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Confused about treatments

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#1 enjoytheride


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Posted 22 December 2009 - 07:25 PM

I try to read some every day in the News section and try to keep up with the posts.
One thing I have found very confusing is whether there are treatments for the various symptoms of scleroderma or not.

I read frequently that there is no cure. Took me awhile to come to grips with that as my body has always recovered from whatever before this. But til recently, it's been more irritating than scary.

Then I read posts about some medication causing the progress of the condition to slow or plateau. And I frequently read about things that show promise in the news section for relieving some symptom or another. I read frequently that catching it early is the key. But catching what?

My new doctor said there is nothing to be done- that nothing can effect the progress. The rheumatologist I was seeing left but she had said to just watch it and let her know if there are changes. I have an appointment in January with the new doctor coming to replace her.

I guess I'm afraid of missing the opportunity to help myself by just letting things take their own course. The latest problem that has shown up is that my digestion has almost stopped. I'm up to my eyeballs in fiber drinks and other things to make things keep going. Is it related to the CREST or something else? How do I know> :blink:

I know that I should see a specialist but a referral is needed by my doctor and he said it's of no use. I'm frankly reluctant to leave the area so keep taking no real action unless something goes wrong, then I'm too sick to go. And it would be a project to get to the closest place- about an 8 hour drive.

Am I wrong not to have a hissy fit at the doctor and try to get that referral even if he resists? Or is he basically right? Or is there some specific sign that it is now time to get something done? I don't want to make a stink only to have the specialist (if I get there) roll his eyes and tell me just what my doctor has said.

#2 Sheryl


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Posted 23 December 2009 - 02:26 AM

Enjoytheride, you can expect to pay out of pocket for a consultation to a new doctor. Sounds like you should go to a Gastroenterologist. I have gone to doctors out of my plan and without my primary doctors approval. Once you go and if the new doctor feels that he needs to do further testing he can then get the approvals you require. Have you had endoscopies and colonoscopies done. That is the first step to solving bowel or esophageal issues. Your primary doctor could do these tests first and if he sees anything of note then a referral is automatic. I guess it depends on how bad you are feeling on what you decide to do. There is nothing wrong with a person going with doctors outside their plans. The primary doctor that I have now is glad that I took things into my own hands with my health and made things happen. You need to do what you think is best for your health using what ever medical doctors that see the need for their care over you. Good Luck.
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#3 ladyhawke


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Posted 23 December 2009 - 03:59 AM

It is quite the quandary, I know. I feel the same way. I've been through a pretty rough 3 years and am now on the "plateau". I keep telling myself I could be a lot worse, and then this little voice says "you could be a lot better too".....sigh .I wouldn't have a hissy fit at the doctor, but I would "firmly" say that you "want" a referral. It's easy for them to sit there and say there's no need. I went through 3 doctors that way 3 years ago. Looking back now, I should have boldly told them to get me to someone who "knew". I'm in Canada, as far as I know we can't go "out of the plan". If we don't get a referral, we don't move on. I was lucky and on one of my trips to emergency there was a doctor there who's mother had polymyositis and he recognized the signs and did the proper blood work. Then they found the scleroderma. I don't know where I'd be today, if not for him. Good luck - Lisa
Life is NOT meant to be a struggle. Life is meant to be joyously abundant.

#4 Sweet


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Posted 23 December 2009 - 06:58 AM

Hi Enjoytheride,

I completely disagree with your primary care provider. There are many treatments for the symptoms you are experiencing. You need to see a Rheumatologist as soon as possible. I have CREST. The first thing my Rhuematologist put me on was Plaquenil. It helps with fatigue, pain and has the ability to slow down the progression of the disease or completely halt it at the stage it is now. There are treatments for your digestive issues as well. It would be worth it to pay out of pocket to see someone. Be your own advocated, listen to you body and do what you think is right for you.

Good luck, and keep us posted.
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#5 Amanda Thorpe

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Posted 23 December 2009 - 07:48 AM

Hello Enjoytheride

It's true that there is no cure for scleroderma, whatever form you have, but the symptoms can and should be treated and it's the treatment of these symptoms that impacts on our quality of life. If a doctor is telling you there is nothing to be done then you need to see another doctor!

Limited scleroderma (CREST) can cause bowel dysfunction but the best person to determine whether it's a result of the scleroderma is, in my opinion, a scleroderma expert. They are best placed to add up the symptoms and come to the right conclusion and treatment plan. Even if they said nothing much needed to be done yet you would at least have the reassurance of knowing, for sure, that nothing needed to be done yet. At the moment you're having doubts about what you are told.

If you follow to conclusion the statement that nothing can be done to effect the process of scleroderma then we're all completely at the mercy of the disease, being ravaged by one symptom after the other until we drop dead. Needless to say that's not the case for the majority of us! Why would we be taking immunosuppressants and many other medications and treatments if nothing could be done to effect the process of scleroderma? It might be worthwhile asking the doctor who said it.

I don't know what the referral process involves for you in the US or how you go about it but you have to be your own advocate. You can assert yourself without having a hissy fit (granted it's not as much fun) because at the end of the day you are the one living with the condition and you are the one person you can reply on to fight your corner.

I hope this helps and take care.
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#6 Sharon T

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Posted 23 December 2009 - 10:38 AM

Hi, Enjoythride (great moniker, by the way...)

I had minor bowel issues for about a year before I was diagnosed with Limited (CREST) Scleroderma. I didn't pay much attention until I had a bout of continuous diarrhea lasting nearly a month that near put me in the hospital. I finally went to a gastroenterologist who did a colonoscopy and diagnosed a form of colitis as the culprit. He put me on 50 mg. of prednisone (a steroid that fights inflamation) after trying a few other things that did no good whatsoever, and the prednisone did the trick. A bit later my lung issues kicked in and I was finally diagnosed with Sclero. I'm now on low dosages of imuran (an immuno suppressant) and prednisone, and that keeps the bowels somewhat under control.

I agree with the other posters that there are DEFINITELY treatments available for the various symptoms of sclero, and you should insist (politely of course :P ) that you need to see someone who can address those symptoms, as in my experience ignoring them is not a good thing to do! Hang in there, and push for the right to see someone who can help you!
Sharon T.

#7 Peggy


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Posted 23 December 2009 - 12:22 PM

This disease is every changing for me. Before I was diagnosed some 10 years ago I had terrible terrible diarrhea that the doctors diagnosed as me having celiac disease. Everything I ate went right through me. Well then other symptoms started up in 2006 and after a year of going from doctor to doctor before finally getting a diagnosis I then find out I don't even have celiac disease but am gluten intolerant. Now I have 5 other autoimmune diseases in addition to Systemic Scleroderma. Now all of sudden instead of having diarrhea I have to take over the counter medications to help me go. It's the exact opposite to what it was. I don't know if it's the disease or the medications.

I have tried a number of the medications for sclero, cyclophosphamide, IVIG, Prednisone, Lyrica and Neurotin for the neuorpathy. Due to having reactions to the cyclophosphamide and Prednisone I had to quit them. The other medications weren't doing anything.

However I am on Cellcept and because of that drug my skin has softened and hopefully it's helping with my lung involvement. My PFT's are worse each time but I would hate to think how much worse they would be if I wasn't on this drug.

So what I'm trying to get at is keep working with your doctor. Make sure your rheumatologist is one that REALLY knows Scleroderma. Because there are so many issues with this disease related to your heart, kidneys, esophagus, lungs, you have to really keep on top of it. I am continually having periodic tests for each of these different organs to monitor what's happening.

I have terrible pain in my legs and arms and terrible fatigue. Unfortunately there doesn't seem to be a drug to help these other than pain medications for the pain. The fatigue is a daily ritual. My mornings are good but by 1:00pm it's like I hit a brick wall and my body is done for and I am so tired it's ridiculous. Thank heavens I was able to get disability as there is no way I could hold down a job.

I hope you are able to work with doctors who really know their stuff about this disease. If they don't then it's a waste of your time and your money to see them. I really mean that. I have gone to the emergency room and it's amazing to come across a doctor who came in the room and looked at me and said "you have Scleroderma don't you". He had dealt with the disease and knew from what I was in there for and by I suppose looking at my mouth and face that I had this disease. He knew exactly what was needed at that visit and it made it so much faster and what a relief to my family too. I, like you, live in a rural area so to see my specialists I travel 3 hours one way to see them. It makes it tough so when I make my appointments they really try to group them all in one day. My local doctor is kept apprised of what's going on and he takes care of the pain side of what's going as it's just easier for me to do that. So when my pain is really bad I go into the hospital for IV pain medication to try and reign in the pain.

Good luck and warm hugs,

#8 alice1


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Posted 26 December 2009 - 09:10 AM

Yes...it is so important to get early specialized treatment. My doctor at John Hopkins even called my doctor to tell her how unsual and important it was to have caught my case so early. She was so proud of the phone call but I was in bad shape because it moved so quickly. He immediately put me on Cellcept, that was 6 years ago. I went into remission after about 3 years. He has tried to get me off of it but every time he does it comes back within 3 weeks. I have been very blessed with the lack of progression so far and know it was because of early diagnosis.
Wish you well....alice1