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

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

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))))

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

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

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....

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!

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!

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!