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Sjogrens Topics => Living With Sjogren's => Topic started by: Joe S. on March 21, 2012, 11:02:24 AM

Title: Changes in health question
Post by: Joe S. on March 21, 2012, 11:02:24 AM
I have a hands in pockets PCP that prefers not to do his job as some of you know.

While I have been trying to drop weight through caloric restriction, I have experienced greater weight loss than expected. (325 to 250 in less than a year, I think less than 6 months)

I am bouncing in and out of my recliner at the drop of a hat. So I think I am getting more exercise than I did last year. I am also lifting and moving bins. I have trouble holding my head up, swallowing and muscle loss in my arms and legs which sends me back to my recliner.

Liver is AST, and ALT are off, HDL, LDL, and Tri Glycerides are very low and out of balance.
Title: Re: Changes in health question
Post by: olmphoto2 on March 21, 2012, 12:50:03 PM
I'm sorry to hear of your difficulties Joe!
Title: Re: Changes in health question
Post by: Joe S. on March 21, 2012, 01:53:49 PM
Thank you for your concern. I am just trying to figure out what twist this may be.
Title: Re: Changes in health question
Post by: bob212 on March 21, 2012, 01:56:56 PM
Like you tell the rest of us: keep breathing!  Otherwise it seems you may have to make a pest of yourself with the PCP to get follow up.
Title: Re: Changes in health question
Post by: irish on March 21, 2012, 02:26:55 PM
Joe, I have no clue what is going on, but I have some thoughts on the subject. Imagine that. ;D

I was looking through your diabetes medications and I am wondering if your dosage needs to be adjusted with this weight loss. Your blood sugars may be good and in normal range, but weight loss can occur with some of these medications and if your system is being overloaded with these drugs they may be causing a overdosage that is affecting you.

I know that Metformin causes me to keep my weight down a few pounds and with the 3 meds you are on they may be potentiating the side effects enough to put you in a high risk situation.

Also, a low magnesium level can give you weakness. Low magnesium is not an uncommon occurence and generally is accompanied with low potassium and chloride. I think I would question the effects of some of your OTC supplements also. Any time we have a weight loss we are in need of reassessing our medications. Many times we have to lower the dosages.

If all else fails you might want to be checked for a neurological autoimmune disease, but if it was me I was check out the medications angle first. Also, evaluate your diet and see if you are getting enough of the normal vitamins and minerals. Do you take a good supplement??? Just some thoughts.
Title: Re: Changes in health question
Post by: Woolygimp on March 21, 2012, 02:28:20 PM
It's a shame because people with other autoimmune diseases are taken seriously, especially people with Lupus, even though Sjogren's really different at all.  It seems like everyone on this board has "other " problems past the dry mouth and eyes that they have trouble attributing to anything and are given a difficult time with doctors.

Good luck and I hope you find out what is going on... I'm still trying to find out what's going on with me.
Title: Re: Changes in health question
Post by: susan on March 21, 2012, 02:30:05 PM

The dramatic weight loss & abnormal labs are worrisome----is a second opinion an option for you?
Is your physician concerned at all?
Title: Re: Changes in health question
Post by: topping21 on March 21, 2012, 03:12:16 PM
Hang in there, Joe!   Like Susan said maybe a second opinion is what you need.

By the way the first thought that came to mind was if you are Type II diabetic maybe you might want to see if it is the diabetes/insulin problem?
Title: Re: Changes in health question
Post by: Joe S. on March 21, 2012, 05:15:27 PM
Thank you all for your kind responses. Just for your information A1C>15 BS>500 according to doctor. I do supplement with a good multivitamin and additional magnesium+.

What type of doctor should I get a referral to? Neuro, Endo, Rhumy or other?
Title: Re: Changes in health question
Post by: jazzlover on March 21, 2012, 05:21:06 PM
Are you eating good fats?
Title: Re: Changes in health question
Post by: anita on March 21, 2012, 06:20:20 PM
It seem like your diabetes is completely out of control.  You should be seeing whoever manages this...PCP or Endo...ASAP.  Please keep us in the loop with updates.
Title: Re: Changes in health question
Post by: eye2dry on March 21, 2012, 06:29:56 PM
Have your PCP get off his duff and investigate whats up with your new symptoms , have him use his medical degree.

I hope it turns out to be nothing serious...maybe it will have to be you to get to the bottom of it...what a shame.

But Joe:

Don't panic.

Breathe in...I am

Breathe out...Calm.

Above is just some advice I got from a guy on this might even know him.

Title: Re: Changes in health question
Post by: Joe S. on March 21, 2012, 07:01:40 PM
Thanks eye2dry, I have been doing a lot of that.

Susan, I have not been worried about the diabetic numbers since I realized that the endo did not know what they meant and would not do the required test to identify the true problem. Every time I was given insulin, the numbers went up instead of down. According to the Endo, I should be in a coma. Yet here I type while watching TV and fidgeting. One of the supplements that is giving me good benefits tweaks BS and A1C readings.
Title: Re: Changes in health question
Post by: irish on March 21, 2012, 09:24:08 PM
Joe, The normal blood sugar is usually around 80 - 130 fasting---more or less. It depends if you are older or younger. The AIc should be under 7.0---usually, but sometimes some people can get by with a higher one as in 8.0 which is based on their health status and determined by their doctor.

I can believe that you would be weak if your blood sugar is over 500. I would think that you are peeing large quanties of sugar out in your urine. I would advise you to see your GP ASAP to get this back in normal range. After that I would ask to see an endocrinologist as they usually have a much better way to deal with diabetes.

I have to tell you that you are running a high risk of brain damage or stroke with blood sugars this high. Our brain tissue is very fragile and low or high blood sugars can cause significant damage. You are way too young to end up with the loss of brain tissue. Please get yourself to a doc and probably get on insulin. These 3 meds are not working for you.

Also, be aware that there is a whole new way of dealing with diabetes and insulin these days. It makes keeping track of blood sugars and carbs so much easier and helps maintaining blood sugars easier also. Keep us posted. Irish ;D
Title: Re: Changes in health question
Post by: KarenR on March 21, 2012, 11:31:28 PM
I know you are wondering what kind of doctor you need to get next but most of the specialists will have a long wait to get an appointment. Not being able to hold your head up and feeling weak in your arms and legs is not a good sign. My recommendation would be to go to the ER ASAP and let them figure it out. They will call in the specialists and as an ER or inpatient you will get care right away. Just because you are not in a diabetic coma right now doesn't mean that you won't be in one soon. Jumping up from your chair or feeling like you are having bursts of energy could be your heart beating erratically. I hope you are still online although I know it is very late/early (depending on your point of view). I think it is time for you to go to the ER and put yourselves in their hands. When your PCP is not advocating for you sometimes you need to advocate for yourself. 

Title: Re: Changes in health question
Post by: Suzie on March 22, 2012, 12:27:05 AM
Stupid doctors - do what everyone says - push for help. Now! You need it. You deserve it.  :-*
Title: Re: Changes in health question
Post by: anita on March 22, 2012, 04:01:36 AM
I'm going to be pretty frank.  You have talked about all (I can't think of one you actually said was good) your bad doctors over the years.   I think you need to put all this aside, and get to the ER if you don't trust your own physicians.   Your BS and A1c is screaming at do something.  Even if you are just sitting there watching TV, your kidneys made be getting damaged as you sit, or your blood clotting with a stroke on the horizon. 

Frankly, I think you know better then this, and I can imagine you being the one to type out a reply to someone else with these problems telling them to get to the doctor ASAP.   I'm certainly surprised you haven't already reacted.  I don't mean to be cocky, but to use one of your own need an advocate.  I doesn't look like you are able to be proactive in your own care.  Can your wife help you?

Please Joe, get to the doctor.
Title: Re: Changes in health question
Post by: Joe S. on March 22, 2012, 06:05:03 AM
With these high BS levels, I have no neuropathy or retinopathy. They have both reversed or healed. This would be impossible if the BS levels were a true indicator of what is going on. I know I am insulin resistant and that when given insulin I get much worse and my BS & A1C go up with every dose. The doctors tell me that these things can not be from their Theories but actual data disproves their theory.

I know from personal experience that people do not have to live with toxic neuropathy or retinopathy.

I am not concerned about the blood sugars. They are a lie as they are measuring the wrong component. I am healing well. I pee frequently only after a water pill. I do not believe that this is the true issue. It is a red herring at this point. Like the doctors, you are only looking at these numbers. Please go back and read my first issues with cholesterol and liver function.
Title: Re: Changes in health question
Post by: irish on March 22, 2012, 10:46:56 AM
Joe, If you are insulin resistant it seems to me that you need to stop your 3 diabetic meds as most likely your blood sugars would go down then. I am basing this on yourinformation regarding insulin driving your blood sugars up. It would seem plausible then that your diabetic meds would be driving your blood sugars up. I don't believe this myself, but with the explainations you have given of your body's response to diabetic meds this could be possible. It would be prudent to work with a doctor on this problem.

I also wonder what kind of a diet you follow. It sounds like you might have a high carb diet hence the high blood sugars. This is interesting, but I would certainly be more proactive concerning this if it was me. Diabetic complications are bloody miserable. I have taken care of a lot of end stage diabetics with infections, kidney failure and amputated limbs not to mention the strokes and heart attacks brought on by diabetes plus the dementia related to cardiovascular disease.

Diabetes is an inflammatory process that sets up an inflammatory response in the blood vessels that cause the plaque to adhere to them. Also causes the higher lipid levels, etc. It is a vicious circle. I went to my bimonthly diabetic education class at the hospital last evening and we discussed the circulatory system. Interesting but totally scary so following the diet is the best way to avoid the big health issues.  Good luck. Irish
Title: Re: Changes in health question
Post by: Joe S. on March 22, 2012, 11:48:39 AM
Thank you Irish, I to have lost several friends to diabetes. I have watched the complications happen with others. I have watched CAM therapies reverse a lot of complications. Retinopathy and neuropathy. A simple cup of goldenseal lickerish tea with honey drop blood sugars over 200 points. 2 oz of walnuts per day will reverse insulin resistance.

Any ideas on the AST/ALT and the LDL, HDL, TriGly levels when the sugars are excluded?
Title: Re: Changes in health question
Post by: Carebear on March 22, 2012, 01:22:25 PM

I am very concerned for you, dear friend.  I completely disagree with your analysis of blood sugar.

I just lost my father-in-law as a result of his blood sugar levels being too high on a consistent basis.  He suffered from extreme brain damage which resulted in rapid onset dementia.  This was so, so hard on his family.

I hope you reconsider, and get this checked out.

Title: Re: Changes in health question
Post by: Joe S. on March 22, 2012, 02:03:45 PM
Thank you for your concern carebear. I have been to doctor after doctor with not only no improvement but in worse shape than before I saw them.
Title: Re: Changes in health question
Post by: anita on March 22, 2012, 04:12:44 PM
If the goldenseal and honey work so well, then why is your BS so high?

This is not the Joe that encourages others to get checked when it's the appropriate thing to do. 

How "off" are the liver tests?  Do you have appetite, normal bowels, etc?  Any nausea or abdominal pain?

I'm curious...what did the ordering doctor say about these tests results?  Is the one that ordered the tests someone you trust to treat?
Title: Re: Changes in health question
Post by: susanep on March 22, 2012, 04:24:44 PM
Joe, I don't know what the problem could be or the answer. I am sorry you are having to deal with this. I also lost weight over the last year using a lower caloric diet.

My blood sugar has dropped too low now. I almost passed out at one of my gp visits, and they had to give me candy.

Is there a doctor at some emergency room that you trust to see? You do need someone that is good at a diagnosis of what's going on.

Title: Re: Changes in health question
Post by: irish on March 22, 2012, 05:30:35 PM
Joe, The reason you are losing the weight is because you have the high blood sugars. You body is literally metabolizing itself and the end result will be kidney failure. Most likely you have some ketones in your urine and are in ketosis.

I can understand your issues with the diabetes, but if you are taking honey or other medications that contain sugar plus eating a lot of carbs there is no way you will get out of this life without serious end failure cardiovascular disease. In fact, eating too much of anything, protein, etc fats, etc will cause the blood sugar to increase. Everything turns to sugar eventually due to metabolism.

If you have all the high lipids then you are a walking time bomb. The lipids thicken the blood and cause it to adhere to the inflammed walls of the arteries. The arteries and veins then plug up because of the accumulation of the fat or plaque on the sides of the arteries.

This is what causes the heart attacks, strokes and kidney failure. Neuropathy is another issue and some people just don't have as much problem with this. However, if you have a stroke, heart attack and kidney failure which needs dialysis it really doesn't make much difference if you have neuropathy or loss of vision due to retinal changes. After all that tissue destruction in the body it causes our life to become pretty hard to manage and deal with on a day to day basis.

We just talked about the LDL, HDL, Trig and Cholesterol last night at my diabetes education class and there is no easy way to get rid of these problems. They are caused by poor heredity, poor dietary control of diabetes and often the need for a statin drug.

The one thing we also learned (cardiac rehab nurse talked to us along with dietician) was that diabetes does not go away. It is a progressive disease that has be be accepted and dealt with. The diet is not all that bad compared to years ago. The insulin treatment of diabetes these days is literally awesome. Adjusting to diabetes these days is a breeze compared to 40 years ago.

I know that most likely you haven't had a chance to see what is out there as far as control. If you are on the 3 meds without control than most likely you are a candidate for insulin. You will have to be open minded about this though in order to get your life back in sync.

There are some things that can be helped with nutritional supplements, but managing diabetes is not one of them. Go to an endocrinologist ASAP (after seeing your GP and getting a referral and diaetary couseling) and talk with him about your theory and ask him what the new treatments are. They can change your life and enable you to eat a more normal diet without excuding as much. The bottom line is control and logic.

I am going to come right out and say something that you may not like, but it needs to be said. Is there a chance that you are suffering from a deep depression with a repressed suicidal ideation?? This is always possible any time someone has issues with diagnoses. I hope that you are able to get help if this is the case.  Also, with high blood sugar comes cloudy thinking without us realizing it. Please be aware of making any big decisions at times like this.

Remember that every time our blood sugar goes out of control it causes inflammation of the arteries, nerves and other tissues which in turn lead to an increase in all those bad cardiovascular issues, etc. We are in control of our destiny and I would love to see you hang around and enjoy your wife, kids and grandchildren. Take care my friend, Irish
Title: Re: Changes in health question
Post by: Skylar on March 22, 2012, 05:39:44 PM
Joe, I hope you see your doctor. I congratulate you on your success at weight loss - but along with the weight loss, some of your medications needed to be checked and dosages changed - especially any relating to diabetes. Are you monitoring your blood sugar at home regularly? What did your Dr. say when he gave you these results? BTW, Irish mentioned Ketones - and yes, you can buy dip sticks to measure ketones in your urine at home to see if you are in ketosis. I also just finished reading what Irish said - I hope you read it carefully - there is a lot of excellent info in her very caring and thoughtful post.

Also you don't mention what kind of diet you are one - except to say you are calorie restricting - but maybe you have developed a nutritional deficiency from your diet? Many of these can affect different organs.

For a couple of months last summer, following the advice of my PCP, I was increasing my Omega 3:Omega 6 ratio - getting them as close as possible to 1:1 in the hopes it would help reduce inflammation - unfortunately it didn't,but that's another story. In order to do this I used a website that is linked to very detailed info from the USDA National Nutrient Database for Standard Reference - they update their website with each new release. If you log in your daily food you can see if your choices are balanced and meeting your needs. This is a website that was developed by people who are following calorie restriction as a way to live longer - I don't do this, I was just using their free resource because it is so detailed in it's nutritional data and it's easy to use as well as free. You can download it from

I hope you get this resolved quickly - if your blood sugar numbers remain high and out of control - you will develop severe and irreversible health problems - as you mentioned you've had several friends die from diabetes - it is not pleasant.
Title: Re: Changes in health question
Post by: jazzlover on March 22, 2012, 05:55:08 PM
Joe... please listen to irish... your life is at stake!!! Show this thread to your wife!!
Title: Re: Changes in health question
Post by: Woolygimp on March 22, 2012, 07:45:05 PM
I really feel out of place posting here because I know so little about diabetes, but you've always been one to help other people so I really hope you get things looked into and that things are alright!  I believe in the diet aspect of disease and that you can control or mitigate the damage through healthy eating, but it only does so much. 

I do know that a blood sugar of 500 is something that needs to be addressed.  At least get a test done for urinary ketones to make sure you're not in ketoacidosis as Irish said, you owe yourself that.

Please take head to what Irish said.  She talked a boatload of sense into me and we're all susceptible to the foggy thinking with all this crap that we have to deal with... but we're all in it together and sometimes our judgement isn't always sound.  I completely understand your distrust in doctors but there are some good ones out there willing to sit down and talk with you and that are generally interested in the well-being of their patients.
Title: Re: Changes in health question
Post by: Joe S. on March 22, 2012, 08:16:16 PM
LDL, HDL, Trig all below acceptable levels.
AST / ALT below acceptable levels.

There are no ketones in my urine.
Endocrinologist do not know what insulin resistance is. (omega3 to omega6)
Normal appetite, and bowels, for me since childhood.
No nausea or abdominal pain.

One of my supplements (PQQ) will give artificial high blood sugar and A1C because the meters are not measuring your true blood sugar they are doing it by reference.
Title: Re: Changes in health question
Post by: Aquarius on March 22, 2012, 09:09:14 PM
Joe, you need to set aside your beliefs momentarily about western medicine and get seen asap.

Your statement that you are not concerned about blood sugar over 500 indicates that you are not thinking clearly and are engaging in dangerous magical thinking.   

Failing to get help if your blood sugar is indeed that high could land you in a heap of trouble that no amount of tones or supplements will reverse.   You need to understand this, you could be on the verge of a medical crisis. 

Please get help now.  Sometimes we need to trust others.  This is one of those times.   
Title: Re: Changes in health question
Post by: stephL on March 22, 2012, 09:20:19 PM
Dear Joe,

I understand from first hand experience that after seeing a long string of 'hands in the pocket" doctors, how terribly discouraging that can be. It's so wearing to be ignored and it can become harder and harder to be assertive, especially when you're physically and mentally fatigued.

Who among your family, friends and neighbors will go with you to be your advocate? If there was ever a time to ask for a favor, this is it. Hopefully it would be someone with a strong personality who could play the role of firm negotiator and who doesn't mind being a bit demanding.  ;)  Please get yourself over to the ER or an urgent care center as soon as possible  and get better soon. We'll be here pulling for yah! <3

Title: Re: Changes in health question
Post by: Joe S. on March 23, 2012, 03:21:54 AM
My wife has come with me on many occasions.
Title: Re: Changes in health question
Post by: gardenlover on March 23, 2012, 07:44:33 AM
Great suggestion, to go to the ER.  Please go Joe, and let us know how you do. 
Title: Re: Changes in health question
Post by: jazzlover on March 23, 2012, 11:29:45 AM
Title: Re: Changes in health question
Post by: genko_b on April 03, 2012, 08:05:48 AM
Take care, Joe. Please check in when you are able - everyone is worried about you.

Title: Re: Changes in health question
Post by: lea78 on April 03, 2012, 08:33:22 AM
I hope Joe is OK and soon posts so we know how he is.
Title: Re: Changes in health question
Post by: Joe S. on April 14, 2012, 08:11:35 AM
I did go to a level one trauma center.
Title: Re: Changes in health question
Post by: Dolly Dimples on April 14, 2012, 10:35:57 AM
     AND ?
Title: Re: Changes in health question
Post by: lostone on April 14, 2012, 02:35:23 PM
Dam shame that joe had to fall down a flight of stairs, end up in the hospital,, in rehab,, all becasue those morons cant read bloodowork,, and there never going to feel at fault, I hate them, not all,, just the lousy ones that snatch and grab every dime out of us,
Title: Re: Changes in health question
Post by: KarenR on April 14, 2012, 07:09:44 PM
Joe, all that time you were in the hospital did you see any new doctors or just your usual PCP making a hospital visit? I'm hoping that your time there got you face time with some other doctors on staff at the hospital who may have a different take on your blood sugar and other levels. I am curious to hear what happened when you went to the hospital for your injuries.
Title: Re: Changes in health question
Post by: Joe S. on April 15, 2012, 10:40:53 AM
all my doctors are new. PCP has not visited. I keep getting more insulin and sugars climb.

My leg broke and I fell down the stairs into the basement. It took 6 emt's to get me up our very narrow stair. I almost fell off the board several times as they got me out of the ambulance. Monday the kept me on pain meds while they tried to bring my sugars down. Surgery lasted three hours according to my wife. They put a rod from my knee to my hip ball. My bowels are blocked currently so I am not eating very much. This may be a cause for blood sugar increase to 411 this noon.
Title: Re: Changes in health question
Post by: Reanne on April 15, 2012, 11:08:33 AM
Just wanted you to know my thoughts and prayers are with you Joe.  What an awful ordeal to go through.  I an relate about nearly falling while they were moving you.  Two EMT's nearly dropped my husband when he was critically injured.  I don't know what would have happened if I hadn't been there to help. 

Just a thought, could it be all you've been through that has raised your sugar levels? 
Title: Re: Changes in health question
Post by: Dolly Dimples on April 15, 2012, 11:09:45 AM
My goodness Joe, your certainly getting a full blast of problems right now.
   Please be careful Joe, we are all with you  in there,. I'd sue the hospital for your accident!
                  Keep up the faith and info us any updates.   Bless,  Dolly

Title: Re: Changes in health question
Post by: anita on April 16, 2012, 04:10:36 AM

ask to see an endocrinologist.  A professional needs to be managing your blood sugars.
Title: Re: Changes in health question
Post by: Gayle on April 16, 2012, 04:28:01 AM
Okay, yes, you need a new doctor... find a diagnostician in your area. If not one close, find one in another area. There are many good ones, who basically specialize in figuring out what is going on. They are not necessarily a IM, PCP, Neuro or Endo.. they are like a combined - mega doc. They can figure out the liver, DM, etc.. This is what I finally did and got answers. Good luck Joe and know you have many sending hugs and prayers for you to heal!
Title: Re: Changes in health question
Post by: Seeker on April 16, 2012, 06:59:30 AM
Howdy Joe, it must be heart warming to see all the concern you are getting.  I to am concerned about your well being. 

Reading up on being insulin resistant (Metabolic syndrome).  I can see how frustrating it can be to deal with the doctors.  It's almost as bad as convincing them about Sjogren's.

Joe, I only ask that you don't shoot from the hip when you make your decisions on your health care.  You have always seemed to listen to others and weighed all the information before you have decided.  Your helpful posts have encouraged and helped so many here.

All things said and done, the final choice is yours.  Be well my friend.

Seeker ;)

Title: Re: Changes in health question
Post by: Joe S. on April 16, 2012, 10:27:33 AM
I currently have a lot of new doctors including and endo. I have not heard from my PCP. I am sure that he does not want to talk to me right now. Mistakes are hard for people admit.
Title: Re: Changes in health question
Post by: A66eyroad on April 16, 2012, 10:53:45 AM
Does your PCP know you're in the rehab center?
Title: Re: Changes in health question
Post by: anita on April 16, 2012, 01:08:13 PM
I'm lost.  What does the PCP and a "mistake" have to do with you falling?
Title: Re: Changes in health question
Post by: Joe S. on April 17, 2012, 10:32:43 AM
A few months back, I went in to my PCP and asked for vitamin and mineral tests to be run. I said that I may have osteoporosis. He said no. He would not run the tests because I was a male and too young. The bone broke and then I fell.

I see a doctor here from the Fairview health care system. She is filing reports into the network on my status. They are avilable to hem and he sould be getting updates like my old doctor did.
Title: Re: Changes in health question
Post by: anita on April 17, 2012, 10:42:49 AM
I don't think labs would have given you the answer anyway.  You can have low calcium, Vit D, etc and not have osteoporosis.  You would need a bone density test to check for osteoporosis. 

Have they done a bone density test (dexa scan) since you've been in there to confirm this?  If not, you should get one so you know for sure. 
Title: Re: Changes in health question
Post by: bob212 on April 17, 2012, 10:45:04 AM
Sorry about all this, Joe.  You would think that where we have a disease where 90% are women that your PCP would not use the fact that you are male to decline a test.  Amazing.
Title: Re: Changes in health question
Post by: Joe S. on April 17, 2012, 10:51:37 AM
I have not has a Dexa Scan yet. My PCP did not know what Sjogren's was. He is of the school that does not believe in AI diseases. I believe that he said that he did his internship at Mayo.
Title: Re: Changes in health question
Post by: A66eyroad on April 17, 2012, 11:07:01 AM
I didn't believe in palm trees until I went to Florida for the first time, either. That doesn't mean they didn't exist.

Sheesh, Joe, this makes me so mad I could spit.
Title: Re: Changes in health question
Post by: Joe S. on April 17, 2012, 11:09:30 AM
It seems to be the way things work today. Getting mad does not help a lot. We have to find ways to improve things.
Title: Re: Changes in health question
Post by: anita on April 17, 2012, 11:48:53 AM
Ask for a dexa scan while you're there, so you know for sure.  If it IS osteoporosis, you need to be treated.  It is not something that should be assumed.

Well, we all know how Mayo handles AI diseases...LOL  Gosh, they toss people out in the wind.  Maybe you can hang onto some of the docs helping you there.
Title: Re: Changes in health question
Post by: rcristal on April 17, 2012, 11:54:39 AM
  Although it took 4 1/2 yearrs to be properly diagnosed, I am in really good hands.  I have a Rhumy Doc at a major medical center that finally figured it out.  That said, I am really suffering.  I have bad hearing problems, Tinnitus, muscle and joint pain, Arthritis, dry eyes and mouth and on and on. 

I guess the toughest part is the Chronic Fatigue.  I am 61, a father of five, a former Coach and Businessman and a type A.  The smallest activity knocks me out and it is really frustrating.  I do not know how to slow down yet I have no choice.  I am starting to realize that I MUST mentally accept what is happening to me. 

Good luck to everyone.
Title: Re: Changes in health question
Post by: Ripvanann on April 17, 2012, 12:16:44 PM

I haven't been able to post, but I want to let you know that I've been praying for you. Sorry you're going through so much.

Peace and blessings to you,
Title: Re: Changes in health question
Post by: eye2dry on April 17, 2012, 02:20:26 PM
I will seem ignorant but I don't care.

Question: SJS folks have higher incidence of osteoporosis? Is is d/t prednisone use? I don't believe I have read this, my rheumy has never mentioned it.

Please tell me how and why we are prone to be deficient in Ca and Vit D.
(I do know that my age and gender are against me).

Title: Re: Changes in health question
Post by: rnathans on April 17, 2012, 03:27:05 PM
I do not think Sjogrens causes osteoporosis but long term steroid use can. For me I had a double whammy.steroids and a medically necessary hysterectomy at age 44. I opted for no estrogen replacement, still glad about that, but no estrogen is another risk factor.

The good news is that a yearly infusion of aranesp has improved my. One density.
Title: Re: Changes in health question
Post by: Joe S. on April 17, 2012, 06:05:08 PM
My potassium levels have been less than on half the minimum. My nurse practitioner said that would cause fatigue and no endurance. They are giving me lots of it hoping that my levels will improve. I like the doctor that is overseeing my stay here. I am really impressed with my Nurse Practitioner. She has caught things others have missed. She keeps notes like you would not believe. She explains every thing very clearly including the why.  She did look in my eyes to see if there was eny thing there that would explain my vision changes. Her comment was "OMG are your eyes dry!"
Title: Re: Changes in health question
Post by: anita on April 17, 2012, 06:17:51 PM
Steroids are certainly related to bone is low calcium and vitamin D.  One big factor for bone loss that many don't think of is inactivity.   It's actually a huge factor...and proven that exercise and weight bearing on the bones increases density.


I think (best guess) that part of the reason were are commonly deficient in Vit D & Calcium is improper GI absorption.  Sjogren's directly affects of GI system with lack of moisture and motility.

Title: Re: Changes in health question
Post by: anita on April 17, 2012, 06:26:50 PM

Low potassium can cause lots of things...especially muscle cramps, heart arrhythmia, fatigue, and weakness.  there are many foods high in potassium...tomato juice, OJ, beans, etc.  Look it up and see what you can add to your diet to help boost your level.  Glad to hear they are giving you supplements right now.

I certainly hope you can keep seeing these doctors (and NP) after you go home.
Title: Re: Changes in health question
Post by: irish on April 17, 2012, 09:41:02 PM
I think that the latest train of thought on the Vitamin D is that they have found that people with autoimmune disease seem to have low blood levels.

I have done the big doses for several weeks and big doses daily and am now on the daily 20000 mgm of vitamin D. Last summer my vit D was 33 and my FNP told me at my recent appt at immunology that she likes to keep it around 60. Apparently mine has not been going up very fast. I am to have a boat load of blood work before my infusion next month so will see where I am with that.

With that being said, it is also now known that we don't get enough Vit D much of our lives and that alone can contribute to the osteoporosis. As fas as the scans, etc. My hubby had a not so good scan and can't take any of the drugs as his gut can't tolerate it. He did the Calcitonin nasal spray for some years but now they don't use that as much. Anyway, our doc told him that just because he has the osteoporosis doesn't mean that he will have a fracture.

I am beginning to think that a lot of the stuff that happens to us is just the luck of the draw. We can do everything right and still die from something we should never have gotten. Such is life. My opinion only. Irish ;D
Title: Re: Changes in health question
Post by: susanep on April 17, 2012, 11:47:49 PM
Joe I hope you keep getting some answers, and the care and treatment you deserve. Sometimes I feel that no matter what doctors we have, we all are lacking in truly what is going on with all of us.

No, I am not trying to sound paranoid.  ???  Well, no more than the average person. lol.... Also have them to keep doing some of the blood work on you for these diseases with the more extensive blood work that can show up abnormalities that sometimes the standard ones don't. That is how my second rhuemy found out I had lupus, I guess all along with the sjogren's etc.

Let us all know what you need.

susanep :)
Title: Re: Changes in health question
Post by: anita on April 18, 2012, 04:46:51 AM

You know, there is a once a year IV for osteoporosis.  It's called Reclast.  I have significant osteoporosis and cannot take the typical meds due to gastroparesis.  Insurance will approve it if the doctor provides info on the stomach problems. The IV takes all of 15 minutes, once a joke.  I have done this for 3 years now and had another dexa scan this year...there was improvement in my numbers.

Worth looking into for sure.
Title: Re: Changes in health question
Post by: irish on April 18, 2012, 02:57:58 PM
Anita, It is my hubby that is having the osteoporosis issues, although the doctors are not worrying about his bones as he has so many other things wrong that are very serious.

The bottom line is he sometimes has elevated calcium blood levels and the doc has told him to not take calcium anymore as it could given him more trouble with his kidneys than is worth it. Interestly enough, our family GP also says that taking the meds is desired, but it is almost impossible to pick out who will suffer a broken bone when they fall.

Surprisingly, there are many people who do not have fractures with a fall and osteoporosis.  I still don't understand why, but I worked geriatrics for over 25 years and know that this is true. So many falls happen for so many different reasons and not everyone gets a fracture.

At this point in my life my bones have remained fairly good according to my bone scans. I have made the choice not to take any of the medications that are available for the bones. There are many foods and calcium that are available and the vitamin D helps with this. I have just read too many side effects from these drugs and do not want to even take the chance. Just my opinion. Thanks. Irish ;D
Title: Re: Changes in health question
Post by: anita on April 18, 2012, 06:25:49 PM
I am proof of what you just stated...that some with osteoporosis don't get fractures.  I just had a horrific fall last week...I mean really bad on the steps to the garage and did a swan dive type fall onto the concrete floor.  I SHOULD HAVE fractured something with my significant osteoporosis, but I escaped with just multiple bruises and strains.  And this was not my first fall (but definitely one of the worst)...and I have not fractured anything YET...knock on wood. 

There are many reasons for falls and/or fractures.  My fall was (and usually is) due to poor proprioception.

This is why i think Joe needs to get a dexa scan to confirm or deny the osteoporosis, instead of assuming this is why his leg broke.  Actually, if they had even a thought it was the cause for his leg, they would have already done one.

Your hubby might benefit from the Reclast at some point if his osteoporosis is significant.  There are no GI side-effects like the other meds...actually, I have had no side-effects whatsoever and I'm pretty sensitive to meds.

Title: Re: Changes in health question
Post by: irish on April 19, 2012, 12:06:06 AM
Anita, My husband is not well enough to take that medication. His immunologist also doesn't want him taking anything like that. My husband is sick every day of his life lately with infection. Just got back from ER about 2 hours ago. He doesn't have pneumonia again-yet, but his white count is 19,000 again.

I am not trying to sound rude and I do appreciate your concern,  but my hubby is on borrowed time and his bones are the last thing we are worrying about. Sorry to be so graphic, but this infection is serious and very worrisome. Life is very fragile. Irish ;D
Title: Re: Changes in health question
Post by: anita on April 19, 2012, 03:12:22 AM
I understand, now.  I was not aware that he was in this condition.  So sorry to hear this.  When you said he had a lot of problems, I thought of how many here (including myself) that have multiple (and serious) things going on...but not in the same state as your hubby.

I will add you & your hubby to my prayers and thoughts.