Eosinophilic Fasciitis: Looking to connect with others

Supplements were not a treatment; L-tryptophan was the cause. It was poisoned due to a change in how the manufacturer made it. He had taken it to help with sleep. It was removed for a time by FDA from being sold but came back to shelves in another form.
He had a rash, extreme swelling of hands and lower legs (his hands looked like balloons), and unbearable pain throughout. He could barely walk. There was scleroderma, erythema multiforme 3 different times, and extreme bone loss. Essentially there was no real treatment for all the resulting consequences. He was given prednisone which caused its own serious consequences, including two surgeries. We were blessed that he survived with disability. We had been married less than five years at the time.
Needless to say, I do not trust any “food supplements” unless they are USP certified, nor most medications.

Was this L-tryptophan part of the bad Japanese stuff of a few years ago? I might be wrong, but I think Mayo Clinic may have linked L-tryptophan to the possibility of developing a type of cancer. I remember reading their comments and tossing mine. Check out L-tryptophan on the Mayo Website.

It was. There were multiple medical consequences as a result of the L tryptophan changes. There have been surveys conducted by NEMSN with physicians and Ph.Ds

I have eosinophilic fasciitis (confirmed with biopsy). It affects both my arms and legs. It also affects my torso. Most of the studies and articles I've read only talk about issues with the extremities. I have banding at the waist and tightness in my rib cage (as though I'm wearing a corset). It affects my lung and diaphragm capacity so I get easily winded. Also, when I eat, I immediately feel full because my stomach cannot expand. Has anyone else experienced similar symptoms?
Also, the onset of my symptoms was within a couple of weeks of my second Covid booster (Moderna) in April. There was no other significant event around the time. Has anyone heard of the vaccine triggering autoimmune disorders?

Thank you for your post, I appreciate it. I have EF (confirmed by biopsy) at the end of March 2022 and had/have similar symptoms with the exception of tightness to my rib. Thankfully, I didn't/don't have issues affecting my lungs or other internal organs.

My symptoms started two to three weeks after my second Moderna Covid vaccine in November 2021. Up until then, I was healthy and was fortunate not to have to take any medication.

I started developing symptoms in my torso to include skin thickening, leathering, discoloration and tightness. After that, the symptoms quickly spread to my neck, swelling and skin thickening in my legs, arms (both upper and lower, it felt like carpal tunnel and tennis elbow), breast area, lats, weight loss, night sweats and significant fatigue. I thought I was going crazy!! This has been a significant life changer for me as I'm sure it has been for you.

I know of several people that developed an autoimmune disease after their covid vaccinations. In my humble opinion and after reviewing various journal articles, I think we will see emerging evidence about the new onset of autoimmune diseases occurring after people receive COVID-19 vaccines.

I'm new to this and not sure if this is the right place to ask, but what treatment are you receiving and is it helping?

Best of luck to you and your family!!

Welcome @philipnewbury and @duran24
The exact cause of eosinophilic fasciitis is unknown (idiopathic). Researchers believe that the disorder results due to a nonspecific triggering event that causes an abnormal immune system response, specifically an abnormal allergic or inflammatory reaction. It sounds like both of you have had an inflammatory response. Like with many idiopathic conditions, it's hard to know and very frustrating.

You'll notice that I moved your posts to this exiting discussion:
- Eosinophilic Fasciitis: Looking to connect with others https://connect.mayoclinic.org/discussion/eosinophilic-fasciitis/

I did this so you can easily connect with fellow EF members like @stephg @mtnyankee @donnai12345 @verilee1776 and also see the helpful resources in their previous posts.

What treatments have been tried? Which treatments have helped you?

Hello.
My name is Maria and I started having severe muscle pains in June 2022, after weeks of debating with my PCP what it could be labs were done and C-reactive protein was elevated showing some kind of inflammation. Make a long story I was then seen by a rheumatologist via video and she diagnosed me with PMR. I was on low dose of prednisone for a few weeks. Muscle pain in my legs started to diminish but tightness in my forearms appeared to a point that my ROM was so limited. I have the same issues with my legs and also my abdominal area is so tight that it is often hard to breath and move, especially after eating. I am now on high dose of prednisone and was told that the next medication should be Methotrexate. I have a CT scan scheduled to see what if there is anything else going on with the abdominal area. I was wondering what kind of treatments others have gone through and what the results were. A biopsy is scheduled to confirm EOF. My labs have improved almost to a normal level. The symptoms of EOF are still very prominent though.
I appreciate any feedback.
Sincerely,
Maria

Hi Maria! I was diagnosed with EF in March 2022 and had similar symptoms. Do have have a groove signal? That’s unique to EF.

I’ve been on prednisone since April and the doctors have prescribed methotrexate, hydroquinone, cell Celt, light therapy and ivig infusions. I tried it all and had to weigh quality of life. Anyway, right now I’m on low dose prednisone and monthly ivig infusions.

I still have inflammation in both arms and legs.

If you want to reach out, please don’t hesitate to email me. I have found that this is a lonely journey and not many people understand how EF impacts daily and quality of life.

Take care,
Roberta

Hi Roberta,
I am sorry to hear that you are going through the same misery as me.
I do have groove signs in my forearms, thighs. I am reluctant to go any more medications that may or may not help. I feel that I have improved quite a bit from 2 months ago where I couldn't even bend down to pick something up of the floor.
You are mentioning IVIG Infusion, I am not familiar with this.

Have your symptoms improved at all?
I am going for a CT scan tomorrow to see if the tightness in the abdominal area is in the wall or if there is something else going on.
Did you have a biopsy done?

Thank you for reaching out to me. I really appreciate it.
You are absolutely correct that it is a lonely journey.

Take care,
Maria

Maria,

I first developed symptoms in April, 2022, right after my second (Moderna) Covid booster. The first three doctors I saw had no idea what it was. Finally, I saw a rheumatologist who recognized the groove sign. He sent me for a biopsy which confirmed that I had EF. My symptoms were very similar to yours. I was put on 60 mg of prednisone and methotrexate initially.

I was able to get in to see Dr. Ruth Ann Vleugels at MGH Brigham Dermatology Clinic in Boston in July. She switched me to 48 mg/day of methylprednisolone and started me on 3g/day of CellCept and Solu-Medrol infusions (1 gram per week for 6 weeks). She also started me on IVIG (Octagam), 2 infusions per month. I have had four months of IVIG infusions so far, and my symptoms have improved significantly. She discontinued the methotrexate, and is also weening me off the methylprednisolone. (I'm currently alternating between 8 mg and 4 mg daily).

I don't know where you are geographically, but if there is any way you can get in to see Dr. Vleugels, I highly recommend it. She treats many patients with EF and has a well-established program for treatment.

I am also very interested in finding out if anyone else developed EF soon after their Covid booster. It could be purely coincidental, but in my case, the symptoms came on within days, and there were no other unusual events in my life around that time.

Phil