Changes in health question

[Joe S.]

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!"

[anita]

Steroids are certainly related to bone loss...so 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.

eye2dry,

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.

[anita]

Joe,

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.

[irish]

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

[susanep]

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.
Prayers

susanep

[anita]

Irish,

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 YEAR...no 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.

[irish]

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

[anita]

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.

[irish]

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

[anita]

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.