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#21 Joelf

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Posted 12 April 2012 - 10:41 AM

Hi Sooty,

I'm so glad that at last you're going to get some expert advice and treatment for your husband and hope that your appointment at The Royal Free goes really well.

Do be sure to let us know how he gets on.

Kind regards,

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#22 Amanda Thorpe

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Posted 12 April 2012 - 02:54 PM

Hello Sooty

Ade is Prof Denton's secretary an when I was first ill I know my family spoke to her many times about my admission etc. By now you will be home and I hope you have a clearer picture of what you are dealing with and a way forward.

Did you meet the specialist nurses Tani and Louise? Whether you did or not they are now just a phone call away for you and I suggest you use them as they are excellent.

Take care.
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#23 Sooty30

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Posted 20 April 2012 - 07:18 AM

Hi, all went well at the Royal Free. It was a bit of information overload but we now know he has severe diffuse scleroderma so far his skin, hands, neck and feet are effected. They were also thinking his lung problems were due the scleroderma as well but at this time they didn't have the CT results. He also has Raynaud's as well.

We came away and I think they said they wanted to start him on the cyclophosphamide within the month. Hoping to have it done at Chelmsford but have been warned it could be London if Chelmsford can not set it up in time. I thought this was to stop the progressiveness of the disease getting any worse in his lungs. To have this once a month for 6 months. Also I thought this was the way forward we were going. My husband on the other hand thinks they will decide this when they have the CT scan results, but I thought the CT results would make them decide if my husband had to be admitted to the Royal Brompton lung unit for more tests..We so should of written things down.

As you can tell we both think the opposite and are totally confused. We saw the lung specialist today who had the lung function tests and CT scan results.The lung function tests have slightly got better and the CT results shows patchy ground glass infiltrate which is seen throughout both lungs. It says this has predominantly subpleural and basal distribution; also dilated airway throughout the areas of abnormal lung indicative of traction bronchiectasis. Minor reticular infiltrate can also be seen within both lower lobes.It says he has wide spread pulmonary fibrosis with diagnosis of NSIP (non specific interstitial pneumonia)

The lung specialist has left me feeling like I don't understand. I know it's good his lung function is slightly better but what about the other? They are forwarding results to the Royal Free as well. When I asked him about the cyclophosphamide and the lung unit he said he respects anything the Royal Free wants to do which really wasn't the answer I was after.

Do you think I should contact the nurses to find out if the other treatment is going to start in just over 3 weeks? I remember them saying they would write to us within about 2 weeks, but everything seems such a blur.I am stressing so much to the point my hair is falling out and as you can imagine our house is very strained too. I feel as if my husband doesn't listen to what they say or only pick out the positive bits.

Sorry for rambling on, thankyou for reading

#24 Joelf

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Posted 20 April 2012 - 10:58 AM

Hi Sooty,

Thanks for giving us the update on your husband's appointment at The Royal Free.

Firstly, let me give you some help and encouragement.

.............the CT results shows patchy ground glass infiltrate which is seen throughout both lungs. It says this has predominantly subpleural and basal distribution; also dilated airway throughout the areas of abnormal lung indicative of traction bronchiectasis. Minor reticular infiltrate can also be seen within both lower lobes.It says he has wide spread pulmonary fibrosis with diagnosis of NSIP (non specific interstitial pneumonia)


I had an almost identical result on the CT scan of my lungs and have a diagnosis (like your husband) of NSIP. They call mine a fibrosing organising pneumonia as there was an element of consolidation at the base of my lungs which could suggest an overlap with Polymyositis. I also had the same treatment which has been suggested for your husband with extremely good results. Obviously everybody's disease is different as is their reaction to the treatment, but you can feel confident that your husband will be receiving the very best treatment possible, particularly if he is referred to The Royal Brompton Hospital, where the Interstitial Lung Disease unit is second to none. I can't tell you whether they will refer him straight to The Brompton; I went there before I went to The Royal Free so did things back to front, but I started my treatment almost immediately after having been into The Brompton for almost every lung test known to man. ;)

As far as the Cyclophosphamide treatment goes, he will have 6 monthly IV infusions; it's very important that he drinks copious amounts of water throughout and after the infusion as one of the less pleasant side effects of this medication is that it can affect the bladder. However, providing he does exactly as they advise him, he hopefully should not experience the side effects. I suffered with a little nausea after the 4th or 5th infusion but they do give an anti sickness drug beforehand which deals with this and also another drug infusion to protect the bladder. The main purpose of the Cyclophosphamide treatment, as you correctly surmised, is to prevent the lung fibrosis becoming any worse; in my case because a lot of the ground glass on my lungs was inflammation the Cyclophosphamide was able to remove it before it developed into scar tissue and hopefully it might do the same for your husband. I would emphasise, though, that every case of Scleroderma is different and my excellent result was due to a number of factors. Nevertheless, it sounds as if at last your husband is getting the treatment he needs.

I hope that the Royal Free or the Chelmsford hospital should contact you within the next two weeks if that's what they said; I remember being slightly staggered at the speed at which things happened once I got into the Brompton loop! Obviously the sooner your husband can start the treatment the better the outcome is likely to be. Certainly, if you do feel in need of further reassurance, I would contact the very helpful nurses and perhaps they can explain things in greater detail to you.

I know it's easy to say but please try not to worry too much about the treatment your husband will receive; I can testify from my own experience that it's not so terrifying as it sounds and hopefully it will improve your husband's lung function and the quality of his life.

:emoticons-group-hug:

My very best wishes to you both,

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#25 Amanda Thorpe

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Posted 20 April 2012 - 02:46 PM

Hello Sooty

May I strongly suggest you get your husband treated at the Royal Brompton (if you have a choice) not a local hospital, not only are the Royal Bromptom experts at this disease and treatment but once under their wing you tend to stay there. Any queries and ring the specialist nurses at the Royal Free, that's what they are there for.

Now you know what you are up against and once the treatment is underway you can have hope that your husband could stabilize or even get better. The stage you are at will end and it can really get better for your husband and therefore you.

Take care and keep posting.
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#26 Sooty30

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Posted 21 April 2012 - 12:33 AM

Chelmsford is maybe only on offer as one of the specialists there were from the Royal Free so is used to doing these treatments. We had been told that they don't want Keith having treatment at Colchester which is our local hospital as they may not have the knowledge to treat us as well as Chelmsford or Royal Free. Chelmsford is easier for us as I can drive there and take our daughter if needs be rather than trains and tubes in London. We are happy to go where ever as long as he gets sorted.

#27 Amanda Thorpe

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Posted 21 April 2012 - 09:59 AM

Hello Sooty

That's good news that if you do go to Chelmsford there is someone there who knows about administering the drug. Very soon your husband will be having treatment and we hope very soon feeling better.

Take care.
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#28 anotherday

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Posted 22 April 2012 - 11:09 AM

Hi Sooty30,

It's hard to find good health professionals, at least here in Brasil, I had pass a year with a wrong diagnostic... and wrong treatment. Now that I've found a good rheumatologist, I give preference to go with some specialist that she has indicated.

Maybe your husband is picking out the positive bits to convince you to not get too much worry; I've done this sometimes when I saw that my husband was suffering.

Is he doing physiotherapy as part of the treatment?
I'm physiotherapist and can tell that (concomitant with the medication) respiratory physiotherapy it's really important to mantain the function of his lungs and to improve his breath and tiredness.
(Sorry, my English is not so good).

Hugs

Ro

#29 Joelf

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Posted 22 April 2012 - 01:15 PM

Hi Ro,

It's interesting that you should mention physiotherapy for lung problems as The Royal Brompton run "singing for breathing" classes to help lung patients. It's actually run by a professional singer who came into the day ward and was constantly pressganging trying to persuade the nurses and patients to join in the classes. I love singing so consequently was first in the queue! ;)

On a couple of occasions when I went to The Brompton for my Cyclophosphamide treatment I was able to join in; there were about 6 or 7 of us and we must have looked quite a sight; some with our cannula's in our arms and some hooked up to oxygen machines, all singing "Daisy Bell (Bicycle built for two)" and "You are my sunshine" (I was the only one who knew all the words for both verse and chorus to those songs......how sad am I?) :lol: We would spend quite a time before actually getting down to the songs doing breathing exercises and one chap used to come into the hospital just for the singing sessions; he'd been a patient for years but enjoyed it so much and it had obviously become quite a social occasion for him. He actually had COPD (chronic obstructive pulmonary disease) and asthma and the singing classes had helped him no end with his breathing problems. It was also a novel way of filling in the time between having a blood test before my treatment and waiting a couple of hours for the results to come back before the infusions could be given.

I don't know what we sounded like, but the singer in charge was able to find a key that we could all sing comfortably in so I don't think it was too bad! (I tentatively suggested that perhaps we could sing selections from "Oklahoma", or "The Sound of Music" as I know all the words to those musicals as well, but I think she felt that it would be a little too ambitious!!) ;) :lol:

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#30 Amanda Thorpe

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Posted 23 April 2012 - 02:15 PM

Hello Anotherday

There's nothing quite like a good rheumatologist is there? I am so glad you have one.

Take care.
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#31 anotherday

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Posted 27 April 2012 - 04:13 PM

Joelf, "singing for breathing" sounds really good! :)
By the way, it is good to find something we like to do. Singing is very good to maintain the lung function. Keep singing! I would like a lot to be a good singer :)

Sooty30, in some cases, we need a more directioned treatment because we should go slowly in exercising our lungs and the treatment must be regular and progressive.

Hugs to all

Ro

#32 Sooty30

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Posted 29 April 2012 - 12:59 AM

We received a call from the Royal Free and now a letter, they want to start him on Rituximab on the 8 th of May. Not looking forward to this at all as not have no idea what to expect yet.

#33 Joelf

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Posted 29 April 2012 - 10:02 AM

Hi Sooty,

Well, at least your husband will be started soon on his treatment which I really hope will improve things for him.

We have some information on Rituximab here and here which I hope you'll find helpful.

I've been thinking of you and your husband a lot lately; please be sure and let us know how he gets on with his treatment on 8th May.

Best wishes,

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#34 Amanda Thorpe

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Posted 29 April 2012 - 12:23 PM

Hello Sooty

My dear friend had rituximab and thought it helped her so it may help your husband as well. I know that her health authority (may have the wrong org) had to agree funding for it so for your husband to get it at the Royal Free is fabulous.

Take care.
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#35 Joelf

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Posted 11 May 2012 - 02:16 PM

Hi Sooty,

I've been thinking of you and your husband and I do hope that his treatment went well on 8th May.

Do post and let us know, won't you?

Best wishes,

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#36 Sooty30

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Posted 12 May 2012 - 01:09 PM

Hello treatment went well he didn't react to the rituximab which was good. We were worried on the Monday as wasn't sure what to expect but was soon put at ease.he felt nice and spaced out when he had some medicine before the main infusion took place. Was a very long day as was on the ward for 9 and didn't leave till 6.

We did stay the night before in a hotel, glad we did and drove there to try and save a bit. Only thing I'm a little annoyed about is it says on the car park you can only park for 5 hours. Surely this can't be right if your having treatment there,we go back next Monday so will stay the Sunday night too as it is just easier.

He hasn't been too bad since then. I wouldn't say better at all just not any worse. He keeps trying to do things which is hard as he feels washed out. Like today he cut the back garden grass, our garden is small, I could do it in 10 mins. It took him 2 hours with stopping and starting but he hates it if I tell him not too do it.

I think we are going to fill out his disability forms soon. Did I read on here the Royal Free will help you do it? If so how do you raise the subject with them, or is it easier to just get on with it yourself, have just applied for blue badge too.

I freaked out today as I took my daughter swimming and when she was in the shower I noticed her hands were really blue, one thing they said to look out for, I am hoping it was just being in the pool too long as she was getting cold. Going to keep a close eye on her don't know how I'd be if my baby got ill too.

Hope everyone is keeping well and the sunshine we had today is here to stay xx

#37 Amanda Thorpe

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Posted 12 May 2012 - 02:49 PM

Hello Sooty

Firstly your husband should be taking it easy! When he wants to do big tasks like that get him to ask himself "Do I want to fight scleroderma or fight myself?" I know that sounds harsh but I could not believe what I was reading in your post. Dispense with the pretense, spending 3 hours doing what someone else could do in 10 minutes doesn't mean you're well it means you're in denial. I should know, **I have spent 5 years saying "I can do it!!" even if I couldn't.

Regarding benefits, there is a lady at the Royal Free who will help with this, contact Kim Fliglestone (Scleroderma Society trustee) to find out who it is but I don't know if it's a free service. Here's something else to consider, once you husband applies for disability living allowance (DLA and I'd be shocked if you didn't get it), what do you think would be their opinion of claim validity if they popped round to find your husband gardening? Now I have had DLA for 5 years and no one has ever come for a visit and I don't even know if they do visit but I had to illustrate the point, if your rheumatologist and general practitioner are going to correctly detail the severity of his disease he might not want to blow it off by gardening, however long it takes.

I am very sorry to say this but it is not normal for hands to go blue in the pool, if it was I would have spent my childhood being called smurf! I am not a doctor but it does suggest Raynaud's. The good news is that less than 2% of people with Raynaud's develop scleroderma which means there's a 98% chance your daughter will not develop scleroderma if she even has Raynaud's. I would make an appointment for her to see the general practitioner to put your mind at rest.

Take care.

**I am ignoring the fact that I still say this...
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#38 Joelf

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Posted 12 May 2012 - 11:39 PM

Hi Sooty,

Thanks so much for letting us have an update on your husband's treatment and I'm really pleased that he didn't suffer a reaction to the drug.

Amanda's absolutely right with her advice about him taking things easy; I know he wants to try and feel better and get back to some sort of 'normality' again but it's very important that he accepts that for the present he has to give himself a chance at the very least to recover from the treatment he's had and enable him to cope with the severe fatigue which is a very real symptom of the disease.

I also think (like Amanda) that you should make an appointment to take your little girl to see your general practitioner about her blue fingers (but not the same one who was so totally unhelpful to your husband!) if only for you to get some reassurance about her. However, I suffer with Raynaud's now and can't remember ever having blue hands as a child, so everyone is different.

Please know that I've thought of you and your family a lot and really hope that things improve for you all.

:emoticons-group-hug:

Best wishes,

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#39 Amanda Thorpe

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Posted 13 May 2012 - 02:49 PM

Hello Sooty

I forgot to say I never had blue fingers as a kid either and although I now have both scleroderma and Raynaud's the only other person in the family with Raynaud's is my mother and she does not have scleroderma.

The moral of the story is it's possible to have Raynaud's and not scleroderma even though someone else in the family has both.

Take care.
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#40 miocean

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Posted 13 May 2012 - 04:52 PM

Hi Sooty,

There is Primary Raynauds where the condition occurs on its own. I worked with a woman who had it since childhood. She almost always had a cup of warm tea in her hands. She has not developed scleroderma. I never had blue fingers until I had scleroderma for a couple of years. I have Secondary Raynauds, which is when it occurs as a symptom of another disease. Lately my Raynauds is worsening but I am 7 years into the disease. Still, get an answer for your peace of mind and keep en eye on her.

There was a case of a woman in the U. S. who lost her disability payments because she was observed gardening in her yard. I know how hard it is for your husband to accept his life IS going to be different and learn to deal with it. Suggest to your husband that whenever a task comes up to ask himself if he would rather spend his time and limited energy doing it or something more pleasurable, like playing with your child or going on a family outing.

All of you caregivers deserve medals!

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