1. < Autoimmune Diseases

PsA or C.R.E.S.T. ??

Posted by gkuntz114hayden @gkuntz114hayden, Mar 27 5:14am

At first, 3 years ago, I was diagnosed with "Limited" CREST, then a different Rheumatologist, who examined me in person, diagnosed me as having PsA. I take Humira, but also take Ibuprofen and Tylenol for the Arthritis Symptoms. A dermatologist found that I have Psoriasis on my elbows and scalp, and a skin condition in random places called "Seborrheic Keratosis". At age 69, I have few wrinkles I figure due to excess softness of most of my skin. (Can't think of the name of the substance right now). Over time, it seems that symptoms of CREST have been showing up. Cold hands and feet, trouble swallowing at times, especially cold liquids, tough areas of skin, especially on extremities which make my fingers and toes somewhat difficult to bend, but no Telengiactasias. My lab tests always show high Sedimentation Rate and Inflammation. My lower back has signs of Spondylitis. There is persistent and Chronic pain in my right shoulder and down my arm, some fingers and toes are painful, both knees hurt all the time, and I have problems with dry eyes and blurred vision. My hearing is impaired. I've had these issues ever since I tested positive for Covid 3 years ago. My immune system must have been triggered to go into Overproduction of Antibodies. Please Advise. Thank-you.

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gkuntz114hayden | @gkuntz114hayden | Mar 27 5:17am

"Collagen" was the skin substance I was trying to think of. It seems to prevent wrinkles.

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seniormed | @seniormed | Mar 27 6:44am

Mixed connective tissue disorders are often both
cutaneous and systemic inflammation with arthritis
and features of several rheumatic disorders.
Your auto immunity is still active with high lab numbers.
PSA often has features of axial spine involvement.
In your situation the specialists need to communicate
and participate with you in treatment planning. Have
your cardiovascular risk profile evaluated for additional
preventive treatment. Consider Mediterranean diet in
managing chronic inflammation.
If you have the resources to find a university or multi specialty clinic with dermatology rheumatologist
consultation that should help. Keep advocating for
better symptom relief and further treatment.

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1 reply
ollie2018 | @ollie2018 | Mar 27 7:16am

My sister, 65 yrs. Old has crest syndrome. Very painful and debilitating. I feel for you. Keep as active as you can - she is also working through the medications in order to get the right one to at least give her some relief. Hang in there.

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gently | @gently | Mar 27 9:28am

gkuntz114hayden,
You might ask for serum ACA anticentromere antibody.
A good reason for wanting to distinguish between these autoimmune systems is the medications. Though seniormed makes a good point about the overlapping connective tissue disorders.
I'm sending this linkhttps://pmc.ncbi.nlm.nih.gov/articles/PMC8910153/ to encourage you to consider a stellate ganglion block.
It's good that you are questioning everything.

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Lara K | @larak | Mar 28 8:39am
In reply to @seniormed "Mixed connective tissue disorders are often both cutaneous and systemic inflammation with arthritis and features of..." + (show)
@seniormed

Mixed connective tissue disorders are often both
cutaneous and systemic inflammation with arthritis
and features of several rheumatic disorders.
Your auto immunity is still active with high lab numbers.
PSA often has features of axial spine involvement.
In your situation the specialists need to communicate
and participate with you in treatment planning. Have
your cardiovascular risk profile evaluated for additional
preventive treatment. Consider Mediterranean diet in
managing chronic inflammation.
If you have the resources to find a university or multi specialty clinic with dermatology rheumatologist
consultation that should help. Keep advocating for
better symptom relief and further treatment.

Jump to this post

seniormed is absolutely correct about getting a cardiovascular evaluation.

Sometimes, systemic issues appear before cutaneous ones. Don't take that chance.

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pm56 | @pm56 | Mar 28 12:02pm

I'm thinking if you're taking Humira and your ESR and CRP are still high AND you're experiencing back pain and shoulder pain as well as the skin symptoms you mentioned - then the Humira doesn't seem to be doing a
good job of controlling your inflammation by itself and it might be time to ask your rheumatologist about adding another anti-rheumatic in addition to/or trying something else. I've cycled through multiple biologics so far and Cosentyx by infusion and weekly Methotrexate shots seem to be doing the best job with my inflammatory lower back pain, but without a steroid alongside, I become weak and unable to walk, so once all my recent testing is back, we're planning on adding something else to the mix to see if we can address that. Like you, I have elements of different autoimmune diseases (Spondylitis, Psoriatic Arthritis and Rheumatoid Arthritis - Overlap Syndrome) and my rheumatologist said that sometimes one drug doesn't address everything. Since you're having so many issues, it might be time to discuss better symptom control with your doctor.

Other thoughts:

- Agree with other members on seeing a cardiologist - I see one quarterly.
- My rheumatologist also asked me to add a pulmonologist to the team to get a baseline CT scan as autoimmune disease is often linked to lung issues like interstitial lung disease, sarcoidosis, COPD, nodules, and in some instances there is a higher risk for malignancy. I see him twice a year.
- She referred me to a corneal specialist for persistent scratched corneas from dry eye. I take an immunosuppressant drop (Vevye) and a prescription lubricant (Meibo) and it's been life-changing!
- She asked me to start swimming (or join an Aquacize group) to help with mobility and strength, and she recommended an anti-inflammatory diet.
- A physical therapist has been invaluable in keeping me moving too. I see mine twice weekly and do the exercises at home in between which might help you if you're experiencing joint issues (but they can only work on one body part at a time, so I usually pick whichever's worst and then move to something else when it's better).
- When I'm stiff and in pain, I find that moist heat helps immeasurably. I have a heating pad that I heat up in the microwave and tie around my lower back for relief (Amazon).
- I've started consolidating all of my specialists within the same system whenever possible and doing all my imaging and labs in associated facilities so that if one wants to look at an MRI report or recent labs, I don't have to go anywhere to pick up results to bring with me or hope that a request gets processed in time for my appointment - they all have access to my records which makes life so much easier. Just something to consider as you progress through this journey.
- Have you been on and off steroids to control flares? If so, I'm wondering if the blurry vision is due to steroid use. I had cataracts in both eyes by the time I was 49 and finally had both corneas replaced last year and it was definitely from the steroids.

I'm so sorry you're going through this; I hope you find something that works well for you soon.

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