Recently Diagnosed with Systemic Scle... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Recently Diagnosed with Systemic Scleroderma.

GillSuffolk
GillSuffolk

Any help or advise please. I was admitted to hospital with shortness of breath & chest pain, after being unwell for the past 6 months. I spent 12 days in hospital where I had CAT scans, MRI, lung function, & many blood-tests, I received the diagnosis not knowing anything about the disease which I have been looking into since my discharge. I have been prescribed Evacal, Adalat, Codeine Phosphate, Omeprazole, Pregabalin, & yesterday started on Mycophenolate. My lungs are now scarred, I get short of breath & I still in pain with my Raynaurds affecting my hands & fingers ankles.

Is there anyone who can give me any advice, I feel out on a limb & no real support.

Thanking you..... anyone X

22 Replies
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I had the same symptoms in November, I had CT scan, x rays, stress echo and bloods. They diagnosed me with vascular spasms gave me a GTN spray and prescribed Nifedapine, I have had them several times since and found no relief from the spray, my doctor thinks it could be my ribs being affected by the condition so I will speak to my rheumy at my next appointment

Hi Gillsuffolk - are you now under the care of a rheumatologist? If yes, call and request an appointment from their secretary (if not, investigate specialists closest to you - the SRUK's website is a good resource and see your GP to ask for a referral)

What's happened to you must've been a. Huge shock and you're not sure what you're dealing with so once you've sorted seeing your rheumatologist to talk to you about SSc and what symptoms you have and what you can expect and how long before medication will make you feel any better etc, you might want to see someone in mental health. I asked to be referred for cognitive therapy to get some skills for dealing with stressful situations and for counselling to come to terms with my condition. Your GP can do this - there may be a wait for this so you might as well request at the same time.

I'd stop googling as it can be quite frightening & not too helpful. Again, the SRUK website is an excellent source. They also have a helpline number you can call for a chat to someone else who also has scleroderma - they don't give medical advice but they are a friendly ear.

Dodder2012
Dodder2012 in reply to The_Bear

Sorry great minds!! I was more or less writing the same advice! Yours much more succinct!!!

emo81
emo81 in reply to Dodder2012

Ditto.

GillSuffolk
GillSuffolk in reply to The_Bear

Thank-you so much for your advise, which I will take, already don't feel quite so "alone"

i can fully understand, I was only diagnosed 6 weeks ago & like you feel so alone, even my consultant admits to having little knowledge & told me it was just "bad luck" when I saw him last week & increased my medication. I have arranged appt. with another consultant at Addenbrookes Hospital who I researched & I understand to be an expert in my condition.

The organisation SRUK (Scleroderma Raynaulds United Kingdom) is very supportive. I am as surprised by the way this illness is treated as the number of ways it affects the body. Try not to look it up ( esp American versions of outcome!) I didn't look it up until I was feeling much better! You will too! Once you join SRUK you will find there are many of us getting on with our lives, I just hope you have as good a local contact as I have here in Staffordshire. Do you have Specialist Nurse that you can contact? SRUK will give you your local contact group number. With all best wishes to you x

Hi Gill, I am really sorry you have had such a tough time of late. As everyone else has said, avoid any dodgy websites which freak you out...have a look at SRUK and have a look on the local contact information. I am not sure if there is anyone in Suffolk but I am only across the border from you in Norfolk so feel free to give me a call. My contact details are listed. There are at least five of us not that far from you and I speak regularly to a couple of ladies.

This initial diagnosis period where you are trying to get your head around what has happened is always horrible. As time goes on you learn to know what your symptoms are and the best way to manage them. You will start to feel more in control again.

All my best

Lucy

GillSuffolk
GillSuffolk in reply to LucyJean

Hello Lucy,

Thank-you for your reply, Yes, it's all very new to me at the moment, & the feeling of isolation & the unknown future, I will try to find a local support group here in Suffolk, & indeed may well contact you in the future.

Kind Regards

Gillx

Where do you live? I am in Scotland. Have you been given a referral to see a Rheumatologist? You really need one to see you through this. I am the same as yourself with three types of lung damage....COPD-bronchiecstasis and pulmonary fibrosis. I am on myco. too. Also have secondary Raynauds and been into hospital with fingers going black so on an infusion to open up blood vessels to hand which worked, thank goodness. So put onto clopidogrel for blood thinning. Did ask to see counsellor for help with dealing with this illness going forward...still waiting after quite a few months now. Best of luck and keep better.

Thank-you for your reply, yes, its early days & physically & mentally having to come to terms with my diagnosis, it's good to have found this site which I am sure will be very helpful X

Hello GillSuffolk,

I live in north Suffolk, so not far away. LucyJean's advice is good. You are at a difficult time with your diagnosis and treatment, and there are lots of people you can contact. I have found the specialist Scleroderma unit at the Royal Free Hospital very helpful.

Best wishes,

Tim

GillSuffolk
GillSuffolk in reply to tall-tim

Hello Tim,

Thank-you for your reply, I am at the moment under the care of Rheumatolgy at West Suffolk Hospital. my consultant has very limited experience of the disease & the nurse specialist told me she has never known a case ...... did your G.P. refer you to the Royal Free ? I understand there is a excellent consultant Dr Frances Hall at Addenbrookes, I have had a referral to her but as yet no appointment.

Kind Regards

Gill.

tall-tim
tall-tim in reply to GillSuffolk

Hello Gill,

Symptoms started up in 2004-05. GP hadn't a clue. I thought perhaps I had psoriatic arthritis, asked for a specialist referral from my GP. Started out at Bury under a Dr O in 2007) but I wan't happy with the speed of his diagnosis (two years !!!!!!!!!!!!!!!!!!) and his seeming lack of understanding - he diagnosed psoriasis & raynauds, but I was clear that it didn't capture the full range of the symptoms I had, so when he suggested a drug I had little confidence it was the right one for me and I said no. I asked my GP to refer me to Norwich. It took me over a year to get an appointment (three appts cancelled in a row - I got angry) then I was put under Dr M in 2009 who knew about Scleroderma. Various tests were done but very few markers evident - meanwhile painful ulceration and other nastiness continued. It took permanent crippling of my fingers, losing weight suddenly, collapsing muscles before he got me into hospital for a battery of test in July last year. As things were so bad I asked my GP also to refer me to the specialist unit at the Royal Free and I saw them last October. They confirmed that Dr M was on the right track with his treatment regime. I was worried about going 'behind his back' to someone else, but they said that consultants liked to get a triangulation on the problems and confer among themselves. I am now on a suite of medication and things are stable and life is bright again, though my fingers will never be right again.

I am telling you all this because I want to explain what happened at Bury and what a maddening process getting the right diagnosis and treatment can be. You must be your own best friend. You must keep 'phoning Dr Hall's secretary; also ask your GP for a referral to the Royal Free as well. Speak to Professor Denton's secretary there and see what she suggests. Speak to Dr Hall's secretary. Keep badgering; keep researching; keep taking notes about what's happening to you... You will need them to explain your symptoms, and for remembering exactly what's going on.

Best wishes,

Tim

GillSuffolk
GillSuffolk in reply to tall-tim

Thank-you so very much, I will be on the phone first thing tomorrow morning !!! Will keep you updated x

tall-tim
tall-tim in reply to GillSuffolk

Great, but tomorrow is Saturday...

Today !

Irene55
Irene55 in reply to GillSuffolk

I used to live in Suffolk and saw Dr Watts at Ipswich hospital. He is very good, maybe you can ask to be transferred to him. Bury St Edmunds is not too far from there. Nowadays we are allowed to choose the hospital we want. He also referred me to Professor Denton at the Royal Free in London. I think you should consider it as it can be misery going to a doctor who doesn't know much about the condition.

Hi me got same has u had mine since 2009 just have to take each day has it comes I have Gud days n bad days try to be positive that's all I can see keep in touch Sarah xx

Hi Gill

I can understand how you feel, the initial diagnosis comes as rather a shock, but you will settle down eventually! I was diagnosed last year along with Pulmonary Hypertension and Hughes Syndrome as well! I am also on Mycophenolate have been for six months, my Reaumatologist told me last month that the Scleroderma is now stable, so some good news. I go to the Royal Free in London for my PAH I cannot speak highly enough of the care I am given from them. Nothing is to much trouble! So if in doubt ask for a referral. Chin up you won't always feel the way you do now.

Take care

Jayne x

GillSuffolk
GillSuffolk in reply to JayneO

Thank-you Jayne, x

Hi, I was diagnosed in June and I know how you feel. I go to bed thinking about it ,wake up thinking about it..I have good days and bad days and i am still trying to get my head round it . It's hard . You find yourself looking at the internet, googling everything , watching horror stories, getting upset All not good for the inner being. Most of the people on here are right about not going on the internet too much . Save yourself the upset.

I asked to be referred to the Royal Free by my Rheumatologist , I already have my appointment through for the end of September so I am pleased to be going to see them soon . I hope you get the help you need, remember , we are all in this together , we can help each other and try and come to terms with it. Take Care x

2 years later how are you feel now ? Family member just diagnosed with systetemic scleroderma and trying to get as much information as possible. Currently on prednisone and starting mycophenolic.

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