Hey all,
So mananged to get an emergency appointment, is there anything I should ask for in terms of medication or treatment.
I have been so scared as I can see my husband deteriorating I just want him to get better and hope something will slow this scleroderma down 🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻
Hello Kc1411, pleased you have managed to get an appt, I can only suggest Mycophenolate, that"s what I take, and as far as I can tell my scleroderma is stable at the moment, I hope it goes well at the hospital appt with your husband, sending hugs x
Thanks hun do u mind telling me a bit more about this drug I know everyone is different but do u have any side effects? What do u find it helps most with? Anything u can tell me id be great full xxx
Hi Kc1411, Mycophenolate is an immune suppressant , it helps to slow down our overactive immune system which in our case attacks our bodies rather than helping us. I take 2000mg everyday, and thankfully have tolerated it, I have blood tests regularly so they can monitor any side effects should they occur, I hope this helps, but we are all different and its finding something that works, a case of weighing up the pros and cons
Kc_1411,
I take mycophenolate (1000g x twice a day), it has been a marvellous drug for me, have been taking it since 2015. This drug is well monitored regularly, I have monthly bloods and urine tests done and see my rheumatologist every 6 months which he follows up with various other tests. This drug has really helped cos I got so bad I was in a wheelchair but now walk small distances with a stick. It has been amazing.
Good luck.
Write everything down that you want to ask and you could hand that list to the rheumatologist for their reference.
Or read from it and make notes on what he answers so you don’t forget anything he replies with! 
I’d say the biggest thing is to arrange and agree his next appointment - if you want him to be seen soonest rather than months down the line for a review to see how he’s doing in new medication.
Hi there, the main thing is you have an appointment! Step 1! The most important step. I think you need to take the pressure off yourself. It is not your responsibility to solve your husbands medical problems...that is the job of the specialists at the Royal Free. They are there to assess how things are and determine what they deem the most appropriate treatment for him. They will be looking at a variety of factors: symptoms, blood results, probably heart and lung function tests to name a few. Depending on what they find they will make a decision about what drug is best. Please don't feel that you have to find out everything about medications and treatments so you can ask them to put him on something. It is just putting a lot of worry on you.
You can sit with your husband and make a list of the symptoms he experiences and then give them that or read it too them so you know they have full information. By the sounds of it their hardest job will be convincing him to take whatever they ask him to. But, cross that bridge when you come to it.
Deep breaths. I hope that it works out for you both.
Hugs
Lxxx
Thank you Lucy great advice well I’ve spoken to him and put it straight he has no choice he needs to go on meds or he will die. So he has agreed to atleast try and that’s all I want whatever happens in life is in gods hands but atleast he can say he tried. I hope something works. He missed his last appointment which was due in jan because of bad family situation which maybe why he has got so bad plus weather thanks Lucy xxxx
Hold on in there! There are lots of reasons why things can deteriorate but life stress seems to be one of the major factors for many people. When we are going through emotionally tough times it is like the immune system seems to go into melt down! I have had two really bad flares in my time. One was the year from hell, split up with my partner, had to buy him out of the house, was seconded to do a managerial job and my grandfather died. Not surprisingly things went a bit tits up. On the day of his funeral I had been up to the Rheumatology unit with digital ulcers on every single digit getting a diagnosis of scleroderma and getting booked in for a week of Iloprost. The second flare was a time when I was doing my PhD and my Mum was diagnosed with cancer. When she died 18months later after a very difficult period I was really physically and emotionally in a bad place. I had to stop my PhD, change my job and suffered about 6months of depression. My scleroderma and inflammatory arthritis flared really badly and it took a long time for things to come under control.
So, I hope for your husband that he is in a situation that will resolve with time and if he can do all he can to look after himself and calm his emotions down then things may also calm down with his immune system.
Look forward to hearing how you get on.
Lxxx
Hello KC
I take Hydroxychloroquine. I looked it up and found that is one of the older drugs that was used for this condition - some consultants prefer it as it has less side effects. My scleroderma hasn't gone away but it has calmed down a bit. Learning of other people's drugs doesn't mean they are the right ones for you. There are so many elements to this condition that everyone's illness is different and I think we have to trust the medical people to decide what is the right thing for a particular patient. Go for your appointment with an open mind. I know it's all very worrying to begin with but my consultant says, "we can't cure it but we can manage it." We have to accept that I'm afraid and face life with a little optimism. Very best wishes to you and your hubby and I hope your appointment goes well and gain some peace of mind.
Thank you all guys think I was going crazy yesterday don’t know what I would do without all ur support ur great people xxxx
If you live near a reputable accupuncturist and Traditional Chinese Medicine Doctor, you should consider it. You may be pleasantly surprised. Many double blinded studies on autoimmune conditions using TCM look VERY favorable.
calcinosis at tip of finger
Prominent veins on fingers
ulcerated finger tips
