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DebbieE
07-24-2008, 02:35 PM
So I finally am getting in to see a rheumy Monday, and wouldn't ya know, very bloody urine yesterday. So I call my GP, and he rushes me in as past UAs have indicated minor kidney involvment. So he runs a new UA and comes back in. Tells me it appears this time to just be "mostly" a UTI. I tell him I'm going to the rheumy this coming monday and he says "Good!". Well he wasn't too happy when I requested to be sent 2 months ago so ofcourse this sent up some flags. I pick up my UA results on my way out and see why. I'm spilling even more protein in my urine and now I'm also spilling bilirubin in it. My Albumin was low on blood work in May, but he chalked it up to me being on 40mg of prednisone at the time for a bad reaction to a sulfa drug. Looks like he was wrong.

So anyway why I really posted and my question about my upcoming visit. We know I have lung, kidney, and probably heart involvment. Now it's looking like liver can be added to the list. Can anyone that has had that much organ involvment give me an idea of what my visit will be like, what type of treatment I should expect, ect? While I'm excited to finally be looking at getting some relief, I'm also now very nervous about how aggressive my treatment might be.

laurid8967
07-24-2008, 03:42 PM
Hey Debbie -
Sorry to hear about the protein in the urine...I am confused (nothing new -lol) You have lung, heart and kidney involvement, but you've never been to a rheumie? Or is this a new rheumie? Hopefully he'll be a good one, unfortunately, theres not enough of them!!
I have had major issues with my liver, and I can tell you that if you are having any serious liver problems, you will feel SICK...like, REALLY SICK...The liver is responsible for removing toxins from the body. When its not working properly, the toxins get into your body. This causes vomiting (nonstop vomiting for 3 days before I went to ER) and constant nasuea. I also felt like I had the flu X 10...I could not stay awake, I was dizzy, it was awful. When I got to the ER, my liver #s were 12,000 (normal is 0-40)...I was almsot in liver failure. Also what can happen is the ammonia levels increase, and your brain gets affected - people actually sound lke theyre drunk almost. I also had ALOT of pain in my upper right quadrant of my torso (where your liver is). More than likely if there was a problem, it would be inflamed.
I think (not sure, though) that bilirubin and albumin levels can be elevated with autoimmune disease. Im pretty sure I read that somewhere...but as far as liver being damaged, you would definately know (it was absoultely AWFUL). The medicine I had to take to activate new cell growth in my liver was call "Muco-Mist" Oh yeah - it smelled of rotten eggs - even the nurses would turn their heads when they gave it to me...bad experience!!
Anyway, I hoped this helped. As far as treatment goes, I would think you would already be on prednisone, no? If not, they will probably give you that with plaquenil. I am currently on 20mg. of prednisone a day. Everytime they would start to taper my dose, I would flare again. So 20mg. isnt TOO much, and my disease is kept under control. Im also on plaquenil. With kidney involvement, they may put you on CellCept - this is commonly used where there is kidney involvement.
I hope your new rheumie is one of the good ones! Let us know how you make out
Lauri

DebbieE
07-24-2008, 06:23 PM
This will be my first visit to a rheumy period. My GP had been treating my symptoms with anti-inflamatories, Atenolol for my high blood pressure and heart palpatations (sp), flexiril for muscle spams, and Hydro for pain.

I have had joint pain since I was 16, then around Christmas I knew what I had was getting much, much worse so I went to see the doc. He couldn't see me, but a college did. She noticed my malar rash, remembered treating me a couple years ago for chronic hives, and told me she thought she knew what it was and put me on the 7 day trail of prednisone. She said if it worked, then that told them pretty much what it was, and to follow up with my reg doc in a week. When I went back to see him he sent me home with literature on RA and Fibro figuring it was probably RA and had me get a bunch of blood work run the next morning. Well sed rate came back elevated, ANA positive, and leaking trace amounts of protein and small amount of blood in my UA. He had me come in 2 weeks later and informed me he believed I was pre-lupus or mild lupus and that anti-inflamatories should help get my mobility back. Since then I was in his office about every 2 weeks with new symptoms. I went from only about 4 things in Januray, to my list for my rheumy being 18 symptoms long and growing. I have high blood pressure, crushing chest pain, difficulty breathing, heart palpatations, nose sores, ect, ect. He would not put me on prednisone due to the risk to my liver, same reason he won't put me on cholestorl meds. So when I went back after having all the labs repeated in May, I requested to be sent to a rheumy. He was afraid that I would fall into the diagnosis limbo that so many get put in. He also felt like in May that I probably had an overlap. The rheumy had no opening until August 21st, but I called and got lucky that someone had canceled in July.

Fast forward to now. I can no longer tolerate the anti-inflamatories as they are making my lower GI tract bleed horribly. Everthing I have read says that the only things to cause bilirubin to leak out and albumin levels to drop is gall bladder (which I had removed 2 years ago), a blockage in the bile duct, or liver disease. Many sites say that bilirubin leaking into urine is the first sign of liver disease and shows up before pretty much anything else. I do in fact have horrible nausea and am usually only able to eat once a day if I'm lucky. I have gone for 2 weeks with it so bad I could only eat very small snacks a couple times a day or eat nothing at all. They had thought that the nausea was from what ever is causing the bleeding in my GI tract, but maybe not. They are currently running some bacti and are discussing a colonoscopy if they can't find anything there.

There truely was no way to know that when I walked into see him in Jan that I would nose dive health wise and have it all come on so suddenly. He said when he suspected pre or early lupus that it would take years for it reach the point it has now.

Oluwa
07-24-2008, 06:53 PM
Hi Debbie...

I am a bit, okay alot upset with your doctor...Huummm..maybe he should have reconsidered prescribing anti-inflammatories as they as very toxic on the liver in high doses...4000mg is the tops unless you drink alcohol then the limit drops...

I would say whether he thought it was mild Lupus or the start of it, he should have referred you then to a Rheumatologist.... Seems to me he was keeping you in the limbo diagnose. Seems your doctor was trying to treat you outside the realm of his skills, shame on him...

The key to managing Lupus or pre-lupus..or mild lupus is early detection. From this, I would say he was impeding it.

Monday is your appointment, I am grateful there was a cancellation for you...leave out nothing in regards to your previous care, labs, symptoms and etc...

I am not sure what their prescribed regime will be, it could be a combination of things...that will be distinct for your symptoms. Lupus is individualize. I have been fortunate to only have stomach involvement...

Know, a thing about the liver is it is among the few internal human organs capable of natural regeneration of lost tissue...as little as 25% of remaining liver can regenerate into a whole liver again. 67% of a liver can grow back in one week. Cool...

Remember you are in charge of your health care, and if a doctor doesn't give you a referral, request again. If no results, find another doctor...he only wants your cash then I would say.

Be well...
Hugs,
Oluwa

laurid8967
07-25-2008, 07:39 PM
Hey Deb,
Im glad youre going to see someone new. Though prednisone has some bad side effects, low dosage to contol disease activity is the standard treatment...along with plaquenil...he could have at least put you on that. The side effects are very small, and you could have been flare/symptom free by now. I agree, shame on him...Especially with the protein in your urine...Im not a doc...but I believe that indicate a serious problem, and should be treated right away!!
I was DEADLY nasueas when I got sick with my liver...then throwing nonstop...Maybe you would get better results at the ER? With those symmptoms, they would likely do an immediate CT scan/ultrasound. They wasted NO TIME with me...it can be very dangerous (obviously).
Yes, the liver is cool. Mine started regrowing new, healthy cells right away. Thank God...Funny you mentioned it, I had gallbladder surgery two weeks before my liver went downhill.....
Im still in shock about your doc and the prednisone. Tons of people are put on it for all kinds of things...Its just bad long term...like years, I believe. I feel so bad for you, because I KNOW how you feel - I was in the limbo thing for FAR TOO LONG...all the while I could have taken prednisone to get things under control...I mean, I was LAID UP-type sick for a LONG TIME...unbelievable...
I hope you get some answers and TREATMENT sooner more than later, Debbie. Until then, keep us posted, OK?
Love Lauri

laurid8967
07-25-2008, 07:47 PM
Also, why is he saying "pre-lupus" or the beginning of lupus if he told you your lungs, heart and kidneys have been affected? Thats not pre-lupus by any means...thats organ involvement. Many lupus patients never even get to that point!! OK, hes crazy...Im so glad youre going somewhere else.
I am not a major fan of docs anyway...but this guy sounds like Oluwa said - out of his league.
Let us know how you make out
Lauri

DebbieE
08-18-2008, 01:03 PM
Went to see the rheumy and she doesn't think it's lupus. She redid all my labs plus some. ANA still low postive, but all the other lupus tests came out neg. But what was way off is my liver functions. Got the test results back last week as they were elminating any type of infection or virus that could cause it, and they were all negative. It appears I have autoimmune hepatitis. Which basically means I have an autoimmune disorder of some sort that has settled into my liver.

Interesting enough the liver involvment it's self can cause high blood pressure, chest pain, palpatations, and inflammation of the lining of your lungs as well as joint pain and fatigue. And would explain the livedo as well as it could be being caused by the toxins in my blood stream. It does not however, explain the nose sores, hair loss and a couple other symptoms.

I go see my doctor here tomorrow and will probably be requesting to see the rheumy in town. I didn't really care for the one he sent me too. She actually kinda made fun of me or at least I took it that way by saying things like "Let's check for lupus in your ears" and junk like that. Anyway tomorrow I'll see what happens.

laurid8967
08-18-2008, 01:17 PM
Hey Deb -
Glad you got some answers at least...I believe there is alot of info on autoimmune hepatitis on the Internet. What is their plan for treatment of this? Do you take regualar autoimmune drugs? Or are they different when it has to do with the liver? I REALLY hope you get some treatment soon!! It has been far too long with symptoms...
Yes, I would have been offended at that comment as well (lupus in ears)...This is what I mean when I say that sometimes when we tell the docs EXACTLY whats going on, they look at us like we are crazy!! Its such crap, and gets me really ticked off! Why would she think ANYTHING going on with you is funny? Uuuugghhhh...ignorance at its best...However, if she is going to TREAT you, maybe you might want to stick with her for that reason only...I know your reg doc hasnt treated you so far, right? I guess we take what we an get sometimes.
So, hopefully this will be somewhat of a beginning for you, Deb.
Keep us posted
Lauri

DebbieE
08-19-2008, 05:46 PM
Well make that zero in the answer catagory. Diagnostic clinic can't figure it out either so off to Mayo I go. No one near here can perform the biopsies and things that I need to find out exactly what it is. They think it could still possibly be lupus and just for some reason my bloodwork isn't indicating the degree of how bad the disease is or it's some really rare auto-immune disorder that just isn't encountered enough at their level to recognize it. My doctor here told me about 4 or 5 times that I'm going to be his one in a million. He is hoping they can get me in within the next month, but if it's going to be more like 3 months, he's going to put me on prednisone (per the rheumy at the diagnostic clinic) to at least help manage my symptoms before I go. He did however make it clear he wants me off of most of my medications at least a month before I go so that my symptoms are apparent to make diagnosis easier.