Crohns...Lupus... And DVT??

[kristenpaige96]

Hi Everyone...

My Name Is Kristen I Am 16 Years Old... Fixing TO Start My Junior Year Of High School... Ive Had Crohns For Exactly A Year Now Today........ I See A Gastro Doc For My Crohns, Pulmonolgist For My Asthma, And A Hematologist For My DVT(Which Is Located On My Upper Right Extermity) which is very close to the heart and lungs.... I had went to see my hematologist for my monthly check up for my DVT and I had complained about some joint and legs pains and numbness after sitting or lying down for long periods of time. He thinks I have Lupus. Im still in the process of being diagnosed... I went to see my pulmonolgist yesterday so he could sign my papers for school allowing me to carry my inhaler with me at school. He asked how my asthma has been and it has been rough for me. I can never leave my house without it. I could be sitting completely still doing nothing and I start getting very tight chested have coughing and some wheezing. I also have to sleep with my inhaler with me at night bc I wake up and literally CANNOT breathe!!!! He suggested I see a cardiologist because he is concerned that where my clot is that it might be putting too much pressure on the heart and because were unsure of Lupus one of the symtoms of lupus is weakening muscles. So he thinks the muscles around the heart are getting weak. He also put me on flovent... for asthma and will be talking to my hematologist about doing a procedure to remove the clot...... Im A little over whelmed... What Can I Do???? Does this mean I have lupus for sure now? Does this mean Surgery? HELP PLEASE ANYONE!!!!!!

p.s
Sorry about my spelling I typed quick

 

[David]

Hi Kristen and welcome! I'm so sorry to hear of all your troubles My heart goes out to you.

No, it does not mean for sure that you have lupus. For example, vitamin B12 deficiency (which is very common in people with Crohn's Disease) can lead to some of the symptoms you describe. Have you had your levels tested?

I can see why you're overwhelmed We're here for you though!

 

[Angrybird]

Hi Kristen and welcome to the forum. I am sorry to heat that you are having to deal with so much right now :hug: Along with getting your levels checked can you also confirm what meds you are on? I ask because I have been on a med for my crohns which gave be drug induced Lupus, once I stopped this my symptoms did start to clear up.

AB
xx

 

[kristenpaige96]

Thank You and yes I had levels checked everything was fine!!

Pentasa 250mg(16 a day)
Nexium 40mg(1 a day)
Amtriptlyine 50mg(1 a day)
Singular 10mg( 1 a day)
lovenox injection 60mg( 2 a day)

 

[David]

Do you know what your specific B12 level was when it was tested?

 

[kristenpaige96]

No im not sure my doc jusxt said all my levels looked great so thats when he starting thinking lupus bc with lupus you have these symtoms

Fatigue and fever
Joint pain, stiffness and swelling
Butterfly-shaped rash on the face that covers the cheeks and bridge of the nose
Skin lesions
Shortness of breath
Chest pain
Dry eyes
Headaches, confusion, memory loss

Which I Have Headaches, shortness of breath, Dry eyes, joint stiffness light swelling and major fatigue. So this is why they are thinking lupus....

 

[PsychoJane]

hello Kristen and welcome to the forum! I'm sorry to read you have to deal with all these health concerns. Like AB, I am curious to know what med you are on for your Crohn. It is true that certain medication can induce lupus or lupus like syndrome. It is not all specialist that thinks of it at first but depending of what med you are taking, this could be something to carefully investigate.

 

[Kristin]

Hello-I've just joined this group. i've had crohn's for over 8 years now and have been on remicaid for 7 years. I recently shortened my remicaid infusions from 10 weeks to 8 weeks and now I'm having weird pain and my eyes and face are totally swollen. I am a bit freaked out about remicade induced lupus. Trying to get in to see my GI asap. i'm 43, with two kids under the age of 4. I'm exhausted (obviously) but I do not fee like me and I'm really panicked at the moment. Has anyone had massively swollen eyes?? please help, thank you

 

[kristenpaige96]

No my eyes have never swollen and I don't know much about remicade bc I don't use that. I'm sorry!! I wish I could help