Hi i was wondering if anyone can offer any advice / recommendations on where i would find a Sceloderma specialist? I live in N.Ireland but as far as i can tell there doesn't seem to be any specialist in Sceloderma in this area. Is there any specialist in Scotland or the North of England anyone could recommend? I have heard great reports about Professor Denton's clinic in London, can you get a referral from your GP, even if you live in another area of the UK to see him? Also does he see patients privately?
Advice on Scleroderma specialist. - Scleroderma & Ray...
Advice on Scleroderma specialist.
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Lucyscure
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I see Professor Denton, and live in the midlands. My GP just wrote a letter of referral
Yes Professor Denton and his team are marvellous and very friendly. My GP gave me a referral to Royal free where the team are.
Thank so much for the recommendation, I have heard wonderful things about professor Denton and his team.
Thank you so much for your recommendation, i will definitely ask my GP about a referral letter.
Did it cause problems with your local rheumatologist??
Hi there. I’m unable to answer your antibody questions because I’m not knowledgeable enough but some of us defy boxes I’ve found. On subject of a dedicated scleroderma specialist - my Scottish hospital has a clinic but the lead professor retired and I lost my way with them so I ended up under general rheumatology instead. My rheumatologist specialises in Lupus but for me that has been okay as she is very kind and has agreed to keep and treat me despite the Scleroderma antibody.
If I could have seen Prof Denton then that would have been ideal - but the out of area thing is a problem here in Scotland for all but one-off or very serious cases they can’t deal with locally.
As things stand I’m very happy with my rheumatologist - however she does sometimes defer to her scleroderma colleagues. I think the disease may be manifesting more obviously now in my skin and gut but as I have overlap with Sjögren’s and with EDS - it’s not that clear - another reason I chose to stay put for the time being. I did ask her if that’s okay given the specific y of my antibody and she seems happy to keep me as long as it doesn’t show as my main disease. So I will just have to hope that it doesn’t even if that’s looking less and less likely. For me I’m happier under general rheumatology with someone who is very good.
Thanks for the reply, i know i've asked a lot of questions the last day or two and i appreciate you taking the time to answer them all. I think regarding the antibodies, it can prove to be very complex and as you say do not fit into definitive categories of disease type.
I'm glad to that your happy with the treatment of your rheumatologist and that she will ask the her Sceloderma colleagues if there is something she isn't sure about, regarding your specific case. I'm sure it gaves you a lot of reassurance in her and i imagine that if she's a lupus specialist she would already know a lot about other connective diseases too. Furthermore, even if she doesn't, the fact that she can admit that certain aspects of your condition our beyond her expertise and is willing to defer to her Sceloderma colleagues is a sign of a really diligent and competent doctor.
You’re very welcome. I hope you find the right consultant for you too. I think the most important thing to look for isn’t necessarily an SSc specialist - but a really good rheumatologist who will treat you properly. X
Thank you and yes, i absolutely agree getting a good rheumatologist is a vital component in managing this disease.
Totally agree, I see Dr Royle a rheumatologist from our local hospital, he is amazing x
Hi,I'm under Salford Royal hospital in Manchester. My Consultant was Prof Herrick who has recently semi retired. I would recommend her team. You will need a referral from your Dr.
Good luck on your journey.
Xx
Thank you so much for your recommendation i really appreciate that.
Hi there, I also live in the Midlands and have had a referral through my GP to see Professor Denton. There is a support Group in Ireland which you will find by going on the SRUK Website, it might be helpful to contact them and see how they manage. Good Luck
I’m in the North West and was advised if mine progressed I would be referred to Aintree - aintreehospital.nhs.uk/our-...
Hi, I attend Aintree and I'm currently under Professor Marina Anderson and her team. She's been very helpful so far in helping me navigate my Limited Cutaneous Systemic Sclerosis. She isn't based full time at Aintree though, she works mostly at Lancaster (research I think).
Thank you for your reply, that could definitely be a viable option for me as I already attend the Royal in Liverpool for a different condition.
Hi Lucy, I also live in NI & was diagnosed with Scleroderma by Dr Wright a rheumatologist at Musgrave hospital just over a year ago. He diagnosed me very quickly & I’m now on medication.
Hi Castlewalks, great name! Thanks for the reply and it's great to chat to someone else from N.I and to get specialist recommendations . I think might have seen Dr Gary Wright years ago and he was very nice and down to earth, from what I remember.
Hi, it’s good to actually communicate with someone from here. I haven’t heard of anyone who has scleroderma in ni tho know plenty of ppl who have primary raynauds. Dr Wright diagnosed me with limited within 1 min 🤣prob easy as I realise now I had the teg thing ( red marks on hands & outbreak of finger ulcers) tho obv he did the tests to confirm & brought me in for the iloprost infusion last Jan & prescribed nifidipine which has really helped. Had to get chest scan & lung tests & heart one done.
Have u had scleroderma for long? It’s such cold weather at present, which isn’t easy for ppl who suffer with the cold.
Hi, yes it's great to connect. I think there may be others on this site from N.I as i do recall seeing posts from a few people from Co. Down, though it was quite an old thread, so they may not frequent this site as much anymore. I take it you have had sceloderma for quite a while, how long did you have your symptoms for before you got a diagnosis? I have only had sceloderma for a few months and to be honest i was totally unaware until my GP ran the antibody tests and then i subsequently ended up in hospital before Christmas for a different condition. While there i was told by two different rheumatologists, that i had these antibodies and that i am borderline for lupus and need further tests.
Hopefully will find more people as time goes by! I had scleroderma for at least 10 yrs but didn’t know it tho I did wonder about the red spots on my hands. knew I had raynauds which was painful. I had a bout of food poisoning just before Xmas ‘21 & that caused a bad flare up of raynauds which led me to consult rheumatologist after attending a& e. It went from there. I know it’s secondary raynauds I have & I do have bowel issues with the scleroderma but have generally kept well. I stay out of the cold & am retired so can rest when I need to.
Yes, there is definitely others out there in N.I that have sceloderma and as you say maybe in time we will meet some of them, but i'm just so pleased to have heard from you. My goodness you've had the symptoms of sceloderma for a long time, was it a slow insidious process? Was the diagnosis a real shock? Also how did u initially deal with being told you had sceloderma? I was so worried and upset, but it's really helping me chatting to people like yourself to see how you deal with your symptoms on a day to day basis.
Hi, yep, I had signs of scleroderma for years. Think one time a gp had looked at my hands & said we would need to look at this, but nothing came of it. I do think something can trigger an outbreak ( such as my food poisoning) but my biggest concern last winter were my hands as they were so sore. My lung test was bit under normal but rheum said it’s ok. nifidepine has really helped so hoping things stay under control, I take things easier when I feel tired & the cold weather doesn’t help. I had a post viral infection over 20 yrs ago & wondered if that contributed to it but could wonder all day!! 🥲 I was prob a bit naive when I was diagnosed but jut read up on it lots & joined groups to get more info, so def feel more knowledgable now.
How do symptoms affect you? Do you work?
I think your absolutely right in that certain things can definitely trigger symptoms and it's very interesting that you had a post viral infection over twenty years ago and then developed sceloderma years later. I posted in another thread that i had a UTI and then covid and after i recovered from them i started developing strange symptoms, which was previously tbought to be either my thyroid (hashimotos) flaring or polymyalgia rheumatica, which after further testing showed it was neither. My symptoms were intense muscle pain in my shoulders, arms, legs and feet. I also now have numbness, tingling and a burning type sensation in my fingers. When my symptoms begun i also had a low grade fever, hence the polymyalgia rheumatica diagnosis, though as i said before my doctor was leaning more towards an autoimmune condition, which subsequently turned out to be correct. I have saw so many posts on here and in other forums of people saying they developed an autoimmune disease after having a virus of some kind, especially covid, i think the cytokine load causes such havoc to the immune system and in predisposed individuals it can be the catalyst that then leads to the immune system attacking it's own tissues, either through molecular mimicry or other inflammatory processes.
I'm glad to hear that your rheumatologist has reassured you about your lung function test, i'm sure you're so relieved, long may it continue.
You are so knowledgeable and yes thanks for diet advice, i think, keeping it simple and cutting out processed food is really important. Do you find it really keeps your symptoms at bay? I try to eat a more healthy organic diet, but it's not always easy.
Lol, i hear you, giving up caffeine is so hard, i'm so addicted to it!
I don't work at the minute as i have other health issues which makes it very difficult. I was actually doing a degree when i got ill with pancreatitis and had to stop as i couldn't physically make it into university.
You mentioned a drug called nifidepine what is that for? Sorry still so uninformed and new to all of this.
Hi, u certainly have a lot to cope with, it must be very difficult for u to manage. It’s very hard for others to understand as there’s so many bits to everything. just keep asking & researching, I found out more from the nurses & websites/ groups than from my rheum, they’re so busy & just deal with what’s presented. I watch stuff on YouTube from the uk scleroderma group which is very informative.
The nifidepine is to enlarge blood vessels going from lungs to heart to increase blood flow which in turn keeps my fingers from developing ulcers & going blue as that was my major symptom last year. The one I’m on is Coracten which is ok for me but rheum prescribed sildenafil ( which he thinks is better) but I cdn’t sleep with it so just on coracten.
I do find a simpler less processed diet helps, sugar is def a No as other comments from ppl mention the same tho I do treat myself at times. I actually had a UTI after Xmas & it def has affected my energy levels & had a low grade fever too, they’re very hard to get rid of, think I still have it, so I think it’s more reason to avoid sugary foods. Stress also plays a part in autoimmune disorders so imp to reduce as much as poss. I take vitamin D & a vitamin spray & manuka honey to try to ward off this flu/ covid which is going round & Sambucol ( 3 for 2 in tescos)
I had covid last year which took a while to shake off, feverish & fluish so def immune system goes into overdrive. I also drink plenty of filtered water to try to keep system flushed out. I bought a jug & filters in summer.
When I was in hosp last year getting the infusion a nurse told me that scleroderma was worse than lupus as it affects more organs. I would suffer from leaky gut which on looking back was prob one of main indicators which I wdn’t have known about then & thought was IBS.
The rheumatologist asked how my swallow is but ok so far tho don’t eat big chunks of food! dry mouth & eyes can be annoying too.
I try to walk as much as poss tho not when weather is bad. It is good for the body but not to overdo as can set off feverish symptoms for me. A relative is an anaesthetist & she told me to keep body active as it’s imp to keep muscle mass in good condition.
An aunt had really bad rheumatoid arthritis & she suffered greatly from it so not sure if it’s genetically linked, also a niece from same side has hashimotos so these could all be connected.
We certainly learn from chatting to others, it’s been hard as no one knows about it, tho one of GP’s seemed to know quite a bit & gave me really strong antibiotics last year when my hands were bad.
A nurse in musgrave also told me about Nursem hand cream & lotions which I send off for & it’s really good. Imp to keep hands from drying out esp in winter.
Hope this helps! It’s certainly a journey.
Hi, yea having the pancreatitis and hasimotos hasn't been easy, but i have a great hepto/ biliary consultant here in N.I and i've also attend a specialised clinic in Liverpool. This clinic is considered as one of the leading facilities in Europe for pancreatic research/development and specialised treatments, so i do feel that i receive excellent care from both these hospitals in that regard. I completely agree, i've definitely learned more from this site and your good self, then from my GP, or the two rheumatologists i saw very briefly while in hospital. However i try to stay away from dr goggle as i find it tends to goes to the worst case scenarios and makes me really anxious.
I'm definitely going to try to stay off sugar, as i have read it is really bad for people with autoimmune conditions and tends to increase inflammation. I think you may be on to something there about the leaky gut, it seems to precede an autoimmune condition in many people, so there's certainly some kind of correlation. Do you have to follow a particular diet and take specific type of supplements to fix that?
I already take vit d as i was told it was quite low a few years ago. I have heard of the other one you mentioned and might try that too, as i definitely don't want to get covid again, once was enough!
Your so right about stress it seems to be a big factor in both causing flares and in making them worse.
Your rheumatologist seems to be very knowledgeable and well versed in how to treat sceloderma symptoms. Sorry for my ignorance in this, but, does that medication also improve function in the vessels of the lungs, thus minimising pulmonary hypertension?
Your lucky to have a medical professional in your family in that she can and obviously does give you really good advice. I think exercise is so important in both physical and mental well-being. I have a puppy that is hyperactive and needs frequently walked, which in turn forces me to get outside and get some good exercise.
That's interesting about what that nurse said about sceloderma affecting more organs than Lupus, i thought it was the other way around, but i know very little about either to be honest. My cousin has lupus and she really suffers with it, but i don't think it has caused any internal damage as yet. Just all skin and joint swelling, plus lots of rashes and bad photosensitivity.
Did you test positive for the ACA antibody? I tested positive for both that and the ScL-70, but was told that they don't normally coexist and that it's extremely rare to have both. It's all so confusing.
Thanks for the diet and hand cream advice, my hands are so sore at the minute and i've been looking for a really good medical grade type one.
Hi, good u’ve got good consultants here, they’re worth their weight in gold.
The nifidepine (coracten) I’m on is to help the function of the lungs & to reduce pulmonary hypertension.
I don’t know what my results for tests were as rheumy didn’t ever say & I never thought to ask, prob cause I don’t understand what they mean!
Interesting about the lupus, maybe the nurse meant scl was worse cause of the internal organ damage with it.
I get a vitamin b12 spray from Holland & Barrett tho there’s plenty of choice out there.
if ur fingers get sore I got Activon ( in a tube) cream with manuka honey which is really good. got it off Amazon I think - on recommendation from someone on this site!
Def reduce sugar to lower inflammation - I have a uti at present & also sore throat which comes & goes in last few days, hateful ‘viral feeling’ which reminds me of my virus all those years ago 🥲🥲
All the joys!
Take care x
Hi Castlewalks, sorry for the delay in getting back to u. I hope your feeling better UTIs are awful and having a sote throat at the same time is a lot of pain to contend with. Are you taking any antibiotics for your UTI? I know they tend to work pretty quickly.
I.might try that Activon cream, as my fingers are a vit swollen, thanks for the tip.
I noticed you mentioned you get dry eyes and a dry mouth, i also get that is that part of having sceloderma or is it an overlap symptom from another autoimmune condition?
Hi, I’m doing well thanks, got another antibotic for uti which seems much better. throat much better too, think it was a viral thing which came & went!
yep, dry eyes part of scl from what I’ve read tho lot of ppl seem to get it - dry mouth too is scl, hoping it’s not part of anything else 🤣
Hope all well with u x
Glad to hear you're feeling better. That's good to know that dry eyes, mouth/ mucous membranes are just a scl thing, i did wonder if it was a lupus thing as i have a lot of those antibodies though not enough for a specific diagnosis.
Do you get specific eye drops for dry eyes from the doctor or can you just get a generic one from the local chemist or supermarket?
Hi, hope ur well, nice to see the evenings a bit brighter.
Dry eyes etc could be similar to lupus as think symptoms overlap. I just get from chemist & seem to help. x
Hi, thanks yea i'm feeling quite good at the minute, definitely a lot more positive. The evenings are definitely getting brighter and it's such a joy to feel spring is on its way. Yes i did wonder if some of symptoms are an overlap from lupus as i also get really sore muscles and low grade fevers. I'm trying to get a referral to a specialist at the minute so hopefully once i see a rheumatologist they can answer those questions.
Have you ever tired sea buckthorn oil for dry eyes?
yep, I think symptoms of low fever & fatigue are part of these autoimmune illnesses. I also take a tumeric liquid (Holland & Barrett) which is good. It’s all about reducing inflammation in body - echinea is good but not recommended if have connective tissue condition.
I haven’t tried sea buckthorn oil, it’s great getting the suggestions from ppl. xx
Hi, yes fatigue seems to be synonymous with all autoimmune conditions. I also have hashimotos and one of the first symptoms was unrelenting fatigue. It honestly felt like i was drugged with a sedative at times i was just so exhausted. Turmeric is fantastic for inflammation, I take some in my daily smoothie along with wheatgrass.
Yes, these forums are great for various types of recommendations and suggestions.
Hope you're keeping well. Xx
I know, fatigue can be awful, but I rest when I feel tired. Spring isn’t too far away & there’ll be lots of lovely spring flowers etc. I love it & ppl seem brighter getting outdoors.
Hope ur keeping well too.
Enjoy rest of ur week.
Hi Castlewalks, yes spring seems to be in the air and it certainly brightens people's moods.
Hope you're having a lovely week. Xx
Hi, def much brighter even tho it’s cold. I’m having a good wk thanks, hope all well with u xx
… meant to say that I researched diet etc & read lots of comments for scleroderma & seems that it’s best to keep off processed foods etc. I’ve cut out cakes, crisps etc & try to cook & eat fairly plain food. This does seem to have helped a lot, also don’t take much alcohol - did only drink few glasses of wine but very little now. I take decaf tea & cut down coffee ( that was the hard one!)
… just few ideas for u 😊
On the subject of healing a leaky gut, eliminating inflammatory/processed foods and refined sugar are crucial, cutting out gluten, possibly dairy, and moderating alcohol intake. Healthy fresh foods and lots of fibre. I do all these, and it has reduced my symptoms hugely (and when a year ago I went back to eating everything again my symptoms got very bad and worse than any previous symptoms)I also take a probiotic which helps restore and maintain healthy gut bacteria.
It's hard at first but you adapt, find new things to eat, alternatives and recipes.
Treats are still possible like home made Ice cream made from frozen fruit, almond flour/honey cakes, coconut milk with dried figs/walnuts etc.
Hi Andy, that's great, that you have been able to manage your symptoms through your diet. I definitely think from reading various scientific articles and from anecdotal accounts that leaky gut is definitely a major contributing factor along with other factors such as infections etc., as the causation of many autoimmune conditions.
Do you follow a specific diet such a paleo or do you just eat healthy unprocessed foods? Do you also use supplements?
Hi Lucy,I don't follow a specific named diet, I guess I started out following an anti inflammatory foods diet so eliminated refined sugars, processed foods, some oils (there's various lists of inflammatory foods available out there) then removed wheat/gluten from my diet, and also dairy.
I eat lots if colourful fresh fruit and veg, brown rice, lean meat & fish, healthy oils like olive/avocado/walnut/coconut, nuts such as walnut/pecan/almond/ pistachios/, oats, dried fruit like prunes/figs/raisins/apricots, seeds, berries, coconut milk or cream, 100% chocolate , Cacao powder, honey and lots more. Baking with flours like coconut/almond/buckwheat. I drink small amounts of alcohol such as naturally gluten free beer, or cider with no added sugar.
I don't take much in the way of supplements apart from a quality vitamin D (as my blood tests show I'm a bit low in winter) and circumin (natural anti-inflammatory) as previous ibuprofen use gave me bad stomach/gut pains and I found out that it's really bad for gut health - I'll never take it again.
Hi Andy, your diet sounds so nutritious, with all the fresh fruit, vegetables, healthy oils and nuts. Your obviously very dedicated to improving your health through your diet. I absolutely believe that diet is the most important cornerstone of health. Wasn't it Hippocrates who said " let food be thy medicine and medicine be thy food."
I follow a woman on Instagram who claims to have put her life threatening autoimmune disease into remission through diet, homeopathic remedies and various supplements. She claims that her diet was the most important aspect of keeping her symptoms at bay and reversing the damage.
It's absolutely brilliant and so inspirational that you have also improved your symptoms by implementing a healthy diet. I really need to sort mine out, i can't seem to give up coffee, i think i'm too addicted to it. 😁
Thanks Lucy, it was inspired by reading so many people's (probably hundreds of) accounts about how their autoimmune disease was reversed or much improved by changing what they ate. My health felt so bad a year ago I felt like I didn't have a choice, I had to do it and there could be no cheating. But I really enjoy what I eat, I don't feel like I'm missing out really. Yes Hippocrates was right! and he studied the impact of types of foods on peoples health, and learned what foods could make people better. It's a shame that a lot of that knowledge that everyday people had has been lost since modern medicine came about along with powerful drug companies - it's all been about treating the symptoms with drugs rather than fixing the root cause!
You are so right, it is such a shame that all that holistic knowledge that our ancestors would have used to treat many of their ailments is lost to us now and has being replaced by the pharmaceutical industry. Drugs have there place but I think it is always good to be your own health advocate and to trust in your body's own unquie process of homeostasis. It really is so admirable that you have been able to improve all your symptoms i'm sure it wasn't easy to begin with and the level of dedication and determination to reverse your condition is just incredible. I'm vegetarian and i really struggle with my diet choices in regards to an AIP type of diet. I suppose a whole plant food type diet might be an option. Do you limit the amount of fruit you eat or just eat as much as you want? Also do u eat nightshades? Can i ask what your symptoms were before you embarked on your healing process?
My symptoms a year ago were - swollen sausage fingers that were really painful to move and wouldn't flex very far, (getting dressed was difficult painful) pain/friction in the finger tendons around the base of the fingers, rashes/spots on the fingers, Raynauds blueness/whiteness of the fingers, soreness and pain in the shoulder joints, sometimes hips, then pain in the inside forearms , from wrist to elbow, I couldn't drive my car at that point. Quite bad fatigue on certain days, poor sleep. I still have the circulation/Raynauds issues as capillaries were damaged, and I still have soreness at the base of the fingers/tendons which limits me with heavy gripping/lifting, I have to take care with my hands but at least they have dexterity now, at least I don't have the forearm pain or any of the joint pain, no fatigue with good energy levels and sleep well.
I don't really limit fruit, I probably eat 2-3 pieces of fresh fruit a day along with a handful of dried fruit for snacks. I did cut out all nightshades but gradually reintroduced them , I seem to tolerate them fine.
Perhaps there are some different vegetables/whole foods/receipes that you could try that would make the change easier for you?
Pleased to hear you are getting some respite. What treatment did you find was successful?
I’m still in limbo without a definitive diagnosis in spite of very similar symptoms to you except without rashes / spots on fingers.
Those symptoms must have been difficult to deal with on a day to day basis, but as i said before, kudos to you for being your own health advocate and learning to bring this disease under control.
I think with most autoimmune diseases it's a difficult diagnosis to accept, especially when it's a rare one like ( sceloderma) and it can be so bewildering trying to navigate through all the logistics of it. I sometimes feel like i need a medical degree just to understand what is going on in my body. 😅
However, you like so many other's on this forum seen so well informed and it really is so inspiring to speak to someone who has been their own best health advocate and overcome their illness. It must also feel empowering to take back control from this disease.
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