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Biomarker for Diffuse Scleroderma skin has been discovered!


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No PAH but PVH...rheumatology visits


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#1 Amanda Thorpe

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Posted 25 August 2011 - 03:54 PM

Hello All

So I was at the Royal Free in June and August with the pulmonary hypertension clinic and rheumatology, in June I saw Prof Rheumatologist and in August my favourite Rheumatologist Dr Benji Schreiber.

I do not have PAH (hooray for me) but according to Prof Rheumatologist pulmonary venous hypertension which is basically a result of the knock on effects of left sided heart failure. Dr Schreiber explained that the pressure on the left side of the heart is high (heart failure)and therefore so is the pressure on the right side (knock on effect). If I had PAH the pressure on the left side would be normal and only high on the right. Get it?

I also have a "double whammy" when it comes to fatigue because I have it from the scleroderma and the heart failure, although I have a bi-ventricular ICD in I am still technically in heart failure with an ejection fraction of 35%-40% but hey this beats 32% from last year!

I am back on mycophenolate (MMF) instead of methotrexate, despite reducing the dose I became unable to tolerate the methotrexate and had planned to just stop taking it so this works well. I am only taking 500mg bd of the MMF whereas I was on 1000mg bd when I took it a few years ago but had to stop after 10 months due to side effects. I am also on a water tablet and off of the amitriptyline because it can cause arrythmias. I didn't taper off of it as slowly as I should have and would encourage anyone else coming off of it to do so over a period of weeks NOT days. Needless to say the nerve pain has come back as a result of no amitriptyline, if it gets worse I will see my general practitioner as I now have one that will do something for me.

Unfortunately I am still the owner of foot ulcers! They are not ischemic ulcers (hooray) but result from the skin just breaking down. I had a large one on my right foot that has nearly healed and I was looking forward to having at least one foot bandage free but guess what...yep another ulcer has opened up on that foot and it's getting bigger by the day. The ulcer on my left foot started to heal in one part of it and grow in another! I have now had the lovely district nurses coming in to dress them since January and in December I will have had ulcers for a year...a year! I ask you...how old is your oldest ulcer?

I have to say that I was prepared for bad news when I saw the doctor(s) bearing in mind what happened last year and it took me a few days to embrace that it was good news, no PAH, I will always have heart failure and PVH is common in people with it.

Well that's it for me so take care!
Amanda Thorpe
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#2 Shelley Ensz

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Posted 25 August 2011 - 08:26 PM

Hi Amanda,

Oh my goodness gracious! I can't even imagine having so much to deal with at once! And you are handling it all with enormous grace and aplomb.

You are simply "de tops", Amanda. Please put your feet up (literally) and coddle them awhile.

:emoticons-group-hug:
Warm Hugs,

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#3 Joelf

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Posted 26 August 2011 - 08:09 AM

Hi Amanda,

So basically apart from heart failure, pulmonary venous hypertension, double the amount of fatigue and horrible painful ancient ulcers everything's hunky dory!! :lol: :lol:

Irony and joking apart Amanda, I think you must be one of the bravest people I know!! :yes: I'm so pleased that you've had good news (of a sort!) from your Royal Free appointment. You make me feel quite humble and I shall never again think of having even the slightest suspicion of a moan if I'm feeling under the weather. :unsure: Also you always manage to be upbeat and humorous with it as well!! :you-rock:

I think you've said in previous posts that you've got some gastro involvement as well? I really hope that the MMF medication helps you and hopefully you'll be able to tolerate it much better at the lower dose.

Looking forward to seeing you soon. :emoticons-group-hug:

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#4 Deb1million

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Posted 04 September 2011 - 07:47 PM

Hi Amanda,

I'm pleased that your lung results are slightly improved, though I wish you didn't have so many other problems to cope with! You really handle it all so well, and I'm certain that positive spirit is like winning half the battle with chronic illness.

No foot ulcers for me, thanks all the same! Sorry yours are approaching their first birthday, we will have to give them a GOING AWAY PARTY!

:emoticons-i-care:

Take it easy,

Debbie

#5 georgie1111

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Posted 05 September 2011 - 01:35 PM

G'day Amanda , I was sorry to learn how sick you are; this scleroderma is just soooo nasty !!!

The more I read and get to know you all, the more amazed I am. As sick as you all are, there is a little band of you sclero girls, that no matter who posts you all jump in with encouragement,support and advice. Yet you're all soooo sick yourselves.

I notice, Amanda, that you're one of those little band of sclero angels, giving all you got even as sick as you are, you STILL give to others. It seems that sclero has knocked everyone around in some way or another ,but that little band of sick angels who are fighting their own war STILL post daily to help other.

In this 21st century where a lot of life is about 'every man for himself', it is just sooooo pleasant to see old-fashioned unconditional compassion,empathy and kindness from one person to another; but what raises my honour to you girls even more, is the fact that you're all soooo sick yourself, but you keep giving , " I tips me hat to ya all".

Take care Amanda and all the other band of sclero angels;Take care and all stay as well as ya can.

Cheers "G"
PS I'm gunna give you girls a congratulatory sclero dance in honour of all you do :emoticons-line-dance: lol lol