Mums recent diagnosis

[OhScarlett]

Hi Everyone,

I’m new here. My mum was diagnosed with systemic sclerosis 8 months to 1 year ago. She was relieved to finally have a diagnosis for the symptoms she’d been experiencing for years (heartburn & struggling to swallow to name a couple)

She has remained quite tight lipped about what now happens but i have done some research on this website and the NHS website and i am sick with worry.

This week she had her second specialist appointment since the diagnosis and she told us her condition had worsened slightly and they were changing her tablets. The side affects of the new ones could be liver damage and skin cancer. She hasn’t yet had her second appt to check her organs. I’m praying for good results.

I believe this condition can be very specific to the individual person but is anyone or anyones loves one experiencing something similar?

Also, what is the prognosis?

Many Thanks

Love and Well Wishes

OhScarlett

[MEW53]

Welcome OhScarlett,

Good your Mum has a diagnosis cos it can take a very long time sometimes to get diagnosed. I got diagnosed in 2014 and had different drugs, there is a chance of developing cancer and liver damage with my drugs but I am monitored monthly with blood tests and visits to various different specialists for my my heart, lungs, gastrointestinal etc. checks.

Everyone is different and it affects everyone differently, try not to worry, no one really knows what my prognosis is but just pace yourself and ask your specialists lots of questions. Also worth keep diary of events day to day so you can say to specialists how you progress.

This is a great forum.

Good luck.

[OhScarlett in reply to MEW53]

MEW53 thank you so much for your reply.

I’m also interested in living day to day with the condition, if anyone would care to share I would be so grateful.

[MEW53 in reply to OhScarlett]

OhScarlett,

Life is quite different for me now compared to when I was working and was healthy. I take things very easy, I have a recliner which I sit in most of the day but take some very short walks to keep my muscles going. I have a stairlift and an automatic bed which raises at the head and feet, this helps at night as I have swallowing problems. I pace myself so that I don’t overdue it. I’m lucky I have some good friends and neighbours and a daughter who visits regularly who lives 50 miles away.

I found it very difficult slowing right down in the beginning when I got very ill very quickly cos I was quite an energetic person but have got used to doing things slower now. I get very tired so you need to rest a lot.

I’m into family history so I do more on it these days. I do miss work but I’ve just reached retirement age. I use my iPad a lot and my hands were curled up badly but using the iPad with a dibber a pen like gadget means I have managed to get better use of my hands.

SRUK.co.uk is a very helpful link, lots of good information and Arthritis Research now called Versus Arthritis, they have a very good helpline.

The best advice is to take each day as it comes.😀

[Sanmateogirl107]

MY NAME IS JULIE. I HAVE CREST SYNDROME. CAN'T SWALLOW SOLIDS, HAIR LOSS, VOMITING, NAUSEA, GABAPENTIN, ANTI-INFLAMMATORIES AND PAIN MEDS, YOGA, TAI CHI, ART THERAPY, HAVE THE DOCTOR DO XRAYS WITH CONTRAST OF PELVIS, CHEST, LUNGS. IMMUNE DOCTOR NOW. PAIN DOCTOR, ASK ABOUT PT, HANDS AND FEET, BIOFREEZE IS GREAT. TOPICAL PAIN RELIEVER, PYROFFIN WAX FOR THE HANDS, ASK ABOUT SUPPORT GROUPS, COUNSELING, JOURNALING AND ASK QUESTIONS LOTS OF THEM. READ EVERYTHING AND ANYTHING EDUCATE YOUR SELF. DIETICIAN. BONE BROTH IS GREAT, BOOST PREMIER PROTEIN ETC. HAVE FAMILY SUPPORT ALSO. HOPE THIS HELPS DO NOT GIVE UP HUGS FOR A BETTER DAY. JULIEANNA

[Bec9680]

I’ve had systemic scleroderma for almost 4 years now. Thank God I found a support group where others were taking about antibiotic treatment for scleroderma and had actually gone into remission. I’ve been on the treatment for 9 months & doing so much better! You can go to roadback.org to find a doctor that will help you find root cause and give you this treatment. Most the time autoimmune diseases are because bacteria has taken over in the body and immune system was too weak to fight off. I know how horrible this disease is so I hope I can help others with this information. God bless you all.

[Mirv]

Hi there just wanted to put on a more positive comment because reading some of the earlier replies would scare me! It is lovely that you are trying to find out what happens next so you can better support your mum. There are all different levels of symptoms. I was diagnosed with crest about 3 years ago and am on hydroxychloroquine and pain killers and also been advised to take iron tablets. I have bad days especially when it's cold but I work full time in an office and can drive and use public transport. I have reynalds, calcinosis, joint pain and probably other things I haven't realised are due to the condition and they can limit what you do. There are many posts on here from people who have had the condition for many years and are still living a full and positive life. Good for you for supporting your mum and good luck.

[OhScarlett]

MEW53 Sanmateogirl107 Bec9680 Mirv Thank you all so much for responding and sharing. It’s lovely to be able to reach out and learn from and support each other. Xx

[positivedaybyday]

Hi,

I was diagnosed over 2 years ago with this awful disease. It completeley changed my life going from a very active & energetic person to being housebound for over a year. Your mum will have many ups & downs so give her a hug on her bad days. I missed this as I live alone & found it very hard at times. I have learnt to pace myself as MEW53 stated & also not to be hard on myself when simple things are virtually impossible. Being positive is a great friend & really does help. If your mum wants to cry she must let it all out as this will happen. Once again it depends on each case as we all can experience different levels of the disease & having an excellent consultant is a must. I went to a conference held at the hospital with talks on different elements of the disease. I took a friend as it's hard for family & friends to understand what is going on. This really helped, especially a talk on the non physical elements eg crying, feeling down, friendships & family impacts. See if your hospital has any planned. My friend commented that I hadn't ever mentioned to him the dark side only that I was going to BEAT this disease & always seemed positive. I kept this side hidden from family & friends! I have been having counselling which has helped me tremendously, there was a long wait but it was worth it. I was able to unlock this hidden world & learned ways of coping better. I've been lucky too in having stem cell treatment as my case was very very aggressive & microphenolate wasn't controlling the disease. I had this May of last year.The disease hadn't damaged any of my organs & I passed all the tests for the procedure. A year on & I'm starting to get my life back. I have built up my walking gradually & I can manage 1.5 hours per day. It's a miracle as 18 months ago I could hardly walk! I also go to Hydrotherapy at the hospital. This is one place I can totally relax all my body. See if the latter is an option for your mum. There is hope!! Big hugs to you all xxxx

[volvox45]

We are all very different so don't assume your mother's experience will be like anyone else. I was diagnosed a year ago and scans reveal I have damaged lungs (bronchiectasis), oesophagus and guts but I have to say it hasn't made any difference to my life other than having to visit the loo up to four times a day rather than once which is a nuisance but that's all. I've had Raynauds for at least 20 years so I'm used to that. I don't take any medication – yet! I can walk as far and as steep as I like and can be on my feet all day without feeling anything but a bit tired, which is reasonable as I'm 73!