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Old 12-07-2008, 07:37 PM   #1
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Questions regarding Lupus Flare Ups

Hi, my name is Tricia and I am new here and I was recently diagnosed with lupus. Although my pain comes and goes, I always seem to have some joint stiffness and some of my joint inflammation never goes away.

However, this past weekend, I have had one of the worst flare-ups I've ever been through. My entire body hurts and burns, but my joints are on fire. I am also sooo fatigued and all I can do right now is sleep. Unfortunately, I woke up Friday morning with brain fog and dizzy and I knew a flare-up was coming, but I am a substitute teacher and I went ahead and fulfilled my job that day. By the time I got home, I was in all kinds of pain and so tired that I fell asleep at 2:30 in the afternoon and slept until 8:00 a.m. the next day. I have slept for hours during the rest of the weekend and still at night.

I want to know what (if anything) I can do to help this flare-up go away. I have a call in to my doctor but I don't expect to hear anything until tomorrow afternoon (Monday). I have sores in my mouth besides all the other symptoms. I read somewhere that exercise is the best way to combat a flare-up, but I went for a walk and it hurt so bad I wanted to cry the entire time. Does anybody out there have any advice on how to lessen the duration of a flare-up or how to at least keep from going crazy during one?

I'd appreciate any advice/help that anyone can give me.

Thanks,
Tricia

 
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Old 12-08-2008, 01:28 PM   #2
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Re: Questions regarding Lupus Flare Ups

Triciah, hi. What med(s) were prescribed when you were Dx'ed? Sometimes doctors can & will increase your dosage, in response to a bad flare. Same goes with over-the-counter anti-inflammatories (NSAID's)---if they aren't contraindicated for you, of course.

I don't try to exercise myself out of a flare. I do the opposite: kick back until the big pain recedes. But I DO exercise regularly, when not flaring, as I think it helps me a lot.

Are you photosensitive? I am, so sun avoidance is a necessity for me.

I find when people around me are sick (flu, cold & the like), I can become quite fatigued & have big pain, even though I typically don't get the cold or bug that's going around. I just do my own thing (pain, fatigue, etc.) Maybe because our immune systems are responding, but in our lupus-y (aberrant) way?

Did your doctor get back to you with advice? I hope so---& I hope you feel better soon. Best wishes, Vee

 
Old 12-08-2008, 02:55 PM   #3
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Re: Questions regarding Lupus Flare Ups

Vee,

My doctor's office hasn't gotten back with me yet and I just called them again. This time I got a person and they are talking to the doctor and will get back with me.

Since I seem to be in the developing stages of lupus (which has been confirmed with an extremely high ds-DNA), he only wants to treat me with Meloxicam (similar to celebrex but more stomach friendly). This is the second medication he has put me on because the first one didn't help at all. I saw my doctor last Tuesday and all was well so he delayed putting me on plaquenil (which is his next step). To be honest, I don't want to go on it because I know people who have had really bad side effects from that (including going blind).

This is the worst flare-up I've ever had. It's 4 days and still going strong. My joints ache so bad and they feel like they're on fire!! Besides that, I have a massive headache, sores in my mouth and all I can do is sleep.

I think I'm going to have to quit substitute teaching. I did have a sore throat earlier in the week because one kid in a class that I was teaching was just back from being sick and he had a sore throat. I agree with you that our bodies act in their own lupus way. I think I was starting to catch what the kids have and it triggered a flare-up. I cancelled all my jobs until after the new year. To be honest, I was supposed to start a long-term job for a teacher going on maternity leave and I think I'm going to cancel that too.

Thanks for your response. I'm waiting to hear what my doctor says. I just am so desperate, I wondered if there was a way to help speed up the duration of a flare-up. I will take your advice and just wait to exercise when my flare-up is over. I also exercise between flare-ups but I can't imagine doing anything right now.

Tricia

 
Old 12-08-2008, 05:07 PM   #4
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Re: Questions regarding Lupus Flare Ups

Triciah, hi again. Based on what I've read, meaning hardcovers by such noted rheumatologists as Dr. Daniel Wallace and Dr. Robert Lahita, I honestly wonder whether an anti-inflammatory (like the one you mentioned that's similar to Celebrex) can suppress the production of autoantibodies. My understanding is that suppression of these unwanted & dangerous autoantibodies is the # one goal, in order to lessen your odds of damage, especially to major organs like kidneys, CNS, heart, lungs, etc.

But (obviously!) I'M ONLY A PATIENT... But, truly, if I were you, I'd ask the doctor if this drug can achieve anything more than some "surface relief", to the degree it suppresses your inflammation.

Do you know WHICH auto-antibody to DNA you've tested so high for? There's one to DOUBLE-STRANDED DNA (anti-ds-DNA), which I thinl is considered VERY specific to SLE. I don't think it's seen in any other condition, other than SLE.

But there's another antibody to DNA, called anti-SINGLE-STRANDED DNA (anti-ss-DNA). I think this one is seen in *Drug-Induced Lupus* (DILE). I don't know if it's seen in any other condition.

Therefore, you ought to ask *which* you tested so high for: was it anti-ds-DNA, or anti-ss-DNA? And you could also ask for copies of your bloodwork & other tests. Why? Because it's always good to keep a personal file, especially when you're still working on getting answers & things under control.

Is your doctor a rheumatologist?

And your doctor had urinalysis done regularly? Urinalysis is done to watch for signs of kidney involvement, which occurs "silently", meaning people don't say, "Gee, my kidneys hurt."

Re: Plaquenil, I was told by my big-city teaching hospital-affiliated specialists (rheumatologist & dermatopathologist) that eye toxicity is very rare, and is almost always *reversible* if the drug is discontinued. Dr. Wallace writes at length on this in his hardcover. People on Plaquenil are typically required to have field vision tests twice yearly.

The older-generation antimalarials prior to Plaquenil were NOT nearly so safe; permanent eye problems were indeed a real concern with them. And steroids are well-known for their many unpredictable side effects, including eye damage such as glaucoma.

I hope you get help soon from your doctor. Also, more concise info on your tests & your meds! Also, that you visit your library & look for the Wallace and the Lahita books. Post more when you can, OK? Sending best wishes, Vee

P.S. Plaquenil has subdued &/or eradicated most of my longstanding problems, e.g., urinary, GI misery that lasted over 20 awful years, horrible headaches, rashes, B-12 & Folate deficiency, neuro-like tingling, weight & hair loss, etc. I still have pain (but less intense) & get tired (but less often & dramatically). All things considered, it's improved my life a LOT---and I could say the same for my "big-city" rheumie, too. In contrast, my local suburban drs. were NOT so good. Most had NO CLUE what they were looking at, never performed the right tests, etc. Finding a capable rheumie is the first hurdle for many of us, I suspect!

 
Old 12-08-2008, 09:04 PM   #5
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Re: Questions regarding Lupus Flare Ups

Hi again Vee,

My doctor is a rheumatologist and from my research, he's one of the best here in Vegas. I tested high for the anti-ds-DNA and yes my doctor said that the only thing that causes that antibody to become elevated is lupus--nothing else. I also tested positive and not so high for the anti-ss-DNA, but not nearly as elevated as the double stranded.

I have had a urinary test done lately and it does not show protein yet and according to my doctor, some very lucky people with lupus never have their organs affected. Maybe I will be one of those lucky ones or maybe my lupus will eventually progress to that--he's not sure. At this point, my rheumie just wanted to treat my symptoms since none of my flare-ups had been that bad (until now).

Whatever triggered this one sure, my pain was bad but not debilitating and it never lasted this long before. I am going on 5 days now with no relief. My doctor's office called and he wants me to go in so he can change my meds. I'm sure he's going to put me on plaquenil and probably prednisone or a steroid to help get me through this flare-up. Can I ask you, do your flare-ups just go away overnight or do they slowly fade away? I've had some days where I wake up fine and have small flare-ups in the afternoon and vice versa. I have had some flare-ups last for 2 or 3 days, but by the third day it was getting better. I just keep hoping that tomorrow I'll wake up and feel better. Thank you so much for your response. I just need someone to talk to so I can try and keep my sanity. After being soooo fatigued and in this much pain for so long, I'm beggining to feel like I'm going crazy.

Sincerely,
Tricia

 
Old 12-09-2008, 03:42 AM   #6
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Re: Questions regarding Lupus Flare Ups

Good morning, Triciah. I'm glad your rheumie will be seeing you because of the accelerated pain and fatigue, and that he HAS indeed covered the basics with you. (I'd misread your first post---sorry!---by missing that he HAD confirmed it was anti-ds-DNA that was very high.)

Over decades, I had various problems that persisted weeks, sometimes months. Then in my mid-40's, WOW: startling pain, in "new" places, sometimes lasting days at a time. But, just like you wrote, other times I have pain one hour, then little or none the next. It varies so much.

And, like your doctor explained, I was also told (and have read) that it's definitely possible to remain "subacute", meaning major organs remain unaffected. Here's hoping for just that, for you!

FYI, Plaquenil can take 4 (or so) months to reach its full effect, I was told.

I'm glad your rheumie is ramping up, but based on *careful* consideration of your tests & symptoms. It sounds like nuanced thinking, which is just what you want, I'm sure... I'm glad you found us here also. And, FYI, you sound 100% sane to me. Keep us posted, and hang tough! All my best to you, Vee

 
Old 12-11-2008, 03:46 PM   #7
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Re: Questions regarding Lupus Flare Ups

I went to see my rheumie about this last flare-up and I wanted to ask him questions since this was my first BAD flare-up since I've been diagnosed. First of all, he made me wait a couple of days after the weekend was over to see him, then he had absolutely no compassion.

He asked what was going on, I told him, and he said nothing. In fact, when I told him that I had a really bad headache, sores in my mouth, my whole body burning and painful (especially my joints), and shortness of breath--he said nothing!!! I told him how nothing would take my pain away and how I got so desperate that I even took a LORTAB that I had on hand. He chuckled and said nothing.

He asked me, "So how did you look? Did you look different?" What the heck is that question about? I felt like crap and I am sure that I looked that way, but to be honest, I wasn't concerned with my looks!!!! I could barely get up and go to the bathroom, let alone anything else.

I then asked him what I could do the next time I have what he called "an episode". He told me, take these and he prescribed me prednisone and told me to save them for a rainy day. Like I really WANT to take those for no reason. I continually tried to strike up a conversation and get answers--I'm new to this and still learning what triggers flare-ups, what to do during flare-us, etc. I got no response and short one word answers (e.g. yup, nope, not really). I left there wondering why I drove 40 minutes to see him so he could write a prescription for steroids and ignore my questions. He literally saw me for about 2 whole minutes!!! Oh, he did ask me if the Arthrotec was working better for me than the Meloxicam. I told him that I was on Meloxicam and the Arthrotec didn't work for me. He acted surprised! I told him that the Meloxicam worked fine right up until my flare-up. Once again, he said nothing and sent me on my not-so-merry way.

 
Old 12-12-2008, 12:20 PM   #8
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Re: Questions regarding Lupus Flare Ups

Tricia, I'm sorry your appt. was so off-kilter. One way in which I judge doctors (why not, as they judge me with impunity? ) is whether they have your patient file handy when you walk in, then review it briefly before commencing. When a doctor "wings it" is when things go off, I've concluded. They should care enough to double-check who you are & where things last stood.

What dose Prednisone did he give you? Did he mention the possible downsides? I've never heard of a doctor giving someone Prednisone to take, when & if the patient feels the need, due to its unpredictable side effects, the need to sometimes taper off, as opposed to just stopping (that maybe applies only to higher dosages?), etc. Anyway, you could ask others (here & elsewhere) whether they've ever seen this done; and your pharmacist may also have an opinion.

Re: his asking you how you LOOKED---I don't get that either, except that maybe he was wondering if you'd had a butterfly rash? But, if so, gee, why not ask clearly?

Like you, I don't get his approach or style. In your shoes, I'd probably start to scout around for other rheumies. I'm not suggesting that you change doctors---that's for you only to decide---only that you start a "Plan B" in case you need one. Post more when the mood strikes, OK? Sympathetically, Vee

 
Old 12-12-2008, 01:42 PM   #9
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Re: Questions regarding Lupus Flare Ups

Veej,

Thanks for your support. I immediately started investigating other doctors in the Vegas area, but there aren't very many and I can't find all the credentials on most of them. My doctor seems to have the most experience (graduated earlier than the rest), and he IS board certified in rheumatology.

I was going to go for a second opinion when I first was diagnosed, but the doctor I was referred to was more worried about their money than the patient. When I got the new patient packet, the first 7 or 8 pages were about what they would charge if you did this and what they would charge if you didn't do that, what fees they would tack on for this or that. It was crazy and I refused to give somebody my business when they are obviously more worried about collecting their money than anything else. This same doctor's office also wouldn't let me make an appointment until they got all my files from my other doctors. Even when they did get the information, they wouldn't let me make an appointment. They told me that "they would call me because they were too busy to make me an appointment at that time."

Oh, another thing. I also told my doctor about my joint pain and especially my shoulders that were hurting. I explained the pain to him (and the burning) and told him that I couldn't raise my hands above my waist without being in excruciating pain. He told me, "that's not lupus, that's bursitis." Then, I got "The Lupus Book" by Dr. Daniel J. Wallace (that VeeJ suggested I get), and under the "Joints and Soft Tissues" section, there it is, "Shoulder inflammation is not uncommon...and often, when arms are raised over the head, it feels the same way as bursitis pain does."

This leaves me wondering if HE really knows ALL the symptoms of lupus himself. I found one review on him on one of the "pay for information" sites and they said that they went to him for fibromyalgia and he basically did to this person what he did to me at my last visit. He was of no help and offered no suggestions, advice, or anything. I wish I knew a good doctor to go to. Sorry this is so long. Thanks for letting me vent. I'll keep in touch.

Tricia

Last edited by Triciah614; 12-12-2008 at 01:45 PM.

 
Old 01-07-2009, 08:16 PM   #10
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Re: Questions regarding Lupus Flare Ups

Hi Tricia,
I'm new here & don't know if older posts should still be replied to, but I saw yours & felt compelled to sign up just to respond (issues with bad docs too!).

I was diagnosed over 15 years ago and live in a much smaller town than Vegas. I've had to change docs often in the last 15 years, mostly due to insurance. Several were as dismissive as yours & made me feel just as you explained.

PLEASE keep searching until you find a rheumatologist who will treat you as a person!! There IS someone out there who will take you serious & listen to you. I've finally found a young female doc who is so thorough that even the nurses and phlebotomists praise her. I feel very lucky!

My advice is not to lean to the older docs with "more experience" but to the newer docs whose education & enthusiasm for their careers are still fresh.

Hope you are well,
owl

 
Old 01-08-2009, 04:18 AM   #11
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Re: Questions regarding Lupus Flare Ups

OWL: Just want to say "Welcome!"

TRICIA: How are you doing?

Best wishes to you both, Vee

 
Old 01-08-2009, 08:00 AM   #12
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Re: Questions regarding Lupus Flare Ups

Owl,

Thank you so much for your response. You have given me hope and a direction and I appreciate it so much.

I will begin my search now for a newer "fresher" doctor. It's so hard to get in as a new patient, especially here in Vegas. There are too few doctors and the city grew so fast that ALL doctors are booked 3 months or more whether they are good or not.

VeeJ, I am doing okay. I hurt most days, but I feel fortunate because the lupus hasn't attacked my organs--just my joints and skin. I just want to know more about the disease and I hate when you can't get answers from your doctor. I have read Dr. Wallace's book and it seems that my rheumatologist is doing everything OPPOSITE of what Dr. Wallace recommends. In patients with developing symptoms (like me), Dr. Wallace puts them on plaquenil (not steroids) for two years and MOST of those people go into remission. That gives me hope, but I have to find a doctor who won't take offense to a patient telling them what they've read in a book. After all, THEY are the doctors.......

 
Old 01-08-2009, 09:11 PM   #13
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Re: Questions regarding Lupus Flare Ups

Thank you for the welcome, VeeJ!

 
Old 01-08-2009, 09:28 PM   #14
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Re: Questions regarding Lupus Flare Ups

Hi Triciah!
I'm so glad I helped give you a little hope. There's nothing much worse than a dismissive doc when you're needing help & answers. I swear one of my first rheumys wasn't even human...called him "RoboDoc". Only funny if it's not your doctor of course.

Best of luck to you in your search for a new doc. I know it's discouraging when the wait time is so long, but it'll be worth it when you find a good one. This may sound like shallow advice, but when I was searching I checked out all the available docs' pics on their hospital web pages. Of course you can't judge a person by how they look, but I think you can recognize a kind face. Maybe I just got lucky. One other thought, you might try looking for rheumys who specifically list SLE as part of their credentials/special interests

As to the meds, I've been on Plaquenil almost since I was diagnosed and it has helped very much over all. I've only been on steroids a few times when my blood work went really wacky. Never be afraid to ask your doc why they're making the decisions they are. You gotta look after yourself!!

Be well & stay strong!
owl

 
Old 01-09-2009, 08:10 AM   #15
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Re: Questions regarding Lupus Flare Ups

Nightowl,

I researched doctors all day yesterday since I read your post. I found one doctor who had GREAT credentials and is affiliated with some world renowned hospitals in the country. She was also a female doctor (shooting for the compassionate doctor) and she was a provider with my insurance. I thought I hit the jackpot until I called her office and she is a pediatric rheumie She won't see patients 18 or older.

That leaves me with a lot of the same doctor as I'm already going to. There's another female rheumie here in Vegas, but when I was sent the new patient paperwork, the first 7 or 8 pages were informing you about what they would charge you if you did this or didn't do that. They also started threatening about what they would charge extra if your insurance didn't pay in 30 days, etc., etc., etc. They seemed more concerned with their money than the patients so I cancelled my appointment. That doesn't leave anybody else I feel comfortable going to. There are only 10 rheumatologists in Las Vegas and I've already eliminated 4 of them!!!

I might see if there's a rheumatologist in Phoenix, AZ I can go to. It's only a 5 hour drive from where I live and it would be well worth it if I can get a better doctor. Thanks again and I'm glad that your doctor found the right combination of meds. to help you.

Thanks again,
Tricia

 
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