Not 100% convinced this is Lupus??

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Mariepoms
Regular Member


Date Joined Oct 2007
Total Posts : 61
   Posted 11/17/2007 6:16 AM (GMT -7)   
Hi All,
 
For those who read my posts you will remember i went to one Rheumy who said basically said 'go home Your fine'.I read his report to my primary MD and it read this ''Pt with Migratory Myalgia and Arthralgia.Positive ANA and SSA.No dry eyes or dry mucous membranes ect ect..He wrote NO CONNECTIVE TISSUE DISEASE.Ok,sat on that for a few days and made one more Rheumy appointment.She did a complete physical exam and more extensive blood work.She also said I DO NOT have arthritis but agreed with the Migratory arthralgia.Xrays of my knees,hands,wrists were negative for arthritis.All the blood work she did came up positive for a Lupus patient so she diagnosed me with SLE Lupus and sent me home with Plaquinil 400mg per day.Ok,i accepted the diagnosis eventhough i feel fine now and have been feeling MUCH better.No fatigue.Never had overwhelming fatigue except for the day that i felt sick which brought me to my doctor.Never had rashes,which the second Rheumy thought was out of the norm for Lupus pateints.I do get some joint pain from time to time but it doesnt keep me from my doing my daily routine.
 
Now,i had to complicate everything and go for yet one more opinion.I went to a Rheumy in New York who is the director of the Rheumatology department at his hospital.He's pretty well known here in NY.I wanted to know if i should take the Plaquinil.I really didnt want to know if i have Lupus or not.Though he said something interesting.He said he was not 100% convinced i have Lupus.He said i dont have enough of a 'Clinical picture' for Lupus.He said,most patients with SLE Lupus are much ''sicker'.He also agreed it was odd that i ddint have rashes.He looked at my blood work and said 'he would agree with the diagnosis based on the blood work and the joint pain but he's not 100% convinced it's Lupus''.He said to take the Plaquinil and most Rhuemys would agree to take it.He said i'm not Immunosupressed and go back to work.
 
Since all this started i totally changed my diet.I intentionally lost weight.Lost 10 pounds so i now weigh 134lbs.My blood pressure came down from 160/102 to 130/80.Though i'm on a strict anti-inflammatory diet and Benicar Htz 40/25.My Asthma has improved A LOT since the dieatary changes.I avoid dairy at all costs now.
 
So what is the deal?? What does that mean that ''He's not 100% convinced this is Lupus''But he said to treat it as Lupus.I feel like i'm just waiting for the other shoe to drop.I'm a little confused here now.I'm going to start the Plaquinil but I'm still confused.
 
ANY feedback would be appreciated.
 
Fran

gloryroad
Regular Member


Date Joined Oct 2006
Total Posts : 193
   Posted 11/17/2007 7:56 AM (GMT -7)   
I'm sorry you've had so much confusion. Lupus and other connective tissue diseases are not all that easy to diagnose - and as you've seen, different Rheumatologists have differing opinions. If you read the posts on this forum, you will see how many people have had similar experiences in getting diagnosis. I was feeling better (but not great either) after I started plaquenil and was convinced that my problems were depression related so I stopped taking the plaquenil. After about a month, all of the fatigue and aching came back. If you really feel there is nothing wrong with you, you could try coming off of the plaquenil and see how you do. That will be the true test of whether you need it or not. If there is nothing wrong, then there is no need to be putting a drug into your body that is not doing you any good.
Gloryroad


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 11/17/2007 7:58 AM (GMT -7)   
Hi Fran, I'm sorry you have to go thru this. All the doctors can make you crazy. I will tell ya that you are going thru the same thing most of us have or still are going thru. It can take months or years to get a correct diagnosis. Somtimes the doctor just keeps seeing you until they can put enough symptoms together to come up with or rule out a DX. As for the rash. If you google Lupus rash you'll see that there are alot of people that never get a rash. Than there are others that get a rash once and awhile, than still others that have Lupus that don't get a rash for years. I've been DX'd and unDX'd and Dx'd again. LOL. They all say take the plaquenil. So I take 800 mil. a day. The fact that you are confused is not surprising. It's a very confusing disease. I can't tell you what to do but if i were you I'd keep taking the plaqunil and start wrting a jounal. Try taking your temp 3 times a day and write it down. Any little thing that you think may not be important just may mean something to your rheumy. If you do get a rash or any swelling or anything take a picture of it more than likely you won't have it by the time you see your rheumy. Doctors will treat your symptoms even without a DX so don't be surprised by the meds that they give you. I'm not saying to take anything and everything on blindfaith but it is not uncommon at all. If you start running a fever or anything try to get to your doctor ASAP.
hang in there I know it's frustrating but you aren't alone here!
hugs
carol
God Bless
Lupus like symptoms, with pbc symptoms,but of course that is subject to change in a moments notice! End Stage COPD w/CHF, Cervical Cancer survivor.  Osteoporosis,osteoarthritis
Prednisone,Plaquanil800mg,vicodin 3x5mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax x3 
Only two defining forces have ever offered to die for you: 1. Jesus Christ 2. The American G. I
 
 
 


Gidget^
Regular Member


Date Joined Aug 2007
Total Posts : 171
   Posted 11/17/2007 7:15 PM (GMT -7)   

Hi Fran,
I've never heard of an anti-inflammatory diet ... can you tell me about it?

Thanks!


Gidget^
 
SLE 9/07, FMS '90's, Spinal Stenosis, Osteoarthritis, Sinus Tach, PVC's, Kidney Stones, RLS, Parotid Neurofibroma 8/04, Cervical Cancer 9/06
Clinoril, Toprol XL, Prozac, Zyrtec-D, Zocor, Vitamins B6 & B12, Folic Acid, Loratab ,Percoset, Toradol
 
There is no psychiatrist in the world like a puppy licking your face.
 
 


Mariepoms
Regular Member


Date Joined Oct 2007
Total Posts : 61
   Posted 11/18/2007 7:08 AM (GMT -7)   
Hi Gidget,

Go to Dr.Weil's website and type in Anti-inflammatory diets.I am following his pratices and supplement program.

Avoid known inflammatory foods....that is dairy,white flour and all forms of white fluffy stuff.Like breads and cakes.Dairy is a BIG no no and causes inflammation and excess mucous.Avoid all forms of wheat flour and go with WHOLE grains.If possible,avoid animal protiens like chicken and beef.I only eat Salmon now and have it at least 4 times a week.Foods in the Nightshade family cause inflammation.These foods are tomato,eggplant,peppers and WHITE potato.Sweet potato and yams are great and dont fall into the Nightshade family.I have avoided all of these foods and they were my favorites but I'm eating to live not living to eat anymore.

I bought Dr.Weils supplements.I take the Vitamin/mineral and antioxidant formula.I also take Turmeric Powder and Ginger tea.Both have potent anti-inflammatory and antioxidant properties and has some clinical studies to back the theory.I also take Purified Fish Oil 2,000 mg daily and Ground flaxseed meal daily.The flax has 2,400mg of Omega 3 fatty acids so i take a total of 4,400mg of Omega's daily.Both supplements work to decrease inflammation and improve circulation.I'm taking Grape seed extarct 200mg daily too.Good for circulation,vasculitis and an antioxidant.

I bought the Jack Lalane juicer and began juicing organic veggies and fruit but i would ask your doctor if it's OK to juice when or if your immunosurpressed.If you have a low white count and total Lymphocyte count then i would check with your doctor about eating fresh fruits and veggies.

This is what i do and i think it is helping.My blood pressure is down and i feel better.It takes several weeks to get results though.It's not a quick fix and takes LOTS OF DISIPLINE.Most people find this difficult to follow and dont like the lifestyle change.Most health care practioners dont know much about these diets and may not even agree with them.It's up to us to be proactive and look at the current reasearch about these diets for Autoimmune/inflammatory diseases.

Hope this helps and sorry to ramble on and on

Fran

gloryroad
Regular Member


Date Joined Oct 2006
Total Posts : 193
   Posted 11/18/2007 8:42 AM (GMT -7)   
Good for you to be so disciplined. I tried going wheat free/gluten free for a whole month and it was very difficult. My allergies were definitely better and so was my energy but I went off the wagon and now just try to limit my wheat intake to about once a week. It is a very difficult diet to follow (in addition to all of the other changes you've made) so my hats off to you!
Gloryroad


Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1299
   Posted 11/18/2007 9:04 AM (GMT -7)   
Fran,
 
As others have said it is not that easy to diagnose lupus or many other AI diseases.  I have mctd (lupus, scleroderma and polymyositis) and I might have had it since 1990 (low platelets and mild anemia) but had no obvious symptoms and felt great.  In 2004 my platelets went even lower....still no other symptoms and felt great.  After many tests over 9-10 months by a hematologist he speculated that I might have lupus.  2 months later I had the first flare and 2 months after that mctd was diagnosed.
 
It can be very difficult and some lupers can wait years to get a definitive diagnosis. Or get conflicting opinions about what they have.  Frustrating but not all that uncommon.  Also keep in mind that symptoms can come and go over time which make it even more difficult to diagnose. 
 
Bill
Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's esophagus.
 
Meds: prednisone (6mg & tapering), 75mg imuran, lisinopril 40mg, maxide 37.5/25mg, norvasc 5 mg, folic acid, potassium, aciphex 20mg, multi vitamins.
 
Maintain your optimism and you can beat the odds.
 
"Although the world is full of suffering, it is also full of the overcoming of it."  Helen Keller
 
 


phndoc
Regular Member


Date Joined Oct 2003
Total Posts : 495
   Posted 11/18/2007 3:06 PM (GMT -7)   
Fran, remeber that not everyone will get the rash, I don't. It is different for everyone.

Golyroad, I feel you pain!!! I did the samething once, I will never do that again. I was feeling better and thought the samething.
So, I came off my meds (opps!!). Next thing I knew I was out of work for a month and in very much pain.

Best to all, frank
PLAQUENIL, FLEXERIL, CELEBREX - UCTD, BENICAR - HIGH BP, SINGULAIR - ALLERGIES,  LEVITRA, AND METROGEL FOR ROSACEA 
Enjoy what you can today and leave the rest for another day.
 
Frank
 


Mariepoms
Regular Member


Date Joined Oct 2007
Total Posts : 61
   Posted 11/19/2007 5:45 AM (GMT -7)   
Thanks for the replies.....I'm going to start the Plaquinil today and i will be going back to work on Friday.I had both Rheumys and my primary MD suggest i get the Flu/pnuemonia shot because i'm a Nurse and work in the Hospital.I do agree with them to a certain extent BUT is it safe to stimulate an already overactive Immune system with vaccines???? I'm very careful at work and ALWAYS wash my hands and wear a mask for any patient who has an active cough.

Do any of you take the flu or pnuemonia vaccines? What was the outcome after being vaccinated?

Fran

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1299
   Posted 11/19/2007 7:00 AM (GMT -7)   
You should get flu and pneumonia shots.  I get flu shots annually and had a pneumonia shot just before I got sick.  My doctors insist that I get the flu shots.  I have not heard of any problems posted on this forum or the other 2 that I frequent.
 
Bill
Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's esophagus.
 
Meds: prednisone (6mg & tapering), 75mg imuran, lisinopril 40mg, maxide 37.5/25mg, norvasc 5 mg, folic acid, potassium, aciphex 20mg, multi vitamins.
 
Maintain your optimism and you can beat the odds.
 
"Although the world is full of suffering, it is also full of the overcoming of it."  Helen Keller
 
 


phndoc
Regular Member


Date Joined Oct 2003
Total Posts : 495
   Posted 11/19/2007 11:42 AM (GMT -7)   
My doctor will not give me one.
PLAQUENIL, FLEXERIL, CELEBREX - UCTD, BENICAR - HIGH BP, SINGULAIR - ALLERGIES,  LEVITRA, AND METROGEL FOR ROSACEA 
Enjoy what you can today and leave the rest for another day.
 
Frank
 


Mariepoms
Regular Member


Date Joined Oct 2007
Total Posts : 61
   Posted 11/19/2007 12:42 PM (GMT -7)   
Hi Frank,

Did your doctor ever tell you why?? I'm a little reluctant to get one.I do know a little bit about Autoimmunity and how vaccines affect autoimmune related conditions in dogs.Now,were not dogs but the pathphysiology is probably the same.I'm just guessing though.I do know that if any dog has lets say Autoimmune hemolytic anemia or even Hashimoto's the vets DO NOT give any booster vaccines.Most will avoid rabies vaccines too but the NYS law sometimes forces owners to give the rabies and the effects on the dogs are usually pretty bad.There is also a problem in double coated breed called Alopecia X.It is Autoimmune and there is a big study going on at Purdue University on how the vaccines trigger the autoimmune response in dog familes that are known carriers of AI diseases.Sorry to go off track but i'm just wondering if there is any connection and will getting the flu/pneumonia shots make my condition worse.....

The reality is this....you get a vaccine and your body then begins to try and bulid immunity( a titer) to the disease your vaccinating for.Your body does indeed get slightly immunosupressed and your temporarily more susceptible to virus'.That is why people say 'oh i got the flu shot and got the flu'.It's not that you got the flu but you were more open to diseases while trying to bulid a titer.Now,for a persom with Lupus and any AI problem wouldnt we be at even a higher risk after being vaccinated?? That is what i want to know.....

Fran

phndoc
Regular Member


Date Joined Oct 2003
Total Posts : 495
   Posted 11/19/2007 1:00 PM (GMT -7)   
Yeah, he is very afraid that it will put in me into some bad fuatige and go through a flare-up. Fran, thank you, I guess that is were my doctor was caming from.

frank
PLAQUENIL, FLEXERIL, CELEBREX - UCTD, BENICAR - HIGH BP, SINGULAIR - ALLERGIES,  LEVITRA, AND METROGEL FOR ROSACEA 
Enjoy what you can today and leave the rest for another day.
 
Frank
 

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