SimonW

Cyclophosphamide

9 posts in this topic

Hi all,
Recently been diagnosed with scleroderma.
On lots of medication and halfway through a six month course of cyclophosphamide once a month for six months given intravenously .Wondering if anyone else has had similar treatment and was there any improvement in symptoms? Look forward to your replies.

 

Many thanks.

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Hi Simon,

 

Welcome to these forums!

 

I'm sorry to hear that you've been diagnosed with scleroderma.

 

Fortunately (or unfortunately, depending on your point of view) I have had first hand experience of the cyclophosphamide treatment you describe. I had six IV infusions once a month for six months of this drug for scleroderma interstitial lung disease (fibrosing organising pneumonia) and in my case it was very successful. Before the treatment my oxygen/carbon dioxide diffusion rate was down to 48% and after the cyclophosphamide treatment it went up to 73%, so I was very pleased (and so were The Royal Brompton Hospital, where I received my treatment; I was their star patient!! :yes: )

I would emphasise, however, that my lung fibrosis was caught very early, whilst it was still in the inflammation stage, so therefore easier to treat, plus the fact that I was very fit at the time and so my lungs were in A1 condition (barring the interstitial lung disease, of course!) This was in 2009 and mostly my lung function tests have been in the 80% - 73% range since then (my consultant has said that they could pull people in off the streets with worse lung function tests than mine! :wink:) I have had the occasional blip, but generally speaking I can tell you that the treatment I've received has been very successful. Cyclophosphamide is a very strong drug and should certainly be treated with respect, but in my case it was very effective, so the possible side effects were worth it.

 

Since I completed the cyclophosphamide treatment, I've been taking azathioprine and prednisolone; I have had brief periods when I've had to come off them for various reasons and I've found that this has caused a little flare in my lungs, so I really feel I shall be taking these medications for the foreseeable future.

 

As you're receiving this treatment, I assume that you're being treated by a listed scleroderma expert; we do recommend that our members, if possible, consult a scleroderma specialist as this complex disease does require knowledge which can be beyond the expertise of a general rheumatologist.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi Jo,

 

Thanks for the reply. That's great news the cyclophosphamide improved lung function. Mine is currently down to below 50%. So hopefully there will be an improvement.

 

I'm currently being treated under a rheumatology consultant who is excellent and has been very helpful and explained everything to me. But I did check out the list of scleroderma experts and there's one nearby so I'm going to ask for a referral.

 

Many thanks again.

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Hey Simon, even if your function never improved you can still live. I had a friend who lived with 50% function for years! I say "had" because we lost touch.

 

However, I've no doubt that your experience will be one of improvement that you'll be able to share with us.

 

I missed out on cyclophasphamide because by the time the fibrosis was found I was past the inflammation stage and into the oh, dear, too late stage. Mine is myocardial fibrosis, treated with implantation of a bi ventricular ICD. The wonders of modern medicine.

 

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Simon,

 

I too underwent the 6 month course of cyclophosphamide treatment approximately 6 years, not long after being diagnosed with diffuse systemic sclerosis. I was also prescribed Mycophenolate for my other symptoms, particularly my very tight skin and had 3 monthly Iloprost infusions for my severe Raynauds.  

 

My TCLO function dropped from 57% to 45% and it has hovered around the mid 40s ever since. My consultant says that my lung function is stable so I don't worry about it and the hospital keep a close eye on things. I hope that things improve for you and as Jo demonstrates different people respond differently to certain medications.

 

Good Luck,

Helen

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Hi,

 

Thanks for replies Amanda and Helen best wishes to you both!  I'm going for my fourth cyclophosphamide infusion next week,for diffuse scleroderma, current medication is pain medication, Dapsone, Nifedipine, ferrous fumerate, omeprazole, prednisilone, alendronic acid, adcal D3, aspirin and parecetemol.

 

My original post was asking if anybody had any improvement after treatment or over time? Would be great to hear of anybody who has. I understand everybody reacts differently to medication and there are lots of people worse off than me and I am being positive!

 

Has anybody had improvement with the tight skin? Mine is particularly bad in my hands with my fingers curling over ,also any tips for digital ulcers ?

Many thanks
Simon

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Hi Simon,

 

My skin involvement is very minimal (merely the tips of my fingers) so I can't really help you from personal experience with tight skin.

 

However, I've included links to our medical pages on Skin Fibrosis and Treatments for Digital Ulcers, which I hope you'll find helpful and informative.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi Simon,

 

Tight skin has been a significant symptom for me, particularly affecting my face, around my mouth and on my hands - resulting in lovely fat sausages where I once had fingers. Aah, how I miss those fingers and being able to fasten buttons or pick up coins. My sewing days are over, oh wait a minute, I hated sewing anyway, just trying to get a bit of sympathy.

 

It is a really tricky one to answer, Simon, as while I can't say there has been any improvement in how tight my skin now is, it has not got any worse for the last 4 years perhaps. So, does this mean the the Mycophenolate has stabilised the skin or would this have happened anyway? The only way of knowing for sure would be to stop taking the Mycophenolate and see what happens. Obviously I am very reluctant to do this as I don't want either my lungs or my skin to get any worse,  My consultant has told me several times that people can just suddenly have spontaneous softening of the skin, so you never know!

 

For my digital ulcers I had Iloprost infusions every 3 months, which again, I find it difficult to say how much it helped or not. It never cured the ulcers and my Raynaud's was always ever present, but I didn't develop any new one. So the only way of knowing again how useful the drug was would have been to stop having the infusions. As a sufferer yourself, knowing how painful digital ulcers can be I did not want to chance it.  Once the drug Bosentan became cheaper to prescribe and my consultant was allowed to prescribe it without having to apply for the funding I have been taking this and stopped the Iloprost. My ulcers remain the same, no better, no worse.

 

I am not sure how helpful any of my post will be to you, all I can say is you have nothing to lose by trying the various treatments on offer, just don't expect miracles.  Probably the best thing all us affected by Scleroderma can do is to keep a positive attitude and carry on smiling.

 

Anyway enough rambling for, I wish you well and hope that you find a treatment that helps.

Happy Holidays to everyone,

 

Helen.

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Hi thanks for the replies,like you say I think it's just a matter of trying all treatments and hoping for the best! Digital ulcers seem to be improving slightly I'm taking coracten for those and hopefully the skin may improve.Thanks again and best wishes

Simon

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