Newbie here;confusing lab results

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Mariepoms
Regular Member


Date Joined Oct 2007
Total Posts : 61
   Posted 10/10/2007 12:04 PM (GMT -7)   
Hi All,
 
I'm new to this forum and can use a little advice.I'm a 37 year old female who has been otherwise healthy.I have a history of Asthma and allergies.The only medication i take is Advair for my asthma.I have been feeling fatigued and I had some BAD joint pain two weeks ago and went to my MD.I didnt have the pain when i went to the MD but figured it was worth keeping my appointment anyway.My M.D. drew some blood and My WBC was 3.9,ANA was a whopping 889 the Sed rate was 20.My MD drew more specific bloods a week later and i had a positive double strand DNA and Sjogrens was 826.The sed rate went up at this time to 30.My urine was normal.Went to a Rhuematologist two days ago and he said''we dont treat numbers and only treat symptoms''.I said i have some joint pain and stiffness in the morning.My hands are usually swollen and stiff until the early afternoon and the joint pain varies.Some days it will be in my knee and sometimes my shoulder and sometimes it's in every joint.He said to go home and not to worry and just continue on living and take Motrin for the joint pain.Why do i not feel comfortable with these numbers and the Rhuematologist's suggestion?? What should i do next?? Should i get a second opinion??
 
I would appreciate any feedback.
 
Thanks,

AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 10/10/2007 12:29 PM (GMT -7)   
YES . . . get a second opinion.

While I agree (not sure how the others feel) that the docs need to treat the symptoms and not the numbers . . . the numbers are very important to track organ involvement which may not have symptoms until damage is done.

The labs you mentioned wouldn't necessarily give them info about the organs, but they should follow some schedule of testing to make sure your kidneys and such are not involved.

Since you do have joint pain, most docs would also start you a daily maintenance dose of plaquenil and have you use the motrin (ibuprofen) as needed. If that combo works, you wouldn't need to step up meds unless symptoms were no longer controlled with that regimen or you had new symptoms or other positive blood work.

Also, if the Sjogren's is causing dry mouth . . . that needs to be addressed to preserve your teeth. I assume you don't have dry eyes only because you haven't mentioned it. . . . but you may find, after learning more about lupus, that you have many more symptoms which you didn't even realize.

Bottom line . . . . he should be tracking, monitoring and treating your health issues.

I'm glad you found us and I hope you make some good friends here. It is a very supportive and informed group!! Welcome!

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, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

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


mom46
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Date Joined Dec 2004
Total Posts : 8198
   Posted 10/10/2007 12:43 PM (GMT -7)   
Hi Marie,
   Welcome to the forum. I agree with Rosie about getting another opinion. Most of us have been to several different Rheumies to find the right one.
   Also keep a journal of all your symptoms whether you think they are minor or not. If you see another doc get copies of your labs and any tests to take with you. Write down a list of questions to ask as well. Most of the time when we see the doc we forget what we wanted to ask... :-) .
  Hang in there and please keep us updated. You will be in my thoughts and prayers.
                                                                  Babs
 
Dx: Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Neuropathy,CAD
Meds:Methotrexate,plavix,aspirin,protonix,,zanaflex,xanax,
mirapex,advair,foxamax,Vytorin,folic acid,prednisone,lunesta,Chantrix,Tramadol,Nitro.
 
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.


sharentrials
Regular Member


Date Joined Jul 2007
Total Posts : 261
   Posted 10/10/2007 1:34 PM (GMT -7)   
Hi, Marie and welcome. I also think that a second opinion is in order. I agree that symptoms should be treated, but there's a lot more to it. I saw 2 other rheumy's before I found the one I'm working with now. It sounds kinda like the rheumy you saw didn't really take time with you. Please look at the link in Rosie's signature that reviews the 11 criteria for lupus (you need only meet 4 of those and not even all at the same time). Take care and please keep us updated.
Always looking for the silver lining, Sharen

SLE '06, Sjogren's '06, Traumatic Head Injury '94
Prednisone 10mg and tapering, Caltrate 1200mg, Multi-vitamin, Prevacid 30 mg, Actonel 35mg


Gidget^
Regular Member


Date Joined Aug 2007
Total Posts : 171
   Posted 10/10/2007 2:06 PM (GMT -7)   
Hi Marie,
I'm fairly new to the forum and haven't posted too much but when I read your post I had to join in. I agree that you need to get a second opinion. A lot of doctors will treat the symptoms if the symptoms are there but not the blood test results. You have both which makes me believe that the doctor needs to be looking at your lab results a little closer. My ANA has been going up over the last three years and right now it's at 2,306 and my dsDNA is at 2,256 or something close to that. My doctors call those numbers disturbingly high and have told me that I must come in monthly for blood tests. They are concerned I'm heading towards organ involvement. Your joint pains sounds a lot like of those who post on here. Some days it starts out in your knee and before the end of the day your knee pain is gone but you now have shoulder pain. It seems like a lot of us have finger/hand issues. Most important thing to remember is that you have read and educated yourself on autoimmune diseases the better you will be able to take care of yourself. Don't count on the doctors to take care of you. Good luck!
Gidget^
 
SLE 9/07, FMS '90's, Spinal Stenosis, Osteoarthritis, Sinus Tach, PVC's, Kidney Stones, Parotid Neurofibroma 8/04, Cervical Cancer 9/06
Plaquenil, Clinoril, Toprol XL, Prozac, Zyrtec-D, Zocor, Vitamins B6 & B12, Folic Acid, Toradol, Percoset, Loratab
 
There is no psychiatrist in the world like a puppy licking your face.
 
 


Ginny
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Date Joined Feb 2003
Total Posts : 5514
   Posted 10/10/2007 2:50 PM (GMT -7)   
Hi Marie,
 
I'm going to rock the boat a bit here! I know why rheumatologists don't treat the numbers. They aren't always trustworthy. Your sed rate of 20 is normal.  A sed rate of 30 isn't bad. If your sed rate was climbing into the 70's or higher, then your rheumy might look a little more closely at it.  The sed rate is not a good indicator of inflammatory processes. My rheumy and family doctor pointed that out to me again this go round.  I just went through a flare up in my lupus and my sed rate was 8.  Well within normal ranges.  In fact, all of my blood work came back perfectly normal, but I was feeling FAR from normal in every way.  We upped my prednisone and I got through the flare in 3 weeks.  But we never went by what my blood tests said, or my normal urine tests.  We went with the symptoms and how I felt.  Same goes for your ANA.  Lots of us have a negative ANA, but with all the criteria of lupus, and other positive antibody tests.  So the ANA can make a diagnosis harder to get too.
 
Lupus, if you have it, is very unpredictable and can make a real liar out of you, hehe!  You feel like poop, but your bloods and urine look like a healthy normal person.  That is how autoimmune diseases work.  They stink!
 
So, I do agree with the other ladies.  A second opinion would be worth it. Also, keep a daily diary of all your symptoms, how you feel, etc, etc.  That will help when it comes to explaining everything to your next doctor.  If you see a strange rash anywhere, take a picture of it.  Lupus is like gathering evidence from a crime scene! tongue
 
You're wise to listen to your gut on this.  Get another opinion for sure.  Just remember that the numbers don't always tell the story.
 
Keep us posted!
Ginny
I can do anything through Jesus Christ who strengthens me.  I have learned in whatever state I am in, to be content.  Phillipians 4:11-13

33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(stroke),Sjogren's, Raynaud's, seizure disorder, libman sach's endocarditis, vasculitis, sacroiliitis, Neutropenia, thrombocytopenia. Prednisone, Imuran, Coumidin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


Mariepoms
Regular Member


Date Joined Oct 2007
Total Posts : 61
   Posted 10/10/2007 3:07 PM (GMT -7)   

Hi Gals,

I want to thank you all for your quick reply.I have been so stressed about all of this and felt like i was feeling somewhat isolated for some reason.I'm glad i'm not alone.

I'm going for a second opinion.I want to seek out a female Rheumatologist this time.I'm going to keep a daily diary of my symptoms.Though i have noticed that some foods make me feel REALLY CRAPPY.Food that are salty and processed have a negative effect for me.I wake up with a terrific headache and body pains.I started a new diet last week.An anti-inflammatory diet that i got from Dr.Weil's website.I'm going to keep a diary on that and see if it makes a difference.

As for the Sjogrens....NOPE.I have no dry eye,dry mouth or any dryness period.Just joint pains and hand swelling in the morning.I'm off to work now.7pm-7am.I'm a Registered Nurse:)

Have a Good night and i will be looking forward to seeing more replies tomorrow.Thanks for being supportive.

Marie


AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 10/10/2007 3:14 PM (GMT -7)   
Hey Marie . . . glad you are feeling less isolated. I just remembered a post in another topic that may help you. We all started a topic where we gave our best tips. When that topic was done, it was included under a permanent topic at the top of the forum "Lupus Resources". There is a link to it in the bottom of my signature. Look for the post with suggestions to new members. Lots of good advice in there.

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, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

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


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 10/10/2007 3:26 PM (GMT -7)   
Marie, welcome to the forum. It sounds like you had a pretty unsatisfactory appointment with your rheumy and that's reason enough to get a second opinion. Many of us have gone from one rheumy to another till we found a doctor in whom we have confidence and who communicates well with us. I'm glad you have decided to see someone else. I've had some great male doctors but my preference is also to see a woman. Let us know what you find out.

Pat
Lupus, Sjogren's, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, multivitamin, calcium w vit D, fish oil, aspirin


Barbara Lee
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Date Joined Sep 2003
Total Posts : 2889
   Posted 10/10/2007 7:53 PM (GMT -7)   
Hi Marie:

Another welcome coming your way. I see the others have given you many good ideas for keeping a journal. I have to agree with Ginny, numbers don't always mean that much. I have a sed rate of 30 and yet when I had surgery the amount of inflammation in my body cavity was much much more than that. I also want to caution you that having a mind set that a female Rheumy will be better because she is a woman, isn't always correct. Sometimes, female doctors can be much tougher on us than a male doctor. With Lupus it's common for us to go through several rheumys before we get the correct one. It can be very discouraging, but don't give up.

I wish you the best and I'm glad you've found us here. Everyone here is very caring and helpful. Hoping you find a good doctor and get some answers really soon.

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


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 10/10/2007 8:48 PM (GMT -7)   
Hi Marie,
 
You're getting a lot of great advice on your situation. Barbara is right.  It really doesn't matter whether it's a male or female rheumy. I've had good ones and bad ones from both genders.  I've gone through 3 rheumies before I found one I liked.
 
You have diet issues eh?  That is very interesting.  Food plays a big roll in how lupus reacts in the body.  I think AlwaysRosie mentioned in a previous posting that most of our immune system is in our digestive tract. So foods play a big roll. I have a lot of food sensitivities and some allergies.  I'm struggling right now with my diet too.  I'm going to see a nutritionist and an immunologist to test for more allergies.  Allergies of any kind will cause inflammation in the body.  So that's good that you are on the ball with the food part of all this.
 
I'm glad you're not feeling so isolated. This really is a great place!
 
Ginny
I can do anything through Jesus Christ who strengthens me.  I have learned in whatever state I am in, to be content.  Phillipians 4:11-13

33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(stroke),Sjogren's, Raynaud's, seizure disorder, libman sach's endocarditis, vasculitis, sacroiliitis, Neutropenia, thrombocytopenia. Prednisone, Imuran, Coumidin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


Mariepoms
Regular Member


Date Joined Oct 2007
Total Posts : 61
   Posted 10/11/2007 11:40 AM (GMT -7)   

Hello All,

Thanks again for your input.I do appreciate it a lot.While at work last night i looked up some Rheumatologists at my hospital.There are not many to choose from but made an appointment for my second opinion.

BTW...i noticed diagnoses and meds under everyone's names.Is that what your diagnosis is and your meds? How long did everyone have symptoms before being diagnosed ? Has anyone made serious dieatary and lifestyle changes since their diagnosis?If so,has it helped?? I know for certain that the enviroment and diet can impact all autoimmune disorders.For the better or worse of it.I did extensive research on Autoimmunity and it's diseases for my dogs.As a hobby i breed and show Pomeranians and certain lines of Pomeranians have autoimmune problems and my research has allowed me to follow a different path with them.I no longer vaccinate my dogs and they eat only a home cooked diet and have a high omega 3's in their diet.My dogs dont suffer with some of the diseases known to the breed.Diseases like Autoimmune Hemolytic anemia,Addisons/Cushings,and Hashimoto's.I wonder how much diet can influence us with these Autoimmune problems??

I know i asked a lot of questions but would appreciate feedback.

Marie


AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 10/11/2007 2:15 PM (GMT -7)   
Marie . . . I also feed a holistic dog food to my dogs. I actually made my own food too for a long time and then found a couple of really quality foods.

YES our food is highly suspect. My daughter actually owns a "cow share" so she can get fresh milk (not pasturized) directly from the farmer. His cows are grass fed and that gives the milk and meat a way big amount of the omega 3's. The pasturizing kills enzymes that are necessary when drinking the milk . . . The rest of our food is so processed that even bugs won't eat some of it. I won't name brands . . . but daughter did experiment with her kids and put different things out in the yard. Certain cheese crackers were left uneaten by deer, squirrels, birds and bugs. They finally got rained on and broke down into the ground. . . . what is that??? We feed those crackers to our children thinking they are toddler food!!

We two Westies and litter of Westie pups right now and I actually have a lady traveling from Oklahoma to Ohio, twice, to get a puppy who will start its life on proper food and w/o immunization. (Not sure I'm totally against immunization of dogs . . . but they give the same amount of the med to a toy poodle as they do to a St. Bernard!!! Something is wrong with that. And they immunize WAY to many times till they've destroyed the immune system of the dogs. OK . . . stepping off my soap box now . . . rant is over.

I am not SUPER woman about my food. Per famous Dr. OZ, I've taken to looking at the first 5 ingredients on each package. If the any of the first five ingredients are hydrogenated oil, partially hydrogenated oil, sugar, high fructose corn syrup, enriched flour or bleached flour (whole wheat is good). This way, I'm not eliminating every item in the grocery store, but I am getting rid of super offenders. I'm also trying to eat more whole foods.

Sugar causes inflammation so that is out too. It is hard to start this kind of eating . . but if you ever go back to it you end up waking up in the morning feeling like a truck hit you while you were sleeping.

Glad to hear about your Pom's *big smile* . . .

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, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

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


Mariepoms
Regular Member


Date Joined Oct 2007
Total Posts : 61
   Posted 10/11/2007 5:08 PM (GMT -7)   

Hi AlwaysRosie,

BTW..LOVE your name...;) I'm glad you see the connection of food and autoimmunity.I mention this to my primary MD and he kinda gives me this blank look.As if i'm saying something crazy.Your so right about the Partially hydrogenated oils...that stuff is POISON.I noticed a while ago that certain foods gave me TERRIFIC headachces and just an overall crappy feeling.Sort of like a hangover feeling.I wonder how long i have had a high ANA now.The Rheumatologist said i may have had this for years.Eventhough i still dont know what i have yet.

Back to diets for a minute.YES,we do DESTROY our foods by processing it.Whole raw food is best.It has all the enzymes and nutrients intact.I have researched diets and the connection to autoimmunity about 7 years ago.Commercial dog food is CRAP and really causes lots of damage.Well enough about dog food but we can all benefit from a Holistic diet and foods that are as close to their natural state as possible.I had surgery for a benign breast tumor two years ago.Before the biopsy came back i totally revamped my diet.Red meat and chicken was out.Too many hormones and antibiotics.Sugars were cut down as they feed tumors so i made some changes two years ago.I didnt cut out the ''white fluffy stuff'' that Dr.Weil says causes inflammation.The white fluffy stuff is white breads,white flour,cakes ect...I cut down on them but should have avoided it alll togther.I just gave up dairy last week.I'm supplementing with a Calcium/vitamin D/Magnesium now.I'm replacing milk protein for soy protien now.I hope this helps.I also started a Omega 3 supplement along with my new breakfast drink that has lots of ground organic flaxseed meal.

As for vaccinations,if you must vaccinate your Westies only do puppy vaccines.There is NO NEED to do annual vaccines.There is a LOT of info online about this now and new vaccine protocols are in action now.There is a strong connection for autoimmunity,DNA damage and vaccines for certains lines and breeds of dogs.I wonder how much damage was done to us when we got our Immunizations as babies.Lupus and it's relatives Scleraderma,Sjogrens are all genetic and i wonder if having vaccines somehow damaged our DNA because we have a predisposition to these problems.Too late now but just a thought.....

Marie

 

 


AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 10/11/2007 5:54 PM (GMT -7)   
Marie . . .

Thanks . . . my screen name was chosen because my cheeks are "Always Rosie" . . . LOL!!!

We are forced in Ohio to have Rabies tags and vaccine every three years. I have discovered a way around that though. If you have the vet draw blood and they send it to a special lab, the lab can show that the rabies titers are high enough to protect the dog . . . I understand that the state will accept this so that we can receive a current rabies tag. I haven't known about this long enough to try it out, but my sil has.

Watch how the soy affects you . . . some lupans cannot tolerate soy or estrogen. I'm with you on the white fluffy stuff. I've switched to whole grain breads and I make a lot of our own desserts. Tonight it was fresh apple crisp with the topping made out of oatmeal, walnuts, cinnamon, nutmeg, cannola oil, butter and 1/2 the normal sugar. We aren't totally on board . . . but we really try. We've also been very conscious of fiber and I sometimes have 1/2 of a cooked squash for b'fst or lunch. Mmmmmm . . . easy and full of fiber and vitamins. Very satisfying too. I went to a fruit market today (30 minutes away) and bought lots of stuff while it is in season.

I wonder about the vaccines too . . . but I actually PLAYED with mercury when I was only about 7 years old. I was told not to touch it and of course, I had to check it out. Wow . . . it was so cool how it scattered into little bee bee's and then joined together in a puddle . . . anyway, I think I may have mercury poisoning. skull I should get that checked at some point. skull

Nice chatting!!!

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, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

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


Mariepoms
Regular Member


Date Joined Oct 2007
Total Posts : 61
   Posted 10/12/2007 3:49 AM (GMT -7)   
Hi AlwaysRosie,

Thanks for the tip on the soy protien.You know,come to think of it.When i have PMS; i sometimes feel like i have been hit my a truck.Some months are better than others and i dont have any PMS related symptoms.I need to begin that diary so i can see what triggers these symptoms and what is effecting my estogen levels most.

My Mom had symptoms of Lupus for a LONG time while in her late 30's and 40's.She absolultly REFUSED to go to a doctor.She's one of those 'self diagnosers'.She would kinda joke years ago when she would be stiff and achey and say ''oh,i have Lupus allright''.This was before she went into menapause and during menapause her symptoms were worse.She is now 56 years old and done with Menapause and claims to have no symptoms of Lupus anymore.Do people with Lupus typically have more flair ups before and during menapause?? I bet there is STRONG hormonal influenece.My Asthma and allergies act up with PMS.I usually feel my best two weeks into my cycle but that only lasts a few short days.

BTW...your lucky that you can do a titer for the rabies.Here in New York they give us a hassle.

Marie

AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 10/12/2007 8:20 PM (GMT -7)   
Marie . . . I haven't tried the titer for rabies . . . but will have to try it next year. If that doesn't fly, I'll send away for rabies vaccine, keep the tag and throw away the injection!! My vet can't treat my dogs for other issues if they don't have current rabies vaccines. Mwaaaa ahhhhh ahhhhh . . . .It's a shame I have to throw my character out the window to save my dogs.

I am hoping to have the same outcome as your mom. I officially reached menopause on October 1. One full year w/no period . . . yeahhhhhh!!! Anyway . . . I still have to be very cautious about physical activity . . . but I actually have a training schedule to try and increase it. I'm determined to find the maximum my body can handle. Of course, being very cautious that I don't cause a flare. I am almost 55.

Yes Lupus IS very sensitive to hormones. Many Lupans go vegetarian and some opt for hormone free meats and such. Organic milk would be a plus because most other cows have regular dosings of hormones and antibiotics. But, we've had topics here about age and disease activity. I think it partially depends on bad your lupus is to begin with. I've never had organ involvement and I feel that I am much less ill than most here.

Yes . . . a diary is a great idea.

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, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

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


Mariepoms
Regular Member


Date Joined Oct 2007
Total Posts : 61
   Posted 10/13/2007 5:25 AM (GMT -7)   

AlwaysRosie,

You made a very interesting statment on how you have no organ involvment and this is what i'm curious about but want to tell you about my Mom first.My Mom was never diagnosed but were both certain she has Lupus or some sort of Autoimmune problem.She would always tire so easily and going in the sun would TOTALLY wipe her out and give her bad diarrhea.She would be sick on the couch for almost two days after going to the beach.She would complain of pain a lot too.When i was a kid and in my 20's I thought she was just being lazy and didnt want to be bothered with me or the family.She would say ''something is wrong with me;i think i have Lupus'' She WAS also VERY emotionally explosive.Now that she is in menapause she is like a new person.Like i mentioned before,she never would go to a doctor cause she said she would never take the medication for Lupus anyway.So my point is this...if we seek out a diagnosis early and take some of the meds which are immunosuppressive are we benefiting or making this autoimmunity worse?? .Do you take any Meds for your Lupus and when were you diagnosed? For some reason i dont think i would take any meds unless it was 100% abosolutly needed.I would rather try and diet,relaxtion exercises and supplemental approach first.I have an appointment on the 16th for a second opinion.

P.S.I bet you will begin to feel better soon.My mom has not had a period in almost three years and she claims to have more energy now than ever before.She is certainly more pleasant too and never argumentative like she used to be.I used to walk on egg shells with her and now she's like a sweet little lamb now...lol.

Fran


AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 10/13/2007 6:09 AM (GMT -7)   
Fran . . . Hello Fran . . . sorry, I thought your name was Marie!!!

Thanks so much for sharing that ray of hope.

My symptoms started in my pre-teens with chronic headaches. I also had "the flu" a lot!! as a child and when I got "the flu", I would relapse very easily. I was a strong, healthy child otherwise and quite the tom-boy. I had pain in my hands from about 20 years old (not severe pain, just annoying pain). Oddly, during my pregnancies, my headaches cleared and my various aches and pains disappeared. When I mentioned this to my OB/GYN, he said, of course you feel better, when you are pregnant, your body makes more cortisone!! That should have been a big clue!! I went on into my thirties and tried to get help for chronic fatigue and was told it was depression by 3 doctors. I did not understand depression and I "knew" that I was not depressed. I was very happy with my life and my family etc. etc. Finally yet another doctor suggested that I try an anti-d and it made a HUGE difference in my life. I had less pain, and the kids seemed to get along better, hubby seemed much sweeter, etc, etc. . . . then I realized that I really did have a chemical imbalance of some type that was causing my short fuse and misinterpretation of the world. But then one issue after another, requiring repeated physical therapy (shoulder, forearm, wrist, back, chest muscles, hips). . . and the malar rash, hair falling out, sun sensativity (was always an issue), rashes etc. Any workout program always failed because it would just through me into the fatigue and pain. Trying to get my doc to consider lupus caused him to tell me everything was in my head . . . but long story short, a derm sent me to a professor derm at Case Western Reserve University and several visits there and many students marching in and out to try and "guess the problem" . . . and she dx'd me with SCLE (subacute cutaneous lupus). Then a succession of doctors, ortho, spine, pain, gastro, etc. and I FINALLY was steered to a Rheumatologist (by folks here and at my first local Lupus Foundation Support Group meeting). I could just cry for all the time I spent kicking myself to try and work harder and get more done and push, push, push myself. . . . and none of these doctors knew enough to send me to a rheumy.

Anyway . . . back to the question about the drugs . . . I was put on plaquenil and after a variety of anti-inflams were tried, ibuprofen was the most effective for me. Gradually many other meds were added, high blood pressure meds, saliva and tear producing med, methatrexate , etc. until I was taking about 10 different prescription meds. Last December I got violent vomiting and diahrea . . . it was awefull . . . I couldn't take any of my meds, I couldn't even look at the pills, lest I'd barf again. Three days of that and then it calmed . . . but I couldn't look at those meds. Then I realized MY PAIN WAS GONE!! Hmmmmm maybe I didn't need the meds. Well, at the same time, I lost my rheumy because he stopped taking my insurance. So I didn't run this by a doctor, but hey, I felt better. I went 6 months feeling almost normal (as long as I didn't overdo). When June hit, I began the succession of ills . . . the domino affect . . . and I got right back on the plaquenil and ibuprofen. I really didn't think it was ever going to control my pain and other issues, but finally got to feeling better. Meanwhile I am still waiting (November 15) for my new rheumy appt. He should love me . . . I hope to be quite well by then.

Re: the meds . . . I realized in June that the plaquenil takes 6 months to build in your system to its full potential . . . then it is logical that it would stay in your system for a good while after you stop taking it. I likely felt better, in part, because the plaq was still working. The rheumy had told me I would take at least plaq for the rest of my life.

I do think the meds are important. I was going downhill before I took the plaq and the meth . . . I'm not sure what would have happened w/o it.

I'm glad your mom has a more even temper now. Its awful living in a brain that misfires. I bet an anti-d would have been very beneficial. BTW: I am not on the anti-d right now and I will absolutely take it again if I need to . . . but one of my worries about taking it was wondering if I could ever function w/o it. I'm doing great in that department right now.

Sorry this got so long. I guess we really needed a phone call!! LOL

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, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

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


Mariepoms
Regular Member


Date Joined Oct 2007
Total Posts : 61
   Posted 10/13/2007 1:45 PM (GMT -7)   

Hi AlwaysRosie,

When i signed up to this forum it said to use another name so i used my middle name Marie.I'm Fran Marie :-)

Thanks for sharing your history and sorry to hear about those severe symptoms you had recently.I can only imagine how uncomfortable that must have been for you.Glad your feeling better though.

That is very interesting how your symptoms improved with the pregnancies.I have M.S. Patients who said the same thing.That their M.S. symptoms go into a total remission with their pregnancy but i get them at the hospital after childbirth with a severe exacerbation.I believe the stress,severe drop in hormones and like you said...cortisone.I bet that drops drastically too and brings on the exacerbation.

Mom and I have been playing detective and looking back at symptoms we both had and just over looked as they were not severe enough to seek treatment for.I also had hand pain for a long time now.Like you,it feels more annoying than anything else.My Mom for YEARS and YEARS had what she called ''a frog in her throat''.It sounded like a backwards burp.Like a burp/belch that was stuck in her esophagus.She was always so uncomfortable with that and she said it felt like pressure on her esophagus and she even had trouble swallowing from time to time.It would scare the heck out of me when i was a kid.I thought she was choking.It would disappear just as fast as it came on.She would also ALWAYS complain of feeling like she had cotton in her mouth.She would always have to suck on a lozenge or something like that.Now,that we look back at these things.I bet she was having symptoms of Sjogrens.Guess what though,now that she is in menapause she has NO dry mouth and i have not heard her frog in years now.We were sitting at lunch the other day and she said oh crap...you know what;i have not had any problems with my frog in a long time.So for her,menapause has many perks...

My Mom as a kid had severe back and leg pains.My grandma took her to several doctors and they said it was all in her head.She couldnt and didnt have the strength to play like the other kids.I never had that as a kid though.I'm now just getting symptoms of feeling tired more easily.Over the past year or so.I force myself to keep on keeping on.I guess i should just give in and rest.

Fran Marie


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 10/14/2007 8:59 AM (GMT -7)   
Hi Fran,

Like your mom, my mood mellowed after menopause, but in my case it was completely attributable to estrogen. When I don't take estrogen, and I take a compounded tri-est, I'm a raving maniac. It' psm times ten and it doesn't go away. Every rheumy I've seen has told me that I'm on a low enough dose that they don't have any issues with my taking it. Without it the quality of my life and relationships would hit rock bottom. It's such a relief to live without the ups and downs of PSM.....finally!

Strangely, I was diagnosed with SLE after menopause although I suspected I had it for 20 years prior to that. While I was having children I didn't have any problems or symptoms. My mother also had lupus and she was also diagnosed after menopause. We are all so different.

Have you heard of Jerry Seinfeld's wife's new recipe book? In an attempt to get her children to eat veggies she started pureeing vegetables and adding the puree to all her food. She puts pureed beets in meatloaf and brownies, pureed squash in mac and cheese, pureed cauliflower in scrambled eggs, etc. and her kids and their friends all love her food. I haven't bought the book yet but it sounds like a great way for all of us to get more vegies in our food. Granted, raw vegetables are the best but I really like her strategy.
Lupus, Sjogren's, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, multivitamin, calcium w vit D, fish oil, aspirin


Mariepoms
Regular Member


Date Joined Oct 2007
Total Posts : 61
   Posted 10/15/2007 5:55 AM (GMT -7)   
Hi Patty,
 
Thanks for the reply.This whole menapause thing was something i was FEARING....lol.Now,i'm kinda looking forward to not having the ups and downs.I had a AWFUL weekend.Friday and Saturday night was probably the worst nights i had.I knew i would be ovulating this weekend.I can feel when i'm ovulating.My hubby and i went out to dinner and i eat Shrimp(not great for me) and cheated a bit and had cake after dinner.....all i will say is OUCH!!!! Soon after eating and coupled with ovulation.My body felt TERRIBLE!! The pain was everywhere.Funny thing about the pain i get is that i only feel it if i move.If i just lay down and rest and dont move i dont feel pain.It's kinda the pain you feel if you overworked a muscle with working out.It hurts during movement but not at rest.Has anyone experienced that??
 
I HATE PMS and all these ups and downs.It just plain old STINKS!!!!!!!! mad
 
Fran

AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 10/15/2007 8:05 AM (GMT -7)   
Hi Fran,

I have several types of pain . . . but my very worst pain is when I am resting. I think its the nerve pain and its in my hips.

There is another type of pain that happens when I first stand up. Like all the joints and muscles have to struggle to do their job . . . so, for a few minutes I'm a real gimp and I hobble. I've learned how to hide this type of pain. For instance, if I'm in a restaurant and I get up from my seat with this pain, I'll set my purse on the table and pretend to look for something in there . . . just anything to stand still for a minute while my body adjusts AND so the others are already walking away so I can gently hobble behind them. Hubby is onto it and he takes my arm and kindly walks me out of the restaurant.

YUP!!! I looked forward to no more PMS too. I gotta tell you, its great!!! But honestly, the anti-depressant I was taking really helped with that too. Just a thought.

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, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

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

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