View Full Version : Advice from luppie friends?
10-17-2008, 04:14 AM
Thanks for your patience reading this, I'm a new board member. It's like impossible to have anyone hear me out. I'm frustrated. So, who to turn to....how about others who deal with this disease.
So here is my story. 20 years ago, I got sick. Took 5 years for them to tell me I had vasculitis after my kidney's started failing. Missed the target but hit the tree. At least the treatment was similar to what it would be for Lupus, the disease they told me I had about 3 years ago. After dealing with a bunch of fatigue and difficulty with joint aching, dizziness, double vision, etc....I got to a Rheumatologist who told me I had lupus, not vasculitis. She started by weaning me off of prednisone and getting me on Imuran. It took a while, but after being on the Imuran, my WBC and RBC count dropped and they had to take me off. They also had me on Plaquenil. Amazingly I felt FANTASTIC for 2 1/2 years!!
Earlier this year, I started feeling punky again. I went to the Rheumatologist, who put me on a short dose of Prednisone. Also discovered that I was really low on Vitamin D (15) and put me on megadoses of that vitamin. I was on a low and quick dose of Prednisone (20mg) but started noticing that I was getting what I call "flutters" that I think could be my heart, at least in that area of my chest/neck. I probably normally would have been concerned about this, but I had been checked over thoroughly in March when I complained of being short of breath...I think they overreacted because of my Lupus history. But I got a clean bill of health. Doctors seemed to think the Prednisone was causing this 'flutter". Well, about the time I got weaned off of the Prednisone, I started feeling icky again and she put me back up on the Prednisone, this time to 10mg. Still have the flutters...
So here is my problem, I still don't feel terrific. Foggy head, dizzy, tired but not overwhelmingly so. But when my doctor does my blood tests, she doesn't see anything that indicates that my lupus is flaring!! All very familiar symptoms I had before. I so to the doctor and list off all the odd symptoms, go through periods where I drop weight easily, puffiness under my eyes, hair loss, numbness in my toes, sweatiness at night. But when I sit and list off my symptoms, my doctor looks at me like I'm nuts and tells me not to focus on my symptoms. Once I got the diagnosis of Lupus, I thought that when I went into what I see as a flare, we would nip it in the bud and I'd be back on my feet. Not the case. I guess I realize that the drugs are pretty serious and none of the symptoms are going to shut me down, but it really takes the edge off of life. I will have some a couple of the blood tests come up positive, but not enough apparently to make it officially "Lupus".
Also, this is funny, I told my doctor that when I'm coming down with something like a cold, for a day or two, I suddenly feel "normal" and pop out of feeling blah. Then, bang, I come down with a cold or stomach flu...It's so real to me and I only see it when I'm bogged down with Lupus. Again, mentioned this to the doctor with a raised eyebrow.
So, I'm turning to you guys to see if I am crazy or if others understand what I'm saying here. I wonder if you can be in a Lupus flare without any blood test evidence. My sed rate was at least elevated, but because I've had a cold for the past 4 1/2 weeks, she thinks that is what is causing this elevation.
Thoughts? and Thanks, Larz
P.S. Does this disease scare everyone? When I was feeling great, no problem. But with this flare, I get scared that "a normal lifespan" is more or less a dream.
10-17-2008, 05:20 AM
I am sorry to hear that you are going through a hard time right now with this horrible illness. I think that it is possible to have flares and not have it show up in the blood every single time. I know that this has happened to me a lot of times. From what my doctor told me, that Lupus is Cyclic. It tends to go in cycles. He told me that there is no cure and that at times the flares will happen. There are times when I do get scared when I flare. I am in a flare right now where the Lupus is affecting my knees and wrists. I have a lot of problems along with the Lupus and I don't tend to go to the doctor with every flare. A lot of times I just tend to see what is happening and then if it gets severe I will see the doctor. I have to see the Rheumatologist every 3 months, because I am on Imuran and Plaquenil and various other medications to have my blood checked to make sure everything is ok. I wish that they could find a cure for this illness and hopefully one day they will so nobody else has to be sick. There are a lot of wonderful folks that come in here and they may have better answers for you. I hope that you get to feeling better and please keep posting.
Welcome! I'm Rob, and I was diagnosed with SLE in 2004. I read over your post a couple times. I hear your frustration. Lupus can be predictable at times, and a baffling mystery other times. Many Dr's and Rheumotologists are not up to speed on the disease. Sometimes they are shockingly ignorant as well.
You mentioned early on that a Rheumotologist diagnosed you with Lupus. Then, you have a Dr. tell you after a blood test that your symptoms are "Not officially Lupus"? Since Lupus has no cure, a person will always have Lupus. It can go into remission, but you still have it. As far as flares, you have fog, and some fatigue, which certainly are two of the most common symptoms people in a Lupus flare get, but the Dr. tells you there are no signs you are in a flare. Then a "positive" blood test that's not enough to make it Lupus? Hmmm.
I see why you are confused and frustrated. I'm not a Dr., so this is simply the opinion of a person who has Lupus with active flares. You have been diagnosed with Lupus. You are having some very recognizable symptoms of being in the midst of a flare. You need a consistent course of treatment in order to manage these flares, minimize any damage from the disease, and allow you to be as functional as possible during these flares. Your Dr./Rheumo seems to have you going in ten different directions at once. Have you ever considered getting a new Rheumotologist? Perhaps one with more experience dealing with Lupus patients, and more capable of listening to their patients? I know it can be a royal pain to find a new one, and good Rheumo's are few and far between. But the right Rheumo can make all the difference in the world.
As far as the symptoms of heart flutter/palpitations go, that is way outside my area of experience as I've never had anything like that happen. My only suggestion on this would be DO NOT ignore it. Make sure your Dr. is aware of this ASAP if they are not already.
Lupus, as you said, can really take the edge off life. Sometimes, flares will be hard to endure. The drugs, like the excellent drug Plaquenil which you were prescribed, can help a person manage their symptoms, but they cannot cure the disease. As far as the big question goes, does this disease scare anyone? I'd say hell yes, it certainly does. No need to feel any shame on that one Larz. But, there are a bunch of people, myself included, who manage the disease, and thrive with fullfilling lives despite it. It's not always nice, and I have some truly bad days dealing with flares, but I also have many, many good days.
My philosophy is, Lupus does indeed take away from my life, but it doesn't take everything. And the parts it doesn't take are well worth living for. Lupus has affected my personal life in a big way. An ended relationship, losing my business, and having to go on full disability being the most drastic changes. I had to change my lifestyle to avoid things that will trigger a flare. Stress is a big flare generator for me, and being out in the sun is another sure fire way for me to trigger a flare. I wish I had more ideas for you other than simply seeking out a new Rheumo with a second opinion, but that's the best I can think of. Other members should be along at some point with some other ideas to work with.
Anyway, I hope you can find the answers you need. We have a great group of people here who have a vast base of knowledge from living with Lupus for many years, and they are always eager to help. We are a pretty informal group as well, so make yourself at home, and don't hesitate to jump into the converstaion whenever you want. Once again, welcome!
10-17-2008, 07:25 AM
I know I jumped around a lot. My story starts reading like a book, and I guess I've learned to minimize what is going on with people, because they don't understand anyway.
I like my current Rheumatologist. She's understanding and seemingly patient. She helped me three years ago, when no-one was helping me. She got me off of Prednisone, got me on Planquenil and at the time, got me on Imuran. The Imuran, I think, worked wonders for me, but through a misunderstanding with her, I didn't get my blood work checked often enough and my counts fell low and I became anemic. She took me off, the counts returned to normal and low and behold, I was in a remission. Gave me two 1/2 great years and hope that I won't have to feel crappy again.
What has happened is that earlier this year, I started getting some of the signs that are so familiar to me from pre-remission days. Nothing terrible mind you, but they take the edge off. It's like having the flu all the time. Achy, tired (not exausted), little bit of the night sweats, swelling under my eyes, notice hair loss when I comb my hair, little sores/pimples on my scalp, lightheaded episodes, blood pressure up, numb toes. But when I go in and she runs the blood, there is a DNA test that is like 26 and this time my sed-rate was in the 50's (although I've had a bad cold for the past 4 weeks...). Otherwise, nothing else. In fairness to her, the symptoms can mimic many things. I tend to believe that as a whole, they are vey familiar to my flares. However, nothing is laying me up or threatening my life. So, she doesn't want to give me Imuran unless she's certain. I'm fighting to get back to that awesome feeling I had when in remission. But she does look at me like I'm nuts when I sit and list my symptoms, and then the inevitable question....are you under stress? Implying that my symptoms are stress related. I try to tell her that the only stress I have is from feeling the way I do and it stopping me from being able to get things done.
As far as the heart flutters/palpitations, yes, all the docs know. Because of the extensive tests I had in April, they are not too concerned and tend to think it's from the Prednisone. I have to get off and give it a few weeks to know for sure. Also, I'm curious if anyone else notices that they feel "better" on days just before coming down with a cold/flu. Again, my doctor thought I was nuts saying that, but it's definitely an experience I feel. Like this cold, I remember the Sunday before it hit, I was thinking, "I feel good today"! Two days later, bam... Also, when I was on the antibiotics during this cold, I got to feeling great too! Something I experienced before in a flare. They don't want you to be on them all the time, but you tend to be pulled toward that which makes you feel better.
Again, thanks so much for listening to me. I fight to keep my belief in myself during these times. I'm cool if my experiences are not like others, it would make me take pause. But all feedback is welcomed.
I understand a bit more now. I have not had very many good experiences with Rheumotologists over the years, so I tend to gravitate towards the Rheumo being part of the problem. But you are comfortable with your rheumo and trust her, so no need for a change.
Since my diagnosis, I've never even been close to remission, so my point of view is that of a person who has a constant flare that lets up a bit, and then every 3 days or so it comes down like a hammer. So I basically feel tolerable on good days, bad to worse on bad days, but never completely well. Actually, I can't really remember what feeling well is like anymore.
Lupus manifests itself in so many different ways that no two people will be the same when it comes to symptoms and flares. Since my diagnosis, I don't come down with colds, or the Flu nearly as much as I used to. But when I do, it is far more severe than I remember it being in my pre-lupus days. I've never recieved a solid answer as to why this is. Anyway, hang out and see what some of our other members thoughts on this are. Hopefully someone can shine a little light on the answers you need.
10-17-2008, 09:57 AM
Thats the reaction I get everytime I mention some new symptom to my doctors. I call it the "Havent you heard, YOU'VE GOT LUPUS, look." Its like before the lupus diagnosis when they look at you like you are crazy or making something up. I thought that being diagnosed would bring more understanding, but it has only lessened the offer for antidepressants. From my experience the other day at the rheumy, they consider your lupus stable if your bloodwork looks similar to your past bloodwork, guessing because its not getting worse. I, like ROb, seem to be in a never-ending flare, I might feel better than the day before but its not gonna last. I am starting to realize that no matter what new problem I develop it would just fall under lupus symptom and we all know there is no cure, so basically my doctors are like well deal with it and come back if it gets worse. I hope that you get back to that period where you felt great and stay on top of that fluttering it sounds like something you may need to get checked out again. Good luck to you
10-17-2008, 01:24 PM
Larz, it's so strange that you would mention feeling better before you get a cold. I have a terrible cold right now. Prior to getting this cold, I've been having terrible joint pain, fatigue, a general 'malaise' or un-well feeling. Since the cold symptoms started, my joint pain is so much better. 'Course, I feel like crud in a variety of other ways due to the cold. :roll: I fully expect the joint pain to be kicking my butt again shortly! :lol:
Where are you in Minnesota?
10-17-2008, 01:30 PM
I am in the NW suburbs of the Twin Cities! Where are you from?
10-18-2008, 09:34 AM
Generally, heart palpitations occur when prednisone is stopped abruptly or when the weaning is too fast. How did your doctors wean you off of the prednisone?
Have you had your thyroid checked? Often, dysfunction of the thyroid can cause heart palpitations and thyroid problems are, unfortunately, common with Lupus patients.
Below are the side effects of Prednisone. Your doctor should be made aware of any of the following side effects that are severe and/or do not go away:
increased hair growth
irregular or absent menstrual periods
If you experience any of the following symptoms, regardless of severity or length of time, call your doctor immediately:
swollen face, lower legs, or ankles
cold or infection that lasts a long time
black or tarry stool.
Also, many Lupus patients suffer from a condition known as Pericarditis. Since Lupus is a disease that causes inflammation in various parts of the body and the organs, Pericarditis is inflammation of the sac surrounding the heart. Also, there is a condition that we often suffer from known as Myocarditis: inflammation of the tissue of the heart. In fact, here is a list of the ways that Lupus affects the heart:
* Pericarditis: inflammation of the lining of the heart
* Myocarditis: inflammation of the tissue of the heart
* Coronary vasculitis: inflammation of blood vessels in the heart
As you can see, there can be many reasons for the symptoms that you are feeling. It might be advisable for you to discuss these possibilities with your rheumatologist so that a more thorough examination can be done to determine the exact cause of your palpitations and appropriate treatment can be started.
I wish you the very best, please keep us posted on how you are and what you find out.
Peace and Blessings
10-18-2008, 10:03 AM
Larz, I'm a bit further north than you - north of Duluth, actually. Glad you found this place, Larz. I think you'll get lots of good info.
How are you doing today?