Can I have lupus without ever having high ana

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Lucy_T
Regular Member


Date Joined May 2007
Total Posts : 24
   Posted 5/11/2007 5:30 AM (GMT -7)   
I have low white count of 2.6 after depression drug celexa.  It can be an infrequent side effect.  No one is buying this and sent me to hemo dr who wants to do bone marrow biopsy. I have always had bouts of painful joints.  Many doctors, cardio, dermo, have looked at me and checked for lupus.  Never positive.  I have the butterfly rash diagnosed as roscea.  5 y0 granddaughter had very high ana with swollen and painful knee and ankle last year.  It also presented with rash from knees down.  When discharged from hospital followed up with RA specialist.  Still had high Ana but other symptoms gone so not diagnosed.  Got me thinking about my own symptoms over the years.  They asked if anyone else has arthritis or lupus in family.  No one.  All my blood test were normal except wbc 2.6 (normally low 4 for me all my life)  6 months on Celexa and it dropped.  Lymphocytes were also high 54.8.  They want to do a bone marrow biopsy and I am frightened out of my skin.  Anxiety has taken away my appetite and causng me to lose weight.  On my insistance they will wait 5 weeks before biopsy but gastro doc reran it two days ago.  No results yet.  Worrying.  I also have had gastro problems for a long time.  Getting colonoscopy next week.  Think I have ibs.  Have all the symptoms.  I know there's a lot of experience and knowlege right here.  I appreciate anything you can share.  Prayers are also appreciated.  Thank you.\
 
Lucy

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 5/11/2007 6:01 AM (GMT -7)   
Hi Lucy:

First I'd like to say welcome to our forum. I certainly hope that you don't have lupus, but if you do, you'll find lots of great people here to help support you and give you information.

To answer your question as to if you can lupus w/o a positive ANA, yes it does happen. It's not common, and it's I believe only in 10 to 15% of the cases. Usually, a person will have at least one positive ANA and then it goes negative. At least that's my case, I've had like 4 positive ANA in the past 18 years, but I normally test negative.

As to the hem/oncologists I'm sorry that they want to put you through a bone marrow biopsy. I've have 4 done, I have, in addition to my lupus, a rare blood cancer called MDS. Which I stand at 35-40% chance of changing into full blown leukemia. Your oncologist is worried about your low WBC and that's probably why he's wanting to the BMB. I hope that everything turns out alright and it's all normal. Hopefully, it's just the medication that you are taking that's causing your WBC to be low.

Gastro problems can be common in us lupus patients, but there are other things that can be causing your issues. I hope that your colonoscopy goes well and that get the results to you quickly and that they are good. The only advice I can offer to you is to keep a diary of all you symptoms and take pictures of any rashes. Try not to let yourself get worked up to much over the BMB, I won't lie they aren't pleasant. However, each person is different how they react to them, we have a member here who is 14 and she had one done. There are several others who have had them too. Each of us can comment differently on it. Like I said I've had 4 of them done, it hurt for me, but it was what I needed to be done. It's certainly answered some important questions that were being asked. Please try to eat something, just some little something. Know that we're here for you, if I can answer anything else give me a holler. Good luck and let us know what happens.

Take Care,
Barbara
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, MDS (Blood Cancer). Mediport and tons of meds.


hippimom2
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Date Joined Jul 2005
Total Posts : 5403
   Posted 5/11/2007 6:11 AM (GMT -7)   
Hi Lucy and welcome. Barb gave you some great information and I really don't have a lot to add. I have read the same things that Barb told you about ANA and lupus. I have a positive ANA but it's fairly low which made it harder for me to get diagnosed. My son also has a mildly positive ANA, but sometimes his is negative. He has joint pain and fatigue and is being treated for juvenile arthritis, but there are new things coming up in his case now, so we're not exactly sure what is going on. As I'm sure you are figuring out, lupus can be a very difficult disease to diagnose.

I don't blame you for being scared about the bone marrow biopsy - the whole thing sounds pretty scary. Like Barb said, several members here have had it done, so they can tell you their experience with it. Barb is a great resource and support for people who are going to have the biopsy since she has been through it many times herself.

Please feel free to ask any other questions you and also know that we are here if you need some support during rough times.

Take care and I'm glad you joined us.
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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redrose77
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Date Joined Sep 2005
Total Posts : 2573
   Posted 5/11/2007 7:35 AM (GMT -7)   
As the others have said a positive ANA is not always needed for a lupus dx. I had too many of the criteria without a positive ANA and finally got a dx because of that and the fact I found a doctor who said that the blood work is not reliable- her ANA is highly positive and so is her RF but she has no autoimmune issues or arthritis. She is a treasure. I would definately look into finding a doctor who will open their mind to the posibility that lupus exists without the ANA. I don't know where you live so I don't know if my doctor would be close enough for you to see her and get her opinion.

Also have they treated the rash on your face for roscea and if so did the treatment actually work. See with the lupus rash it comes and goes at will. Mine if I am tired starts to show then if I rest will fade again. If I have any illness it comes out heavy too. Less than 5 minutes of sun with sun block and I have a slight tinge and 15 minutes and the rash is full blown and I am ill from how sensitive I am to sunlight.

I say that if they keep checking you for lupus there is a darned good reason to suspect it. You may want them to run tests other than just the ANA.
Dx:fibromyalgia 2002, systematic lupus 2005, psoriasis 2006, rheumetoid arthritis 2006, early sjogrens 2006, low positive anti-phospholipid antibodies/lupus anti-coglutant 2001-2004 and 2007, osteoarthritis 2005, Migraine 1994, Compression fracture 2001, Disk problems 2006, Multiple allergies 2006, Post traumatic stress disorder (PTSD) 2007, Bipolar type II 2007, possible siezures 2005

Tx: plaquenil, Imuran, Enbrel, Celebrex, Tramadol, Norco, Singulair, Skelaxin, Evoxac, Clonazepam, Zonisamide, Baby Asprin, Relpax, Copper IUD


Lucy_T
Regular Member


Date Joined May 2007
Total Posts : 24
   Posted 5/11/2007 2:50 PM (GMT -7)   
Thank you all for your responses. My mind is going crazy. I'm so afraid of what I might have. I am obsessing mostly about leukemia and lymphoma because they are on the paper the doctor gave me describing the bone marrow biopsy. I'm happy to have found this forum.

Lucy

lion00
Regular Member


Date Joined Aug 2006
Total Posts : 334
   Posted 5/11/2007 4:06 PM (GMT -7)   
Hi Lucy, just wanted to add a to the already great info you've been given. I was diagnosed without ever having a positive ANA. My wbc is very high, ranges between 12 & 24. Everyone's story, bloods & diagnosis are different and that's why this illness is so difficult to diagnose and why so many doctors don't diagnose lupus quickly. I hope you find a good doctor who will look at all your symptoms and not just your blood work. It took me years to get a diagnosis and it is so frustrating and scary waiting. I was worried about leukemia also when my wbc just kept raising without anyone being able to tell me why. I've basically been fobbed off on that one though. I wish you well and hope your results from the biopsy are good. (I have bowel probs too and I know a lot of the ladies here do also) Take care and let us know how you come on x x
Chillblain Pattern LE, possible SLE, tachycardia, proctal fugax, anismus, slow transit constipation.
 
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Lucy_T
Regular Member


Date Joined May 2007
Total Posts : 24
   Posted 5/12/2007 7:13 AM (GMT -7)   
Did they do a bmb on you to rule out leukemia?

Ann Ireland
Veteran Member


Date Joined Apr 2006
Total Posts : 511
   Posted 5/15/2007 2:49 PM (GMT -7)   
These are VERY interesting posts. I had an ANA 1/800 and they are not going down the Lupus road as the RA (that it) was negative a few weeks afterwards. Now no mention of Lupus.
I have over the years got a rash between the eyebrows and splaying a bit above both eyebrows. It has been tender and very very slightly bumpy.
Two family members have asked me what it is. Where does this Lupus rash appear.
Most of ye know of my trials and tribulations and they continue.
I have lost faith in all docs in this country whose health service is going down the plug hole, literally with doctors contemplating a go-slow, the nurses out on strike and the ambulance service angry. Holy Ireland for ye!
Ann Ireland

Congenital Rubella Syndrome (CRS) Severely Deaf, Hypothyroidism, Pes Cavus, Crohns Disease, scoliolis, Hiatus hernia, diverticular disease, neuromuscular disorder (?parkinsons) movement disorder, ? another autoimmune disease.
Excema.

150mcg tyroxine, 20mg pantoprazole, 10mg Cipramil, 500mg 2 3times a day Mesalazine, 3mg Entocort, 62.5 Sinemet, 30mg Tamazipam, mystatin, sudocream


Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 5/15/2007 3:29 PM (GMT -7)   
Hi Lucy:

I know it's hard not to focus on the leukemia and lymphoma. Those are very very serious things that someone has to deal with. If I may, I have a rare blood cancer that stands a 30-40% of turning into full blown leukemia. I could focus on this all the time and drive my doctors insane and myself. I've come to accept that I've got a blood cancer, it's not going to get better. I will at some point need to attempt a bone marrow transplant to ATTEMPT to save my life. In other words I'm going to be terminal somewhere in the next few years or sooner. Like said in another post, we all are dying each day some, but I'm dying at a faster rate than I would. What I'm trying to pass on to you is, that I know it's hard not to worry. I do it a lot, but we sometimes get into situations that we have no control of. I'd suggest you stay away from reading up on the DX'ing process and what happens IF you have one of these. Wait until you've had your bmb. We've had several members here who have been in the same place you are and their tests were negative. Please keep faith in whatever higher power and remember that if you've got lupus, stress and worrying will only make you feel worse. I'll be more than happy to discuss what happens when you do your bmb. I understand where you are totally at, I've been there. I certainly didn't mean to offend you in anyway, I'm just trying to encourage you to take a deep breath and try to relax. I truly understand what you're feeling. ((hugs)) to you and I wish you well, please keep us updated on how you're doing.

Ann, to respond to your email, people can have a positive ANA w/o having lupus. Normally, healthy ppl can have a fairly high ANA w/o any signs or symptoms of lupus. I know from reading your posts that you surely have something going on. I know you're very disappointed in the care that you've had so far. I also know that you're frustration is through the roof. A typically butterfly rash will be across your cheeks up the bridge of the nose. My rash is across my cheeks and on the bridge of my nose. Of course, that being said we each react differently to our lupus and it can be different in each of us. I hope you get some answers soon.

Take care both Lucy and Ann.

Barbara
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, MDS (Blood Cancer). Mediport and tons of meds.


Lucy_T
Regular Member


Date Joined May 2007
Total Posts : 24
   Posted 5/16/2007 6:04 AM (GMT -7)   
sad  Thanks for your response Barbara.  I'm sorry you have such a serious condition which obviously causes you stress and worry.  I hope it never worsens for you. 
 
Yesterday I had my colonoscopy and they removed a small polyp.  Thought he would have seen irritation or infection because I've been having a major flare-up.  Had to have iv antibiotic due to mvp and came home feeling terrible.  Slept a while and felt worse.  Had no appetite inspite of going for a full day without food.  Turns out I was getting the flu.  By last night I had a sore throat and 99.5 temp.  Was told if I ran 100 temp to go to ER.  My husband was sick over the weekend but he never says anything until a day later.  I could have slept in the other BR.  Last night when I told him i was running a low grade temp he told me that I wasn't because I would be freezing (I was hot).  I don't know why he treats me like I'm making things up when I'm sick.  It really hurts me.  I went in the back BR and he didn't even bother to check on me this morning.  I think I need a new dr.  I've been seeing a nurse when I go who is sweet and kind and also smart but now that I possibly have something serious I think an md should have seen me.  Didn't go to work today.  Sill feeling yucky.  Will let you know.  Thanks everyone for your help.

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 5/16/2007 10:01 AM (GMT -7)   
Hi Lucy:

Oh no, I'm so sorry to hear that you're not feeling well. How's your temp today? Are you on any immuno suppressive drugs at this time? Are you bleeding from where they removed the polyp? I'm sorry that your husband isn't treating you better. It's a shame when our spouses act like they do, we'd never treat them that way if they were sick. Sounds like you may need a different doctor. Do you have a different doctor dealing with your other issues? If you do, maybe you could give them a call and see if they'd be willing to take a look at you.

I hope you begin to feel better, please don't wait if you feel worse, go to the ER. Let us know how you're doing when you feel up to it. You'll be in my prayers.

Take care,
Barbara
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, MDS (Blood Cancer). Mediport and tons of meds.


ocean1
Veteran Member


Date Joined Dec 2006
Total Posts : 707
   Posted 5/16/2007 1:03 PM (GMT -7)   

As far as I know yes you can have lupus and a negative ANA.  My ANA last fall was 1:1,280.  This past April it was negative but I still have my lupus.  I'm kinda new to all this blood test stuff so my word doesn't mean a whole lot but my experience with the ANA is that it can be negative and you can have lupus.  Hope this helps.

ocean


dbab
Veteran Member


Date Joined Jan 2004
Total Posts : 4151
   Posted 5/16/2007 1:35 PM (GMT -7)   
I just got my results back from when the Neuro ordered blood on Monday. My ANA was negative again. First time negative, second time positive, and now negative again. Funny thing, this ANA isn't it?
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Lucy_T
Regular Member


Date Joined May 2007
Total Posts : 24
   Posted 5/18/2007 5:57 AM (GMT -7)   
I finally saw my regular doctor yesterday (I always see a nurse). I didn't wear any make up because my face has the rash (bad). I have a lot of redness on the sides of my nose and it's kind of itchy. I thought maybe this would draw some attention but it didn't. I had a low grade fever 99.5 but it's back to normal on Tylenol. Still have gastro problems, going mutiple times, saw a speck of blood this am but nothing major. I have a cough from my throat which drives me crazy when I try to sleep so he gave me cough medicine which helps. I've had a little itching on back which concerns me a little. I feel like I'm going crazy from all of this. The clinic I go to is entirely computerized, menaing they keep no paper records. Yesterday the computers were down for the second straight time. I talked to the dr about my low wbc counts and he didn't seem at all concerned since I normally run low. Just told me to repeat tests in 4 weeks. I still don't feel good but my appetite has returned so that's good news. I need to gain a few pounds. I used to be so physically fit and exercised daily. Since I started a new job two years ago I've been working too hard and not exercising at all. I need to get back on the track. I occasionally have a pain in the left buttock that goes down my leg. Never checked it out but assume it's sciatica. It goes away with rest so I've backed off exercise completely. Take care everyone. You are all great and it has helped me greatly corresponding with you.

Love
Lucy
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