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Systemic sclerosis with interstitial lung disease


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#1 marlene

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Posted 31 May 2011 - 04:02 PM

I had a cough and hand sores for about 15 months, I mentioned it quite a few times to my doctor who kept reassuring me it was viral. I had chest x rays and blood tests etc and was told they were okay. I didn't understand it as I felt like I was slowly dying inside and no one could see it.

I changed doctor practices and the new doctor saw it right away. I was referred to the chest specialist and after listening to my chest he confirmed that it was highly probable that I had an autoimmune disorder. I had lung function tests, blood tests and a ct scan which confirmed I have systemic sclerosis with interstitial lung disease. My lungs are 50% damaged and the doctor was very surprised. I started a steroid and cyclophosphamide and aquatovone treatment to suppress my immune system but after 3 weeks on it, I started having fevers of 105 and these were about 4 a day for exactly 4 weeks and then 4 weeks of my skin shedding off. It appears that I have had a severe drug reaction but they don't know which one. I have opted not to try the drugs again.

I struggle with the lack of knowledge there seems to be about the disease. I am going to be part of the doctors exam next week to try to highlight it more. I have so many answers and the chest consultant and rheumatologist are excellent but I can see that they can't answer a lot of my questions. I got diagnosed at the end of January 2011. I am due to have an illoprost infusion next month to help the Raynaud's. Any advice on the condition would be gratefully received.

#2 Joelf

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Posted 01 June 2011 - 01:23 AM

Hi Marlene,

A warm welcome to these friendly and informative forums!

I'm very sorry to hear that you've been diagnosed with Scleroderma and Interstitial Lung Disease and also that it took several visits to your doctor before they were able to recognise the problem.

I can totally empathise with you as I also have Systemic Sclero with Interstitial Lung disease; in my case thankfully my general practitioner was on the ball and sent me straightaway for a chest xray. I was then referred to The Royal Brompton Hospital where I had Cyclophosphamide and steroid treatment as you did; in my case I'm thankful to say that it was successful. I've included a link to Pulmonary Lung Involvement which I hope you'll find helpful and informative.

I'm sorry that the drugs you received didn't help you; unfortunately we all react differently to the same drugs so they're not always successful. I'm assuming that you are being treated by a Scleroderma specialist which is very important as many rheumatologists don't have the expertise to deal with this complex disease.

I've also included a link to Scleroderma to give you some general information which I hope will answer some of your questions.

At least now that you've found our forums and joined our community you will have plenty of understanding support to help you with this bizarre disease. Do please keep posting and let us know how you get on next week with the doctor's exam; anything that highlights Scleroderma is a very good thing! :emoticons-group-hug:

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#3 Amanda Thorpe

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Posted 01 June 2011 - 05:23 AM

Hello Marlene

Welcome to the forums! As Jo has already suggested you may want to consider seeing a scleroderma expert who will be able to answer your questions about the disease, except for the one we all want answered...how will I progress...almost impossible to say! :emoticon-dont-know:

The Scleroderma Society U.K. hosts local groups throughout the U.K. that enable people with scleroderma to meet each other. They also provide a helpline.

Are you going to have the Iloprost infusion over 6 or 24 hours? It is better tolerated over 24 hours and should you have side effects like headache and nausea, make sure you ask for pain relief and anti emetics. Most people find Iloprost to be a helpful treatment and hopefully so will you.

Take care and keep posting.
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#4 Amanda Thorpe

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Posted 02 June 2011 - 02:14 PM

Hello Marlene

Ask your general practitioner or even your rheumatologist to refer you to a scleroderma expert, this link takes you to the list provided by the Scleroderma Society UK and covers all specialties. There may be a nearer rheumatologist on it for you?

I hope the Iloprost goes well with minimal side effects, if it doesn't shout!

Take care.
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#5 Joelf

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Posted 02 June 2011 - 02:35 PM

Hi Marlene,

I'm pleased to hear that you've had such a positive result for your finger ulcers.

I've included a link to Raynaud's which gives you some more information about the condition and also another couple of links to Iloprost and also Iloprost for Raynaud's treatment so you'll be well informed when you have your treatment. :)

At least the two medical students that diagnosed Scleroderma correctly must be feeling a little more confident about their exam next week! ;)

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#6 Jedicoe

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Posted 07 June 2011 - 05:13 AM

Hi Marlene and all,

I was going to start a new thread to introduce myself but given the similarity of content and title I was going to use I figured you wouldn't mind if I gatecrashed your thread.

My wife was diagnosed last year with Systemic Scleroderma with Interstitial Lung Disease after a period of feeling really ill with predominantly arthritic symptoms for some months. Her Rheumatologist was excellent and expressed concern about her breathing at the first consultation even though Jackki hadn't really noticed any breathing issues herself, his concern led directly to the Scleroderma diagnosis.

One thing that strikes me is that sufferers inevitably slow down physical activity through arthritic pain and therefore don't tend to notice the significant shortage of breath in day to day life. Multiple symptoms tend to be masked by the dominant issue of the moment I guess so dependency on accurate and timely diagnosis seems critical.

Anyway, after a year or so of monitoring her breathing with a gradual decline noticed in diffusion capacity (I think that was the term used) she is due to start treatment tomorrow with a course of Cyclophosphamide and steroids. Things feel very real and rather scary right now so this forum has been a big help in finding information and support.

Fingers crossed and off to Leicester Royal Infirmary we go!

Adrian

#7 Joelf

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Posted 07 June 2011 - 07:17 AM

Hi Adrian,

Welcome to these forums to you and your wife!

I'm sorry to hear that she has been diagnosed with Systemic Scleroderma and Interstitial Lung disease; like Marlene and many of our other members, I am in the same boat, so can understand exactly what your wife is going through. I've also had 6 months of IV Cyclophosphamide and am now on a low dose of steroids and Azathioprine (immune suppressant) (among other things! ;) )

Just like your wife, I had dreadful arthritic pains in my joints, but fortunately as I was very fit at the time, I soon realised something was wrong with my breathing and was therefore able to be dealt with very quickly which meant that my lung disease was still at the inflammation stage and so my treatment was very successful. I was also extremely fortunate in that I was referred to a top lung hospital where they were able to recognise the fibrosing organising non specific interstitial pneumonia (rather a mouthful!! :lol: ;) ) on my lungs as Scleroderma.

In my earlier post to Marlene, I've included a link to Lung Involvement and I've put another link here to Interstitial Lung Disease and also Cyclophosphamide which I hope will be informative to you. We also have a page on Cyclophosphamide Treatment.

I'm sorry that you're both feeling a little scared and anxious about the treatment your wife will receive; please don't be as the infusions are not really as bad as you would imagine. The most important thing for your wife to remember is to drink copious amounts of water before, throughout and after the infusion to protect her bladder (one of the less pleasant side effects of the drug can be that it affects the bladder) but I followed the hospital's instructions to the letter and had no problem.

Do post again and let us know how your wife gets on with her treatment.

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#8 Amanda Thorpe

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Posted 07 June 2011 - 04:03 PM

Hello Adrian

Welcome to the forums! Many people have had cyclophosphamide and found it successful, I am sure your wife will be one of them. If you're new to illness and treatments it most seem a daunting prospect but once you've got this under your belt you'll feel very differently.

Take care and keep us posted.
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#9 Jedicoe

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Posted 10 June 2011 - 04:05 AM

Thanks for the encouragement and I am happy to report that my wifes first treatment went ahead without problems on Wednesday and we are both feeling somewhat less anxious now that things are under way. Will let you know how it goes following the course of treatment and after her next consultation. Adrian

#10 Amanda Thorpe

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Posted 10 June 2011 - 05:54 AM

Hello Adrian

Well that's great news! :emoticon-congratulations: I hope the overall results are also great news!

Take care and keep posting.
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#11 Joelf

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Posted 10 June 2011 - 06:56 AM

Hi Adrian,

I'm so pleased that your wife's first treatment went well and that you're feeling a little less worried.

May the rest of her infusions go as easily and as well and hopefully she'll show a marked improvement at the end. :emoticons-yes:

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#12 suze932

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Posted 12 June 2011 - 05:37 AM

Saw your post and forgive me for barging in! I have had digital ulcers/calcinosis constantly for two years; with more forming; and following my Royal Free checkup at the Sclero clinic, the consultant recommended Iloprost infusions at my local Day Stay unit in hospital (over 5 days I think) - dates and details to be confirmed. It was interesting to hear other members' experiences and advice on tolerating the treatment. :thank-you: I plan to go home each evening after the treatment and what to ask for if and when side effects are felt. Helps to feel a little more in control!

I also have to have an endoscopy, to investigate my oesophagus/upper stomach - haven't had one of these for a couple of years and, although with a local anaesthetic it is quick, I am not looking forward to it. However, it is a necessary evil to put up with for a complete picture of the horrible nausea/reflux/GERD, so take a deep breath and be thankful that my Scleroderma is being carefully monitored, rather than ignored.
Thanks gang :flowers: ^_^