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ILD post chemo and wasted muscles


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#1 Sunnysarah

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Posted 26 August 2013 - 02:23 PM

Hi all, I have limited sclero with ILD, finished 6 months of chemo in June and started predisolone/mycophenolate about 6 weeks ago.

 

I began to have more energy and less shortness of breath about 2 months into chemo and until a couple of weeks ago felt like I had a new lease on life...unfortunately I now feel almost like I was before chemo :(  ... Is this usual before mmf kicks in?..

Also I have lost so much muscle and wonder does anyone have any tips of the best exercises or any other advice on which muscles to target I'm starting to walk with a stoop lol ...only 47.

Apart from that all is good and I feel very upbeat and not at all dragged down by all this inconvenience of a disease :) ... Always glass half full.....thanks in advance for any replies.

Sarah



#2 Joelf

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Posted 26 August 2013 - 10:52 PM

Hi Sarah,

 

Welcome to these forums!

 

Like you I have ILD (Interstitial Lung Disease) and Limited Scleroderma and I underwent 6 months of Cyclophosphamide treatment which in my case was very successful. I now take Azathioprine and Prednisolone, rather than Mycophenolate and again felt very much better after a couple of months into the medications. I was diagnosed about four years ago. I'm just including our warnings for Glucocorticoids, Steroids (Prednisolone) for the benefit of any new members who are reading this thread.

 

Before I was diagnosed with Scleroderma, I was very fit and continued to go to the gym throughout my treatment; I still do go now, but I'm not quite so fanatical about it as I was, as my joints tend to be more painful these days and that does limit the amount of exercises I can do. Perhaps if you do decide to join a gym, the instructors may be able to advise you about exercises to improve your muscle tone?

 

Again like you, I tend to be fairly upbeat and in many ways having Scleroderma has given me a new interest and enabled me to meet some fantastic people.

 

Kind regards,


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#3 Sunnysarah

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Posted 27 August 2013 - 12:24 PM

Hi Jo, thanks for the reply...mmm never been one for keeping fit...apart from walking the dog. :) But any incline or steps are pretty tiring and so over time muscle has declined. I have an appointment with respiratory physio onThursday to get the low down from a physiological point of view; just wondered what others had found or do to help with it. I'll post the outcome...may be useful. :)

Hopefully the drugs will kick in soon and only a blip. I felt like I'd been given my youth back for a couple of months.  Thanks again and I will check out the leaflets.

Cheers

Sarah



#4 Sunnysarah

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Posted 29 August 2013 - 01:46 PM

Just to update anyone who may be interested; I saw local respiratory physio today,  she has no knowledge of scleroderma and ILD but suggested that I practice breathing exercises from the duodenum, which I have never done as will help when I get extra breathless and helps 'keep the lower part of the lung clear from built up moisture etc'.  I don't have any problems with this but it all sounds like sensible advice. I suggested Pilates/yoga to help and she thought that would be a good idea to help with the breathing and core muscles.....may help with my stooping. I was a little disappointed that she didn't offer more info understanding the disease from a physiological point of view but never mind.

Spoke to Brompton about deterioration in breathing and they are bringing my appointment forward for another lung function and consultation...so good news there....such a super hospital :)

Sarah



#5 Joelf

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Posted 30 August 2013 - 11:36 AM

Hi Sarah,

 

Thanks for giving us an update on your latest appointment. I'm afraid that it's very often the case that other consultants, rather than scleroderma specialists, have actually very little knowledge and expertise about such a complex disease.

 

I would heartily endorse your opinion of The Royal Brompton, being a patient there myself. :) Interestingly, on one of the occasions when I was there receiving Cyclophosphamide treatment, they were holding "Singing for Breathing Classes" to encourage patients with lung problems to breathe correctly; the idea being that breathing through the duodenum would help with shortage of breath, as your local respiratory physio had suggested. I joined in a class, sang my little heart out and had a wonderful time, as I love singing (I was first in the queue!! ;)) and some of the patients came into the hospital specifically for the singing classes as they enjoyed them so much! :P

 

Kind regards,


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#6 Sunnysarah

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Posted 30 August 2013 - 01:17 PM

Hi Jo, no probs....I don't think anyone would want to endure listening to me singing my heart out lol... Keep that to myself me thinks..:)... Am currently looking for a local yoga and or pilates class...like the idea of the whole ethos of yoga etc...just have to force myself to get into the swing of it though...bit of a shut the doors,close he curtains and snuggle in front of fire after work in the autumn/winter:)

Best wishes

Sarah

#7 Sunnysarah

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Posted 01 November 2013 - 12:30 PM

Hi all, hope you are all doing ok :)

Just to update, I went to the Brompton couple of weeks ago had a lung function and saw specialist. My lung function has got better so that is really good news:) and my breathing is better than when I first posted but not as good as it feels funnily enough considering the lung function results.

 

Anyway I am now on 1g mycophenolate and about to come off 5mg steroid. Specialist said worsening SOB probably interim between chemotherapy and mycophenolate. Will see how I get on without steroids, my next appointment is in January.  I must say though now working full time in college I have never looked forward to a week off more, feel rather run down.

 

Am not really certain how much impact reduction in lung function has on overall life, not 100% certain what all the stats about lung function actually mean either.. .if anyone has a little glossary that would be helpful thank you...just the important ones.

Hope the waffle makes sense and is helpful to anyone in the same in between situation. Also saw local respiratory physiotherapist, she'd never heard of scleroderma...and really just showed me exercises on how to breathe from diaphragm...for when needed!

Best wishes to all...keep warm:)

Sarah



#8 judyt

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Posted 01 November 2013 - 01:12 PM

Hi Sarah,

 

Nice to hear that you are doing somewhat better.   Not surprised that you are feeling tired after working full time and everything else!!

 

You ask about translating and understanding lung function test results.   Not easy I know.   Several years ago after a test I was looking for help and came across an article called "Understanding your Lung Function Test Results" or something similar.   The good new is that it was helpful, the bad news is that I have never been able to find it again :emoticon-dont-know: :crying:.   At the time I did not bookmark it then when I went back to read it again it had vanished.

I am putting this dilemma up here in the almost vain hope that somebody else might know what I am talking about and be able to guide us to it.

 

Here's hoping

 

Judyt



#9 Joelf

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Posted 02 November 2013 - 01:24 AM

Hi Sarah,

 

I'm very pleased to hear that you've had your appointment at the Brompton; it is lovely to have a medical team in whom you can have confidence.

 

I think that this is the link that Judy mentioned Understanding your breathing test results. We also have information on our medical page Common Medical Tests for Scleroderma and I think this one will be of particular interest to you: Pulmonary Function Testing.

 

I was very fortunate in that the treatment I received from the Brompton was successful and I can honestly say that my lung function has improved dramatically (my consultant told me they could pull people in off the street with worse lung function test results than mine!! ;) ) and I'm monitored regularly with lung function tests every six months. However, I know my lungs so well now that I can usually predict whether I'll have a good result before I have the test.

 

Kind regards,

 


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#10 Sunnysarah

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Posted 02 November 2013 - 07:52 AM

Hi

Thank you for your replies Judy and Jo, the links have been helpful thanks if somewhat heavy going; but have got the gist; bottom line really is we are how we are and can't change things. I think really the most important thing is getting to know and recognise good days and bad days and in my case I wonder whether I should slow down sometimes.I carry on absolutely as normal, full-time work, housework, two boys 12 & 14, hubby self-employed - so his books etc etc ... am I dramatising or do you ever feel the lung damage makes you feel a bit tired sometimes? My FEV1/FVC are 55.8% and 58.9% - is this what I should be reading...although the lung function person said my un-damaged lungs are super healthy :)... I only really have trouble with stairs, hills and lots of exertion.

Thanks again for your replies :)

Sarah



#11 Amanda Thorpe

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Posted 03 November 2013 - 06:15 PM

Hello  Sarah

 

Anything that restricts oxygen is going to make us feel fatigued, When first diagnosed with heart failure I was so out of breath, even in conversation, and was more tired and fatigued than usual. Remember that scleroderma causes fatigue and if you watch the video I strongly suggest use of the word NO! Whether you like it or not you are  going to feel the impact of scleroderma on your energy levels, whether a little like Jo or a lot like me who knows, what I do know is that fatigue cannot be worked through, around, over or any other way of making like it's not there.

 

The wall is the word used to describe what you hit or what falls on you if you ignore symptoms of fatigue and of course it takes longer to recover from an encounter with a wall than it does responding to feeling the first flush of fatigue.

 

Fatigue in scleroderma IS NOT purely an emotional response to what's going on, it's a real, physiological response in the body to a serious heavy weight disease.

 

Take care.


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