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Larz77
11-19-2008, 05:49 PM
:cry: Hi, I'm feeling alone right now and want to reach out to fellow lupies. I've read a couple of the other posts, and it helps with what I'm dealing with right now. If you don't mind, let me recap:

Back in June, I started feeling cruddy. I was in a remission that lasted a couple of WONDERFUL years. My Rheumy must have felt comfortable enough with what I was telling her that she put me on a 20mg decreasing dose of Prednisone. Essentially, if it was going to help me, we'd know right away, if not, we wean off. Well, I took it and was WIRED the next few days and on the fourth day I started getting these heart palps. Also during this time, I was told that I was low on Vitamin D and she gave me these mega supplements. Figuring the Vitamin D was the culprit for the palps (I have been on prednisone before and never had them) I decided I just wanted off both medicines. I hate when the side effects make you feel worse than the reason you took the meds in the first place. They almost feel like you trade one set of problems for another. Side note here: At the appointment we tried the prednisone, she left open the possibility that we could try the Imuran again possibly, that is the drug that got me into the remission I'm in.

So, I weaned off, started getting the joint pain and muscle aches. She put me back on, but at a lower dose, 10mg and we again made a slower weaning period off of them. In August I came down with some sort of stomach flu, followed a few weeks later by a cold that I swear lasted 7 weeks (until now). Sinus drainage, bad cough. Went into my regular GP for the cold and eventually my ENT for the sinus stuff. During this time I had three doses of Zithromax. Funny, I always seem to feel better when I take the Zithromax, athough I admit, it didn't clear the cold up completely. The ENT prescribed Levaquin, but that drug from memory, bothered me but I couldn't remember why.

Of course, I'm feeling lousy during this whole time. You wonder about the palps (or more of a skipped beat periodically) and I know you'll say you should get it looked at. The docs seem to think it's the Prednisone affects, based on how it started. So, getting me off of Prednisone has become the first task. If they persist, then the plan is to do the Holter monitor. I think they are feeling pretty relaxed because 6 months ago, I ended up in the hospital for mild chest discomfort and a difficult time breathing, only to have a bunch of tests, including a CAT Angiogram and everything looked good. So, I think because of this extended exam not too long ago (the palps started about 2 months after that remember) I think they have some confidence this isn't major...

So, last week, in a call to my Rheumy who is seemingly getting tired of hearing from me, called me back after like a week after I sent her a message and then left another message for her. Hearing that I still had the cold, she suggested I take the Levaquin. She was nice enough. Well, let me tell you, I think Levaquin is a drug from hell. Insomnia, muscle cramps, increased my palps, fatigue...if there was some doubt that I psychologically felt antibiotics helped me, this experience would correct that. So, right or wrong, i followed up with my Rheumy to tell her that although the "sinus" stuff seemed better, the drug is hitting me hard and my palps seemed worse. Her response? I stern, "there is nothing more I can do for you. See Cardiology". Immense saddness at this point for me.

In my heart, I believe I've been in a flare. Supported by some of the symptoms that I'm so familiar with from years of feeling awful. From little things like hair falling out, puffiness under my eyes, to joint and muscle achiness, fatigue, feeling under anxiety and having colds that won't clear up. But, like in the past, my blood tests, save for maybe my sed rate, are all normal. Generally stay that way until my kidneys suddenly up and start failing.

So, I'm feeling down and alone. My wife doesn't know what to make of all of this, I feel I try her patience as well. In this economy, it's hard to not perform well on the job. I think my doctors think I'm a nut job or a hypercondriac....heck, I feel like one myself. I guess I have been the boy who called wolf though I have to admit...After acheiving soemthing that I didn't think was possible, to feel like my old self, any little thing that popped up would send my scurrying to the doctor. I guess I was afraid that if I didn't nip a relapse in the bud, I'd go back to months of feeling like crap and having doctors think I was a looney. Of course, Lupus feels like any other illness, from a cold to the flu, so that didn't help. Obviously, I prevented nothing.

So, feeling down, alone and if I'm honest, a little scared. Any words of understanding or empathy is appreciated. Certainly I'm thankful that you let me share this.

L

SandraC1983
11-19-2008, 06:01 PM
I FEEL FOR YOU I KNOW HOW YOU FEEL . BUT YOU ARE NOT ALONE IM HERE AND THERE ARE OTHERS HERE FOR YOU TOO ............ I AM REFUSING TO SEE MY RHEUMY........ I HAVE BEEN REALLY ILL THESE PAST COUPLE OF MONTHS AND LAST WEEK I WENT TO SEE HIM HE TOOK ME OFF ALL MY MEDS AND TODAY MY FLARE STARTED ......... I CAN'T EAT I CAN'T SLEEP I CAN'T EVEN HOLD A FORK...TO FEED MYSELF. SO I MADE AN APPOINTMENT WITH MY PCP AND IM GOING FROM THERE.... BUT PLEASE DON'T FEEL ALONE IF YOU NEED ANYTHING DO NOT HESITATE TO MESSAGE ME OR ANYTHING OK

GOD BLESS
SANDRA

Larz77
11-19-2008, 06:06 PM
Sandra,

Thanks so much. Brought tears to my eyes reading your response. What I need....I need a Rheumy that has Lupus, maybe then they'd understand.

KathyW1958
11-19-2008, 06:10 PM
Hi L,
Welcome to the site. My name is Kathy and I have SLE, Lupus. What I am wondering sir is why the doctor has not put you on Plaquenil. Why won't they wean you off of the Prednisone and put you on Imuran since that has helped you in the past. I think you need to see a different Rheumatologist if that is possible, because this one does not seem to want to help you and that is sad. I seriously understand how you feel. For years I got the royal run around and basically told that I was stressing and worrying needlessly and I was also made to feel like a hypochondriac. I almost died by the time I got a good Rheumatologist that listened to me and diagnosed me and got me out of that very very severe flare that affected the heart muscle. I have to wonder with the heart palpatations if the Lupus is attacking your heart muscle. I seriously think that you need to get in to see a different Rheumatologist as soon as possible. Get all of your medical records from this one that you have been seeing and take them with you.

There are some men that come in here that also have Lupus. Rob is one of the moderators in here and he has Lupus and MS. I sure that he will respond to your post too.

I seriously hope and pray that you can get the help you need and believe me nobody here will ever believe that you are a hypochondriac. Please keep posting.

Hugs,
Kathy

SandraC1983
11-19-2008, 06:11 PM
MAYBE THAT'S WHAT WE ALL NEED. SOME DRS NO LONGER CARE ABOUT HELPING THE PATIENT THEY CARE ABOUT THE PAY CHECK. I WORKED FOR DRS BEFORE AND I KNOW SOMETIMES WHY THE DOC NEVER CALLS BACK OR THE EXCUSE OF WE ARE BOOKED UNTIL SUCH DATE......... BUT ANYWAY IM HERE FOR YOU BUDDY ................... :D :wink: IM FROM NEW MEXICO AND IM 25 HOW ABOUT YOU OH AND I HAVE TWO CHILDREN. KEEP YOUR HEAD UP WE ALL FEEL THIS WAY FROM TIME TO TIME ...... GOD ONLY KNOWS WHY WE ARE GOING THROUGH THIS....

sits_inthe_corner
11-19-2008, 06:45 PM
Hi Larz77

Welcome to the site, glad you found us. I have a rheumy who thinks that lupus is just something doctor's diagnose when they don't know what's wrong with you...in other words, she thinks it's a myth.

I'm stuck with here untill another rheumy has an opening for me. I'm not fully diagnosed yet. My sister has lupus and my mother had it as well.

I've had symptoms since I was 19 yrs old and a positive and a boarderline ANA test, lots of rashes, mouth sores, tiredness, arthritis, on and on and on.

My rheumy is not interested in what's going on with me. But I still make my lists of problems I'm having and of questions and I make her listen and I insist on answers to my questions.

It's very wearing to have to pull hen's teeth every time I go to see her. I feel your frustration. But don't give up.

Ask your pharmasist if it's okay for you to take Cold FX with the other medications you are on.

It's gentle and doesn't cause any upset. It boosts your immune system to help you fight colds. It really does work...good thing to cause it's not cheap and it's the only thing I'm allowed to take because of the medications I'm on.

Also ... if you haven't already...you should talk to your doctor about getting a flue shot.

Hope you are feeling better soon...keep us posted on how things go with your doctor.

Larz77
11-19-2008, 06:51 PM
First, my doctor has put me on plaquenil. But she things, that because I'm on plaquenil, I shouldn't be having any flares. My impression is that she expects the plaquenil to keep me in remission. I don't know...doesn't seem like that is the end all. As far as why she doesn't take me off the prednisone and put me on the Imuran, it's because she has nothing to hand her hat on that I am, in fact, in a flare. The blood tests are not conclusive, my exam didn't show any swollen or immovable joints and apparently, what I'm feeling could account for many things besides Lupus. Sigh.

I'm from Minnesota, I'm 45 and have two kids. I appreciate all the words of encouragement. I'm glad I found this site...the Lupus foundation of America, nobody ever responds.....But my doctors told me not to go on-line, because here you "only find the sickest of the sick and you shouldn't compare yourself to them.

As far as the heart being affected...it's seriously crossed my mind. They ask me if I'm short of breath or dizzy and when I say no, it's dismissed. That and the prednisone didn't help but may have brought this on. So, I don't know. I don't know how they would tell it was affecting the heart. Hopefully the holter monitor would help...

Larry

rob
11-19-2008, 08:01 PM
Hello Larry,

I'm Rob. I'm 40 and was diagnosed with SLE five years ago, and then with overlapping MS about six months ago. I wouldn't beat yourself up over maybe over-reacting to symptoms you had during your remission. I've never been even close to being in remission, but if it ever does happen for me, I'll be safeguarding that like it was a safe full of gold. If that means being extra vigilant in watching for any possible signs of relapse that show up, so be it. Your health is just that, yours. It's not the doctors, or anyone else's for that matter, and you have every right to safeguard your health any way you see fit.

I understand the anxiety about work performance. For me, that's now history as I've been on full disabilty since the initial SLE diagnosis. I worked as a contractor for the Dept of Defense in the field of smallarms design. It was my dream job, but all my cognitive problems made me a menace around the machinery in the shop, as well as at the test range. Not good. Had to sell the business, but luckily a few of my employees pooled resources and bought it, and are still running it today. Fiancee left me after the diagnosis, so I don't have to deal with that aspect of living with Lupus anymore.

I had to laugh at your Doctor's thoughts on the online lupus community. The sickest of the sick, wow! I'd love to give your Dr. a piece of my mind, or at least the one finger salute! :lol: I'm sorry, that's just too funny. It sounds more like they don't want you to learn more about the disease because they are supposed to be the one with all the knowledge, and If you did some research for yourself, you might come to the conclusion that they are misinformed and incompetent when it comes to caring for a patient with Lupus. I've had some bad experiences with a couple of Dr/Rheumo's, so you'll have to forgive me as I'm a bit jaded on the subject, and I tend to rant.

Seeking out others to talk to who understand what this disease is like, is a very good thing. For whatever reason, it helps us to cope. And learning more about the disease itself makes for a patient who can be their own advocate, and facts can also lessen many of our fears of the unknown. All good things as far as I'm concerned. Have you considered getting a second opinion? I know it's a huge hassle, but sometimes it's the best way to find the answers, and then the treatment that you need.

Anyway, I do understand what you are going through, and you are certainly not alone. It's always good to talk about things from a man's point of view. There aren't many of us out there. Go easy on yourself, and don't beat yourself up over things. Let us know how this goes for you, and don't hesitate if you need to talk, vent, or just hang out here. Well, it's time for an Ambien and an attempt at a few hours sleep. Have a good night, and I'll talk to you later.

Rob

KathyW1958
11-19-2008, 08:13 PM
Hi Larry,
I have a hard time understand why your doctor feels that you can not have a flare while on Plaquenil. I still have flares and I have been on Plaquenil for about 15 years. The Plaquenil aids in that fact that it keeps the lupus from damaging your organs and keeps the flares at a minimal. She should also know that a flare does not always show up in the blood.

I think that it is terrible that your doctor told you not to go on the internet to talk with others that have Lupus. I hate to say it, but I think she is afraid that other people with Lupus may know more then her of how this disease acts in people. I mean shoot we have to live with it. I am so very glad that you did not listen to her and you came to join us. We very much understand what you are going through big time.

I think that the Prednisone could definitely be causing the heart palpatations that you are talking about. I just looked on a website about this and read about it. I will put the web address in here and you can read it ok. The web address is: http://www.medicinenet.com/prednisone-oral/article.htm. This site lists the side affects.

The way that they found out that the Lupus was affecting my heart muscle was that I was having Preventricular contractions of the ventricles of the heart and my CPK and ESR were real high. They also did an echo gram and I can't really remember every thing they did as it was about 15 years ago.

I hope that this information helps you and you can print out the side affects list and show it to the doctor.

Hugs,
Kathy

Larz77
11-20-2008, 12:39 AM
Rob, it is great to hear from a man. I definitely will keep in touch. I'm 44, so we are close to the same age. I live in fear of losing my job, especially in this economy. I feel that if I do, my family could lose everything. I mean seriously, who would hire me when I'm like this? Having so many years on the job, I'm able to step out and take a nap at lunch which gets me through. I wouldn't be able to do it without that when I'm in a flare. Doesn't help to think about losing everything...

Kathy, my queston for you is this. If it doesn't show up in the blood, is one's symptoms alone justification to take a drug like Imuran? I feel it is, the doctor feels it isn't. I know what I'm feeling, even though they get me to double guess myself all the time. The first time I chased my tail because I didn't know and was desperate. They suggested I should loose weight, be more active, see psychiatry. I would have licked the sidewalk everyday to feel better.

To all, have any of you tried this Levaquin antibiotic? I'm highly allergic to Sulfa (maybe because of my lupus), so I don't think this is that. But it's raising hell with me.

You are all terrific. Thanks for your time.

Larry

Larz77
11-20-2008, 12:43 AM
I'm currious, is this the best Lupus board? Seems like it is. We are a small group of the overall population, seems like we are spread over a few places. Like I mentioned earlier, the Lupus Foundation, they hardly respond...maybe someone will at one point, but not like here. I wrote the "Feeling alone" piece there...if I didn't come here, I'd really feel alone....no-one took the time.

I'm curious if they have a chat function? That might be nice to have a meeting sometime live!

SandraC1983
11-20-2008, 12:50 AM
i agree Larry that would be a great idea. a Chat room in here my goodness i would be on all day long ....... Can't sleep?? As far as the other lupus place............................. i sent a message in Feb i still haven't gotten a response

Larz77
11-20-2008, 12:58 AM
Ha, ha, you noticed the time...I've had trouble sleeping all week...I think it's the antibiotic though, Levaquin. Or the coming off Prednisone...I came off really slowly, but took the last, last week. I wonder how long it takes to leave your system....On top of it, I was sleeping (with my ever present night sweats) and the dog was throwing up and woke me. Nice mess..it's frustrating to be woken up when you finally get to sleep!!

SandraC1983
11-20-2008, 01:02 AM
ewwwwwwwwww grosssssss lol hey here is some more info i found IMURAN and LUPUS maybe it will help



What is Imuran?

Imuran is the trade name for azathioprine, an immunosuppressive medication. It is used to reduce the body's natural immunity in patients. It is very strong drug.

If it works successfully, a patient should be able to reduce or eliminate the need for prednisone in their Lupus treatment plan. However, Imuran poses a long term risk of cancer and that should be taken into consideration as well.

Imuran and Prednisone

Prednisone should not be stopped with the addition of Imuran to the treatment. Prednisone dose should remain the same until there is improvement shown after beginning the Imuran. Then the prednisone should be tapered slowly at one to five milligrams a week to avoid problems.

What is Imuran supposed to do?

If Imuran is working, after about 3 to 12 months the patient should notice a gradual improvement in how he/she feels. This improvement can be measured clinically by the decrease in the number or severity of symptoms, and for the need for less prednisone.

Azathioprine sometimes causes nausea or vomiting. Taking this medicine after meals or at bedtime may lessen stomach upset. Ask your health care professional for other ways to lessen these effects.

If you vomit shortly after taking a dose of azathioprine, check with your doctor. You will be told whether to take the dose again or to wait until the next scheduled dose.

What are some special considerations when taking Imuran?

Imuran may cause some bone marrow suppression and elevation of liver enzymes. Therefore, the doctor will check blood tests regularly to monitor for significant changes.

A patient may have to stay on this medication indefinitely. Imuran is a long-term treatment.

The main clinical improvement occurs during the first year of therapy. Improvement is gradual and it may take several months before a patient begins to notice a change in symptoms.

Dosage varies from 100 mg. to 200 mg. per day. The patient must take the medication exactly as prescribed by the doctor and never increase, decrease, or stop taking this medication without checking with the physician.

Unless the doctor determines that the benefits outweigh the risks, a woman should not take Imuran while pregnant or planning to become pregnant.

What are the possible adverse effects of taking Imuran?

Imuran is generally tolerated very well without serious adverse effects. The patient should check with the doctor immediately if any of the following occur:

Nausea and vomiting
Fever or chills
Loss of appetite
Upset stomach
Skin rash
Diarrhea
Cough or shortness of breath
Cold sores in the mouth or on the lips
Blood in the urine or stool
Unusual bruising
Fatigue
Missed menstrual period
Yellowing of the eyes and skin
Hair loss
Muscle or joint pain
Darkening of the skin and fingernails

rob
11-20-2008, 06:53 AM
I'm currious, is this the best Lupus board? Seems like it is. We are a small group of the overall population, seems like we are spread over a few places. Like I mentioned earlier, the Lupus Foundation, they hardly respond...maybe someone will at one point, but not like here. I wrote the "Feeling alone" piece there...if I didn't come here, I'd really feel alone....no-one took the time.

I'm curious if they have a chat function? That might be nice to have a meeting sometime live!

Well Larry, since I'm a moderator here, I'm not exactly an un-biased opinion. But I would say, yes, this is the best Lupus site! :lol: Seriously, there are a few really good sites, and we definitely are one of them. The reason this place is as good as it is, is because of it's members, and because of Saysusie and Conrad. Conrad is the site Admin/Owner. Saysusie is our fearless leader here, and a big part of her motivation here is the fact that she lost her daughter Lauri, to Lupus. This place is a tribute, and a labor of love in her name. My motivation to help out here comes from my early days of being diagnosed with SLE. I was absolutely alone. I had no support, no friends, and I lost everything I worked so hard for. I would have given anything to be able to talk to just one person with Lupus. If I had a place like this to come to back then, things might have gone very differently for me. But, that's the past, and today is today. I never want to see another person suffer in silence with this disease.

Rob

KathyW1958
11-20-2008, 07:16 AM
Hi Larry,
I think that this is a very good site too. I have found one other site that I like pretty well too. It is at www.butyoudontlooksick.com. They use the spoon theory and it is pretty neat. I go in there sometimes and chat with those folks too. You can check that site out. I am so glad that you found us. Rob is awesome big time and he has lifted my spirits more then once. I am just glad that you found this site.

Hugs,
Kathy

mnjodette
11-25-2008, 05:24 AM
Larz77, welcome to the group - and yes, I'm SURE it's the best site! :wink:

I've been diagnosed with SLE (in 2006) and dianosis confirmed ay the Mayo Clinic. I have a positive ANA, and have an antibody for scleroderma. But, I don't have any of the other 'usual' positives for lupus. You'll find that 5% or so of people with SLE don't even have a positive ANA. An elevated SED rate generally means that your lupus is active, so if that's something to pay attention to.

I've been hoping to get off some medication (I'm on a small dose of prednisone, cellcept and plaquenil for my lupus) but it hasn't gone so well. My rheumy said last visit that most all of their patients with SLE do better if they stay on some medication routine. A true remission - one maintained without any medication - is not common.

You really should think about a second opinion. I see you live in Minnesota (me too) so you have options not too far away. There is a new Lupus Clinic at the Univerisity of Minnesota Fairview and the Mayo Clinic has a really great rheumatology department. I hope you'll think about checking out one of those places, even for just a one-time assessment. It might give you some answers.

Jody