[Ana_5678]

Hello all, I'm glad I've found this community.
My rheumatologist is 90% sure I have Lupus, based on my symptoms and a positive ANA (1/80) which I know is low and could be false positive. Will check again in 6 weeks.
Blood work also showed very high eosinophils (21%).
My symptoms are pain and swelling in joints, but a hand ultrasound showed healthy joints. Also other blood tests showed no signs of RA.
Every joint in my body hurts daily, it's worse in the morning and especially if I'm using them a lot. So mainly my hands and my knees and hips hurt the most. After a bath my ankles swell.
There's also numbness and tingling in fingers and toes (this makes me useless for the first hours of morning, I can't use my hands at all, it gets better during the day, though it never goes away completely), extreme fatigue, chest pain (there are days when I struggle to breathe or fill my lungs and yawn a lot trying to get a deep breath), mouth sores, dizziness and anxiety.
I'm waiting for results on an ENA panel, meanwhile I was prescribed Prednisone and Plaquenil (which I didn't start taking yet, I'm waiting on an 100% diagnosis because I'm still breastfeeding, so there's a few decisions to make - please don't blame me for this).
I tested myself for parasites and I don't have any. So my doctor is still not sure about the severe eosinophilia. No allergies either. Thoughts?
Also, another medic told me my 14 month baby girl might have Lupus as well. She was born with two red blotches on her lower back and back of the neck, which I'm checking out tomorrow morning with a dermatologist. Didn't think anything of it since her pediatrician said it's nothing, but only now I'm connecting the dots...
For the past five years I thought I had RA and was treated for it, but lately this diagnosis was proven wrong in the light of much worsened symptoms and more detailed blood tests. For the past 9 years I've been losing weight for no reason, trying hard to maintain a healthy weight and still falling short.
At six months after giving birth I began experiencing all of these worse symptoms, plus losing half of my hair all of a sudden. It only got worse from there. I blamed it all on post partum adjustment, breastfeeding, stress, but my baby is now almost 14 months old and I'm still very tired all the time and always in pain, so I got checked and here I am facing maybe Lupus.
I'm 31 years old.
I used to be very active and physically strong, but I lost my stamina the moment I got pregnant and never recovered. Now it's only worse.

What are your thoughts reading all this?

I could use any kind of insight on any issue presented here, if anyone has anything to comment... I would appreciate it very much.
Thank you kindly.

Ana

 

[Robin Jackson]

I think you should wait until you have rec'd results from your ENA panel and try to relax.
What is this medic person that told your that your child has lupus? I am not sure where you are located, but I find it very irresponsible for anyone to suggest that your baby has lupus based on red blotches. Needless cause of worry and anxiety.
Some of the stuff you have listed can be attributed to postpartum issues, fatigue, hair loss, etc... Anxiety can cause hyperventilation and numbness and tingling.
This is a very informative website.:
https://www.hopkinslupus.org/

Hang in there and keep us posted.

 

[Ana_5678]

Thank you for replying!
This person is a nurse, and she had no idea about the red marks on my baby, she just said that I have a baby, so she definitely has huge chances of having Lupus. Yeah, a bit uncalled for. I checked online and that's not really true. It was I who linked the birth marks to my possible diagnosis, but I'm checking tomorrow morning with a specialist.
I'm mentally strong for the amount of stress I go through and I'm only trying to be prepared for any possible scenario.
For a long time I blamed the post partum too, but I don't see any mother being unable to pull a zipper or grab a spoon in the morning, let alone pick up the baby, changing a diaper and so on.
I live in Romania, where the medical system is a mess.

 

[Robin Jackson]

Well, I certainly hope that you look at the link I provided for some good information which may ease your mind.
My heart goes out to you . There are MANY autoimmune diseases and it can take a long time for a diagnosis because they mimic many other diseases.
I don't blame you for not wanting to take Plaquenil and Prednisone without further information. Many doctors prescribe it to see if it helps with symptoms and guide them to a more definitive diagnosis.
Not sure how long you plan on nursing, but weaning might be a thought so you can explore relief if Plaquenil works. It does take a few months to build in the system. Unfortunately, there really is no quick answer when it comes to autoimmune diseases.

 

[keebler]

Hi Ana and welcome to the forum!
I am sorry for what brings you here. Unfortunately many young mothers find out after births of their babies.
That nurse should of never of said that about your baby.
Have a look around the home page of this forum. It has loads of information on it.
https://www.thelupussite.com/

Here is a symptom page, just click on them and it will tell how lupus affects it.
https://www.thelupussite.com/lupus_symptoms/lupus_symptoms.html

Take care,
Lyn

 

[Ana_5678]

Thank you!
Yes, I looked around the internet and digged for information, also read the link you gave me before posting here.
I guess I was curious for another opinion, maybe from someone who has a similar story... or advice on how to proceed further.
Maybe it's not Lupus and the eosinophilia is a strong sign to look somewhere else that my rheumatologist is missing.
Anyway, I'll keep searching until I find the right path to finding out what's wrong with me and hopefully fix it, because I miss my old self so much.
Thank you for your message.

 

[lazylegs]

Hi Ana,

Have they checked your thyroid? It can be connected with eosinophilia. Birth can be a trigger for both the thyroid and Lupus.

Take care,
Lazylegs

 

[MissDaisy 1]

I am sorry you are going through this as the unknown can be a bit daunting. I like Lasylegs question about having your thyroid checked. Sometimes your thyroid can be out of whack after having a baby.

As far as I know autoimmune diseases are not inherited. You may have a higher chance of developing an autoimmune disorder but that does not guarantee you will get it or any of your relatives including your baby.

I have RA as did my grandfather. My mother, his daughter, never had any autoimmune problems.

Best!

 

[Lori ODonnell]

Hello all, I'm glad I've found this community.
My rheumatologist is 90% sure I have Lupus, based on my symptoms and a positive ANA (1/80) which I know is low and could be false positive. Will check again in 6 weeks.
Blood work also showed very high eosinophils (21%).
My symptoms are pain and swelling in joints, but a hand ultrasound showed healthy joints. Also other blood tests showed no signs of RA.
Every joint in my body hurts daily, it's worse in the morning and especially if I'm using them a lot. So mainly my hands and my knees and hips hurt the most. After a bath my ankles swell.
There's also numbness and tingling in fingers and toes (this makes me useless for the first hours of morning, I can't use my hands at all, it gets better during the day, though it never goes away completely), extreme fatigue, chest pain (there are days when I struggle to breathe or fill my lungs and yawn a lot trying to get a deep breath), mouth sores, dizziness and anxiety.
I'm waiting for results on an ENA panel, meanwhile I was prescribed Prednisone and Plaquenil (which I didn't start taking yet, I'm waiting on an 100% diagnosis because I'm still breastfeeding, so there's a few decisions to make - please don't blame me for this).
I tested myself for parasites and I don't have any. So my doctor is still not sure about the severe eosinophilia. No allergies either. Thoughts?
Also, another medic told me my 14 month baby girl might have Lupus as well. She was born with two red blotches on her lower back and back of the neck, which I'm checking out tomorrow morning with a dermatologist. Didn't think anything of it since her pediatrician said it's nothing, but only now I'm connecting the dots...
For the past five years I thought I had RA and was treated for it, but lately this diagnosis was proven wrong in the light of much worsened symptoms and more detailed blood tests. For the past 9 years I've been losing weight for no reason, trying hard to maintain a healthy weight and still falling short.
At six months after giving birth I began experiencing all of these worse symptoms, plus losing half of my hair all of a sudden. It only got worse from there. I blamed it all on post partum adjustment, breastfeeding, stress, but my baby is now almost 14 months old and I'm still very tired all the time and always in pain, so I got checked and here I am facing maybe Lupus.
I'm 31 years old.
I used to be very active and physically strong, but I lost my stamina the moment I got pregnant and never recovered. Now it's only worse.

What are your thoughts reading all this?

I could use any kind of insight on any issue presented here, if anyone has anything to comment... I would appreciate it very much.
Thank you kindly.

Ana

Hello. I was diagnosed at 33. I had the hand numbness and face tingling. I have heard some pregnancies can escalate lupus. I was lucky my GP guessed right and had me tested twice for false positives. Your joints will not show damage as in ruematory arthritis. My dr. Explained, the symptoms come out as ruematory but I have Lupus. Plaquenil is what I have taken with prednisone for 14 yrs. I now have lupus lung disease. I am not able to excersise or do what I used to either. Lupus can attack any organ. This does not happen in everyone. Plaquenil takes awhile to get into your system. It is an immune suppressor. Your immune system is what over reacts to stress, hormone changes, sun. Lupus can be hereditary but the dr. That said your 14 month old will develop lupus is way out of line. The way you react to stress has a lot to do with how you feel. Fatigue, unfortunately seems to always be lurking. I don't sleep well either and take a PM to relax my brain. I take a prenatal after losing my hair. I got it all back thanks to that. I lost 30 pounds in 2 months due to stress. Then the symptoms started. I probably brought on my lupus, not sure.
I try and take my prednisone and tramadol about 4:30 am to allow my 6:00 wake up to go better. When I worked.

Take care.

 

[Ana_5678]

Oh gosh, it sounds awful... Does it bother you every day? Does the medication take it down a notch?
I just got Lupus confirmed by a second doctor today and your message was very well received. Thank you so much for your words.
Do you remember in the beginning if the hands numbness got worse after using your hands more (like stapling, drawing, any physical activity using them more than usual)? It's like my nerves are fried, I feel hot and cold at the same time while not feeling the skin, and it's worse after effort. This is very bad for me and I'm wondering if I'll ever be able to use my hands.
It's like it's targeting all my weak spots. For example I had a jaw problem ten years ago, it got semi dislocated, it was fine, sometimes popping but painless, and now I can't chew.
In pregnancy I had bronchitis which I never treated (couldn't have antibiotics) and now I have breathing problems, wheezing and cough.
Does the targeted weak spots around the body sound familiar?
Is this a sign I should start the treatment?

Sorry for the extra questions...
I don't know how to manage this. I seem to refuse to accept it.

 

[Tired]

Having these kinds of health issues at 31 must be scary and overwhelming for you. Try and take it one day at a time, if you can, and if that's too much sometimes...take it one hour at a time. Start logging your symptoms in a journal, if you can. What time of day they occur. What you did before they occurred. Sometimes this helps doctors see a pattern of symptoms. Don't be afraid to ask for a second opinion, if you find yourself unhappy with your current doctor.