Coexisting health conditions

[Debbie Lewis]

Hi Ashley,

I have Crohn’s/Ulcerative Colitis (apparently you can have both simultaneously – that was new to me last Nov.),  Hashimoto’s hypothyroidism,  diverticulitis, osteoarthritis and osteopenia.

Fortunately, I’ve been able to control my Crohn’s/UC via diet.

Debbie

[Ashley]

Debbie,

Glad your Chron’s/UC can be controlled without medications, that’s awesome!

[Dawn DeBois]

My co-diagnosis’ include: fibromyalgia, psoriatic arthritis, ankylosing spondylitis, hashimotos thyroiditis and most recently dysautonomia.

Because psoriatic arthritis is continuing to destroy my fingers, and my ankylosing spondylitis causes a large amount of back pain, my new rheum would really like me to consider going onto a biologic to get them under control. However, many are known to cause issues with demylenating conditions. Not so much is known about LEMS with the biologics, except for the one I tried already. One I tried after hydroxychloroquine definitely added to my LEMS symptoms. Is anyone who has LEMS also on something for severe arthritis or spondylitis?

[Romy Braunstein]

Hi Ashley,
I had to have heart ablation surgery and after I was on the blood thinner for a few weeks I got the worst skin reaction that I had to cut the blood thinner out two weeks early.

Since then, I was diagnosed with Amyopathic Dermatomyositis (very rare skin autoimmune disease). I am current on a very strong immune suppressant, Cellcept, to keep my skin from breaking out in a full rash. I do NOT have 100% symptom relief from the medication, but have improved a lot over the past two years.

And I am still on a prednisone, but just 5mgs a day…for the next 60 days that I will be off. The prednisone happens when I travel. I last traveled in January, but still am tapering down from 20 mg to 5mg to off and hopefully now flair up.

Also, from what I understand, if you have one rare disease, you can get more!!! Do it does not surprise me that you have a few things going on and I hope you are handing your symptoms.
All the best!
Romy

[Ashley]

Romy,

Sorry to hear about all of that! I looked into Amyopathic Dermatomyositis a few weeks ago because I get a rash on my face and on my fingers close to the time that my IVIG is wearing off. What other symptoms do you have and how did they diagnose you with this?

I unfortunately can not afford to be on any immunosuppressants because I have low white counts to begin with, so IVIG is really my only option, especially if I want to continue working as a nurse. I’m not willing to give up my career at this time, so I manage everything the best I can. IVIG has really made a difference and has also helped to keep my blood counts “up.”

[Tescha]

Hi Ashley,

I also have POTS/Sysautonomia and psoriasis.

Tescha

[Ashley]

Hi Tescha,

I’m curious as to which you were diagnosed with first. For me, it was POTS/dysautonomia.