How do you know when a flare is coming???

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misscali
Regular Member


Date Joined Feb 2007
Total Posts : 154
   Posted 4/17/2007 11:54 PM (GMT -7)   
so even after increasing my iron supplements to 3 times daily, my doctor said i am still very anemic....he says that my anemia might be due to the medications i am on rather than an iron difficiency because my hematocrit is about 50% of what it should be and it is not increasing even with the iron supplements. So my doctor said to decrease my cellcept dosage from 1250 mg twice a day to just 1000 mg twice a day. But here is the catch...i am supposed to go to the east coast to visit my friends on thursday for about 2 and a half weeks...my rheumy advised against it but he said he can't stop me from going. He also said if i DO choose to go that i should call him twice a week to let him know how i am feeling and if I think i am about to have a flare i should double my prednisone immediately.

So here is my question: I am so new to this disease and I know it is different for every person, but how exactly will i know if i am about to flare??? I have not had any joint pain ever so I dont think that would be a sign for me, but are there others??

These are the meds i am on right now: prednisone, cellcept, plaquenil, coumadin, baby aspirin, xanax, ferrous gluconate, Micro K, vitamin D, protonix, lisinopril, and celexa

Thank you so much for your help!!

PattyLatty
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Date Joined Mar 2006
Total Posts : 2570
   Posted 4/18/2007 7:59 AM (GMT -7)   
Misscali,

I have felt bad for 2 years, and a flare is when I feel worse than normal. I know when I'm going to have a flare as soon as it comes on but not before. I know I will have a flare if my activity level is higher than usual. So if I know I want to do something on the weekend, for instance, I'll take it real easy for a few days before, and stay at home and rest. After I have much activity I can count on being down for a while.

I don't know if this helps or not, but this is my experience.

Why does your doctor not want you to go on your trip? Is it because he thinks a trip will send you into a flare? Have you ever had a real bad flare? I will do just about anything to prevent a flare because sometimes they can last for months, and then life just stops for me.

It sounds like you have a good and caring rheumy!

Good luck.

Pat
Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision.

cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, cymbalta, tramadol, lunesta, actonel, meridia, tricor, aciphex, multivitamin, calcium w vit D, fish oil, aspirin


hippimom2
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Date Joined Jul 2005
Total Posts : 5403
   Posted 4/18/2007 8:36 AM (GMT -7)   
Misscali, I don't have a lot to add to what Pat has told you. I can't really predict a flare either, but I do know if I have something big planned then I had better plan quite of bit of rest and down time afterward or I will flare for sure. Like Pat said, sometimes a flare can keep you down for months, so you do have to be careful not to stress your body too much. Some possible clues for me that I might flare are in increase in fatigue, pain and developing a fever, but by the time that happens it's usually too late to stop my flare.

If you do decide to go on your trip, my advice would be to make sure you have lots of down time and times worked in to take a rest. Whenever we take trips somewhere we try to make sure we have enough time to do some fun things but to also have a lot of breaks in the day where I can rest.

It sounds like your doc is very concerned about you, so it does sound like it's important to call him right away if you start feeling worse. I'm guessing he wouldn't be concerned if there wasn't a good reason.

Take care and let us know what you decide to do about your trip.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 10mg; Neurontin 300mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops

 

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misscali
Regular Member


Date Joined Feb 2007
Total Posts : 154
   Posted 4/18/2007 10:04 AM (GMT -7)   
thank you so much for your input!! my rheumy doesnt want me to go on my trip because my hematocrit is so low and lowering my cellcelpt dosage could make me feel worse...but it could also make me feel better which is why i am conflicted. I think i will end up going on my trip because its tomorrow!! Since I am visiting my friends in college I will just need to make sure that I get enough rest and obviously no drinking!
i think the last time i had a flare was in october of 2006 and also the first time i had a flare i think. it put was in the hospital for about 9 weeks...but one of the reasons why i was so sick was because i got e-coli WHILE i was in the hospital!! my kidneys stopped functioning and i was on dialysis for a while but i really think it was due to the e-coli because otherwise i dont think my kidneys could have healed so fast...
anyways if you guys have any more suggestions about preventing a flare (since i guess they are impossible to predict) please let me know!!!
thank you for your time!

hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 4/18/2007 11:59 AM (GMT -7)   
I think the most important thing to do is to listen to your body. If it's telling you to slow down or to rest, then listen. I get into big trouble when I ignore my body and push through the pain and fatigue.

I really hope your trip goes well and that you are able to stay healthy.

Take care
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 10mg; Neurontin 300mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

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jhmom
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Date Joined Oct 2004
Total Posts : 2244
   Posted 4/18/2007 3:04 PM (GMT -7)   
Hi Misscali, sometimes my flares gives me a warning, like mouth sores but usually there is no warning the increased fatigue and joint pain just hits me like a ton of bricks. Have a safe trip and have a great time. Be sure to take good care of yourself and like Hippi said, listen to your body and rest when needed!
Stacie

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's 1999, Celiac Disease (gluten sensitivity)2003, Raynaud's 2004, Lupus 2005 and Sjogrens 2006
Meds:Imuran, Plaquenil, Flexeril, Sulindac, Levoxyl, Folic Acid and magic mouthwash (as needed)


misscali
Regular Member


Date Joined Feb 2007
Total Posts : 154
   Posted 4/18/2007 3:45 PM (GMT -7)   
ok i will definately make sure to take care of myself and i will still be in contact while i am there if i have any problems!

also, i have never had mouth sores before but once in a while ill get something like a tiny "bubble" or something in my mouth. if i brush it, it seems goes away immediately though. is that what a mouth sore is??

jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 4/18/2007 5:27 PM (GMT -7)   
unfortunately my mouth sores don't go away so quickly, they like to hang around for 2 weeks or so. You would know if you've had one, they are usually found inside cheek, gums, tongue and roof of mouth. They are white with a red (swollen) area around it. Some can be painless but I think most are painful, depending on where they are located. I hope you don't ever get them!
Stacie

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's 1999, Celiac Disease (gluten sensitivity)2003, Raynaud's 2004, Lupus 2005 and Sjogrens 2006
Meds:Imuran, Plaquenil, Flexeril, Sulindac, Levoxyl, Folic Acid and magic mouthwash (as needed)


sandspoker
Regular Member


Date Joined Apr 2007
Total Posts : 104
   Posted 4/18/2007 6:43 PM (GMT -7)   
Hi Everyone - I just signed up today - its always great to talk to people with a similar condition because no one understands how I feel (except all of you!).  I've been reading your posts - I don't have mouth sores but I do get "sore mouth" - anyone else experience that from time to time?  Here another couple of questions that I am SO curious about - do any of you suffer from boils?  What about fly bites - any type of reaction?  I get quite a reaction to mosquito bites however, I am severely allergic to bee/wasp etc stings so I don't know if this is related to that allergy or the Lupus.  I know this post is off topic but since I have a captive audience... lol
Sue
Ps.   I get tired too redface - I just made a decision last week to slow down at work a bit and to listen to my body too!!!

omega
Veteran Member


Date Joined Jan 2007
Total Posts : 607
   Posted 4/18/2007 7:00 PM (GMT -7)   
Do you mean sore mouth kind of like teeth pain (whole mouth or the funky teeth pain feeling) or do you mean swallon gum? 
I have swallon gum problem and sometimes I have teeth pain problems.  This is due to the medication (prenisdnole)
Mouth sore, as jhmom said, it is part of lupus flare.  I am currently getting it.  It is exactly as jhmom (Stacie) described.  It can take two weeks for the pain to go away, but it can take longer time for it to heal 100%.
a reaction to mosquito bites, bee sting/wax-->this is more like an allergy, not lupus.
 

PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 4/18/2007 8:51 PM (GMT -7)   
Sandspoker, welcome to the forum! I've never had a "sore mouth" so I can't help you with that. I hope you find that you're tiredness subsides a little when you slow down at work. The less I do, the better I feel. It's hard on the social life, but what is a social life when you always feel bad! Sounds like you're on the right path. Tell us more about yourself.

Pat
Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision.

cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, cymbalta, tramadol, lunesta, actonel, meridia, tricor, aciphex, multivitamin, calcium w vit D, fish oil, aspirin


CityGirl
Regular Member


Date Joined Dec 2006
Total Posts : 239
   Posted 4/19/2007 12:16 PM (GMT -7)   
I wish I could articulate this better but I know a flare is coming on when I feel like my body is buzzing all over. I then develop a fever and terrible fatigue and dizziness. Sometimes it lasts a day or two, sometimes longer. This was actually one big clue when I first got tested.... for years I was having flares and not even knowing I had lupus. My hip also hurts much worse during one of these episodes as well as my hands and the tops of my feet. My heart also pounds and my pulse elevates.

dbab
Veteran Member


Date Joined Jan 2004
Total Posts : 4151
   Posted 4/19/2007 12:25 PM (GMT -7)   
The times that I did go into mild flares (I have had a few false alarms), I felt just like I did when I am about to get the flu. Very weak, lightheaded, and drained and now I wonder if its the flu or a flare (neither of them sound better than the other to me).
"Des"
Co-Moderator ~ IBS Forum
Dx: IBS 1989, Diverticulosis 2004, Idiopathic Acute Colitis 2006, UCTD 2007
Meds: Plaquenil 400mg, Chlorzoxazone 500mg, Lyrica 50mg, Protonix 40mg, Naproxen 1000mg, Xanax XR 2mg, Miralax 17g, Supplements


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okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 4/19/2007 3:14 PM (GMT -7)   
I am still not under control with this disease so I feel kind of bad most of the time. but I know one really huge flare I had I started getting chills. Than came a fever. Than came the joint pain and the agony. crying and moaning in my sleep. My temp was about 103 and I thought it was the flu. but it wasn't. Like other said listen to your body. Also I have noticed that the theme here is if you do to much or get stressed out or have a change in medicines that can bring on a flare. So you should try to Not get to tired, to stressed, listen to your body if you are tired than sleep or at least rest. Take your temp several times a day. I think as you become more formiliar with what your particular body can and can't tolerate you will know what to look out for.

hugs
carol
God Bless
Carol
 
 Newly DX's Lupus.Possible CREST,COPD, high PB xanax,triam , Opana ER for pain, Evista for osteo,. oxygen Plaquanil400mil, . effexor. spiriva, xopenex.
 
Come ye, all that are weary and heavy laden, and I will give you rest!
 
 


sandspoker
Regular Member


Date Joined Apr 2007
Total Posts : 104
   Posted 4/19/2007 4:18 PM (GMT -7)   
Hi Pat and Omega - Thanks for replying -
I'm a 41 yr old female who had "something" for a long time.  I guess it was after a summer of really bad arthritus that my doctor asked me if I wanted to get to the bottom of it and I said yes.  After my first visits with a rheumy (catching on to the lingo here...lol), I was diagnosed with Raynauds.  Then my Lupus indicators took off.  My sister too has lupus - she was diagnosed 30 years ago when the disease was relatively unknown (imagine how long it took them to diagnose her).  I suffer from chronic pain - one of the hardest things about this disease is the fact that I look fine so people just don't understand that I am sick (I've been trying to get through to my husband that I need his help).  In the past, I've had bouts with hepatitis, pneumonia, and pleurisy.  I'm not sure if any or all are associated with the disease but thought I would include this fact.  Like I mentioned, I am learning to rest more and I've had to give up some activities that I enjoy because of the pain.  Such is life though I guess...
Btw, I read another list of indicators that included reactions to fly bites - this alternate theory was based on the fact that Lupus has an effect on the skin - that's why I asked the question.  That alternate theory made me wonder about the boils...
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