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Waiting to see rheumy

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Posted 10/4/2014 11:55 AM (GMT 0)
I have been referred to a rheumy, but have not had my first appointment yet. It seems like forever before I can get answers so I am obsessing over lab results trying to figure it out myself.

My question is if you can have lupus with a sed rate of 2?

I have many symptoms of lupus (fatigue, malaise, headaches, low wbc, low neutrophils, low lymphocytes, low monocytes, seizure (just one), dizziness, joint pain, ana 1:320 homogeneous, high bun/creative ratio, high cholesterol...)

To me everything seems to point to SLE lupus except that sed rate.

I have gone back a few years (I've felt poorly for many years without doctors finding anything wrong with me) and my wbc was normal until May 2013 when it dropped and has continually tested low ever since.

Does the low sed rate mean it can't be lupus? If so, what else could it be?

Post Edited (Kimstph) : 10/4/2014 7:47:15 AM (GMT-6)

Posted 10/4/2014 8:38 PM (GMT 0)
I'm not sure of the answer on that.

I'm glad you've got an appointment. Try not to fret over the bloodwork. Let the rheumy figure that out. Fretting equals stress and stress equals flares.
Posted 10/5/2014 12:34 AM (GMT 0)
Very good advice. Thank you, Joy.
Posted 10/6/2014 6:21 AM (GMT 0)
Try to stop worrying about your blood work, like Joy said the Rheumy looks at the whole picture. Having a positive sed rate (ESR) or not doesn't make or break a lupus diagnosis.

What the sed rate, also known as ESR, shows is the amount of inflammation that's going on in your body at that moment in time when the blood is drawn. The Rheumy often looks at your sed rate or your CRP (C-reactive protein) this is another inflammation test. They look at one or both of these tests when they think you're experiencing a flare up. They do look at your labs more, once you've been diagnosed and started treatment.

Whenever I go in not feeling well, he usually will run my Sed Rate and CRP. Plus he will run my complements C3 & C4. Normally, with lupus these complements will be low and are often low when you're flaring up. I have had my CH50 checked which is another complement and it was so low that the Dr said that only lupus patients get this reading. Sometimes my Rheumy will also run my ANA and Double stranded ANA.

My Sed Rate and CRP are NEVER normal and it shows that I have inflammation in my body 24/7 even though I'm taking 30mgs of prednisone at the moment. I've been on prednisone for 14 years now and only been down to 10mg for almost one month, but normally I'm on 20mgs or higher. When really sick with say pneumonia I can be on as high at 90mgs a day. I do have all the terrible side effects the prednisone causes, but it's what's making my life bearable period.

Wait and see what your Rheumy has to say and then ask your questions of him. I'd suggest you make a list of questions you'd like answered by the Doctor. Take photos of any rashes that you may have or ulcers and take them with you to show the Rheumy. Answer their questions as through as you can.

If you have anymore questions and we can be of help, please feel free to ask away here. I'm sure someone will have an answer or a similar experience for you.

Hugs,
Barbara
Posted 10/6/2014 11:15 AM (GMT 0)
Thank you, Barbara!

I think this waiting is the hard part. I'm a Cancer survivor as well. Waiting on that diagnosis was difficult also. Once the diagnosis came through I had something to fight. I was like "okay - let's do this". I could get educated, had the support of doctors, family and friends, had "permission" to rest because "I had cancer"....

I definitely don't want a diagnosis of lupus because it is such a bad disease.

On the other hand I'm so tired of being told I have depression when I'm sure something more than that is wrong with me. A diagnosis, in some ways, would be confirmation that I'm not a hypochondriac. Also, friends will (hopefully) be more understanding when I cancel plans at the last minute because I don't feel well. People never understand. Or they understand the first time or two then no longer believe you and start taking it personally. With a diagnosis I would again have permission to rest and take care of myself. Now I often go to that wedding shower or whatever when I really want to be home in bed.

I've been looking for answers for such a long time.

But for now I am trying to chill out and wait. You and Joy are right - obsessing over labs isn't going to help.

I appreciate you and Joy and this forum. No matter what my diagnosis ends up being, this board is helping me through this waiting period. I no longer feel so alone because others are out there that understand.

Kim
Posted 10/10/2014 3:11 AM (GMT 0)
Hi Kim.
I hope you are well.

Yes, honestly leave the test results to your rhemy, they will know best. I was the exact same way before I was diagnosed and I stressed myself into pericarditis and ended up in hospital.
For now, take care of yourself - get lots of rest, go easy on days where you feel sick dont overdo it, stay out of the sun and exactly what Barbara said the symptom list will help with the questions. No question is stupid.
Please keep us updated, I really hope that it isn't lupus, we are all here for you regardless!
Good luck and gentle hugs!
Leesha
Posted 10/10/2014 12:36 PM (GMT 0)
Thank you, Leesha.
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