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Lupus

Celiacandme

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Celiacandme Apprentice
Celiacandme
Posted

My rheumatologist called me earlier to tell me that my blood work confirmed lupus and that I needed to start plaquenil immediately. (200mg twice a day)

 

I was diagnosed with celiac's just over 5 months ago and have been 100% gluten free.

 

Just sharing my update, I guess.

 

If anyone has any advice feel free to share. Especially if you take plaquenil. Feeling lost too often lately!

 

~Julie

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LauraTX Rising Star
LauraTX
Posted

I have lupus, celiac, and common variable immunodeficiency.  For the lupus I take plaquenil and Methotrexate. Plaquenil is generally well tolerated with few immediate side effects, the most common is maybe some constipation.  It takes a while to work.  Also you may want to see your eye doctor within a few months of starting it so they can do a good baseline exam.  It rarely can have a long term side effect of affecting your eyes.  So getting a good exam now will help them be able to monitor better.

 

They may start you on more meds, and just have patience and take things as they come.  Don't push yourself too hard, just do what you are able to do each day.  I personally avoid lupus support groups and forums because a lot of it is incredibly depressing.  I just try to be grateful for what I can do and what I do have, can't do anything else really or you will be depressed all day.  If you feel like you are getting too bummed out about it, talking to a professional will help.  I have really learned to not tunnel focus on my illnesses, sometimes it is hard on bad days, but in general being positive about what is there helps a lot.

Marilyn R Community Regular
Marilyn R
Posted

I have Lupus too.  I personally have not been able to tolerate the Plaqunil, but I have a long history of not being able to tolerate meds.  If you have a difficult time tolerating it, I read on the Lupus Foundation of America's forum that some people cut the dose in half at first, always take it with meals, then graduate up to the 200 mg. per day.  

 

Wish you well,

M

Celiacandme Apprentice
Celiacandme
Posted
  • Author

I have lupus, celiac, and common variable immunodeficiency.  For the lupus I take plaquenil and Methotrexate. Plaquenil is generally well tolerated with few immediate side effects, the most common is maybe some constipation.  It takes a while to work.  Also you may want to see your eye doctor within a few months of starting it so they can do a good baseline exam.  It rarely can have a long term side effect of affecting your eyes.  So getting a good exam now will help them be able to monitor better.

 

They may start you on more meds, and just have patience and take things as they come.  Don't push yourself too hard, just do what you are able to do each day.  I personally avoid lupus support groups and forums because a lot of it is incredibly depressing.  I just try to be grateful for what I can do and what I do have, can't do anything else really or you will be depressed all day.  If you feel like you are getting too bummed out about it, talking to a professional will help.  I have really learned to not tunnel focus on my illnesses, sometimes it is hard on bad days, but in general being positive about what is there helps a lot.

Were you diagnosed with lupus first or celiac? Do you feel the gluten-free diet has helped your lupus? What is common variable immunodeficiency?

I have Lupus too.  I personally have not been able to tolerate the Plaqunil, but I have a long history of not being able to tolerate meds.  If you have a difficult time tolerating it, I read on the Lupus Foundation of America's forum that some people cut the dose in half at first, always take it with meals, then graduate up to the 200 mg. per day.  

 

Wish you well,

M

Thank you. What do you take instead of plaquenil?

LauraTX Rising Star
LauraTX
Posted

Were you diagnosed with lupus first or celiac? Do you feel the gluten-free diet has helped your lupus? What is common variable immunodeficiency?

 

 

In 2012 I was having GI problems related to my gallbladder and GERD, and on Dec 31 I had an upper endoscopy at which they discovered an abnormal biopsy by accident.  That led to them doing bloodwork and in Jan they diagnosed celiac.  Also in Jan I was having a lot of joint problems and my doctor found a positive ANA and CRP in blood tests, sent me to a rheumatologist.  In March I was diagnosed with lupus and when they did the initial huge workup of bloodwork, they discovered I had low IgG and IgA, and sent me to an immunologist.  He diagnosed me with CVID (common variable immunodeficiency) in July.

 

So, 2013 sucked.  It was like bam bam bam.... lol.

 

Common Variable Immunodeficiency is usually something you are born with and generally found in young adulthood- usually only the very severe immunodeficiencies are found in childhood.  The IgG and IgA are types of generalized antibodies that form the basic part of your immune system.  These generally defend you before your body can make specific antibodies.  Before I got treatment, I was sick all the time and I caught everything and anything that came around.  Had recurrent sinus and respiratory infections.  Believe it or not, I had developed a severe germaphobia because my perception was that I was catching everything, and all of the sudden got this validation that I was not crazy!  I also have a reduced response to vaccines, about 60% so their solution to that is to give them over and over again.  The treatment for CVID is a medicine called IVIG (Intravaneous Immunoglobulins) which is an IV infusion I get every 4 weeks that contains mostly IgG.  It costs $15,000 per treatment. 

 

Thank god for health insurance. The way I budget for health care is I prepare to pay my plans out of pocket annual cap in January.  So when people complain about their $25 copay to see the doctor, it annoys me.  I also get P.O.'d when something comes to me owing zero and the worker goes "Oh you are so lucky!!!"  and then I tell them why it is zero, lol.

 

My celiac, lupus, and CVID are a trio of things I need to take care of together.  Autoimmune diseases are prevalent in people with CVID because the immume system basically doesn't know what to do and just goes haywire.  A lot of the lupus treatments can weaken the immune system so they have to be careful about how they treat me.  Taking care of everything together is the key to my health, if one thing is not attended to it is a recipe for failure.  The only lucky thing I have going is I am a "silent celiac" and I dont get glutening symptoms, just underlying damage and deficiencies/neuropathy.  Probably because it was caught by accident early into disease progression.  The down side to that is I don't know if I am inadvertently glutening myself so it makes me extra anal retentive, haha.

 

Imagine me trying to explain all that to a new doctor.  I have a printout I take with me.  LOL.

Celiacandme Apprentice
Celiacandme
Posted
  • Author

Similar here, Laura. Bam. Bam. Bam. I see why you have a printout to take with you. How often are your rheumatology numbers retested?

LauraTX Rising Star
LauraTX
Posted

A little less often now.  I think its been  months, my doctor is going to test them when I go in may.  When you are in a flareup they will test regularly, but when not in flareup, they will test every so often.  My doctor seems to go more by how you are feeling as an indicator of control.  I suppose that is what matters the most!

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  • 3 weeks later...
Marilyn R Community Regular
Marilyn R
Posted

Sorry it took me so long to get back to the forum.  I'm actually not taking any meds for Lupus, haven't for 2 years.  I sleep a lot  and read books.  My rheumy explained that if I couldn't tolerate the Plaqinall,, the other 2 drugs were even stronger and he thought I'd have a tough time with them.  He said the University of Miami is testing a new drug for Lupus though.  I do find the Lupus Society of America a very informational site. 

 

I don't drive anymore because of the neuropathy. 

  • 2 weeks later...
Celiacandme Apprentice
Celiacandme
Posted
  • Author

A little less often now.  I think its been  months, my doctor is going to test them when I go in may.  When you are in a flareup they will test regularly, but when not in flareup, they will test every so often.  My doctor seems to go more by how you are feeling as an indicator of control.  I suppose that is what matters the most!

I hope your May appointment goes well. That is if you haven't already had it.

 

Sorry it took me so long to get back to the forum.  I'm actually not taking any meds for Lupus, haven't for 2 years.  I sleep a lot  and read books.  My rheumy explained that if I couldn't tolerate the Plaqinall,, the other 2 drugs were even stronger and he thought I'd have a tough time with them.  He said the University of Miami is testing a new drug for Lupus though.  I do find the Lupus Society of America a very informational site. 

 

I don't drive anymore because of the neuropathy. 

Marilyn - are there certain foods you avoid because of lupus? I know alfalfa and echinachea are no's but anything else?

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