm really appreciative that you've taken time to write this! As someone who is in the thick of life, I've had mixed feelings about the outcomes and what this means for our family and the experiences I can enjoy with them. But, then I realise I'm in an incredibly fortunate position to have been diagnosed relatively early and the benefits outweigh the sacrifices. For example, we've been told that it's not advisable to have another baby in the active stages over the next few years, so have quickly made peace with having the one at 38. 😊
I did another lung function test and although the results were on the low side of normal, the CT of my lungs came back clear! So that's a plus - no fibrosis. Prof Denton was keen to prevent any progression, particularly of lungs as you have advised.
Your practical experience and that of the community has been really reassuring in this dark and scary time. I do find myself coming to tears at times, but I'm trying to control the controllables and find practical ways to control what I can to live a full life.
Thank you so much again! Sending support and hoping your condition continues to remain stable and manageable. ❤
Getting a diagnosis of SSc is an unexpected thing, so it's normal to take a while to adjust to it and what it means for you and your family. I guess there's also an element of grieving for the life you thought you'd have too, so it's important to be kind to yourself and give yourself time.
That's excellent news that your lung function tests were in the normal range and that the CT came back clear. It sounds like you've caught things in time, and hopefully the meds will prevent any further progression.
In terms of what it means for your family, it is really tough to not be able to have another child if you wanted one, but it's great that you have the one already. Unfortunately, it's not been an option for me to have children because I was diagnosed just a couple of years after getting married and the disease has remained too active, so I've needed the drugs to control it. My husband finds this particularly hard, but we try to focus on all that we do have and be grateful for that. But don't overlook the effect these things can have on you mentally, and be kind to yourself as you come to terms with it all.
In terms of the impact on experiences you can have with your family, I think you can be really optimistic, especially as it's been picked up so early. For me, it took a little bit of time for the meds to get things under control and reduce some of the inflammation and fatigue (but it sounds like my symptoms were much further advanced than yours), but after that life was a lot more normal again. The main thing I struggle with now is the cold (both Raynaud's and generally feeling cold), so during the winter I struggle with outdoors activities when it's really cold. But I've read about other people with severe Raynaud's who manage to go skiing or regularly watch their children do outdoor sports, so it's all possible. It's a case of working out the combination of meds, clothing, gadgets, etc, that work for you. And if it's something you're motivated to do, then you'll find a way. And for any other symptoms you hit along the way, there'll be various treatment options or workarounds to deal with it. My life is pretty normal other than dealing with the cold - I work full time, manage housework, shopping, gardening, etc. fine, have holidays and travel, have done volunteer work alongside work some of the time, and regularly meet up with friends and family. So I hope it's the same for you, and the SSc doesn't impact too much on everyday life.
The other thing to bear in mind is that new treatments and meds are being discovered and released all the time (Prof Denton will be able to advise on the most up-to-date treatments). Even in the 13 years I've had SSc, lots of new treatments have been released, such as new drugs to manage Raynaud's (which have made a huge difference to me and my quality of life), and new screening tools to pick up any complications early before they cause damage. So the outlook for SSC is a lot more positive nowadays. Beware reading about SSc online, as a lot of the info is out of date - it really freaked me out when I was first diagnosed and read online about life expectancies!!
I hope the treatments make a big difference to you. And take care of yourself as you navigate this change of circumstances.
Thank you so much! You relating your experience has been really helpful and comforting, so thank you. I'm sure you have experimented with loads of gadgets for your raynauds, but for the last 2 years, I've exclusively worn thermrup heated insoles. They're battery operated and has been a real life saver for maintaining an outdoor lifestyle. I use them all year round and have two just in case something happens. They're imported from Germany, and are a bit pricey, but it's a small price to pay.
Sorry to read that you have recently been diagnosed with Scleroderma, I can’t begin to imagine how you are feeling especially with such a young baby. The info that people have given is so helpful and uplifting, all I can add is try not to let this horrible illness spoil the joy of this special time with your new baby.
Can I ask, when you mention skin tightening do you have thickened or hard skin as well or just the tightening?
Take care and be proud of yourself that despite the onset of Scleroderma and the trials and tribulations of getting diagnosed you have created your own little miracle! This will undoubtedly give you comfort, love and a way forward. My 38 year old daughter has recently been diagnosed with secondary Raunauds and is showing other symptoms too, the symptoms have just started in the last three weeks so I am very worried for her. I am finding it very difficult to deal with my own escalating symptoms and can’t believe this is also happening to her, plus the guilt that I may have passed this on. Life seems so unfair at times doesn’t it.
Wishing you all the very best from one mum to another.
❤️ Sending you love and support. Since giving birth, my condition has progressed quite rapidly. I had almost no raynauds in pregnancy and very very slight skin tightening on the hands, that has since corrected itself.
Fast forward 4 months from birth, my tightening is back and consistent. No hardening - but very tight skin with burning around my wrist and generally across my hands, neck and collarbone. It's uncomfortable to do things at times, but I'm very hopeful that the drugs will slow progression.
I feel like I've had so much time to research and read that it doesn't get me down as much anymore. Your daughter has you trug your experience and she, I'm sure will be grateful for that in some ways - that you can share experiences and discuss the course of action and ways to alleviate it.
Life is tough... but let's count the small blessings. Key, as you know for your daughter, is to diagnose and begin treatment ASAP. Is she able to get a referral to the Scleroderma clinic at the Royal free?
Sorry I haven’t replied sooner I’ve had a virus for the past 10 days. Sorry also to hear that your condition is progressing rapidly, I hope you have plenty of help and support with your little one. I feel that we probably don’t ever fully come to terms with illness but learn to live and adapt our lives to it and as you say count our blessings.
Thank you for answering my skin tightening query, the tightening you describe is exactly like mine, tightening but no hardening, it started in my feet, face, neck,back and now in my hands and arms, I find it really painful in my hands though. Unfortunately I’m still 2 years down the line still waiting for a final diagnosis, I have many other symptoms too. I’ve not been diagnosed because they say I need to have hard skin as well. I’m very concerned now that my daughter might have the same delay in diagnosis and treatment not given. She has private health insurance (through her job) so has been referred to a Specialist in two weeks, which is a relief. Depending on the outcome I will urge her to try and get a referral to the Royal Free. Take care.
I was given a leaflet by the Royal Free with recommendations for creams, soaps, vitamins, etc. (ask if you havenlt received this yet). But to be honest, I've tended to discover other things that work for me by accident.
I've always had quite sensitive skin, so tend to choose products that work for that anyway. In terms of creams, I've found the Body Shop Hemp cream (body butter and especially the hand cream) are great - they're quite rich and soothing - so good for putting on your hands before you go to sleep. For really dry or chapped hands, the Neutrogena Norwegian Formula concentrated hand cream is great for repairing and moisturising hands overnight.
For my face, I used an Olay (possibly 'Total Effects'?) moisturiser with an SPF in for quite a few years, and at the moment I'm using a No7 one (because I got it free!) - but I think it's possibly more about applying a decent moisturiser regularly, than which specific one you use.
For washing, I find a gentle bar soap like Palmolive much better than liquid hand soap - liquid soap makes my hands really dry and chapped. And I tend to use shower gels that are moisturising and not too heavily scented ('Palmolive Naturals' and 'Simple' are ones I often use).
And it might sound obvious, but wearing washing up/disposable gloves for things like cleaning makes a big difference, as it prevents your hands coming into contact with excess water and chemicals that will dry them out.
Hi. I've been on mycophenolate for 3 years. 2grams per day. I've had no side effects so far but I have blood tests at 3 month intervals. I take precautions when I'm out such as avoiding crowded areas and wearing a mask if I think it prudent to do so. So far so good as it hasn't really had any impact on my daily routine although as I'm retired I can easily adjust my routine if necessary. Good Luck.
Thank you for taking the time to respond. We're in the thick of life and hoping to live as full a life as possible - filled with memories. Your considerations are very helpful. We'll start with that and adapt as we go! 😊
Hi,So sorry to hear of your diagnosis, it is a big shock!
I was diagnosed in 2017 & my case was extremely aggressive.
I was placed on Microphenolate but this did nothing to stop the fast progression.
My Rodan score was over 20 at my 1st appointment in July 2017. By Dec 2017 it had moved to 48, the highest & worst score being 51!
I have heard so many good reports about Prof Denton so be assured that he will do the utmost for you individually.
I was 63 when diagnosed & it changed my life completely. Albeit my case was very severe.
However I was extremely lucky to be offered stem cell treatment as non of my organs had been affected. For me it has been a life changer & I can now do most things which were taken away from me.
You learn to adapt to a "new" me. The main thing is to try & remain as positive as possible & keep fighting!
You will need the support of your family & friends through this journey.
Good luck & please come back to me with any concerns.
Thank you so much. It was indeed a very big shock, but we've had time to come to terms with the possibilities since the first symptoms, the various tests, and the diagnosis. Everyone has been remarkable and we know we're under the best care! You're right.. a positive mindset, really is necessary - especially when everyone around you is losing their head. Lol. Wishing you continued management of your condition! 😊
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