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Hi, I am new and new to this disease as well.


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#41 jad12

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Posted 15 May 2012 - 11:23 PM

Thank you everyone. I was feeling quite panicked for a while there right after the diagnosis was confirmed. My boss gave me today off to go with Hubby to HIS appointment (and he had good news) and we stayed in Auckland for the night and ate a huge breakfast where I scarfed down bacon, coffee, orange juice, pancakes, eggs and toast and greek yoghurt with berry compote (hah!). My boss has been very supportive.

As a result of the trip and the time to reflect I feel much better.

I called the Hospital to see if they could schedule both tests (lung and echo cardiogram) together but they couldn't because the lung equipment has no queue and the heart one does but they made the effort so check so I was happy. I didn't want to be off work if I don't have to be but fair enough- I get that one in a couple weeks. The first thing the schedulers asked me was for my NIH number which I had right on my phone thanks to the excellent tip! :emoticons-clap:

I have paper copies of ALL my tests- I'm going to organise a binder to keep them in. I'm also recording anything new that happens. I also emailed them all to my general practitioner so he has them before my appointment on Monday when I see him to bring him up to speed. I'll be setting up a schedule for regular BP checks with him then.

Awesome information and tips from you all- especially that frequent flier doctor card. :P

My internist also gave me a time frame for the rheumatologist- a month or two unfortunately but oh well.

I'm also keeping notes on my BP though my general practitioner is as well.

Thanks for the tips everybody! That was very helpful. And oh yeah, got some decaff. tea at the shop today, it's not too bad.

#42 Amanda Thorpe

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Posted 17 May 2012 - 02:05 PM

Hello Jad12

You're turning into an excellent self advocate! I am glad your boss is on board and hope the tests show nothing and you can keep working and living the life that you are.

Take care.
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#43 jad12

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Posted 17 May 2012 - 10:01 PM

Well my lung test showed normal volumes in and out but low gas exchange. Doh. I have a copy of the test and I'm going to look the numbers up. So the technician is recommending a chest x ray. On top of that I made the mistake of going to a terrible restaurant for lunch. :(

#44 judyt

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Posted 18 May 2012 - 12:11 AM

Hi Julie,

Why am I smiling?? Because of the lunch??

If you find a site that will help you unravel the mysteries of your lung function numbers and letters!! let me know will you. I found one once and could never get back to it again.

Judyt

#45 Joelf

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Posted 18 May 2012 - 12:26 AM

Hi Judy and Jad12,

Here's a link that may give you the information for which you're asking Understanding your breathing test results.

Jad12, shame about your lunch!! ;) :(

Kind regards,

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#46 jad12

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Posted 18 May 2012 - 01:03 AM

Thanks for the link.

We normally munch out on yum char whenever we're in a city big enough to have it. This city usually doesn't. We did find two yum char places, one of which is due to open tomorrow (yes, tomorrow, grrr) and one probably within the month. This is a pleasant surprise and we're going back in a couple weeks just to eat there. We may as well do that for my echocardiogram, that's about in that time frame.

Anyway, the man gets a little bearish when he's hungry and he had food on his mind, lol.
There was this fantastic looking food coming out of this place, right? I mean yuuuuummmmyyyy looking gourmet pizza, huge golden fries, various meaty looking things... (there was seating on the street so I could see how nice the food looked) And it was packed. Obviously a local favourite. "Let's eat here!" I said. But noooo, hubby wanted to try (are we allowed to post restaurant names on here?) anyway, the place RIGHT NEXT DOOR to it, a chain, because he'd always wondered what it was like. There were three other people in sight in the whole place. As soon as we sat down I said, "This is a mistake!" and boy oh boy was it. I ended up leaving most of mine on the plate. How can you ruin a bacon, lettuce tomato sandwich I ask you? His chicken was no better.

I very rarely eat out, so when I do, I like it to be good. That was literally the worst meal I have been served in about the last ten years. Lucky for them they didn't ask how it was because I intended to gently tell them there was a reason the place next door got all the business. :P The man made up for it with his famous BBQ steak and mashed potatoes for tea at home.

Also for fun I went shopping even though aside from a few more pairs of warm socks I don't really need anything. I went into this one nice place and the lady talked me into trying on some trousers which I did quite like but the funny part was she kept insisting they were The Pants. If they had been a bit looser in the waist I might have even bought The Pants but I like the waist a little loose and I like to wear a belt. The Pants did fit me quite well everywhere else, haha!

Another slightly amusing thing that happened today was the technician at the hospital said, "Have you been diagnosed with scleroderma?" And I thought, "Well, buddy, if I hadn't been, you'd have just given me quite a shock!"

#47 jad12

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Posted 27 May 2012 - 12:27 PM

This stinks. I was hoping the thickening would stop at my elbows but I feel pulling in my upper arms to my arm pit now. My hands are worse too. I'm going for the echocardiogram Thursday.

This disease is working fast.

On the plus side I talked to my general practitioner and he is going to run education seminars for the staff at his practice and he is reading up on the disease. He also gave me his email and is happy for me to ask him questions and said he will help me interpret any test results.

My husband is being very supportive.

I am eating all my favarite foods in case some day I can't but I am finding myself crying quite a lot.

#48 judyt

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Posted 27 May 2012 - 01:53 PM

Oh dear Julie,

I am sorry to hear that you are getting worse fast, this disease really does stink, you are very right. Some of us are luckier than others I guess. Thank goodness your general practitioner is being very helpful too, but I wonder where you will find a good Rheumatologist without travelling to Auckland or Wellington or even OZ!!

Lots of warm comforting :emoticon-hug: hugs and a tissue to dry your tears.
Love from JudyT

#49 Amanda Thorpe

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Posted 27 May 2012 - 01:54 PM

Hello Jad12

It can move like a whippet or a snail, whippet says diffuse, snail says limited, both systemic forms of the disease. I have diffuse and within 6 months I went from being "normal" to being a wheelchair user, unable to work or do much of anything. I spent the first year sat on my couch in my dressing gown with my emotional response ranging from asleep to hysterical with nothing in between. Crying, really? People usually cry when they experience loss and get angry for that matter so watch out for that one as well, comes flying round the corner out to get anyone and everyone.

Of course my disease process is not yours and who knows how you will fare, snowflakes are we for sure, personally I'd rather corn or frosted. Get it?

How marvellous that your general practitioner is working so closely with you and that your husband is on side, what more could you ask for? It's going to make things much easier for you in the long run.

Oh yes, I recommend scoffing everything you want just because you want. I lost my appetite last year (currently back as a side effect of a medication) and have a friend who can't eat anymore and we both bemoan all the time wasted on diets and the like, for what?? Stuff that and stuff your face. That's my recommendation!

Take care.
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#50 Joelf

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Posted 27 May 2012 - 03:30 PM

Hi Jad12,

I am sorry to hear that your health seems to be deteriorating at the moment; it is the most bizarre disease and as Amanda says, it affects everyone very differently.

Your general practitioner sounds as if he's on the ball, which is a mercy and it's wonderful that you have an understanding and supportive husband.

Do let us know how you get on with your Echo on Thursday.

Kind regards,

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#51 jad12

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Posted 28 May 2012 - 12:05 AM

Thanks you guys. I'll let you know how it goes.
I prefer corn flakes.
Yeah, I am eating all my favourites but also trying to keep within my pant size but that went right out the window this morning when Hubby made me a huge..HUGE...plate of bacon and pancakes all drizzled with Canadian maple syrup to cheer me up (on top of the french toast etc he made me on the weekend!). I ate every bite too. He knows my weak spots.

#52 jad12

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Posted 29 May 2012 - 10:59 AM

I'm reading the trials and results from links here. Has anyone tried the antibiotic route? I was bitten by a tick a loooong time ago in Virginia (like about 18 years ago!) Are there any more studies on Minocycline?

How about Cyclophosphamide? I'm trying to get some idea of what may help me?





#53 Joelf

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Posted 29 May 2012 - 11:53 AM

Hi Jad12,

From our Medical page on

Scleroderma Clinical Trials: Completed, Negative Results/Minocycline

Warning: Minocycline (doxicycline) treatment has been proven to be ineffective for the treatment of systemic scleroderma by reliable scientific study.

I've included a link to Minocyline from our medical pages and we also have a previous thread here explaining about it.

Regarding Cyclophosphamide I underwent 6 months treatment on this drug which consisted of IV infusions every four weeks. It's a powerful drug and in my case it was very effective improving my lung diffusion from 48% to 85%. BUT I would emphasise that everybody's reaction and result to the drug is different and just because it worked so well for me unfortunately doesn't mean it may be as effective for everyone. My consultant has told me that I was very lucky to have had such an improvement; a lot of the time the drug results in stablising the lung function, not improving it as it did in my case. There were other factors involved with my lungs as well; I was physically very fit at the time, so noticed very quickly that there was a serious problem and was able to treat the ground glass on my lungs whilst it was still in the inflammation stage. Also my lungs were in pretty good shape to start with (fit, non smoker all my life).

Very nasty to be bitten by a tick; I knew a pony who suffered Lyme's Disease through a tick bite and she did recover but was very ill at the time.

Kind regards,


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#54 jad12

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Posted 29 May 2012 - 09:48 PM

Thanks for the update, I was trying to find definitive proof it's ineffective. I did read about the original study which wasn't anywhere good enough to tell one way or the other.

Like you, I am very fit, my ideal weight too (though I won't be if I keep up all this junk I was eating the last two weeks!), never smoked and have decreased lung diffusion (the scan to see if it's ground glass has been ordered so I'll find out) My lungs are currently 58 percent.

Cyclophosphamide sounds like it may stabilize the lungs. (I'd be happy with stable).

Do you know anything about plasmapheresis as a treatment? Or have any links to anything? Thanks a lot.

#55 jad12

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Posted 29 May 2012 - 09:52 PM

And oh yeah, I got a letter today that said I'd hopefully get to see a rheumatologist in the next six months but if not I'd be referred back to my general practitioner. :angry: It says if my condition worsens I can see my general practitioner who may refer me again for a more urgent assessment. I don't feel very urgent but on the other hand I don't like the wait either. I suppose it may work out well since it gives me time to get all the tests done first including, I hope, the CT scan of my lungs. As I said my echo cardiogram is tomorrow. Fingers crossed for the old ticker! :spoon: I'm not sure what a spoon smiley means but hey!

#56 judyt

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Posted 29 May 2012 - 10:57 PM

Hi Julie,

Spoons are spoonfuls of energy, maybe you don't measure yours in spoonfuls yet but you likely will some day in the future. We say you can estimate how many spoonfuls you feel you can cope with in a day. When I got home from hospital in early March my spoonfuls numbered about 1 or 2. Just getting dressed and eating was about all I could do. Now I am back to a whole lot most days.

You say you don't feel as though you want to see the Rheumatologist urgently, but I think 6 months is too long and I would suggest that you keep seeing your general practitioner for every little thing (remember about your frequent user card). Keep yourself right up there in their faces until you get some action. The other thing is that my general practitioner says that unless I tell her everything she doesn't know what is happening.

The other thing would be to find out who the Rheumatologists are at your hospital and find out if they are any good. The one at North Shore Hospital was as useful as a wet bus ticket and I pay to see somebody else now. My general practitioner was at med school with him and knew him! It is not easy to get to know who is who because of our privacy laws but there are ways. Just keep asking around.

#57 jad12

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Posted 30 May 2012 - 10:43 AM

Thanks Judyt, I've been wondering how to find out. I've googled him with no luck and asked an ER nurse who works there but she didn't know him and I asked Hubby's specialist in Auckland who also didn't know him. I thought I might try to track down his office at the hospital in Tauranga today while I am there (visions of stalkers) but I'm not sure what I would do when I found it.

Any suggestions?

Also I am not sure what good he'd do anyway since I can't see much that looks very promising medication wise anyway though I would still like his opinion on minocin and plasmapheresis since I still have yet to read an actual study that rules it out.

#58 judyt

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Posted 30 May 2012 - 02:07 PM

Hmmm, looks like you have tried all the ways I would use. You don't say whether you have tried your general practitioner. If you did track down his office at the hospital you could try to find out if there is a Nurse Specialist attached to him you could talk to. Otherwise the Rheumatology booking clerk might know. That is what worries me about hospital consultants, if you can't find out who they are and what they know how can you be sure you are going to get good advice.

As for the DMA's (disease modifying agents) your general practitioner should surely have some idea or at least tell you which research is the best to read. Not that I know anything about anything really except how to burn potatoes (again last night!!!!!!!) but if I was in your position I would be wanting somebody to try something to help. Once your organs are damaged it is too late, as I well know.

Don't give up. Something will surely start to be the best choicer.

JudyT

#59 jad12

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Posted 30 May 2012 - 10:12 PM

I ended up asking the people who booked me for the echocardiogram while I was at the hospital and she was quite enthusiastically in his favour, so there we go. I also went down to his office after the echo to drop a copy of all my records off (since I was in the building anyway). :emoticons-clap: I didn't get a glimpse of him because he was off sick for the day, but I DID talk to his scheduler who said I could have an earlier appointment if I were willing to drive there instead of waiting until he came by closer once a month so of course I said I'd be willing to drive back again. My boss will be less than pleased unless it takes place on a holiday but oh well.

I totally forgot to ask the echo tech what she thought of him.

So all up it was a worthwhile trip. I won't know how the echo went until the doctor gets to see it but the technician didn't seem disturbed by anything.

I don't usually cook, the hubby does. At least you can MAKE potatoes, lol.

#60 judyt

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Posted 31 May 2012 - 04:20 AM

Yes Julie you seem to have done quite well. I have certainly found that it helps to talk to the clerical staff who can help to move you up the list. As well, they can make things easier for you if you need it. Keep up the good work.

Judy