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Dermatologist's Appointment........and it's official!


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#1 amberjolie

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Posted 02 January 2012 - 08:59 PM

Saw a dermatologist today for a skin biopsy. He took one look at my forearms and hands and said that he has no doubt that it's scleroderma. That he wishes it wasn't so, but he was sure. He did the biopsy still, though, I think more to put my rheumatologist's mind at rest so if it came back positive for scleroderma (which the dermatologist has no doubt it will), then the rheumatologist will be able to say for sure that it is.

He said I should probably be on something (since I tried plaquenil but it didn't seem to help, and things like Celebrex and Meloxicam also didn't help). He thought Methotrexate (but was leaving it to the rheumatologist to do any prescribing). I'm so nervous about getting onto anything so strong, though. I'm so worried about the side effects. He said that once skin hardens, it doesn't soften, I guess intimating that if I don't go on something, it'll just continue to harden more.

Sigh. Good to have a diagnosis (I saw him write scleroderma in the "diagnosis" section of his patient file, so I feel confident in saying it's a diagnosis), but I just wish it wouldn't get any worse, or that any treatments wouldn't add their own side effects to things.

Are there any natural supplements that can help at all? (Just trying to see if there are any options that wouldn't have the same side effects).

#2 Amanda Thorpe

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Posted 03 January 2012 - 04:51 AM

Congratulations Amberjolie on finally achieving diagnosis of scleroderma! :emoticons-clap: :emoticons-clap:

The biopsy can diagnose and categorise the type of scleroderma so you should know exactly what type of scleroderma you have as well.

Here's some good news for you, the skin can soften, mine certainly had in many places, whether that's as a result of medication of just the disease waxing and waning I have no idea. It's something of the million dollar question, I developed myocardial fibrosis and gastrointestinal involvement but my skin softened in places so who knows what it was, however, medication gives us the best chance against the disease, well that's my layperson's opinion anyways and what do I know?

Yes all medication has side effects but they can also have tremendous benefits as well. I have been on both methotrexate and mycophenolate, I started on mycophenolate but went onto methotrexate after side effects of migraines but that was after many months. I was then on methotrexate for many months and again went back to mycophenolate because of the side effect of nausea. Unfortunately I had to come off mycophenolate again and am starting back now on the lowest dose.

Although the side effects were unpleasant and in the case of the migraines, something I was not prepared to accommodate, I think that the side effects were quite mild from a "are they gonna kill me" point of view.

Make sure you let us know the biopsy results asap and again congratulations! Only members of the forums will understand me congratulating you but you have to be properly welcomed and officially into the weird 'n' wacky world of scleroderma!

Take care.

PS I forgot to say that even natural supplements can be problematic, some can even interfere with medications.
Amanda Thorpe
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#3 Joelf

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Posted 03 January 2012 - 12:25 PM

Hi Amberjolie,

I'm joining Amanda in congratulating you on finally getting a diagnosis! :emoticon-congratulations: At least now you have something to focus on, rather than a lot of ifs, buts, and maybes! I was very relieved when I was diagnosed with Scleroderma, mainly because I'd been very foolish and googled "Idiopathic Pulmonary Fibrosis" thereby convincing myself I was not long for this world and scaring myself witless!! :rolleyes: Thankfully, I'm still here to tell the tale!

I have very little skin involvement (merely the tips of my fingers) so can't advise you about that from my own experience and have never been prescribed Methotrexate although I do take Azathioprine, another immune suppressant. To start with, I was horrified at the prospect of bombarding my body with strong drugs like that and also Cyclophosphamide which I had intravenously for 6 months, but I told myself that my condition would certainly worsen without them and in the case of my lungs would possibly shorten my life which I found tended to concentrate the mind wonderfully!! ;)

I've included a link to our Scleroderma and Alternative Therapies page to give you some information but as Amanda has advised, supplements can present other problems so should be approached with caution.

Best wishes,

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#4 miocean

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Posted 03 January 2012 - 01:55 PM

>He said that once skin hardens, it doesn't soften, I guess intimating that if I don't go on something, it'll just continue to harden more.

My skin score went from a 45 to a 0 on a scale of 0-50 over a period of 7 years so not true! Unfortunately, many doctors do not understand this complicated disease. When I was going through the process of diagnosis (a short 6 months for me because then I went into crisis mode) I saw several doctors who thought it was scleroderma, but would return to my general practitioner and he would say he thought it wasn't. Of course, I wanted to believe him! I am probably the only case of scleroderma he has ever seen even though he is a good doctor.

I didn't do well on methotrexate as it is attributed to setting off my crises and I am now listed as "allergic" to it. My body must be very sensitive to those stronger medications because I also had a toxic reaction to cyclophosphamide. I am currently on myfortic for anti-rejection of a kidney transplant but it also used to treat Interstial Lung Disease which I also have and so far the only reaction I have had to it is major diarrhea.

I think we all are a little relieved after getting a diagnosis because we start to feel like we are going crazy when we know something is wrong and can't get and answer.

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#5 amberjolie

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Posted 04 January 2012 - 05:22 PM

Thank you for the welcome! :)

I didn't realize that they could categorize the type of scleroderma from the biopsy. I thought I had read somewhere they couldn't distinguish, but if they can, that would be great. Narrow it down even further.

I think they are pretty sure it's CREST, however, because it didn't come on super quick, like the diffuse can. It sure is systemic, though, that's for sure! My hands are feeling extra sore today, but the odd thing is my ankles are feeling somewhat better.

I think the stiffness and pain decided to move. :)

#6 amberjolie

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Posted 04 January 2012 - 05:36 PM

As an addition, though, I have a patch of shiny itchy skin on my chest that seems to be expanding. I read that CREST doesn't usually affect the chest, and that joint pain is more common with diffuse scleroderma.

So I'll ask the experts: anyone here with CREST that has skin involvement on their chest and/or sore joints? (I would think the sore joints would be common in almost any autoimmune condition).

#7 judyt

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Posted 04 January 2012 - 08:58 PM

Hi Amberjolie,
I have CREST, it came on slowly from 1966 when I was 22 and I was diagnosed in 2002 after an emergency admission to hospital.

I know it started in 1966 because that is when the Raynauds started, and when I was told in 2002 it was probably CREST I started reading on the net and as far as I could see I had a classic onset.

The article I read then on a Swedish site talked about raynauds in the 2nd decade of life - check - esophageal dismotility next decade - check - and so on until at about the 5th decade when it could actually start to retreat.

That is exactly what has happened. I am now 67 and the raynauds has been gone for about 18months but, of course I am left with the damage to my digestive tract, as the stiffness has softened I am left with a floppy esophagus and other problems which will not go away.

I have never had joint pain or stiffness or skin involvement, except for a patch the size of my thumbnail on my leg which is china white coloured, hard,shiny and surrounded by a slightly pinkish/purple rim. I am sure it is not a scar from anything because it suddenly appeared and is still there, the same size and shape.

Everybody is different of course, but it would seem anecdotally, that a slow onset is slightly easier to cope with.

Look forward to hearing your results of your biopsy.

Warm Hugs

JudyT

#8 Shelley Ensz

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Posted 05 January 2012 - 01:46 PM

Hi Amberjolie,

Congratulations (as well as sympathy) on your diagnosis, at long last.

I hope your next rheumatologist meeting goes better, too. For the very best treatment advice, including any natural things you can do to improve your health, you really need to consult a listed scleroderma expert. Most rheumatologists only see one case of scleroderma in their entire career, and it it typically only covered for a few minutes in medical school, so the danger is that they might treat you like all their other rheumatic patients. And that is a great danger, as treatments that are helpful for other rheumatic conditions (such as prednisone/steroids are not necessarily good for scleroderma and can even be adverse.
:emoticons-group-hug:
Warm Hugs,

Shelley Ensz
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#9 Sweet

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Posted 05 January 2012 - 03:39 PM

Hi! I'm glad you finally got a diagnosis, but don't we all wish we didn't have any of this! But, at least now you have a direction to go.
Warm and gentle hugs,

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#10 lazychain

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Posted 06 January 2012 - 04:24 PM

Why is it that there is such a lot of confusion with scleroderma. I was unfortunate enough to lose my general practitioner with an issue that couldn't be resolved. I could still 'weep' about it because he was the best general practitioner that our town could offer, and unafraid to say what he thought to me, which I was pleased about.

When the scleroderma came along for me, he was surprised. I knew that he had missed it but I was unable to get my head round it at the time. Reading the letters from other scleroderma people I am wondering why I wasn't given skin tests at the hospital where I went to see a dermatologist. The skin on my nose was definitely visible but I was virtually told it wasn't there. It makes me feel very disappointed with the system, there are too many doctors not giving proper attention to patients notes. I am getting to the point where I feel very tired of the whole thing but there is still a little bit of me which is trying to 'watch out' for myself.

Sorry to hear of your problems, it was the dermatology thing that got my attention.

Love Lazychain

#11 judyt

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Posted 06 January 2012 - 06:15 PM

Why is there such a lot of confusion - how long is a piece of string?

We could strain our brains all day trying to resolve that one, and still get nowhere. It depends on so many different things, not only because everybody has a different story to tell.

If you read back on this thread you will see my story of waiting 37 years for an answer. Now that I have a diagnosis and have joined this site it is so obvious to me what has been going on all that time but nobody could put a name to it. At one time when I showed my Telangectasia to a general practitioner he went into a panic about them but then wouldn't tell me why - I should have questioned him further but didn't. I was only 35ish then with 2 babies who took up my head space, and I wasn't as stroppy then as I am now!!!.

You went to a dermatologist and so did others and I did too but that came to nothing. It wasn't until I was sent to a Vascular clinic at the hospital for help with recurring ulcers that everything fell into place. Even then, the young doctor I was talking to started to back track, I think now because he didn't want to give me such bad news. After that it was only a matter of days before I was in Emergency with a Haemetemesis (vomiting blood) and ANA tests were done when I mentioned that a doctor had recently suggested CREST.

From my point of view it was GOOD news - at last I had an answer - I keep thinking of Spike Milligan's Epitaph "I told you I was ill".

Your story, and mine re-inforce to me the absolute necessity of getting to a Scleroderma Expert. In 1966 when things first started for me I doubt that anybody would have known what was going on. I was living in London at the time and I do remember going to a doctor but the specialists who are available now at the London Clinics were not at the time I am sure. Now, back in New Zealand there are no specialists at all, the nearest centre of excellence is in Australia but my disease seems to be on the wane now so I just have to deal with the aftermath and practitioners seem to know (mostly) what they are talking about. Anyway, I am quite capable now of disbelieving any dodgy advice and looking further afield.

All I can say to you is let all the angst go! You can't change anything - it is tiring and frustrating and disappointing to think about what might have been. Remember that nobody will look after you better than yourself. Develop a thick skin!!!, not literally, and be brave enough to ignore derogatory comments and looks from those who think they know better. Nobody knows better than you how you feel.

Warm hugs to you, keep your chin up and continue the fight - it is worth it in the end.

JudyT

#12 Amanda Thorpe

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Posted 08 January 2012 - 02:27 PM

Hello Lazychain

Girl you can't flag out now, you're just beginning! There are so many reasons why it takes so long to get scleroderma diagnosed, it's rare, it can miminc other connective tissue diseases in the early stages, the early symptoms can be vague like fatigue or cold hands, some doctor shy away from diagnosing scleroderma as there's no cure or specific treatment for it, scleroderma may be suspected but the person may not meet the strict diagnostic criteria (blood markers may be absent), a diagnosis may be given and then taken away to name but a few reasons.

Unless you're like me and present with massive skin involvement you could be in for a long haul, see our section on difficult diagnosis for more information and you'll see why diagnosis of scleroderma, as awful as it is, is better than being in diagnostic no man's land!

Take care and keep posting.
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#13 amberjolie

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Posted 08 January 2012 - 03:28 PM

Called the dermatologist because I forgot to ask how long it takes to get the results of the skin biopsy. She said it takes four to six weeks! I thought she'd maybe say two at most!

I get so impatient about test results, so the next few weeks are going to bug me! :)

#14 amberjolie

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Posted 11 January 2012 - 09:17 PM

The skin biopsy came back yesterday and was "compatible with scleroderma". So it's official.

I asked about whether the test could show what type it was, but apparently it didn't.

So I will probably get a call from the rheumatologist soon about the next step. Still waiting for my electromyography (EMG) at the end of the month and an appointment with a GI specialist, which I don't yet have. I'm hoping the rheumatologist will be able to suggest some medication or something. I've already tried plaquenil, to no effect.

#15 Joelf

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Posted 12 January 2012 - 07:08 AM

Hi Amberjolie,

Ah, you managed to get your results more quickly than you thought you would; that's excellent! :emoticons-yes:

I hope that all your appointments will synchronise easily and that your rheumatologist will then be in a better postion to advise you about your medication.

Kind regards,

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#16 debonair susie

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Posted 12 January 2012 - 09:31 AM

Hi amberjolie,

You Are fortunate to have received a Scleroderma diagnosis so quickly, as has been echoed by many of us, most especially Judyt, who had YEARS of waiting. From onset of my symptoms, it took 4 years for my diagnosis and I suspect it was due to my primary's awareness that there was something (very serious) going on and had the foresight to send me to someone (an excellent gastro, as it turned out), who diagnosed me!
I consider myself fortunate also, due to the fact that Scleroderma is considered an orphan disease; as has already been mentioned, none of us are exactly alike and we all persent symptoms in various ways, thereby adding to the complexity of determining a definitive diagnosis. Add to that (oftentimes), overlapping diseases, which can confuse everyone!

Any time "something new", in the form of a symptoms/symptoms, it's difficult for ME to discern whether or not it's a cold, the flu, or a "change" coming on from the Scleroderma (REST of CREST I have). At any rate, due to the fact that my initial diagnosis came about mid-1995, I've come to realize that knowledge is power and as a result of joining the ISN (several years ago), I'm able to keep my head about me (much of the time anyway)!

Please keep us posted on how you are doing?
Special Hugs,

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#17 mando621

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Posted 20 January 2012 - 10:58 AM

Hi,
I was wondering what they are testing for when skin biopsy is done. I had a skin biopsy a few years ago, and it seems like they didn't really test for anything specific. All I got from the test, was that my skin showed slight thickening.

I don't think they tested the cellular level to see if anything was off. I could never get any more details from the testing, and nobody ever gave me any information other than the slight thickening. Even with my lack of knowledge, I thought they should have had more detail in the results.

Mando.

#18 amberjolie

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Posted 20 January 2012 - 09:25 PM

I'm not sure what they check with the skin biopsy. The receptionist from the dermatologist's office read it out to me, but I can't remember anything of it to save my life! There did seem to be a lot of medical-type words, so I think it was more than just the thickening they were looking at (unless all those big words just meant "thickening" :) ).

I'll be following up with my rheumatologst towards the end of February. I think he wants to get the results from the EMG scheduled at the end of January before he sees me.

#19 judyt

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Posted 21 January 2012 - 10:37 PM

Always, always, always ask to be included in the list of people who receive a copy of the report on any tests you have done. Tie a knot in your finger, anything at all, to help you remember to tell whoever is doing the test, that this is what you want.

That way you don't end up in the position described above, where you don't know what it means, and you can't even find out because you are not familiar with the words used. Some of those long words you will find have very, very simple meanings.

Warm hugs and warm wishes that your winter will not be too hard.

JudyT