Posted 05 January 2009 - 03:15 PM
Thank you for your responses! I'm freaking out! I go to the doctor on Thursday.
Posted 05 January 2009 - 06:51 PM
I do not recall about reflux the way you described your problem. I don't have any help there but I will add something that I think is important, just in case you have not been given this information
I took hydroxycholroquine for about 3 months and it did help some. I don't think it has anything to do with reflux.
The doctor told me to tell my eye doctor about it and be sure of an annual checkup. I was seeing my eye doctor frequently as he was doing a series of eye surgeries When I told him he said I check my patients every 6 months.
My ophthalmologist says I have weird eyes. Maybe that puts me at a higher risk. They must have done every test they had...there is 1 more. It was a color test. He said he wanted me to see a retina doctor. He took me right in, no apt.and no waiting.
He did not see any damage hydroxycholroquine caused. ( Also I have no diabetic changes. ) He said my retinas are "compromised" whatever that consist of. Do not take any more of that med.
When I next saw the Rheumatologist I told her the retina doctor had told me not to take it she acted like I was insulting her. She said it takes years to show in the eye.
Posted 05 January 2009 - 10:20 PM
This is reflux. Could be a part of disease. This is what my daughter is suffering. We are using OMEPRAZOLE and small frequent feeds, head up positions, I.e. we use 2 pillows under the head, don't lie down immediately after a meal.
BEST OF LUCK
Posted 05 January 2009 - 11:59 PM
I would wait and see what the doctor says when you see him on Thursday. I thought that to have a diagnosis of Scleroderma you had to have more clinical symptoms. I'm sure someone on here will be able to tell you more about that or point you in the right direction.
Try not to worry and do let us know how you get on.
Posted 06 January 2009 - 05:09 AM
Acid reflux can be caused (and worsened) by any number of things, including scleroderma. We have a page on the GI issues with scleroderma that you might want to look at: Gastrointestinal. We also have a page specific to acid reflux: Acid Reflux.
Symptoms of acid reflux vary in intensity. I thought I had minor GERD until they ran some tests. There are a number of ways to treat it, though.
You might want to ask your doctor if it would be a good idea to see a GI specialist. Good luck on Thursday.
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Posted 06 January 2009 - 06:34 AM
What do you mean it could be part of a disease? Also, regarding your daughter does she ever have throat or chest pain? I never have pain, just feel like cool liquid is stuck in my throat.
Posted 06 January 2009 - 07:05 AM
As it happens, nearly everyone has heartburn occasionally, and about 20% of adults have it at least once a month. It is only when it becomes chronic, and life-disrupting, that they run tests to determine if it is just regular heartburn or more serious Gastroesophageal Reflux Disease (GERD).
Even with GERD, many of us are able to manage it by using primarily non-medication strategies, such as avoiding the food or drink that seem to trigger it for us, being careful about bending over, eating smaller meals, sleeping on an incline, and so forth. And, many people (millions!) have GERD without having scleroderma.
As for hydroxychloroquine (plaquenil), it can cause (usually slight) nausea. I worked around that side effect by taking it at night (per my doctor's suggestion).
I think you'll find your doctor visit reassuring in a way, as even if it were GERD beginning to develop, it would usually take quite awhile for it to worsen significantly, or enough to show up on tests. But, reassuring is not reassuring if you want to know "for sure" you have scleroderma, because quite likely this will not be the tipping point, which leaves you in limbo.
What's the worst is that it sounds like you are on edge, worrying about scleroderma and just wondering when the other shoe is going to drop. That must be very difficult to deal with emotionally. It's not just that you are dealing with a bit of heartburn, which I'm sure you'd take in stride, but rather you are really dealing with fear that it is scleroderma. I do know that the fear can do more harm than the heartburn, but I don't know how to provide proper reassurance.
Obviously, nobody can say with assurity that you'll never develop full-blown scleroderma or other similar arthritis disease. But it may take years (its an average of six years for women) to be diagnosed. Fortunately (in a way), most of us didn't have any reason to even vaguely suspect scleroderma until we were further on down the line, with more specific symptoms. It is the uncertainty, I think, that is harder for most of us to deal with than any of the symptoms or diagnoses. We have a page on Difficult Diagnosis you might find helpful.
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Posted 06 January 2009 - 11:32 AM
I'm in agreement with the others on this....and yes, my specialist says that you do need a couple of active symptoms plus the bloodwork to be diagnosed with scleroderma...doesn't sound like you're anywhere near that from your post so try hard not to panic just yet (although I know this might not be easy for you, been there, done that too). Fear definitely drives us and is not good for anyone with or without a disease for that matter but know that we all understand how fear can get its grip on us. Good luck with your appointment on Thursday...hope you let us know how it went.
Posted 06 January 2009 - 06:35 PM
In my daughters case she has acid reflux, which is a part of scleroderma in terms of systemic involvement.