Scared new member
Posted 20 April 2011 - 09:20 AM
My diagnosis was confirmed on Friday. I have limited scleroderma. Not sure where to go from here. I have a script for Prednisolone 5mg and Pariet. My symptoms are mild compared to what I have read. Will the side affects of taking steriods be worse than the symptons? Are there any 'natural remedies'?
I'm 42, I keep fit and my diet is pretty good.
Posted 20 April 2011 - 10:13 AM
Welcome to the Forums! I'm sorry you've been diagnosed with scleroderma but glad you found us.
If you've been reading the posts here in the Forums or the Personal Stories, you'll have realized by now that symptoms vary enormously from person to person. That's one of the things that makes the disease fairly hard to diagnose. The prognosis also varies from person to person. I'm fond of quoting what my rheumatologist told me when I asked about it when he gave me the diagnosis: You'll do as well as you do. It didn't make a lot of sense to me at the time, but over the years it has seemed to mean that having done well for several years, a patient should continue to do well.
Now, about the scrips. We have a number of articles about steroids, both pros and cons. Since you've been prescribed Pariet, I'm guessing you suffer from the dreaded GERD. (Miserable stuff, that.) So here is a link to information about gastroesophageal reflux. It's important that GERD be addressed since there have been many studies linking the aspiration of reflux to lung problems. The acidity of the reflux can also cause erosions in the esophagus and possibly progress into Barrett's Esophagus. You will find more info on all that in the link I've given you. There aren't any natural remedies, but especially with the GERD, there are lifestyle tips like avoiding certain types of food, timing meals long enough in advance of bedtime, sleeping with your head elevated, etc. that can help minimize the reflux.
It's always best to discuss medications with your doctor so you can make an informed decision together about the best treatment. You shouldn't have any ill effects from the Pariet, but steroids are more problematical in scleroderma. While there is no denying they can be helpful and indicated in certain cases and situations, it is known that in some scleroderma patients they can provoke scleroderma renal crisis. There are also some long-term usage side effects to be considered such as the effects of steroids on bones, skin, heart, and lungs.
I hope you'll post often and let us get to know you. We're a friendly bunch here and collectively have an enormous amount of experience.
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Posted 20 April 2011 - 10:32 AM
Welcome to the Sclero Forums. I'm sorry to hear about your diagnosis. I know sometimes it can take a very long time for all the information to sink in. So ask questions whenever you feel like it! Here is a link to our Scleroderma Alternative Therapies, I hope you find it helpful.
Posted 20 April 2011 - 11:57 AM
A warm welcome to these friendly and helpful forums!
I'm sorry to hear you've been diagnosed with Limited Scleroderma. Please don't feel scared by your diagnosis; I know it can seem overwhelming at first but I would like to reassure you that you will still have a good quality of life; I know because I also have Limited Sclero, I take a small amount of Prednisolone like you and I am also quite fit....so we have quite a few things in common! (Sadly I'm not 42 anymore.....I wish!! )
I'm very pleased that you've found our forums and joined our community and you will find that you'll make lots of new friends who totally understand the anxieties that you're having. Do keep posting and let us know how you're faring.
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Posted 20 April 2011 - 01:39 PM
Posted 20 April 2011 - 03:22 PM
Hopefully, your fears will be quelled, once you become "knowledge-empowered", with regard to your diagnoses.
As your own advocate, I'm quite sure you will find a greater comfort level in knowing "your stuff" any time
you have dr appointments.
As Sweet mentioned, please feel free to ask questions; with the "meld of knowledge" that exists within these forums,
you are BOUND to get the answers you are looking for!
Might I also add that there is also a listing of various scheduled chats, where many of us go to chat with others to
exchange concerns about our health issues, as well as enjoy getting to know one another! Also unlisted, are Chats that
I enjoy hosting, which are Tuesday evenings at 5:00 PM and Friday mornings at 8:00 am, both PST (Pacific Standard Time).
Posted 20 April 2011 - 04:46 PM
Over the years I have found Scleroderma is a journey and we all have our personal journey with this condition. I have never tried natural remedies being not sure what to try and I have only taken prescribed medication.
Posted 20 April 2011 - 09:50 PM
I never heard of any remedies but there are lots of things to make you feel as good as you can. There are relations between vitamin D and scleroderma for one and I personally feel that this is one thing to have your doctor investigate.
I too was so scared when I started reading about this condition on the internet, especially after a doctor told me he was so sorry I have this- yikes. But over the 4 or 5 years I have been dealing with it, receiving the appropriate medications have helped and I feel more relaxed about the whole thing. There have even been moments where I have actually been entertained with new and strange symptoms. But I keep that to myself- I think my doctors already feel that I am weird enough.
Just feel free to ask about anything that is bothering you- someone here will have have something like it and can give you their experience.
Posted 20 April 2011 - 10:34 PM
Then I developed Sjogren's, myositis, a bout with lymphoma and pulmonary hypertension.
I've always thought "limited scleroderma" was an inaccurate name for the condition, since most of the bad symptoms can come on, but not as fast. I think "gradual onset" would be more accurate. My father had it for more than thirty years before it was diagnosed during kidney and lung illness.
I'm curious what symptoms you take the steroids for. I take steroids during bad myositis attacks, then go off entirely.
I'm very cautious with steroids. I had a complete hip replacement 6 years ago due to an avascular necrosis of the joint. This was though to have been caused by steroid therapy. It is also believed to have helped cause me osteoporosis (extremely unusual in a middle aged man, and none of the women in my family have osteoporosis.)
Aside from all the other unpleasant possible side effects, your body (adrenal glands) stops making cortisol when you take prednisone for a long enough period making you dependent on the medication.
So, no steroids for me unless there is a very good reason (like an inflammation attack that has me stuck in bed with great pain)! Once an inflammation attack is over, my body is back to using its own cortisol.
Posted 21 April 2011 - 09:23 AM
Thank you for your warm welcome. I have made a promise not to look on the net regarding scleroderma, it's far too scary.
I was asked by Craig what the script for steroids was for. The rheumatologist prescribed it for my swollen hands. He said it is a low dose and for a short term but I'm thinking I can put up with the discomfort. As for the pariet I think I might start taking it.
The rheumatologist has recommended I take fish oil and Vitamin D. I'm struggling to take all those fish oil capsules so I might look at taking that one dose liquid stuff.
Cheers for now and thanks heaps for the welcome. I''m feeling a lot better about it all now.
Posted 21 April 2011 - 04:17 PM
Welcome to the forums! Last year I was diagnosed with myocardial fibrosis and thought I'd go a googling...I'd had scleroderma 3 years by then so knew the risks. Well one bonafide site mentioned cyclophosphamide and failing that transplantation...no surprise there...but one other site said the prognosis for myocardial fibrosis was...wait for it...terminal!! Yep that was it...terminal!!
I recommend you stay here for all things scleroderma, you'll be in good company.
Take care and keep posting.
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