I want to share something. Yesterday I had a dental appointment. I asked my dentist if he had heard of Sjogren's, and that I had recently been diagnosed. He knew about it and asked if this was the reason for my dry mouth problems. He then asked if I had any liver, kidney or digestive problems.
I have had digestive problems for as long as I can remember, but I'm not aware of liver or kidney problems. Should I be concerned about kidney and liver problems?
I am looking for a Rheumatologist, but does anyone see an Endocronologist? A friend of mine in health care thinks I should see one.
LOL..it seems like everything relates to this somehow. It gets kinda old seeing one doc after another but its for the best. I hope they get to the bottom of the issues for you if they take a fresh look from the AI angle. Please keep us posted on how you are doing.
I will stay in touch. I've gained such a perspective from all the posts. All the information from all of you knowledgeable people makes me not feel so "crazy" about my many symptoms. Being able to connect the dots is somehow comforting.
Good to hear from you! It seems all organs can be affected as this is a 'systemic disease', meaning it can affect every cell. My Rheumatologist explained to me that the constant blood work is more to make sure the medicines are not doing damage to kidney and liver. He said the anti-inflammatory meds side effects, including OTC, are what he is really keeping an eye on. He had me cut back on the Daypro, telling me it's better to take Morphine than go over the daily recommended dosage of an NSAID.
Hope this puts you at ease a bit. I'm glad you are going to see a Rheumatologist, I feel they are essential in dealing with Autoimmune, no matter how good your GP is.
You're not any crazier than the rest of us, girlfriend!
I feel like screaming. My rheumie said SS was nothing more than a pain in the axx (his exact words) and the main prOblems were dry mouth and eyes. I just wish I felt more confident he was on top of things.
Thanks SK. I always appreciate what you have to say.
SK said:
Hi Connie,
Good to hear from you! It seems all organs can be affected as this is a 'systemic disease', meaning it can affect every cell. My Rheumatologist explained to me that the constant blood work is more to make sure the medicines are not doing damage to kidney and liver. He said the anti-inflammatory meds side effects, including OTC, are what he is really keeping an eye on. He had me cut back on the Daypro, telling me it's better to take Morphine than go over the daily recommended dosage of an NSAID.
Hope this puts you at ease a bit. I'm glad you are going to see a Rheumatologist, I feel they are essential in dealing with Autoimmune, no matter how good your GP is.
You're not any crazier than the rest of us, girlfriend!
Yes the liver can be effected. My wife has to monitor periodic labs for her liver functions. Also, her Potassium took a hit and has to take supplements for that as well.
Hi! yes. I've seen every specialist that exists and have had testing some doctors never heard of. The right rheumotologist will be your best friend. An endocronologist is helpful bc you should keep an eye on your thyroid. BEWARE of alarmists! Know your test results and parameters of normal range. Don't let docs march you off to other specialists and unnecessary testing bc of a hair out of range result. a gp w general standard bloodwork will rule out kidney/liver disfuntion. Don't be surprised if every test you ever have comes out normal/negative. :) and if anything you will probably just find that you are very low on vitamin D. You are best served to not be panicked or let a doctor panic you. You an you alone will know when something is not right and stress will only exasterbate symptoms. In your corner. Smile everyday no matter how you feel.
All SS sufferers should have a full blood screen every 6 months to monitor kidneys, liver and lymph functions and annually tolook at antibody profiles.
This does not require a rheumatologist just a competent GP/MD in fact most lab bloods nowadays come back computer assessed and the receptionist gives you the results and if any are flagged as outside the "norm ranges' then your doctor should call you in for a chat and further tests possibly.
Your GP is at least as good as looking at anti ro/la rh etc anti body results too IT'S NOT MAGIC JUST READING NUMBERS - I read my own and discuss with my GP as an equal that way I know what's happening.
In fact in my opinion and experience in the UK there is no need for rheumatologists at all as they know nothing , do nothing but refer you to other specialists for all organs etc which any GP can do as well so cut out the over paid middleman/woman. If any one thinks this is too controversial I can provide copies and reports fromthe 6 Rheumatologists I've had the" pleasure" to meet that will clearly back up my opinion. My GP and consultant neurologist agrees. The research is being done by cell biologists and immunologists and genticists not rheumatologists they just peddle the same 6 drugs that any hospital medic can prescribe ( these drugs are not for SS they are mainly anti cancer therapies that have been borrowed by rheumatologists to knock down the immune system ( a very crude and ineffective response - one lady was killed in the UK as part of a RA drug trial the drug was yet another immune system supressant).Plaquenil is based on anti malarial drugs and has limited value and they don't know how it works, pilocarpine is a herb extract - actually a S American shrub leaf.
The best person to look after you is you so learn the basics from the pubs that Kaz and I have posted and find a GP/MD that you trust and most things can be "managed" from there - you know best how you feel and your GP should if they are any good know you well. I know SK is lucky and has a rheumatologist she trusts but as you will see from the many posts in this forum this is the exception.
Your dentist seems to know more than most rheumatologists!
Thank you, assybish. Your scientific knowledge is always valuable. We are very fortunate to have you and others who have extensive educations in medicine or science to go to for valuable information.
I do agree, there are instances when a GP can be just as good or better than a Rheumatologist, it's all based on the individual, and your trust in and accessibility to them.
My GP is a very accomplished man, but insisted I see a Rheumatologist, and the second one was a keeper. All of my Doctors are always eager to hear the opinions of the others, and seem to work well together. Even if they do not totally agree, they can always understand each other's point of view, and work well together! What a novel idea!
Yes the liver can be effected. My wife has to monitor periodic labs for her liver functions. Also, her Potassium took a hit and has to take supplements for that as well.
My nephrologist is my go-to guy. He orders quarterly labs and I see him every six months. My pcp and my rheumatologist both consult him about any medication changes (most of which I can't tolerate anyway). I am so lucky that he understands my problems so well and monitors me closely.
I know I am late in replying, but I wanted to add that my rheumatologist was really lousy, so I too eliminated him and am now followed by my GP. It seemed to me that the rheumy just refers you to other specialists for any problems, and a GP can do that as well. I developed Trigeminal neuralgia, and she did not hesitate to quickly refer me to a neurologist when it was needed.
This is exactly my experience too rheumatologists just pass the buck to every other specialist who - in my experience has no knowledge of SS anyway yet more time and money wasted and no further forward.