New and Confused

Hello Jessie,

 

Welcome to the forum.  It sounds like you have a lot going on.  I had to look up Mast Cell disease because I had never heard of it.  Wow, it is very similar to how lupus acts.  Basically an overactive immune system.  What is interesting is the overlap of symptoms.  They both mimick each other. 

 

I have had in the recent past, an increase in my allergies as well.  Mostly to foods.  I never used to be allergic to any kind of food.  Now I have a list of about 10 things.  This is making me think a lot about my own situation!  I'm glad you're here.  We can learn from you and you from us!

 

Do you mind me asking how your doctors decided to test you for Mast Cell?  What were your symptoms?  What made them think that it wasn't lupus symptoms?  I'm very interested in learning more from you. I"m having some new problems and many of them fall into the Mast Cell category, now that I have read up on it.

 

Please ask us any questions you like regarding your lupus.  We're a tight bunch here with lots of knowledge and we love to support each other.

 

Talk to you soon,

Ginny

Hi Jessierose,

 

Thank you for your quick response!  I was doing more investigating about Mast Cell disease.  I don't think I fit the criteria.  When I read "blood pressure" issues, that leaped out at me, as I'm having HIGH bp issues right now.  But MCD causes LOW bp issues, so that's not me....

 

Anyway, I wanted you to know that lupus will make us more suseptable to allergies.  Just because the immune system is hyperactive, which is exactly what an allergy to something is.  A hyperactive immune response.  I find it very interesting that there is another disease out there that will mimick lupus to such a degree.  I think the fact that you have joined us here will bring insight to a lot of us!

 

How are you doing with the lupus and fibro issues?  Are you finding it difficult to distinguish a lupus flare up from a fibro flare?  It can be almost impossible to figure that out!  One way I am able to know, and this was mentioned to me by my rheumatologist, was that if I'm "flaring", I should increase my prednisone.  If I feel BETTER, then it is a lupus flare.  If I feel WORSE, then it is a fibro flare.  Fibro and prednisone are like oil and water.  They don't get along!  So, if you're struggling with that, there is a good way of figuring it out!  And it only takes a few days of increased prednisone to see the difference in how you feel.  Even a small increase of 2.5 or 5mg will change how you feel.

 

Have a good evening Jessie, talk with you soon,

Ginny

 

 

Hi Jessie,
Just wanted to tell you that you are not alone. When I had the skin allergy test done, both arms swelled so badly that it was impossible to see anything I wasn't allergic to! So, they took blood for the RAST test, same results! At my worst, I was self-injecting with .2 ml of epinephrine two times a week. Since I've been on plaquenil for the lupus (since 2004), my symptoms have greatly improved. I still carry the epinephrine and syringes, but I haven't needed them for over 6 months, now. I also carry an epi-pen for emergencies. I have learned to avoid many activities, foods, chemicals, etc. that trigger reactions, and that has made a huge difference. But I won't lie, it took several years to get to the point that I felt things were under control. Lately, the lupus has been flaring, so the rheumy added Imuran to the mix. So far, I haven't noticed a change, but it's early days, yet. The good news? Even with the recent lupus flares, the allergy problems are staying under control. The bad news, I eat very little. Beef, chicken, white rice, corn, green beans, carrots. The list of stuff I can't eat is endless.
Finding a balance is key. If I am having a relatively symptom free day, I might be a little more daring in my food choices. You learn through experience. Good Luck. Sorry for the super long post!