SUDDEN Rise in ESR - Pt. 3

[irishponies]

Hello, Thank you again to the kind folks that commented on my last posts re: Sudden Rise in ESR. Here is the post-appointment with the rheumatologist update.

The rise of the ESR from 0 to 93 in 2 months time is a complete surprise to the treatment team and is not considered chronic. In addition to the ESR of 93, all other inflammatory markers have risen to their highest point since diagnosis 22 months ago.

These treatments and their magnificent side effects have been endured: High dose steroids; high dose methotrexate; plaquenil; and Rituxan. The rheumatologist reports there has been "zero response to treatments". As methotrexate, now discontinued, caused frequent vomiting and diarrhea, extreme fatigue, and almost total hair loss, cyclophosphamide is not being considered due its higher occurrence of side effects. Long term high dose steroids, being continued, have produced Cushing's Syndrome. Plaquenil is being discontinued due to retina issues and unbearable tinnitus. Rituxan is being continued.

Neurological evaluations including MRIs, extensive blood work, nerve conduction and other horrendously painful testing have been conducted at 2 separate facilities. Both exams have ruled out neurological disease, including demyelinating diseases.

Hopefully there is simply a long delay (22 months) in response to medications. Not responding at all is beyond frustrating; it is terrifying to the rheumatologist's "first patient in over 10 years to have no response to treatment". I feel like I am a ticking clock with the alarm going off at whatever time the clock choses. My greatest fear is to be diagnosed with refractory rheumatological inflammatory disease.

People with rheumatological and immunological issues understand how infuriating these diseases can be. My family and friends are dumbfounded and overwhelmed, as am I. Thank you for your support.

[agingfeminist]

a clear diagnosis makes all the difference...emotionally as well as medically. Have you been diagnosed with PMR (i.e. do the steroids remove the pain)? As is often said on here, the ESR can go up for a lot of reasons. Symptoms are the key. I guess your symptoms are pain ..if they don't improve markedly with steroids then an avenue other than PMR needs exploring. I found my PMR pain went within one day of a high steroid dose. Hope you get a clearer picture soon of what is going on,

[irishponies in reply to agingfeminist]

Hi, There has been many diagnoses, a million tests, and many treatments. Pain is one of many, many symptoms. Pain goes from zero to incapacitated in days, with and without steroids. The symptoms point to different diseases, as do the tests. The ESR was one of some 30 tests just this month alone. I am getting very weary of it all. Thank you for the support. I appreciate it.

[Bennijax]

So sorry to read what you are experiencing.

[irishponies in reply to Bennijax]

Thank you! I really appreciate the support.

[Jackoh]

No wisdom or knowledge to add here just very sorry you’re going through this and hope that some resolutions will be found soon. 💐

[irishponies in reply to Jackoh]

Thank you very much. I appreciate the support.

[PMRpro Ambassador]

Just illustrates that autoimmune disease is incurable - and good management is a process of trial and error. Hope they find something for your "Irishponies syndrome" soon.

[irishponies in reply to PMRpro]

Thanks PMRpro! I really don't want this mess named after me, I prefer you name a comedy club after me!!! And a BIG sign at the door that say, "All Ponies Welcome"!

[PMRpro Ambassador in reply to irishponies]

My point is that each of us has our own version of an autoimmune disorder - no two quite the same! And the old-fashioned fashion was to name the disorder you identified after yourself and achieve your moment of fame thus ...

[irishponies in reply to PMRpro]

Good Morning PMRpro, I understood your original comment. I think you misunderstand my attempt to lighten the mood with a bit of humor because that is all I have left. Hope is GONE. By the way, in old-fashioned fashion, wasn't the disease/treatment named after the doctor that found/cured it and not the patient? With a few exceptions such as Lou Gehrig, poor man. Whatever this crap is, I don't want it named after me. I have been more than accommodating to the doctors and hospitals, doing their tests and taking their pills for more than 22 months since diagnosis. Total time spent from the "It's in your head honey, there is nothing wrong with you" comment until diagnosis = 10 months. That makes a grand total of 32 months. I am not diagnosed or in remission. The Remission Clock is tick tick ticking: the active disease is destroying my organs.