are you non-positive ANA lupies really out there??

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christine_rightbrain_writesjunk
New Member


Date Joined May 2009
Total Posts : 17
   Posted 5/17/2009 6:30 PM (GMT -7)   
Hello everyone! I am new to the forum. I am so happy to have found it and would like to introduce myself and tell my story a little bit. I will start at my conclusion, I do believe I may be needing a new Rhuemmy. But I am not quite sure. I am also looking for other Lupies who have yet to have a positive ANA. In 2004 I had a complete hysterectomy. There was an error, which resulted in months of hospitalizations and another major surgery, going under about 7 times. I say this because it was two months later that my entire system dramatically changed. All at once, fatigue in a manner I never felt set in, joint pain was extreme, and I had two major infections in my mouth. The first Rheummy I saw told me it was sudden menopause, ignoring the fact I was using an estrogen patch. A few months later I had my first bout of pericarditis (inflammation, but no significant fluid). All along I was seeing a neurologist for a peripheral neuropathy with absolutely no discernible cause. I needed to go on temp disability from my job as a crisis clinician, but I was still a single mother of three. When I went back to work, I soon had another bout of pericarditis and my feet, muscles and legs got worse. It was winter then and I started having joint pain more often. It was then I was referred to a the Rheummy I see now. When she started saying things like "stress" and "depression" (because with my honest history I said I had a history of anxiety and depression from which I was treated and stable for years).... At first I began to cry, proving her theory and then I stated my case, I am not over stressed, or maybe I am, but my stress is not giving me this pain and these symptoms. I had worked out daily for years. As a crisis worker I did shifts at all hours, phone shifts from my home. My energy level was always so high. This fatigue was a very new experience. The pain was new too. It was daily and I didn't even understand it was joint pain. Eventually, I had my first of many partial complex seizures. However, they have never "proved" they were seizures. At that point, the brain fog, word find, hair loss, rashes, mouth sores, all of it, stared. When she put me on prednisone, I becuase extremely anxious and a little paranoid. Thankfully, I realized it and told her. Plaquinil is a Godsend for me. One time I went off of it, and I needed a motor scooter or a can to get around.

My Rheummy has told me I should not work. She has told me we should work on my illness and finding the "right treatment". Now I am home and in the disability process. However, she still will not dx Lupus, calling it UCTD. This is because nothing has shown in my blood. I have attempted to bring up the 11 criteria and the fact the blood work does not need to be met, although it most often is. She, being the doctor, tells me I am wrong. I feel as if it is clear I have more than 4 of the criteria; but time when she has done blood work has it shown up. I believe I even read something about the ANA not being positive often when people are treated with plaquinil. Does anyone know about this phenomenon? There are a few reasons having the official dx really matters to me. First is treatment options. She has told me she is treating me for lupus but not giving me the diagnosis. That confuses me and doesn't seem like the best practice. She has thought about methatrexate. I am not exactly wanting this medication. But even on plaquinil I can't work. If there is the possiblility for a remission, I would most likely try it. I am wondering if a second opinion by a specialist may seem right. Based on my situation, I would love some feedback or some personal experiences.

Also, I was sent by her for a full neurological evaluation to ensure my neurologist did not "miss" a Neuro disease. The neurologist found peripheral neuropathy too and said it appears to be from an autoimmune illness, such as lupus.

Thanks for hearing my story! And I am glad to be here..


yeah Christine: Probable SLE, Nerve Involvement: peripheral Neuropathy,, Brain involvement: Cognitive Problems (word find, brain fog, intermittent confusion) Partial Complex Seizures, Anxiety/Depression , Skin involvement: Sun sensitivity, flare brought on in sun, skin rash in sun, Skin rashes, hives, mouth, lip, nose sores, Hair loss, head sores (slight), Joints/muscles: severe joint pain/some muscle pain, Severe fatigue/daily, Vascular: Raynoids syndrome, Hx of Pericarditis x 4, Severe Dry mouth, persistent, Thyroid Disease

(Only blood has been high cholesterol (genetic), One slightly elevated RA factor (which came down), CKT(?) elevated (muscles), and vitamin D deficiencies,

medication: Topomax 200mg (seizures/Nueropahty), Plaqunil 200mg 2 x day, Ultram 50mg as needed for pain, flexaral, pm for feet cramps, Synthroid .50 micro, estrogen patch, Cybalta, 90 mg Anxiety/depression/ leg pain


turn

alienwife
Regular Member


Date Joined Feb 2009
Total Posts : 108
   Posted 5/17/2009 7:29 PM (GMT -7)   
Hi Christine and Welcome! Here speaking is an ANA negative lupie . . .

I understand your frustration and your battle to be understood. I have been told that I have too much stress . . . I have been told that it's all in my head . . . I have been told that I just need more sunlight and more exercise and I will start feeling better . . . All the while feeling worse and worse, my emotional state was sliding and people just couldn't get it through their heads that I was not sick & tired because I was depressed, but that I was depressed because I was sick & tired.

A second opinion is ALWAYS a good idea - many doctors out there are so reliant on just the ANA results, which are not always the defining factor of your disease. It has taken me over 10 years of vague, transient symptoms and probably as many doctors before I have, now, finally managed to find a team of doctors who are willing to look at the whole picture instead of the result of 1 blood test.

Hang in there in your fight to get to the bottom of your issues - stop here often! The family here is SO supportive and, while we may not understand all of each other's struggles - this disease can affect me very differently than it affects anyone else, everyone here is very knowledgeable and will offer any advice they have to help you cope.

Welcome again . . . hoping for better days ahead for you!

Anne
AlienWife
There are only two ways to live your life.
One is as though nothing is a miracle.
The other is as though everything is a miracle.
Albert Einstein
Dx: SCLE, Sjogren's, Reynaud's, Peripheral Neuropathy, NCTD


BumbleBee1
Regular Member


Date Joined Oct 2005
Total Posts : 130
   Posted 5/17/2009 8:54 PM (GMT -7)   
Hi

I am sorry you are so unwell and so unhappy. Major surgery can be a trigger for lupus as it places great demands on the immune system

UCTD is as valid a diagnosis as SLE.

Undifferentiated Connective Tissue Disease is the term often used for a definite autoimmune connective tissue disease when there are none of the specific markers for any other autoimmune connective tissue diseases. In the case of SLE, formal diagnosis technically means biopsy proven lupus related skin or kidney issues, and either anti ds DNA or anti Sm antibodies which are the only specific markers of SLE.

UCTD is a variant of lupus, if you like, and is treated exactly the same way with whatever disease modifying medicines are needed to get it under control and other meds as needed for any outstanding symptoms. The success of the Plaquenil seems to show that this is a correct diagnosis but not enough. In fact some doctors probably would never have diagnosed at all without bloodwork especially ANA or another antibody like anti Ro. Having an SLE diagnosis means getting insurance is impossible.

It is quite possible that taking Plaquenil could reduce ANA. Many doctors never routinely check for it after diagnosis because it isn't reckoned an indicator for disease activity. Dr Wallace says that the only people who never have a positive ANA eventually within a couple of years are those with anti Ro antibodies or those who have been treated. ANA levels can vary for no particular reason anyway. However there is nearly always other blood work that back up the diagnosis. even if no antibodies. Make sure you have had all the usual tests such as complement and especially the tests for anti phospholipid antibodies which could account for some of your symptoms.

You could get your DHEA levels tested to see if they are low for your age. Supplementing to normal levels can increase general well being and energy. Maybe you have fibromyalgia too, which can cause fatigue and quite often accompanies lupus, or some form of anemia and presumaby the thryoid is well controlled. Anxiety and depression are reckoned disease symptoms these days as well as a reaction to pain and the challenges of life. Many people find an SSRI type anti depressant very useful and some doctors think that people with lupus tend have a problem with serotonin
Adding Quinacrine to the Plaquenil can bring huge benefits without going on to the Imuran or Methotrexate which are the next line after anti malarials. The Quinacrine is especially energising.
It is important to feel confident in your doctor and be able to dialogue about treatment options.

Good Luck
BB

AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 5/18/2009 6:26 AM (GMT -7)   
Welcome to the forum Christine!!

After reading your intro . . . a couple thoughts come to mind.

I agree with Bumblebee who mentioned the Anti-phospholipid or anti-cardiolipin antibodies. This can cause thick, sticky blood which can cause strokes, seizures, and other issues. Look back through your blood work and see if they have watched for this (blood work might be IgG and IgM, Serum). If not, then make sure and have some blood work done. The treatment is use of a blood thinner. Sometimes just aspirin and sometimes something stronger. But missing this issue can be devastating as it can cause strokes and such.

You mentioned that you are using an estrogen patch. This "might" be causing part of your problems. If you do have UCTD/Lupus, hormone therapy 'can' trigger a flare. Most of us notice increased inflammation during our monthly cycles too. Just a thought. Not telling you to get rid of the patch . . . but to think about a disease pattern in relationship to starting the HRT.

I understand your need to have a name for your symptoms. But getting that Lupus diagnosis in your medical records can be darning. Your rheumy seems to be treating your symptoms . . . just as if it were Lupus. Lots of us on this forum have no dx or the UCTD dx. I am one of the members with no positive ANA and pretty unremarkable bloodwork. I've beeing dx'd with Lupus and then un-dx'd by subsequent doctors. . . . but each one has continued to treat with meds as though it is Lupus.

If your doctor is working cooperatively with you in fighting your symptoms . . . I wouldn't push for the Lupus dx. He/she is actually doing you a huge favor by reserving that dx. *sighhhhhh* I'm sure that's not what you'd like to hear . . . because its hard talking about our disease process when we don't have a great name for it. But UCTD is a valid diagnosis.

I've noticed, too, on the Crohn's forum that lots of people are treated for Crohn's w/o a firm dx. I'm one of them too. I was dx'd and then un-dx'd. It can be really frustrating . . . especially when I end up at the ER and try and communicate my issues w/o having those firm diagnosis.

BTW: a "small" rise in CPK - can be from exercise or cholesterol lowering meds (after a quick search on this topic) . . . But there is another auto-immune disorder called Polymyositis . . . which attacks the muscles. This would cause a huge rise in the CPK. The folks on this forum who have talked about having this, seemed to crash rapidly though . . . it didn't seem to come on gradually and they needed immediate medical intervention.

Glad you found us!! Keep us posted.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator

Post Edited (AlwaysRosie) : 5/18/2009 7:35:42 AM (GMT-6)


Debbie Downer
Regular Member


Date Joined May 2009
Total Posts : 62
   Posted 5/18/2009 3:10 PM (GMT -7)   
Hi there!!

I am in dx limbo!! It is truly not a fun place to be in. I see that we share a lot of the same symptoms. I have been struggling with joint pain, fatigue, muscle soreness, chest pain, rashes, memory loss, cold all the time although heat and the sun make me feel worse and cause my face to break out in red rash (my doc says that is rosacea, whatever.) and mouth sores (horrible painful nasty ones) for 4 years now. I also get rashes on my arms that just show up out of the blue. I was the picture of health before I had my first child in 2005. Then it was all down hill. In 2007, my primary physician labeled me depressed and said that explained all my symptoms. I believe all my labs came back normal except for cholesterol. In 2008 I had another child and nursed this time which I'm starting to think was a bad call. A few weeks ago I went back because I am doing worse now. The fatigue is unbearable some days and tolerable others and some days I feel fairly good for me anyway. I have really bad weeks, followed by ok weeks. The joint pain is always there, mostly in my knees and neck. My knees always hurt when I bend down or go up and down stairs and they crack as well. This time all my labs came back normal except for a positive ANA. My DR did the other blood tests to determine Lupus and they were negative. She said flat out that I did not have it because of that. I asked about my positive ANA and she said it was probably a false positive. I was so irritated because why would she think that with all my other symptoms. Anyway, I am coming off my worse "flare" ever. I had migraines this time and that never happened before. They lasted 5 days. My neck hurt so bad and was so tense. I think that is what caused the headaches. I was also dizzy and had what you call brain fog. I felt like I was off balance. I was so scared that I might have a tumor that I went to the ER for a CT. It was normal. The ER dr suggested auto immune and believed that all my pain was caused by all the tension in my neck. I wanted to say, "But that can't be doc, my doc says I'm just depressed". I understand your frustration. I have heard that you can still have Lupus without a positive ANA. It is only one of the 11 criteria. I have read a lot about Lupus, but am still too uneducated to answer your questions. I can offer my support. I know what it is like to feel so terrible and have doctors force a diagnosis of depression down your throat. I even accepted that back in 2007 and took anti depressants for awhile and they did nothing for me really. I cannot imagine that depression causes mouth sores, rashes, and makes you where you can't tolerate being in the sun for very long. I'm not a doctor, but that doesn't make sense. I do have anxiety issues and some paranoia. I hate putting that on the new patient sheet because it always seems like doctors can't look past that. I'm labeled the depressed hypochondriac almost immediately.

I don't know if you should look for another Rheummy, I don't know what a good one is or a bad one, I have yet to meet mine. My first appt is July 8th. Maybe we will both get some answers soon! :-)

redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 5/18/2009 10:04 PM (GMT -7)   
I am one of those ANA negative lupies. Actually the ONLY positive blood work I have EVER had was antiphospholipid antibodies. Even my inflammation markers were negative when the inflammation was so bad my hands were claws and you could SEE massive amounts of inflammation in the joints. I spent 15 years being told it was all in my head, even with the butterfly rash in full bloom on my checks, pericarditis, pleursy, nerological issues, mouth sores, hair loss, rashes, extreme sun sensitivity, joint pain, and a host of other problems. Take a look at my signature and you will see what happened when I found a doctor who doesn't live and die by blood work. With treatment I am doing better but there is a very real chance I will never be able to work. The disability process is long and hard. I won after it went to a judge. I can only say stick with treatment and ask about Imuran if she is discussing methotrexate as a possible option to try first if you are afraid of the mtx. I too was afraid of mtx and my doctor understood my fears and offered Imuran as a possibility which I took. I am doing much better, I do have to take prednisone as well for now because the lupus got into my brain and caused major problems this past fall. I don't know what to tell you about the UTCD dx except at least you have a dx, some people here have no dx but are being treated. Lupus dx can mean never being able to afford insurance again too. I hope some of the more experienced people come on and give you some help.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, cozar


LovedbyHim
Regular Member


Date Joined Mar 2009
Total Posts : 98
   Posted 5/19/2009 5:02 AM (GMT -7)   
Hi Christine Welcome ! I am ANA negative most of the time. This drives me nuts because I feel sick as a dog and by golly it should show in the blood. My Rhumey said, "Presently we have no true test for Lupus." I read an artical that said the docs add all the systems and organs that have been attacked and you have to have it for a couple years. I was in the ER one time and truly in so much pain from inflamation in my chest area and then told i was just depressed and in menapause. I cried and said, "YA ALL ARE MAKING ME DEPRESSED!" I was sent home with pain and hopeless. I pray you Christine will find the truth and get treated properly very soon. Hang in there Sweetie!!! Tammy
I have SLE, Raynauds, mitrol valve prolapse,Haushimotos thyroiditis.
 
Meds I'm on are Prednisone, Vitamin D, Hydroxchloiquin, amitriptylin, levoxyl, colchcine, mobic, flexeril, and lyrica
 
Rom 8:18-19 "I consider that my present sufferings are not worth comparing with the glory that will be revealed in us." 


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 5/19/2009 6:55 AM (GMT -7)   
Since my lupus diagnosis, which included a high ANA and other positive blood work, neither my current rheumy nor my last one has checked my ANA again. Your ANA levels change and it's possible to have a negative test after having had a positive one. I believe that's why most rheumies want other labs done in order to give a positive lupus diagnosis. My complement levels were very low, indicating that I was in a flare. That's all my rheumy needed to finally give me a diagnosis. Lab work is very expensive and I'm glad she doesn't run unnecessary tests. I get plenty of lab work done on a regular basis as it is.

Interesting how different from each other rheumies can be.
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, arava, neurontin, synthroid, triamterene, actonel, niaspan, tri-est, cymbalta, tricor, acifex


christine_rightbrain_writesjunk
New Member


Date Joined May 2009
Total Posts : 17
   Posted 6/30/2009 3:39 AM (GMT -7)   
Thanks for the replies here! I have been off for a while. I can relate to the whole thing about being going to the ER a few times..over and over..and having chest inflammation, pericarditis, ect...sometimes being told all sorts of crazy things for different areas of problems. Most recently I had a Partial Complex Seizure.. or some type of brain involvement (they have not verified seizure activity) and they told me in the hospital I may have had Post Traumatic Stress from an unidentified traumatic event. I actually started laughing at this one!! I was a psychiatric clinician for 15 years when I was in the workforce .. :( I said I had no problem being open to the idea that all of this was caused by a traumatic event...but if so..please get me into treatment because it would be nice if I knew I could at least work on getting better (I also do have history of some trauma in my past which I have gone to therapy for in my 20's, so I realize it is not "easy" to deal with trauma recovery, but I was being sarcastic to their inability to diagnose).. Thankfully, the head of the nuero team came in and I mentioned the whole trauma "theory" to him and he said he didn't think that made any sense at all. I then learned I had been speaking to an intern and felt just a little bit better, I suppose.
Probable SLE, Nerve Involvement: peripheral Neuropathy,, Brain involvement: Cognitive Problems (word find, brain fog, intermittent confusion) Partial Complex Seizures, Anxiety/Depression , Skin involvement: Sun sensitivity, flare brought on in sun, skin rash in sun, Skin rashes, hives, mouth, lip, nose sores, Hair loss, head sores, Joints/muscles: severe joint pain/some muscle pain, Severe fatigue/daily, Vascular: Raynoids syndrome, Hx of Pericarditis x 4, Severe Dry mouth, persistent, Thyroid Disease, hx of moderate asthma at start of initial disease and joint pain, not current (but NO positive ANA-ever)


Topomax 200mg (seizures/Nueropahty), Plaqunil 200mg 2 x day, Ultram 50mg as needed for pain, flexaral, pm for feet cramps, Synthroid .50 micro, estrogen patch, Cybalta, 90 mg Anxiety/depression/ leg pain


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 6/30/2009 7:42 AM (GMT -7)   
I was ANA positive with a "low" 1:320 that showed up only once in 2002 when I was first diagnosed. Since then I haven't been tested much, but when I have been it's always been negative...but usually with really high inflammation markers.

With treatment (Cellcept was my magic med, things work differently for everyone) I've eventually come to the last 7-8 months of NO lupus indications at all in the bloodwork, plus an abatement of most of my symptoms.

It can get better, with or without dx....just need the right lupus-educated rheumy. Find one thru your local chapter of www.lupus.org!
Lynnwood, Lupus & Sjogren's Moderator
Life is far too important to be taken seriously. - Oscar Wilde, 1882


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 6/30/2009 10:14 AM (GMT -7)   
I am also an ANA neg. lupie. Mine has never been positive. My lupus was diagnosed by a renal biopsy and symptoms. I have the anticoagulant antibody, had a PE in my left lungs, have had cerebritis/neuro involvement and end stage renal disease. I also have a pacemaker courtesy of Lupus. My c-reactive protein, RF, Sed rate were really high, but I have never had a pos. ANA. Judy

nurse2
Regular Member


Date Joined Jul 2005
Total Posts : 229
   Posted 6/30/2009 7:08 PM (GMT -7)   
I have had two positive ANA and the rest have been neg. I have all of the markers.....extream sun sensitivity, oral sores that come up to my nose and even inside my nose. My butterfly rash only shows up at night (anyone else like this?), joint pain like you wouldn't believe,brain fog, fighting for the proper words,hair falling out by the handfuls and tons of other things. I have fibromyalgia and have been in a flair since Dec. I fell in late Dec. and tore the rotator cuff and labrim so I am having surgery July 22. I tore the rotator cuff in the same shoulder four years ago and had to have surgery. I've had both knees replaced and have always done very well and since Dec. I can barely get up the stairs in my house and walking very far sends me over the edge with hip pain. My bones truely hurt! My rheumy increased my Neurontin to 2700 mg./day and I gained 25 lbs. in 3 weeks. Not something that pleased me at all so we stopped that. She just put me on a low dose of DHEA and it made me itch all over horribly...not to mention my face breaking out and the greasy hair. I had no increase in energy so I stopped the med. Not sure how she will fell about that but you just can't go out in public scratching like some monkey! I have been going through all of this mess for over 20 years and it is very disheartening that someone can't help me feel better. I've had 4 cervical spinal surgeries and after this last one I was forced to quit my job. The meds are so terrible expensive and I take 22 pills a day. Where is the answer for us?
Nurse2
Degenerative disc disease,osteoarthritis, status post 4 cervical spinal surgeries with plate insertions and fusion, Lupus, Sjogren's Disease, Fibromyalgia, chronic heacaches and chronic pain.
 
Find blessings in every day!
 


dbab
Veteran Member


Date Joined Jan 2004
Total Posts : 4151
   Posted 6/30/2009 9:21 PM (GMT -7)   
Will your doc do a lupus panel anyway to test for the antibodies? My first ANA test was positive but not a significant titer (so in fact it was considered negative) however they also ran a anti-RO (aka SSA) antibody test which was highly positive. Since that first appt, my ANA has gone positive but it wasn't in the beginning. Who knows, it may be negative again since I'm medicated.
Dx: IBS 1989, Diverticulosis 2004, Idiopathic Acute Colitis 2006, UCTD 2007, Localized Scleroderma 2009, Raynauds 2009
 
Meds: Plaquenil 400mg/day, Pred 2.5 mg/day (tapering), Methotrexate 10mg/week, Hydrocodone PRN, Flexeril PRN, Fiorinal PRN, Baby aspirin, Prenatal Multi, Vit E, B12, Fish Oil, Biotin, Calcium, Folic Acid


christine_rightbrain_writesjunk
New Member


Date Joined May 2009
Total Posts : 17
   Posted 9/2/2009 3:46 PM (GMT -7)   
hello to everyone who wrote me replies to this post while back. I am not sure if I should update here or in a new post. However, I will start here. I was hospitalized last week with multiple seizures. I was there for over a week. They put me on three seizure medications and I am also now on methotrexate. I still don't 'HAVE' the lupus dx and I am not as concerned about my dx. However, I have since developed the butterfly rash (this happened when I was in the hospital)- and I saw a rheummy there who had did a fellowship in England. He happened to mention ANA negative patients, now 5% of lupus patients are turning out to be the patients who are less likely to develop the more "life threatening" diseases. I am not sure what he meant... more damaging heart involvement and significant kidney failure. It was the first time I ever heard some explanation from a doctor stating I possibly could be one of those in the percentage who does not have a positive ANA-and for what it is worth- he put a positive spin on it... tongue I still feel lost and confused almost everyda about where I am going with my health, doctors and my life. I truly only care about the best treatment now. The methotrexate helped at first, now even that is not seeming to work.

I was reading one of the earlier posts. I am on an antidepressant. I have been for several years. I have taken an SSRI...a small dose now. This dose no good for my physical symptoms. I suppose it helps my situational depression. I was interested in the patch thing because I did just increase it..
Thanks for all your input
CTDU/Probable SLE- Peripheral Neuropathy, Partial Complex Seizures, Severe and chronic joint pain/fatigue, Sun sensitivity, butterfly rash, vitamin D deficiency, skin rash in sun, Skin rashes, mouth, lip, nose sores, Hair loss, head sores, some muscle pain, Muscle cramps, Vascular: Raynoids syndrome, Hx of Pericarditis x 4, Severe Dry mouth, persistent, Thyroid Disease, hx of moderate asthma, lung inflammation at onset of illness, hx elevated RF, recent protein serum elevated. No positive ANA yet


Methotrexate, 2.5 mg (4tabs 1x a week) Folic Acid (1mg daily), Plaqunil 600mg day, Topomax 200mg day (neurapathy), Ultram 100mg (prn) pain, flexaral, pm for feet cramps, Synthroid .50 micro, estrogen patch, lexapro 5mg, (mild anxiety),

~nothing is impossible~


christine_rightbrain_writesjunk
New Member


Date Joined May 2009
Total Posts : 17
   Posted 9/2/2009 3:48 PM (GMT -7)   
One more thing..the last test I took with my Rhummy had some protein serum which was high..but she would not explain what it meant. She said we will wait until next time we do blood work. :( I am not sure what that is about. I do not have all my blood work in my records. I will admit to being foggy heady, scattered and overwhelmed. .. confused
CTDU/Probable SLE- Peripheral Neuropathy, Partial Complex Seizures, Severe and chronic joint pain/fatigue, Sun sensitivity, butterfly rash, vitamin D deficiency, skin rash in sun, Skin rashes, mouth, lip, nose sores, Hair loss, head sores, some muscle pain, Muscle cramps, Vascular: Raynoids syndrome, Hx of Pericarditis x 4, Severe Dry mouth, persistent, Thyroid Disease, hx of moderate asthma, lung inflammation at onset of illness, hx elevated RF, recent protein serum elevated. No positive ANA yet


Methotrexate, 2.5 mg (4tabs 1x a week) Folic Acid (1mg daily), Plaqunil 600mg day, Topomax 200mg day (neurapathy), Ultram 100mg (prn) pain, flexaral, pm for feet cramps, Synthroid .50 micro, estrogen patch, lexapro 5mg, (mild anxiety),

~nothing is impossible~

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