I am just not sure

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chacha1965
New Member


Date Joined Jan 2008
Total Posts : 5
   Posted 1/11/2008 8:58 PM (GMT -7)   
Hello, I was dx'd with connective tissue disorder. I have some abn labs. My doc says I don't fit the criteria for lupus, but the markers sugest a CTD. My symptoms are fatigue,dry eye,joint and muscle pain. I start Plaqunil next week. My Rhuemy suggested fish oil and DHEA. I started the fish oil but not the DHEA. I am so scared I might have Lupus. I don't fit the criteria but I could at anytime. I am going to focus on treating the symptoms but I still have anxiety about not knowing what is wrong with me. Does anyone here take DHEA?

AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 1/11/2008 9:29 PM (GMT -7)   
Welcome Chacha!!

Sorry you are having to deal with all of this. There is a link in my signature for "Lupus Resources". In that topic there is a post with suggestions for new members. Well worth the read.

Yup . . . lots of us have the CTD dx. Sounds like your rheumy is on top of things. There have been a few topics here about DHEA . . . but I'm sorry, I don't know much about it.

I was dx with lupus by one doc and then UCTD with another. I'm actually happy that keeps the Lupus word out of my medical files. As long as your doctor is treating your symptoms, the dx isn't too important. But there are several CTD's and it is very difficult to actually pinpoint the exact cause sometimes. Bottom line is that your immune system is attacking your healthy tissue. The Plaquenil will gradually slow that process. It takes several weeks to build in your system and about 6 months to reach its full benefit.

How old are you? How much fish oil and DHEA did he recommend? Was the DHEA based on blood work?? Its great sharing at this forum because we learn lots from each other.

I hope you make some good friends here.

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


BumbleBee1
Regular Member


Date Joined Oct 2005
Total Posts : 130
   Posted 1/12/2008 9:14 AM (GMT -7)   

 

 

Hello

The autoimmune connective tissue diseases are usually treated with the same sorts of medicines. It sounds as if you might have the sort of symptoms that's often called Undifferentiated Connective Tissue Disease, UCTD. That means there are no specific signs of any particular one. In the case of lupus there are only 4 specific signs. Many people who have a lupus diagnose could well have got an UCTD diagnosis from another doctor. There is not necessarily any difference, it all depends on how the person is affected and how badly.

There is no telling  at time of diagnosis how any of the diseases will develop. Many cases never get worse  and many are effectively treated with medication. Plaquenil is a very important disease modifying medication that can reduce overall disease activity which takes several months to fully kick in. People often need help with symptoms  in addition to whatever  disease modifying medicines are needed.

 Fish oil is supposed to help reduce inflammation. It's a source of omega 3 fatty acids and there are others. Cutting out refined sugar, animal fats and junk food will help too. Some people react badly to certain food items, but it is very individual.

Many people with lupus like disease are DHEA deficient so supplements are helpful. DHEA might help with general wellbeing but it can have some unwelcome side effects - deepening voice, facial hair, skin eruptions, and mood swings. It must be obtained from a reliable supplier which is often a compounding pharmacy.  Health food shop supplies are often not reliable.

 

Bee

 


chacha1965
New Member


Date Joined Jan 2008
Total Posts : 5
   Posted 1/12/2008 10:12 AM (GMT -7)   

Thanks for the replies. I am 42 years old. I did read that I should have my DHEA labs drawn before starting. I am nervous about the Health store brands my not be reliable. I am going to ask my Rheumy for a lab test and see if I can get a pharmacuetical grade DHEA if I end up wanting to take it. I am also nervous about the increased risk of Breast CA in females. I wondered if many of you take it. My Rheumy suggested 200 mgs per day. She also recommended 3000mg of fish oil.

Thanks for the info about what I should cut out of my diet. I started researching it and in the process of trying to eliminate the stuff.

 


BumbleBee1
Regular Member


Date Joined Oct 2005
Total Posts : 130
   Posted 1/12/2008 5:19 PM (GMT -7)   

 

 

I was tested and wasn't deficient. My rheumy isn't in favor of it as therapy, as he considers the long term risks aren't sufficiently well known so outweigh dubious benefits. If you get it on prescription your insurance might cover it. You might need an NSAID or even a short course of Prednisone to help you through until the Plaquenil  takes effect.

I don't know anybody who takes it, just a few who didn't like the side effects so stopped. However a number of lupus expert doctors are in favor of it especially to reduce prednisone dosage and risk of osteoporosis and great efforts are being made to get the manufactured version approved by the FDA.

 

Bee

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