New Diagnosis: Hi, I have been... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)
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New Diagnosis

Jedale
Jedale

Hi,

I have been diagnosed in recent months with Systemic Sclerosis. Type and severity not yet known.

I am trying to come to terms with all possible associations; symptoms, medication, lifestyle. It is quite overwhelming but everyone on here seems to know so much about their own diagnoses!

So far I have Raynaud's, poor facial skin flare ups and in recent weeks have been suffering with acid reflux. I have also had IBS for several years.

My first biggest hurdle is trying to work out a routine of monitoring symptoms and knowing how to address these with my Rheum consultant. I become quite panicky every time I experience a change and I'm sure the anxiety is of no help to the symptoms!

I'm not sure how being on here will help me yet. My consultant seems knowledgeable for now but I have read several accounts of misleading diagnoses and inexperience so I am quite wary of taking the right steps.

I am taking azathioprine, which doesn't seem to have worked yet but still early days I think? I am also taking tablets for blood pressure to help the Raynaud's but this never seems to work and I have tried two different types so far.

Not sure I'm after any specific help at the moment, but any words of wisdom would be gratefully received during what has been a strange and turbulent few months, especially during a global pandemic!

Joanne

24 Replies
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Hi Joanne - just wondering what part of the country you live in? This online group is wonderful but I have really benefited from meeting up with people also. Everybody seems different/has different symptoms - it’s really nice to know you aren’t alone is what I’m trying to say x

Jedale
Jedale in reply to Jen3131

Hi Jen,

Thanks for replying. I am in Wiltshire and I think I have seen that there are support groups in Bath and Swindon, but I haven't the foggiest how to join. It may help to speak to others in order to attempt digesting all this new information! Will try to join if I feel brave enough.

Joanne

Jen3131
Jen3131 in reply to Jedale

We stated meeting in the John Lewis cafe in Birmingham and more recently, have used online resources to keep in touch/support each other. We met through this site so fingers crossed that you get support too from a local group. X

UCTD
UCTD in reply to Jedale

Hello there, I am living in Ireland and am envious of some of the leading medical experts available in the UK. Have you joined SRUK? They have great information and support, Versus Arthritis, and in Bath you have the Royal Hospital for Rheumatic Diseases. You should look at their webpage under Connective Tissue Diseases. This forum is fantastic, There is lots of support available which you will need,it’s a long journey getting a diagnosis and it can be lonely ☹️ but if you reach out it doesn’t have to be. Avail of help and remember this condition will need to be managed, what works for me will not necessarily work for you. Good luck!

Jedale
Jedale in reply to UCTD

Thank you for replying. I have joined SRUK but I will look up Bath Rheum hospital.

Jen3131
Jen3131 in reply to Jedale

Hopefully someone in those support groups will see your post and contact you. Our group met via this forum. 🤞

I take azothiaprine, and it doesnt necessarily make you feel much better, it suppresses the immune system to stop the disease progressing and spreading. I dont find it makes all the symptons go away, but a lot of swelling in my fingers has subsided although i still get a lot of aching joints. I too have quite bad raynauds, which i have had for over 30 years, and have tried lots of medication (including snidifil (viagra) - not sure of spelling) which hasnt helped. Still looking for something!

Jedale
Jedale in reply to pinkcat26

Thank you. I've actually just ordered some special gloves, which I am hoping helps keep Raynaud's at bay; maybe medication isn't the answer?!

Hi there. I too am very recently diagnosed and not yet sure of the type nor completely sure I have it - although I definitely have A mix of autoimmune diseases. Due to having been initially misdiagnosed with RA I’ve tried most of the meds including Aza but had serious reactions. So I’m now on Mycophenolate which I’ve taken before and tolerate and which definitely works for me.

From what I’ve gathered over the years - some get one rheumatic disease very classically and in many ways things are more straight forward regarding monitoring their disease and treatment. There a broad subsets with each connective tissue disease and most fall into one or more of these subsets. This makes diagnosis and treatment easier. If you are one such then that is good because it’s less likely that you will be taken off medications and given different opinions and the pathogenesis of the disease will likely be matched with treatment protocols so there’s a clear pathway your specialists can follow.

I don’t fit into the subsets properly and have overlapping connective tissue diseases and documented allergic reactions to many of the meds so I am a headache of a patient. I hope you have a more straight forward journey and that Aza and other control your Scleroderma well. It can take some time and perseverance for this to happen. Best of luck. 🙂

Jedale
Jedale in reply to 282523

Thank you for replying. I was originally prescribed Mycophenolate, but as I am planning to start a family this year, they immediately changed me to Azathioprine.

I'm sorry you have had a struggle with your meds and diagnoses. Hopefully I'll be a lucky patient and it'll be the one disease and nothing more complicated, as you say.

I hope you manage to find a solution that suits and helps you.

HI Jedale,

I was diagnosed in July 2017 with agressive diffuse systemic sclerosis, so I know exactly what you are going through.

Keep a diary of your symptoms & feelings daily. This helps you when you meet your consultant & helps you remember questions you wish to ask. Take someone with you as you may miss something they say. My sister came with me & made notes as it can all be mind blowing.

Try & remain positive as this is a great tool. You will have days when you feel really down, try to be less hard on yourself as your life changes, pace yourself as you walk this path.

Each case is so different & affects individuals on differing levels, be steered by your consultant. I presume they specialise in System Sclerosis as this is really important.

It's a very difficult time especially with Covid19. I went to a conference & took a friend as it's hard to explain all the different aspects. If you can link into any online talks it may help until gatherings ease up.

This site is great for support as we're all going through difficult times, sometimes it just helps to vent or talk about a good day you've had.

I researched a lot at first but it can be so scary, you will learn as you go along & find out what options may be available to you.

Remember keep asking the questions & fight this disease tooth & nail!!

A big hug from me!! Xx

Thank you for replying. I have to say, even with my early diagnosis, I do have some very low days and I can never work out why, which is why I have initially reached out to forums. The changes in my skin and appearance have knocked my confidence and I'd say they're minor compared to what they could be. Still a lot of change to digest though.

I think I will start taking my husband to all consultations, as they do say patients only tend to absorb around 20% of the information they are given at consultations. I barely listened at my diagnosis, hadn't even realised I was being formally diagnosed and I'd gone on my own expecting more tests and not much more! So that's great advice.

I will try to keep a diary, that makes sense.

Thank you for your help and advice. I hope you have managed to find some comfort since your diagnosis.

The difficulty is that each case is so different, some people's cases start very slowly & go on for years, other's as in my case go from being healthy & fit to being hit hard & aggressive.

I suppose looking back at least the changes were dramatic so I knew something wasn't right. Mine was caught early before it could do damage to my ograns. I was lucky to be offered stem cell treatment having passed the rigorous tests to ensure my body could cope with the treatment.

I really don't think I would be here now without it as the medication was not stopping the progression. There was a risk involved but I made the decision to go for it. I was also lucky that my consultant discussed this option with me.

Two years after the treatment I feel great & have managed to reduce my tablets to only 3 per day. At first I was on over 20 tablets per day plus morphine in liquid form to help with the intense symptoms.

I used everything available during my journey through the hospital, hydrotherapy, physiotherapy & psychological sessions, again through referrals from my brilliant consultant.

I hope your journey is not as intense & that you too are able to get to the stage you can start to live again.

I take each day as it comes as the future is still uncertain but I'm adamant I will enjoy each day & fight all the way. Remember we're all here to support you & offer our individual stories. Xx

With the acid reflux, has anyone advised you to raise the head of your mattress by at least 10 degrees? I have a pillow stuffed under the head of the mattress plus an old duvet piled into ramp. I also need another pillow just beyond my backside to stop me sliding down the bed in my sleep.

I was also advised to not eat within three to four hours of going to bed - so I have supper before 6pm and go to bed at 10pm. Also restrict fluids a lot after 6pm - just the odd mouthful of water. If you have a dry mouth saliva replacements like oralieve products are helpful. Be careful bending over as well.

What is the cause of your acid reflux? Do you have a hiatus hernia?

In addition to acid reflux I was having bouts of the food fermenting in my stomach - so for three or four hours after the meal there was gurgling and then eventually I'd throw up. No direct pattern to what I'd eaten. Wouldn't happen for days, and then it was back. Turns out that some systemic sclerosis patients can have sluggish peristalsis and the food pools in your stomach and goes nowhere. Domperidone was the answer to that. I now have busy little bowels and have to put up with needing to poop 4 or 5 times a day - but it's a whole lot better than gurgling and vomiting.

I was first diagnosed 18 months ago and am still getting to grips with it all - but it does get better, a bit at a time. Most of the way there now I think, but dealing with multiple hospital depts, GP and two different pharmacies takes time and effort. Having a relatively uncommon disease (and I also have pulmonary hypertension which is one of the less common complications) you also may have to spend time explaining your disease to medical professionals.

It would be nice if the doctors could turn round and say "ah yes, you have a 95% chance of living for 20 years" but they can't. A lot of it depends on how well you respond to a medication.

Yeah, the internet can be a depressing place and I found that I got very low reading about all the things that could go wrong. I've not been on here before, even though I knew about it, because I didn't want to spend even more time with the disease, but am actually feeling more robust at the moment so thought I'd drop by and try it out.

I keep an excel spreadsheet and try to write in it every day as to what I thought of the previous day. A week before an appointment I set to work summarising for the consultant and also writing down all the questions I want to ask. I take in a typed up sheet, with numbered questions, or sheets actually. I leave space on the sheet after each question so I can write in the answers. I also take a couple of spares with me and hand them to the consultants and we sometimes can work through at speed - question 1, "no", question 2 "no". And then I write it up afterwards so I have it to look at. My background is in science and analysis, so this is me rolling the way I always roll.

Having a notebook and pen in your pocket so you can jot down questions or sudden symptoms as and when they happen can be useful.

One thing that helped me was finally getting a smart phone (Tesco Android in my case) and having eBooks on it - funny ones. Any time I need to chill I can read a funny book for ten minutes. Having a meditation video of lovely countryside is another thing that helps me. I like Mayrains ones on YouTube.

I find afternoon naps are also key and am off to have one as soon as I've typed this message. I've been lucky as the medications have worked for me and I've not had a lot in the way of side effects.

Cognitive Behavioural Therapy can also be helpful for some people in terms of managing your emotional response. It might be available via your GP. Also try looking at the Living Life to the Full website.

Jedale
Jedale in reply to Poppy221

Thank you for replying, Poppy. I suffer with reflux issues in the day so no noght issues to resolve. I actually had a consultation this week; Consultant wants me to monitor the symptom but for now it's quite mild so no medication needed.

The consultant also confirmed for me yesterday that I have Limited Systemic Sclerosis, which has made me relax a fair bit about the severity of my condition. Still further tests to follow but I feel a lot more in control and at ease already, weirdly.

Definitely need to get myself in a routine with all these suggestions for recording symptoms as I am very forgetful. I did list my developing symptoms and all my questions for the consultation this week and it really helped so I will continue to do that.

Scotty20
Scotty20 in reply to Poppy221

Hi Poppy

I have read your reply to Jedale and found it very informative. I too have similar symptoms of reflux and stomach gurgling occurring in the last few months along with Renauds and skin problems and will be seeing a consultant for most likely scleroderma confirmation . I will be making up a spread sheet and noting questions on a printed sheet to give to the rheumatologist what a good idea so I’m glad of your advice. I bought a special pillow on line for reflux from amazon to raise my head (£30 piece of angled foam) which was a bit of a rip off but has worked but isn’t as comfortable on my shoulders as my posture sprung mattress but better than acid burning the throat in the night.

I hope you can find solutions as you like me live with this incredibly difficult disease as I’m still trying to come to terms having just got it and knowing I will have more problems to face in the years ahead.

Oh before I go has your throat healed with the medication. I have been using Omeprazole for my GORD for the last month which as helped a lot but wild like to come off it but many people are unable too

Do you think it’s possible or will I be on a PPI long term now

Thanks

Scotty20

Poppy221
Poppy221 in reply to Scotty20

Hi Scotty

I had two bouts of acid reflux, the first one years before the scleroderma due to a hiatus hernia - which may have been early stages of scleroderma and no-one spotted it. What happen was it felt like my gullet and stomach was on fire. The PPI I was given at that time, isomeprazole, reduced my stomach acid, and then the inflamation caused by the acid damage had to have time to heal. I found that I couldn't eat anything acid like oranges, pickles, sometimes even apple, or strong like spices, ginger especially, peppermint as that would inflame everything all over again. I stopped taking the PPI due to the side effects after a couple of months when all the inflammation had gone and was just very careful what I ate. A year or so later I was able to eat oranges again. I thought all was fine.

Roll on a few years and I had this permanent cough with lots of phlegm, plus other problems (swollen painful feet, plantar fasciitis far worse, permanently felt like the exhaustion at the tail end of flu - and that was the scleroderma turning up). Any time I turned over in bed I'd have a coughing fit. I didn't have any soreness to my stomach or gullet or particular awareness of any acid reflux. However when I saw the rheumatologist, I was told that you can have acid reflux without noticing soreness in your gullet and the phlegmy lungs were probably due to aspirated stomach acid. I started sleeping a ramp and controlling when I ate and drank before I was started on the esomeprazole, and the cough was less bad just due to the ramp in the bed, and improved a bit more with the esomeprazole. I have been on that for over a year. I do have lung scarring caused by the acid. I don't get side effects from the esomeprazole.

Some of the gut gurgling might be slow peristalsis for which the answer is domperidone - but that is something for the doctors to work out.

Other than that I can't answer your question. Some of it with medicine is "wait and see".

Scotty20
Scotty20 in reply to Poppy221

Thanks Poppy I will persist with the omeprazole PPI for the recommended time and hope it can let my throat heel as i can’t drink acidic drinks. Tried a glass of red wine on Saturday night and couldn’t drink it after the first sip due to a burning throat so I’m now back on water looks like alcohol drinking is over anyway now with all the meds I’ll be taking. Also I took a PPI tablet this morning before breakfast which was porridge and green tea before visiting the optician for an eye test as I now have dry eyes and mouth. Don’t know if they use lasers to check behind eyes but when I came out started coughing up neon yellow coloured Phlem which also came through when I blew my nose and this lasted for the next couple of hours. I thought I was radioactive but fortunately it disappeared after lunch but have been left with stomach ache and heartburn so maybe it was the PPI coming up from my stomach. Has anyone had an experience like this and how can you keep your PPI from coming back on you. Anyway still learning on dealing with scleroderma as we all are and wish you well Poppy with your gastric problems.

Scotty20

Poppy221
Poppy221 in reply to Scotty20

Are you saying that you think you sicked up the PPI? I think you might need to talk to a doctor or pharmacist about the way PPIs work - I don't think they lurk in your stomach like an antacid, I think they are supposed to stop the proton pump that produces acid from over-producing so presumably go into your blood stream or into something - but check with a professional cos I'm handwaving. PPI=Proton Pump Inhibitor

Did the optician put any drops in your eyes that could have run down your tear duct? That might be the source of the yellow phlegm. Not radioactive but luminescent - shows up flaws on the surface of your eyeball.

Scotty20
Scotty20 in reply to Poppy221

Thanks Poppy

They didn’t put drops in me eyes but I had in the house earlier so may be it was that and thanks for the info on the PPI as I don’t know how they work but your probably right on the eye drops being the cause as it was a bit scary at the time

Yay. Glad you had good news. The small notebook in the pocket has done wonders for me.

One further thought on the acid reflux. I had acid reflux some years before being diagnosed with scleroderma. It was caused by a hiatus hernia, treated for a few months with isomeprazol (which did not agree with me). As far as I was concerned the acid reflux totally settled down, I was careful on the diet for six months or so then gradually tried eating things like oranges and had no problem - no burning stomach or oesophagus. However when the various scans were done on me last year, what showed up was honeycomb scarring in the base of my lungs, which was attributed to aspiration of stomach acid - even though I wasn't feeling any acid reflux symptoms.

Jedale
Jedale in reply to Poppy221

Oh ok, thank you - I will be sure to keep track of it all

Further thought - I had a permanent phlegmy chest and cough, without an infection. The first treatments that happened were lying up on the ramp at night and restricting fluids after 6pm and I noticed a decrease in the chest problem. Not a cure, but an improvement. So you want to record all symptoms, including coughs and sniffles, in case they are relevant. Too much info is better than too little.

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