Act of Love

[Shelley53a]

Hi I am new to this site and looking for people based in the Uk who have scleroderma. My sister who is also my best friend was diagnosed a year to date with diffuse systematic scleroderma. She is listed as Cole57 and we are both here to read about people's experiences, share what knowledge she has from her own and learn more about something that is very rare.

My sister has been offered a stem cell transplant and I want to best support her through whatever choices she makes going forward. If you know of anything, have been diagnosed with something similar, we both look forward to hearing from you and hope through the ups and downs, we can support you.

[Winfield1]

Hi

Im new to all of this so can't offer any advice on treatment but wishing your sister all the best with whatever choice she makes.

Glad you are there to support her - having someone holding your hand makes such a difference

[Shelley53a in reply to Winfield1]

Hi Winfield1

Thank you for your words. It does help having someone and I hope you have someone too. If you never need anyone to talk to I am here and my sister is Cole57 x

[zenabb]

My cousin in America had a stem cell transplant that worked very well. She is fine.

[Shelley53a in reply to zenabb]

Thank you for this. Is your cousin on this platform?

[zenabb in reply to Shelley53a]

Yes. She was done 10 years ago when she was in a terrible state. She is fine now and has been for years. Cured.

[Shelley53a in reply to zenabb]

Awwww thank you. Hearing that helps a lot and I am happy to hear your cousin was cured x

[gindy]

I've not been offered stem cell treatment, but I've heard if you're a candidate for it, it can all but cure SSc. I wish your sister all the luck in the world, she's very lucky to have such a supportive sibling.

As I'm not religious at all, I'll just send you healing vibes 😉👍

[Shelley53a in reply to gindy]

Healing vibes is just as good. I wish our all the luck in this journey and do hope you have people you can talk to x

[gindy in reply to Shelley53a]

Yes my gf is an amazing woman who takes great care of me. I'm a very lucky woman to have such a great girl by my side.

It's really important to have emotional support when you're suffering with a little known illness. It's very scary and at times life felt not worth living. At least, it used to before I had a change of attitude towards SSc. These days I'm grateful of the good days, and ecstatic if I grab a pain free day 😁 but when there's bad days, I'm now in acceptance and rather than get upset I embrace it.

Haha it almost sounds religious 😱

[Shelley53a in reply to gindy]

Lol it does but it's spiritual and they all blend in some ways.

You sound just like my sister and probably so many others too. It's to be expected the emotional rollercoaster that you are on. It hurts to see the down days my sister goes through and I try my best to lift her up as much as I can.

For something which has such a big impact on ones life, it is little known and that's why I'm here just trying to find out as much as I can to help my sister because I can't take it away nor ever really understand what she's going through, but just be here.

But I'm happy you have your partner and I hope you are receiving good care and advice x

[mad4cavs]

i got diagnosed with breast cancer 2 yrs ago treatment with chemo caused diffuse scleroderma and gout took 6mnths to diagnose everyone kept saying it would get better it didnt it got worse finally referred to a rheumatologist who diagnosed diffuse scleroderma,i am in constant pain consultant says i look like ive had scleroderma at least 20yrs my hands have terrible teraldactyly,ive commenced mycophenolate hoping this will help,cant believe ive gone from working to hardly being able to function in 2 yrs

[Shelley53a in reply to mad4cavs]

Hi Mad4cavs

I'm sorry to hear this, especially that you've had it for so long and were unawares and also what you've been going through. I do hope you have friends/family to talk to and support you through this over the last few years because even for people like myself who are not going through it, we still can just be there.

I'm here for you to talk to and I know my sister Cole57 would be a good person to talk to. In this past year since being diagnosed, I've gotten my strength from seeing how strong she has been and I know she can offer you a lot of advice.

I'm here if you need to talk x

[Cole57 in reply to mad4cavs]

Hi mad4cavs

I feel your pain I really do. I'm actually worried about the exact opposite. I was diagnosed with diffuse scleroderma last year and in the space of months my health has gone down at rapid speed. I have just had 6 pulses of chemo and now I've been told I need 6 more pulses. I now worry will the chemo cause some form of cancer with the amount I'm having to have.

The constant nerve pains all over the body, the fact I'm losing the ability to stretch my arms out amongst other things. It's so hard from one day being able to do normal everyday simple things to being able to do very little on a normal day.

I hope and pray that Mychophenolate works for you because for most people it really does. Unfortunately for me it didn't. Like you I think all we want is something to make everyday that bit easier and that bit more pain free. I hope that together you and your drs find your answer and stabilise your symptoms. I will be thinking and praying for you. But know your not alone. Xx

[mad4cavs in reply to Cole57]

thank you so much im grateful im still here . Try not to worry about chemo i have been told the doses they use for scleroderma are very small compared to the doses for cancer,the chemo i received after my breast cancer i had a severe reaction to that ,they say if i had the last dose i wouldnt have survived,as for my reaction to finding out chemo was an option was" NO WAY"not walking that path again,but i would ,i know now,i find it very hard not being able to pick things up ive broken so many cups etc and not being able to cut up my food or pour a cup of tea,its very hard we take so much for granted

[mad4cavs]

my family and friends are very supportive i have to let go of my past life before cancer and try to work out whats ahead how to cope with scleroderma and try to live my life as full as i can,i need to learn more about it but most of my gps have no idea

[Shelley53a in reply to mad4cavs]

I'm happy you have a support system because everyday will come with different feelings and you will need them.

Life is so short and I believe in living life to the fullest because tomorrow is promised to no one.

This site has so many people that are going through similar things to you and everyone seems to be here genuinely to help. But research is the key. Where do you live by the way? I ask because my sister is under the Royal Free and I attended my first appointment with her last week. We were both concerned about her next steps but I left with hope and knowing that my sister has options. Also that they will endeavour to keep trying to fight this disease

[Cole57 in reply to mad4cavs]

Hi mad4cavs

As everyone on here always recommends try to get a referral to a specialist. I was lucky enough that my rheumatologist was able to admit that she was lacking in knowledge to be able to help me like I needed. Now thankfully I get great care from the Royal Free. I'm sure if you contact SRUK they may be able to tell you if a specialist closer to you.

Hearing you mention about finding a different way to live is so true. I think that was something I realised after the chemo. I have kids and I don't want to give up doing things with them just because I'm constantly hurting. So I decided that I was just going to do things differently. I want to enjoy life to the fullest even if it means some days I rest a little bit longer recovering from some strenuous activity. I know for me and my children it will be worth it. But it's definitely about finding your new normal and embracing it.

You more than anybody will see life so much more differently with everything you've been through and you must cherish it more than most. Like me you are lucky to have a loving and good support network. Thinking of you and we are here to talk to anytime

[mad4cavs]

I'm from south Wales I'm 62yrs young I've worked all my life as a staff nurse this is why I'm finding it difficult to give up control of my destiny to this disease,I'm a mum of 4,grandmother of 7 ,I don't have a specialist but I do have a rheumatologist appointment next week so I might ask about a referral,because I do think there is a communication barrier between me and my medical team,I feel its very much they decide I do that's it I'm in with the Dr about 5mins at the most,I did get given a booklet with basic outline of condition and that's it,and I didn't get that until I asked for it

[Cole57 in reply to mad4cavs]

Hi Mad4cavs

From my own personal experience so far you definitely need a medical team around you that you are comfortable with. You need to be able to ask questions and be given answers. A specialist or rheumatologist with knowledge of the disease is vital going forward for you. For example the specialist team I see have expert knowledge and do medical trials as well. They were able to tell me roughly the journey I could take and that the most important thing was to stabilise the disease and slow things down. But one thing that is important to remember is no one case of diffuse or limited is the same. Simply because it's a multi system disease. But diffuse is just rapidly progressive which makes it vital to have thorough tests and the right treatment plan put in place. As you've said this is your disease and your body the decisions that are made you should be comfortable with. But definitely try to get a specialist referral, it was the best thing I ever got.

Please whatever you try not to stress because stress is something that adds to the progression. I hope you get answers and get the right drs around you.

[mad4cavs in reply to Cole57]

I've been poorly this weekend vomiting I didn't take my meds today just felt too ill,are we supposed to try

[Cole57 in reply to mad4cavs]

Hi mad4cavs

If I was in your position I would call my dr and talk to them letting them know exactly what's going on and that you haven't been able to take your daily meds. They should then be able to tell you how to go about getting the meds in your system. The likelihood is they will lower the amount your taking or spread out the frequency until your body gets used to them all. But definitely try to talk to your dr even if it's just a telephone consultation.

I hope you feel better soon.

[Toekansaal]

Hi Shelley53a,

I do so feel for you and your sister, it's all so bewildering & scary. Especially at first. I was diagnosed 20 years ago & I've been on many different drugs & treatments during that time.

One of the difficulties of this horrible condition is that it's so different for each and every patient.

This site is the safety net we all have, where we can all look out for each other if only for the sharing.

Sending hugs to you both, please keep us posted x

[Shelley53a in reply to Toekansaal]

Hi Toekansaal

Thank you for your reply.

It has been scary, seeing how quickly my sister has changed, limited information sources and the internet. Life looked so daunting for the past year. However, admittedly being on this platform and also attending the Royal Free with my sister has given me hope.

My sister has options and for anyone that reads this and is new to this, please know that there are options.

You are right, each and every patient is different which makes it hard because I know people will come to this site and expect instant answers or solutions to their condition and will probably feel worse if they don't get it. But they should never lose faith or sight because everyone is here even if it's to offer a few words of support.

I do hope through your journey has been filled with support, love and receiving good care from the health service Toekansaal x

[mad4cavs]

I went to my rheumatologist appointment steroids reduced and pending blood results for Monday mycophenolate to go up to 1000mgs ,my consultant thinks there is improvement,I'm not so sure,but also asked me to attend an appointment in May to see professor Chris Denton,who comes to a local hospital once a year to see patients with scleroderma and offer advice on their treatment,needless to say I am very excited over this

[Cole57 in reply to mad4cavs]

Mad4cavs

I'm so happy that you are going to get see professor Denton it will be good for you to see someone with the best knowledge of the disease. I would definitely go armed with any questions or concerns you have because he will hopefully put your mind at ease.

Also I'm sure professor Denton will have a look at your blood work and look over your treatment plan with your rheumatologist.

But one thing I would say about improvement is it's always slow to be seen. I myself was sceptical when I was told my drug was helping but it was the small things that I hadn't really noticed that showed the improvement. Day by day I do now see the small changes but it's positive change and I hold on to them.

But I really hope things are slowly looking up for you health wise and May is not to far away. Thinking of you.x

[Shelley53a in reply to Cole57]

Hi Mad4cavs

I second everything my sister said.

Start writing things down from now so that you can ask everything you need to ask.

The changes will appear small but to others that see you will probably notice them more, I know that's been the case with Cole57, but I'm happy to hear things are moving in the right direction no matter how small they may appear x

[mad4cavs in reply to Shelley53a]

Thank you what I have learnt in the last 2 weeks is go with the moment sometimes I feel like I've run into a wall.and when this happens take time to chill and recharge,stop trying to battle through,also to say no to people,sometimes I just don't have the stamina to do things even if they have been pre arranged thank you for you help and guidance xx

[mad4cavs in reply to Cole57]

Thank you so much I really will start to take notes also I've done some research on the internet there is a link between the chemotherapy I had,(docetaxel)and scleroderma there are many more documented cases,I read up on their symptoms and mine mirror them this is why my rheumatologist has said she wants to present my case to him,as she hasn't had any experience of this but because professor Denton has the best knowledge of this condition ,and will be able to guide my treatment along

[Cole57 in reply to mad4cavs]

Hi mad4cavs

I'm so glad your feeling in a better place and have a plan of action in place for your meeting. Getting a treatment plan going forward is exactly what you need. Plus professor Denton may have treatments that your own dr might never have considered. Plus he sometimes recommends medicines at higher than normal doses that have proven to work. I really hope you walk away from that appointment knowing where you stand and where your going. Goodluck for May and please let us know how the appointment goes. Thinking of you xx

[mad4cavs]

Not having a good day today another water infection,that 3in 4weeks Drs are shut,so I'm drinking plenty' and putting up with it I'm going back to Drs Tuesday morning

[Shelley53a in reply to mad4cavs]

Hi Mad4cavs

Sorry for the late reply but do hope that you are better after your water infection x

[mad4cavs in reply to Shelley53a]

Still not good I've had another one had a different antibiotic that I had an allergic reaction to so I felt really poorly Dr has referred me to urology my blood pressure is up my kidney function is down Dr is linking all this to my infection,she has given me another course of antibiotics to keep and use in an emergency,