In a flare - When do you go to the PCP?

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CNSKris
Regular Member


Date Joined May 2006
Total Posts : 236
   Posted 9/3/2007 5:44 PM (GMT -7)   
Hi, been in flare all week.  Feeling very bad and not sure when I should go to the doctor.  Even though I am having a lot of bone pain with it, I don't think it has hit an organ yet.  I guess the question is whether or not I run to the doc everytime I flare or do I wait until it attacks something.  At this point, they haven't given me any medication for lupus or to stop its progression.
 
I am very concerned with this flare.  It is much stronger than the others I have had.  That, and I just came out of one recently that attacked my heart and kidneys.  I am a little scared it may go and hit those areas again.  Seems funny to wish for it to hit another organ.  I didn't realize the flares in and of themselves get worse too.  The pain and yuk feeling are driving me nuts, barely been out of bed all weekend. 
 
Any thoughts?  I get real confused when I get exhausted like this.  Thanks - Kristin
 
  Dx:  Lupus CNS 11/2005; Current - kidney disease, enlarged heart, MVP/regurg, dementia; GERD; vision loss, narcolepsy, rheumatic arthritis, IBS, ovarian cysts, raynauds, EBV/CFS, inflam. liver/spleen. Rx:  Atenolol, Aricept, Flexeril, Motrin  Previous-rashes, hemi-pelagic migraine, sensory loss, amnesia, PTSD/Dep., host of neuro problems, pregnancy compl., False pos. syphilis, fine speck & homogen ANA; IgM; staph/strept infections, colonitis, pancreaitis, gastritis, costochondritis, pericarditis, Hashimoto's, dyspnea, hyper/hypotension, lipedemia, ulcers, pneumonia, anemia, Scleroderma symptoms, vein swelling, etc.  
 
 


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 9/3/2007 6:12 PM (GMT -7)   
My general rule is that if I have pain or other new symptoms that my rheumy hasn't already addressed or told me how to handle...

I wait for 3-4 days to see if they'll subside with a bit of rest, ibrupohen, prednisone, or whatever short-term med I have been told to use. Then I head to the rheumotologist if it's still getting worse rather than better after 5-6 days.

If your PCP is treating your lupus, see your PCP...

(My PCP is for other stuff - sinus infections, annual checkups, that sort of thing, not lupus issues.)

It all depends on how you have your doctors set up...for bone pains, I'd see my rheumy, but if you have someone else addressing bone/joint pain, see them.

Hope you find relief soon,

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Cellcept, Prednisone, Trazodone, Fosamax, Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS(4of11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


hippimom2
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Date Joined Jul 2005
Total Posts : 5403
   Posted 9/4/2007 6:38 AM (GMT -7)   
Kristin, I also struggle with when to call the doc or go to the doc when I am flaring. I would say since this particulare flare feels especially bad and has you feeling nervous, I think a call to your doc might be a good idea. I asked my rheumy during my last appointment when I should call. He didn't give me a concrete answer, but told me to use my best judgement and that he would rather have me call than to suffer for too long. I usually do what Lynnwood does and try to wait it out a few days while trying to get lots of rest and taking a little extra prednisone or some pain meds.

I always think it's best to trust your gut instinct with some of these things and it sounds like your instinct is telling you to call your doc. I especially think with your heart and kidney issues, you don't want to wait too long or let things get too bad before going to your doc.

Let us know what you decide to do and what the doc says if you end up going.

Take care ((((Hugs))))
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; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

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omega
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Date Joined Jan 2007
Total Posts : 607
   Posted 9/4/2007 6:43 AM (GMT -7)   
If I have pain all over and did not go away or if it is unusal pain for a few days, then I will call my rhumty. If I just have one or two spots and if they are caused by the weather, then I will just leave it. It sounds like that you are in lots of pain, and I would call my rhumty/pcp if I were you.

CNSKris
Regular Member


Date Joined May 2006
Total Posts : 236
   Posted 9/4/2007 10:52 AM (GMT -7)   
Thank you for your input. Still in some pain today. Seems to get worse at night for some reason. Stomach swelled up like a balloon again last night. Saw the nephrologist today and he thinks my kidney is okay and that it isn't Lupus Nephritis yet. Unfortunately I can't think well today, I kind of go in and out of it. Therefore, I didn't get to ask a lot of questions. Basically he said that since I have a negative double stranded DNA test, I cannot have kidney disease. It is now probably something to do with my bladder and I should see a urologist. I'd say that is B.S., but I am not a kidney doctor. I bet $10 bucks the urologist says kidney disease. This is usually how the game is played. Sorry, very sarcastic today, my way of screaming I guess. Trust me, I am very happy NOT to have kidney disease, but still feel it was dismissed a little to easily. At least I am not in the danger zone yet.

For some reason for 10 years I have had tests with protein, blood casts, High ANAs, etc. and all of a sudden EVERYTHING is negative. It is a miracle I tell you. Now all of a sudden I'm cured. Tell that to my body this past week. I just wish someone would shoot my butt and put me to pasture. At least someone said something about the valve sclerosis. Figures it was a nephrologist intern (my PCP still has't called me). They think it is lupus, scleroderma or a mixture of three diseases. Which I guess clears that up for me, until next week when they tell me nothing is wrong with me and I'm just being thin-skinned again. No tests though, just more heart medication. Why does the nephrologist give you heart medication? Why is my head still spinning? This is the reason why I give up. Who can stand this for any duration. It has been over 10 years! One doctor diagnoses lupus another takes the diagnosis away like candy. Back and forth. What do they want an autopsy first? News flash...something is wrong here. Wonder why I have anxiety at times. Go figure. Well, I think I'll go bang my head against the wall now. (kidding). Thanks for listening - Kristin
 
  Dx:  Lupus CNS 11/2005; Current - kidney disease, enlarged heart, MVP/regurg, dementia; GERD; vision loss, narcolepsy, rheumatic arthritis, IBS, ovarian cysts, raynauds, EBV/CFS, inflam. liver/spleen. Rx:  Atenolol, Aricept, Flexeril, Motrin  Previous-rashes, hemi-pelagic migraine, sensory loss, amnesia, PTSD/Dep., host of neuro problems, pregnancy compl., False pos. syphilis, fine speck & homogen ANA; IgM; staph/strept infections, colonitis, pancreaitis, gastritis, costochondritis, pericarditis, Hashimoto's, dyspnea, hyper/hypotension, lipedemia, ulcers, pneumonia, anemia, Scleroderma symptoms, vein swelling, etc.  
 
 


firebabe
Regular Member


Date Joined Aug 2007
Total Posts : 206
   Posted 9/4/2007 3:50 PM (GMT -7)   
Kristin- I have had a bad flare for about 3 days now. I keep asking my hubby when he wants to take me back into the pasture and shoot me too! I feel for you and since I'm pretty new at this I can't tell you what to do, but I do know that sometimes being a little sarcastic can actually make a person smile and laugh, and that can make you feel a little better. You made me laugh when I read your comment, and I feel the same way. Hope things so better!

curlyhair
Veteran Member


Date Joined Jan 2005
Total Posts : 659
   Posted 9/4/2007 5:07 PM (GMT -7)   

Hi Kristin,

I also have a negative double stranded DNA test and I DEFINITELY have kidney disease. I am not a nephrologist either but I have been seeing one every 6 weeks for the past 5 years and I have the results of my kidney biopsy. It very definitely says kidney disease with a lot of permanent damage.

Just wanted to let you know it is not in your imagination. Besides, lupus nephritis is only one of many different types of kidney disease. I know only too well how symptoms can come and go. Take pictures when you can and don't give up. It is not in your imagination. That was the first thing my rheumy said to me and boy was I relieved! Hang in there. Your story is common but you will get answers eventually. Hope you are feeling a little better.

Sandy


DX: Kidney Disease, (? Lupus Nephritis) 2002
DX: Raynaud's Phenomenon and Lupus 2005
DX: Anorexia and Hypokalemia 2006
 
meds: plaquenil, lasix, klor-con


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 9/4/2007 6:07 PM (GMT -7)   
I'm frustrated for you Kristin . . . just sending you some hot tea and a hug. KEEP after the docs . . your symptoms are not minor and someone should be checking into it for you. Call your PCP and tell him what's going on and what the neph said . . . maybe he'll get you to the right doc or send your for a second opinion.

Blessings!
In His Grip,
AlwaysRosie          "We can't control the waves, but we can learn to surf!"
Psalms 139
 
Co-Moderator Lupus Forum
UCTD (Undifferentiated Connective Tissue Disease), Hashimoto's
Clickable Links:   Healing Well:  Lupus Resources
Lupus Foundation of America (LFA) Facts and Overview: Lupus.Org
Criterea for Diagnosing Lupus:  Lupus Criterea 
Find a Lupus Foundation Chapter near you: Lupus Chapter Locator


phndoc
Regular Member


Date Joined Oct 2003
Total Posts : 495
   Posted 9/4/2007 7:01 PM (GMT -7)   
back, in april I had to deal with this same question...when I had trouble walking and my legs hurt so bad. I finially had to call my rhmy. I had so other problems also, which didn't help. I was out of work for the whole month.

best of luck to your healing....
PLAQUENIL, FLEXERIL, CELEBREX - UCTD, BENICAR - HIGH BP, SINGULAIR - ALLERGIES, REQUIP RESTLESS LEG SYNDROME, LEVITRA, AND METROGEL FOR ROSACEA 
Enjoy what you can today and leave the rest for another day.
 
Frank
 


Hope143
New Member


Date Joined Sep 2007
Total Posts : 3
   Posted 9/5/2007 10:30 PM (GMT -7)   
Hey Kristin, I been going through a flare up for 8 days now. I have an appointment in a week to see my doctor so i thought i should wait but the pain is just sooo bad. I'm a student and going to school especially early in the morning sucks. It takes me ages just to get ready and its not a good feeling. My advice to you is to listen to your body. I think I should also listen to my own advice and call my doctor tomorrow morning. Take care of yourself :o)

Audrey Ann
Veteran Member


Date Joined Jul 2005
Total Posts : 815
   Posted 9/6/2007 4:43 PM (GMT -7)   
Kristen,

I just read this thread and I am so sorry for all the pain and trouble you are having. I would be very suspect of an intern just dismissing this. Call your rhuemy (or find one) and try to get some answers. Any specialist who knows what is what will know that the bloodwork results are extremely changeable with lupus. As for the kidney specialist giving you heart medicine, this is very important. Your kidney problems will affect your heart. My nephrologist is always monitoring my heart and kidney function and regularly checks my blood pressure. This sounds like the one thing the specialist has done correctly.

All my best to you. I hope my message comes to you on a good day without a lot a pain!
Prayers,
Audrey Ann
 
Lupus and RA and LOTS of Medications!
 


 


purplerose652
Regular Member


Date Joined Mar 2006
Total Posts : 124
   Posted 9/13/2007 8:59 AM (GMT -7)   
Can someone explain to me what it means when lupus attacks organs? I have been having alot of problems with my lungs lately and I have just been blaming it on the dust storms and poor air quality where I live. But now I am wondering if something else is going on with the lupus. I have been in a terrible flare.....:(
 
Thanks!
Take Care,
 
Renee
 
"Grace by which I stand."
 
Fibromyalgia, IBS,Gerd, Scoliosis, & Costochondritis, Lupus
 
 


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 9/13/2007 9:18 AM (GMT -7)   
Hi Renee . . . nice to meet you.
 
The immune system (which normally attacks invading germs and disease) will attack our own healthy tissue.  This is called auto-immune.  There are several auto-immune diseases . . . lupus is just one of them.   With lupus, the immune system will attack the covering or the lining of any organ.   This might include (but will be a different combination for each of us with lupus) the skin (rashes, sores), connective tissue (joints or covering on tendons), the kidneys, lungs, heart.   With the lungs, it can cause Pleuritis: inflammation of the sac around the lung, Pneumonitis: inflammation of the lung, and Pulmonary emboli: blood clots in the lung and some other issues.
 
Yes . . . if you are having lung issues, you should talk to your doctor about it.  I know that Babs (Mom46) has had some huge lung involvement, but I can't remember for sure which of the other members have lung issues.   If you start a new topic about "Lung Involvement"  those members will answer any of your questions.
 
I'm not sure how much you already know about Lupus, but I found a l-o-n-g  s-l-o-w tutorial which I have not watched but may fe helpful if you need basic informaiton on Lupus.  Here is the link:  http://www.nlm.nih.gov/medlineplus/tutorials/lupus/htm/_no_50_no_0.htmhave
 
There are also some clickable links at the end of my signature which will give you lots of information on Lupus.
 
 
I hope that helped answer your question.
 
Blessings!
In His Grip!,
AlwaysRosie          "We can't control the waves, but we can learn to surf!"
Psalms 139
 
Co-Moderator ~ Lupus Forum
UCTD (Undifferentiated Connective Tissue Disease), Hashimoto's, Inflamatory Bowel, Inflammatory Arthritis
Clickable Links:   Healing Well:  Lupus Resources ~~ Lupus Foundation of America (LFA) Facts and Overview: Lupus.Org  ~~  Criterea for Diagnosing Lupus (4 of 11):  Lupus Criterea  ~~   Lupus Foundation Chapter near you  Lupus Chapter Locator


purplerose652
Regular Member


Date Joined Mar 2006
Total Posts : 124
   Posted 9/13/2007 11:34 AM (GMT -7)   
Thank you for the information, Rosie. I will talk to my Rheumy about my lung/breathing problems. I think I need to do some more research about this disease since I am living with it now. I really appreciate everyones help and insight here!
 
Take Care!
Take Care,
 
Renee
 
"Grace by which I stand."
 
Fibromyalgia, IBS,Gerd, Scoliosis, & Costochondritis, Lupus
 
 


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 9/13/2007 6:37 PM (GMT -7)   
Hi Kristin--
My last rheumie appt I had lung issues and he was very glad that I was there and put me on pred right away. Asthma and such can get bad fast, I was really struggling using my inhaler all the time and the prednisone opened my lungs up and cleared that problem up very well. I also had enlargement of my heart that finally healed when they got me under control, which is good that it can heal, I didn't know that! Anyway, I felt that my heart was involved too, but it may have just been lung pain, they said my heart beat was more irregular than usual. So now tomorrow I get pulmonology tests at the rheumies office, so I was really glad I told him. I think I had the lung issues for about two to three days before the appt. There is also a nasty thing going around that is kind of a respiratory infection or maybe just allergens high, don't know, but my mom had the same problem three weeks before me and antibiotics didn't work but prednisone did. As we continue to pollute our world and more people get allergies and more allergens and toxins are introduced, I think we just will keep having problems. Here's some ((((hugs)))) for you and I'm glad you are going in. Sorry I didnt' post earlier as I'm coming down on the pred I am having trouble focusing and concentrating to read well. I'm like ADHD to the MAX!
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments

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