My fear…kidney problems. I have seen my mother on dialysis and would rather be dead then do this. Well guess what??? My kidneys are staring to be a problem. I have a doctors appointment two weeks to talk about what to do and so I want to hear what everyone else has or has been doing. What meds are you on and sideeffects. I see this as a real problem since if you have to go on dialysis how do you deal with the dry mouth and not being able to drink much fluid. I know I am looking at the worst possible thing but this is very upsetting to me. My GFR has dropped from 42 to 37.
So instead of going on and on please let me know what others are doing.
Atina, since kidney disease can be overlooked at its early, treatable stages, I would advise you to see a nephrologist as soon as may be. Early detection would be in your favor.
Atina, are you going to a nephrologist, I hope?
I see there is a place here: http://www.renalgr.yourmd.com/
And a whole list of offices here: http://www.medicinenet.com/kidney_failure/grand-rapids-mi_city.htm
Have appointments with several if you can. When you phone, ask if the doc is familiar with sjogren's. Tell them you want the earliest appointment available. Print out some information sheets on sjogren's to take with you, just in case. There is a blog here that lists some good resources about Sjogren's and its possible effects on the kidneys.
Keep your primary care doctor in the loop. If you feel very unwell, head to the ER. Please stay in touch, as we want to know how this goes for you.
I know this is upsetting, how could it not be? Please know that there are some good Doctors, good care, and good meds out there that were unfortunately not available to your mom at your age.
We moderators and those with medical/scientific educations who are so helpful to us, will always do our very best to point you in the right direction, while keeping hope alive. Where there is life, there is always hope. Always there is hope!
Nothing will take the place of a top notch kidney specialists who is well versed in Sjogren's, except our love and support to hold you up until you get there, and if you can get more than one opinion, you are all the better for it. I'll see what I can dig up for you on the net for your area. See if there is any chance of picking up an canceled appointment to get you there sooner. Please do not hesitate it you need the care to to to the ER or call for help. Your well being is of our utmost concern.
Please stay in touch, I'll keep an eye out for any word from you!
I am about3 hours away. What I thought I would do is to go in and talk to my primary doctor and write down questions. I will start reading all I can but thought maybe other people would help with questions and thoughts to bring to the doctor.
It's still early here on EST at 4:23 pm, hope you get some good responses.
I think your plan to go to your GP for help and reassurance is a very good idea!
I don't know much about the kidneys. I looked up GFR as this is the only details we have to go on. Your GFR is considered moderate but not severe.
My advise is to take a deep breath. You may be jumping to conclusions and upsetting yourself needlessly. The next few weeks will only be harder if you dwell on how bad it might be. I know how hard it can be waiting for drs or test results when your dreading the possibilities.
Try to be possitive. There are a number of reasons your kidneys are having a tough time. It may be as simple as changing your medication.
With the world of the internet the temptation to research everything is a great one. Especially for people like us. We have SS and so few Drs really know enough about it, we have to do our own research to help augment their knowledge. But this may be one of those times when you would only put yourself in a position of "knowing enough to be dangerous."
There are too many possibilities right now and you will most likely gravitate to the worst ones. Once you see your Drs. and you get more information about the situation and what they think needs to happen: 1) you may find you don't have as much to worry about than you think, and 2) you will be able to focus your research more to your particular situation.
I hope you find there's a good what to treat your kidneys without (or with only short term) dialysis!
Josh I have seen people on dialysis and that is a real fear for me. It might be moderate right now but it has been going down for that last 3 years. I am only on Zoloft and synthoid. I don’t use NSAIDs any more only Tylenolfor headaches and if I can’t stand ache’s or pains anymore. I know I am overreacting but I just want to be prepared with questions for the doctor.
you need to see a nephrologist/kidney specialist who knows about SS (not all do so check before wasting time and money travelling) Sjogrens can affect the kidneys in several ways and the treatment varies with the nature of the effect of SS so tests need to be carried out so that the best treament can be provided. These effects can be reduced with prompt treatment.
Did your mom have an auto immune disease or was there another cause for her kidney issues.
Assybish love the name btw. My mom had thyroid issues and diabetes but later in life. I need to get my Sjogrens book out and read if they have anything about kidneys before I go to the doctor.
thanks the name is the "pet name" of my cat Aslan!
Your mom had auto immune issues if she had thyroid and diabetes. My mom had MS hashimotos (hypothyroidism) and diabetes - I have so far SS = typical inheritance pattern os AI diseases :(
SS has 3 main effects on kidneys - interstitial nephritis, hyper calcium deposits and renal tubule damage.
It needs a specialist as Dancermom and SK said a kidney man who KNOWS SS (nephrologist) your average/typical GP/MD or rheumatologist is usually ignorant of the effects of SS on kidneys. It is important that you see such a specialist so that damge is averted. Don't be fobbed off by MD and rheumatologists who don't know their stuff as almost all of us on this forum have experienced - the good are few and far between - so don't be put of by negative MD's who say they know best. Falling GFR should be investigated fully as there are several causes BUT SS is HIGH up the list as is SLE so get good advice to reduce your fears. SK Dancermom and I will do our best to support you to get a good medical support. :)
Thanks for the advice. I will start writing my questions down and tomorrow I will get my SS book out. Will let you know what happens.