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Biomarker for Diffuse Scleroderma skin has been discovered!


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A Very Disappointing Day


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#1 summer

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Posted 05 April 2007 - 05:56 PM

Hi Everyone,

Just wondering whether anyone has treated their Sclero with Natural Therapies?

I have had it with doctors/specialists whatever they want to call themselves and no longer intend to go back to one!!

I had a very dissapointing visit yesterday, this was going to be my third opinion supposedly so I've read the best regarding Scleroderma in my area.

I got to see a Registrar instead of the Consultant. The Consultant couldn't be bothered to at least stick his head in the door and introduce himself!

The Registrar agreed that I had Limited Scleroderma with possible Fibromyalga after examining me and consulting with the Consultant, but absolutely refused to give me any meds. I was told to take panadol for pain. Yes can you believe it panadol. I am on Endep 25mg for depression and was also told to give the Endep time to work, at least 3 months as this helps with pain also.

I told her that I have already been on Endep for the last 6 weeks and yes It has helped with my mood but not with pain.

I then asked whether she could prescribe me with any meds to help treat fatigue.
She said there weren't any meds that I could be given and that Scleroderma does not cause fatigue and that Scleroderma can not be cured.

That's when I lost it and told her that I wasn't stupid and that I had done a lot of research on Scleroderma and wasn't expecting her to cure me but to at least treat some of my symptoms. She said that she had consulted with her boss "the consultant" and he said that they would refer me to the Scleroderma Clinic in 3 months time and wait until that time.

I then asked whether she could find out whether I could at least be put on Plaqueil in the mean time. I was told that Plaquenil was a more delicate form of an a immunosuppresant drug and yes it can help with fatigue but no I could not have it as the fatigue I am experiencing has nothing to do with Scleroderma and they can not cure me. I then said well haven't I got an immune system that is working more than overtime. She went quiet and said give the Endep time to work at least three months and if their isn't any improvement in 3 months time they will change my anti-depressant. By this time I knew I wasn't going to get anywhere with her and asked her to refer me to the Sclero Clinic in 2 weeks time.

She absolutely refused. Apparently her Consultant and the Sclero doctor work hand in hand and the Sclero doctor wouldn't say anything different to her.
That's when I said to her - I'm not getting anywhere with you, you don't know how I feel and how tired I feel I thought my other 2 Rheumatologist were bad but you make them look good, I won't be coming back here again. The only thing she said is I'm sorry you feel that way. Then I left and called my husband, he is upset and very angry and is determined to get through to the Scleroderma doctor at the hospital and demand some answers regarding how they are going to treat me with Scleroderma.

I fully intend not to go back there or anywhere else. I don't have the energy anyway. I am currently trying to look at natural therapies at treating my sclero on my own. I have given up with the doctors here in Melbourne and know that they all close ranks and hide behind closed doors.

Am I taking a risk not seeing a rheumatologist?, maybe, but none of them want to treat my symptoms anyway!, and I never want to feel the way that I did yesterday after my hospital visit.

Thank you all for listening if you can give me some advice on natural therapies I will be greatful.

Celia

#2 Shelley Ensz

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Posted 05 April 2007 - 06:22 PM

Hi Celia,

I'm very sorry to hear what you've been through. Unfortunately there are no "natural" cures for scleroderma, and anyone who tells you so, probably has something to sell you!

It sounds more like you aren't against the treatments, but against going to the doctor at all. This is an extremely serious disease. So unfortunately, you do not have the option of skipping out on all doctor appointments.

Fatigue is often an untreatable symptom. Rest, pacing, and stress management techniques can help. Occasionally some meds help, antidepressants being among the top since depression often accompanies scleroderma. And there is no proven cure for scleroderma, so they might not be doing you all wrong with this approach.

Of course, that doesn't make it feel any better! It's awful to come up against the idea that you feel miserable and things are not likely to improve very much...frustrating, to say the least!

You may want to consider the idea of hanging in there, and perhaps on the next visit you'll get to see a doctor that you can relate to better. In the meantime, all I can say is, many of us have "been there, done that" and probably sworn off all doctors a dozen times or more. Thing is, we can't afford to do that forever, so usually we end up calming down and going back at it, keeping in mind that it is just as frustrating for the doctors, to not be able to hand us a pill that will cure us, right on the spot...and sometimes not even anything much that will improve us.

Many of us end up being put on meds that actually have so many side effects, they make us feel worse! So chin up, a little tiny tad, in that at least they didn't force feed you a pill to make your teeth turn purple and your hair fall out.

Not on this visit, at least. :o
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#3 summer

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Posted 05 April 2007 - 07:06 PM

Hi Shelley,
I think you got the wrong end of the stick.
I wasn't asking the doctors to cure me all I was asking was them to treat my symptoms - I don't think I was asking for a whole lot!. I don't expect a miracle fix all I expect is to feel a bit more normal everyday. I know that there are certain side effects to certain meds, but what am I supposed to do, not go on any at all throughout my life?. If that is what you are suggesting just keep taking anti-depressants and that is it, then I am right to think that seeing a rheumatologist is a waste of time and money.
I feel even more disappointed that don't understand why I am so upset.
I don't feel for the doctors at all if they don't understand Scleroderma then at least they should refer me to someone that does!
It seems to me that the only way I am going to get treated is for me to be at death's door (so to speak).
Celia

#4 americanmike

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Posted 05 April 2007 - 07:19 PM

Hi celia--

I just read a post from Janey about IVIG infusions. She said the infusions help her with her fatigue. Perhaps you could mention that to one of the doctors you saw. And also get the sclero doctors email. Send him an email and calmly describe your frustration and explain that waiting 3 months is too long. Can't they see results in less time like 4 weeks? How to get his email??? check the hospital website, type the hospital and scleroderma doctors name into pubmed.com. Is the hospital part of a university... that's a good way to find an email. Call the hospital switchboard. He has an email... keep trying to find it.

Hang in there. Sorry about all the rubbish you've been dealing with.

Michael In Florida

#5 nan

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Posted 06 April 2007 - 03:22 AM

Celia,
I am so sorry to hear about your latest doctor's visit. Fatigue is a sympton of all autoimmune diseases! I too experience extreme fatigue. I am on plaquenil and when I went off it for a month I realized it was helping with my fatigue. But I must say I am still tired. I can't stand my rheumatologist here in Richmond, but I love my rheumatologist at Johns Hopkins. As much as you hate the doctors I really think you need to still go to them because this is a serious disease. I think you ought to do as Michael suggested and somehow get to the doctor at the scleroderma center. At one point I tried to go all natural remedies. I went to a nutritionist in Maryland. I was on a special diet and tons of vitamins and supplements. I ended up getting very ill. My stomach got really messed up, so I decided that didn't work too well. I do hope you can find some help. I am so sorry because fatigue is the pits. People just don't understand this type of fatigue. Hang in there!
Nan

#6 Shelley Ensz

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Posted 06 April 2007 - 04:15 AM

Hi Celia,

I'm very sorry, I didn't mean to be non-understanding or non-caring of your plight! I just wanted you to know that this is often a very frustrating disease for patients and doctors alike. And sometimes not all of the symptoms can be treated, or treated sufficiently, at various stages of the illness. I just didn't want you to give up hope completely, for not having seen the right doctor or having had a very bad encounter with one -- the expert you are trying to see might be the key for you!

Unfortunately, plaquenil isn't a sure-fire thing, it only works in some people and even at that, it takes a few months for it to kick in, usually. IVIG isn't always in the ballpark for everyone, since the cost ranges from $8,000 to about $25,000 per dose, and another dose is generally needed about every six weeks. And there are only certain illnesses it is approved for, which vary a lot by company....and by insurance coverage. Even if it is covered, for many people who are on co-pays, the co-pays alone would be astounding.

That's not to say there may not be some treatment options for you. It's just to say that it is quite a predicament for both you and your doctors. Nearly all of us have been quite frustrated and upset with the whole process from time to time!

So all I really want to say is that I'm sorry for the experience you had, and I really hope things get better for you -- somehow, or another.
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#7 kathygirl

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Posted 06 April 2007 - 04:29 AM

Hi ced,
March of 2006 I was diagnoised with scleroderma polymyosistis,inflammatory arthritis,raynauds,and anemeia.I started on methotrexate,actonel,panteloc,prednisone,vitamin d,calcium,and iron.The drugs seemed to be helping alot especially the prednisone no more pain! By September 06 my arms started to itch and my hands were getting much tighter hard to move.My strength was decreasing as well.I carried on with the same meds until January 07 when I stopped the methotrexate.In December of 06 I started to see a naturalpath doctor.She put me on alot of supplements and I changed my whole way of eating.No more sugars white bread or potatoes really any of the foods that cause inflammation.I was eating foods very high in nutrition. Guess what my enery was coming back. Not like prescleroderma but enough to make life worth living again.This is now April 07 and I can hardly walk to the bathroom.I have alot of zapping pain in my arms. Life at times is very miserable.
What have I learned? The methotrexate was working more than the doctor and I thought.So I am starting that again.Also starting immunoglobulins o monday. The diet of good healthy foods is very important to help our bodies make energy.
Finding the right natropathic doctor can be difficult and can be very expensive but I think helpful in addition to our regular doctors and medications.
The odd time I have went off my diet and I can tell you within hours I am in alot of pain my arms will become itchy and zapping with pain.
This has been my experience so far. Some days are better than others.Some visits with the doctor are better than others. All we can do is keep putting one foot in front of the other. Kathy

#8 Gi Gi

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Posted 06 April 2007 - 04:38 AM

Hi!

Things sound very rough for you right now. I'm so sorry. I do see a naturopathic doctor in addition to my regular doctors. I think everyone is a bit different so I don't think it would do you much good for me to rattle off everything she has done for me, but I have to tell you she's been a lifesaver! She has helped me soooooo much. My advice to you if you think you want to try this additional help is too book an appointment with a naturopath and let them decide what your body needs. Everyone is different.
Your Friend,

Gi Gi

#9 ErinF

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Posted 06 April 2007 - 08:09 AM

It's stories like these that really scares me. My general practitioner thinks that we're really, really lucky and caught the scleroderma early--early enough to make a bit of a difference in how the disease progresses....but only if I can get hooked up with a rheumatologist who wants to be aggressive. That's why it's so important, I think, to see a sclero expert. My general practitioner wanted to start me on Plaquenil right away but decided to hold off so we could hear what the rheumatologist said. There's still the possibility that I don't even have sclero--my symptoms are so vague they sound like every other connective tissue disease and the Scl-70 isn't a guarantee of scleroderma--it is present sometimes in lupus and the myositis categories. But I still hope that I get someone who doesn't want to "wait and see" what happens, because what if that means that by the time this disease starts to show itself it's too late? That's what's so scary and frustrating about this whole thing. On the one hand, I totally understand not wanting to put someone on meds until you know for sure what's going on, but on the other hand, with these autoimmune things it seems like the crises happen quickly, sometimes in a matter of days. I guess I'd rather err on the side of aggressiveness.

ErinF

#10 janey

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Posted 07 April 2007 - 06:07 AM

Celia,
Your frustration is certainly understandable! I think that so many of us can relate to the same frustration in finding a doctor that will actually listen to us and who knows enough about scleroderma to be willing to do sometime for us. After reading your story I also realized how lucky I am that my insurance company decided to move away from the referral system. I can go to anyone I want, anytime without a referral as long as that doctor is in the network. This is a system ALL insurance companies should go to.

As you've already read, fatigue seems to be the hardest symptom to treat. What causes it other than "the disease" is so hard to pinpoint, so how do you treat it? Mike mentioned that my IVIg infusions help with my fatigue and yes that is very true, but that's not the reason for getting the treatments. I also have polymyositis (PM) and since two previous treatments failed to effectively treat the PM, we went to IVIg and it's worked wonders for the PM. The relief of fatigue is an added benefit. As Shelley mentioned, this treatment is VERY expensive and some companies won't approve it. Mine requires lots of objective data for approval.

Recently I went off my immunosuppressants for two months. I had a severe physical trauma back in January and was hoping that with everything that went on during that time that my system had been jerked back into shape and possibly had even reset itself. I know - wishful thinking! So I started being very serious with my diet, taking supplements that were suppose to help and trying to take the natural therapy route. Unfortunately, by month two - I started getting the itching that precedes skin hardening, fatigue increased, weakness increased and I notice that food was getting harder to swallow. Whoops! Time to go back on the drugs! I've been on Cellcept for 2 weeks and haven't noticed an improvement, but nothing has gotten worse either.

I guess my point is that we all wish that there was a natural way to deal with this disease and maybe there is, but currently nothing has been proven to work and you need to ask yourself - is it worth it to not get treatment? Dealing with doctors and the whole system can be very frustrating, but once you find the right doctor - it's all worth it. It took me a while and a few "never to return" moments myself, but hanging in there has been worth it. I feel better physically for it.

So hang in there Darlin'. We're here for you.

Big Hugs,
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#11 bookworm

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Posted 07 April 2007 - 09:36 AM

Celia,

Stories like yours make me want to scream!! If they agree that you have limited scleroderma with possible fibromyalgia, then why won't they treat it? I don't understand what they're waiting for.

Also, I have never heard of an antidepressant taking three months to kick in! I've heard of things that take a couple of weeks. I don't believe an antidepressant is going to be of all that much help for pain either!

I would absolutely be looking for another doctor. Please don't give up on the medical profession because some of the doctors are just wonderful. When I read about someone being treated the way you were treated, it just makes me sick. Why on earth should you wait for three months for pain relief? Pain is being treated as a serious illness in its own right these days -- by some doctors! I hope you will look for them! I hope you will not delay in doing so because there are some things that need treatment right away before irreversible damage is done.

Natural treatments are fine, and if you can find one that works, I'd love to try it! So far, I don't think anything has been found that really works. That's not to say that some of the natural things don't help. I am on a very healthy and nutritious diet and I take a food supplement and several vitamins, but I am also on a low-dose of a steroid and Celebrex for joint pain. I'm on Cialis for my Raynauds and it's a real miracle to me! I'm not sure what Panadol is but I'm thinking it's the same as Tylenol, which can be really dangerous for the liver if taken every day. How ridiculous to tell you to use something as ineffective as that when it's as dangerous as other things that might actually work.

I'll stop ranting now! However, I do hope you keep looking for a good specialist because I believe you can feel a whole lot better and begin to be able to function better. It just takes patience and perseverance, which is very hard to have when you're sick and feeling terrible. I really feel for you and wish I could help. Just don't give up!!!

Mary in Texas

#12 nan

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Posted 07 April 2007 - 12:03 PM

Celia,
Do you have anything to help you sleep at night? I too have fibromyalgia with CREST/limited scleroderma. I take 30 mg of amitriptyline at night for sleep. It helps. I still don't get a great night's sleep,but it is better than none at all. OF course it can slow down your digestive system which isn't good for me because I am slow as molasses anyway. I think that is what so hard about this disease too. So many things can be messed up and the meds to help one thing can mess up another. Please take care of yourself. My thoughts are with you.
Nan

#13 summer

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Posted 08 April 2007 - 12:57 AM

Thank you all so much for your kind, caring and encouraging advice I have calmed down now and see that yes I do need to still see a rheumatologist who can manage my scleroderma. I shall go back to the hospital where there is a fairly good rheumatologist there as well as a Sclero doctor, whether they will treat my symptoms I'm not sure, but they did mention last time that they would closely monitor me from now on. I have an appt in one weeks time and I shall let you all know how I get on.

Nan, I do take an anti-depressant called Endep which is also called amitryptiline I was on 25mg but have decided to increase the dosage to 50mg per night, and yes it has helped me sleep at night and has made me not dwell on the situation.

Erin, I hope you have a better visit with your sclero expert than I did. I shall be thinking of you and I hope that it is a worthwhile visit for you.

Andyko, I think things have changed since you last saw Dr Clemmens at ST Vincent's no longer do you visit with the Consultant instead you get the Resident or Registrar. If I had private insurance then I would see Dr clemmens privately but unfortunately I don't and have to rely on the public system. Thanks for thinking of me.

Kind regards to all
Celia :)