Hi, I've been recently diagnosed with Scleroderma sine scleroderma, mainly affecting my lungs, and treatment is an in infusion of cyclophosphamide every 2 weeks for 6 cycles. Has anyone else had this treatment? Has it been effective?
I'm still trying to come to terms with diagnosis and find out more about it. Does anyone else have this version, I'm told it's a rare form of a rare disease, but not much else has been forthcoming from the specialists!
Hi MANDY121
I have Diffuse Cutaneous Systemic Sclerosis and I was diagnosed a year and a half ago. After other drugs not working I to was put on the same schedule of the same drug. It was thankfully effective on softening my skin and stopping my tendon friction rubs. But The Royal said it wasn't effective enough and so I'm currently doing 6 more cycles which I have once a month. I was also recently diagnosed with Systemic heart so the drug is also to help the inflammation and scarring that was found through a heart biopsy.
I would definitely say to you that if your rheumatologist believes this drug will be effective for the type of scleroderma you have then try it. I would also say that seeing a rheumatologist specialist is also for the best if you can. But whatever happens going forward don't worry or stress because as we all know on this board it only makes the disease worse.
As for the drug itself it's not been too bad. Yes I've lost some hair and the first few days after the cycle I've felt sickly but I was given anti sickness tablets for that. But everyone's side effects are different but I would definitely go into it open minded. Just prepare for anything and you will be ok. But I'm here if you need to talk further and goodluck and I hope it goes well🤗
Thank you, it's good to hear from someone on the same drug, so far i don't have any of the side effects, and it's early days to see an improvement i think, I've only just had 2nd treatment. I have seen a rheumatologist, but they didn't give me much information, i see him again in 2 weeks so going armed with questions. Had great support from Hammersmith pulmonary hypertension team and they reccomend cyclophosphamide too, so fingers crossed! I hadn't realised stress makes it worse until i found this site, but I'm not surprised. Good luck with your 2nd cycle of treatment, and i hope it goes well for you. Same applies if you need to talk I'll be here.
Hi Mandy, I have SS lung fibrosis and took cyclophosphamide in tablets for 5 months. This was 1996. The depot infusions are probably state of the art so do not worry. I had to stop when I got cystitis and was told the drug is still active for a while. I continued with Azathioprine for another 5 years. The only lasting side effect I think is a slightly weaker bladder. Your treatment is 20 years more advanced, you can be happy about this. I had a very aggressive onset which was successfully arrested after a few years. I have no progression whatsoever since 2001, my DLCO stands still at 63%. I live in Spain so there is no exposure to cold, I swim everyday. You will do better sooner! I am sure depot infusions do a better job and less damage. Best Wishes.
Hi Sootie, Thank you for your reply, it's good to know that the treatment worked for you. The doctors think it could reverse the inflammation in my lungs, so I am hopeful but trying not to get my hopes up too much, but any improvement would be great at the moment, especially when you say you've had no progression in such a long time, that really does give me hope. I'm to take Mycophenolate I think after as a maintenance drug so I hope that will stop progression too. Cold doesn't affect me thankfully, but i'd love to get back to swimming again as I really enjoy it. Best wishes Mandy
Have had the cyclo. treatment about 2 years ago now and go for regular blood tests every month now..had to go every two weeks to begin with then down to monthly tests. This is to keep an eye on the mycophenolate drug that follows on with the treatment ..for me anyway.. don't know if you will be put on the same drug. This myco. drug is to stop further damage to my lungs and so far it has. I also go for lung function tests to make sure I am not getting any worse. The damage done to my lungs is irreversible so can't be cured but, as I wrote before, further damage has been halted.
I have other problems with having Ssc. so hopefully you will not have these same problems...so I won't bore you with my ailments, just don't read too much online on the S.sc as it will drive you potty! Everyone with this disease is affected differently so you can't really give definitive answers on what ails you...GP's only know so much...even the consultants can only give so many answers to your many questions...all I know is...take each day as it comes and what is thrown at you ..deal with it, not much else we can do is there? Best wishes going forward pet!
Hi Marilyn, Thank you for your good advice, I find it very frustrating not being able to get answers to my many questions, I will have to learn to take each day as it comes, I'm not very good at that at the moment!
I believe I'll be going on to Mycophenolate after, it's good to know it has stopped further damage for you, hopefully it will for me as well. Best wishes, Mandy
Advice needed
Act of Love
Low thyroid levels 
RITUXIMAB FOR SYSTEMIC SCLEROSIS?
Chronic Kidney Disease 
