1. < Autoimmune Diseases

Eosinophilic Fasciitis: Looking to connect with others

Posted by stephg @stephg, Jul 8, 2020

I’ve had fatigue, muscle stiffness and weakness, headaches and GI symptoms (among other things) for 5-6 years. Tore my rotator cuff a decade ago by lowering myself onto the floor and tore my plantar fascia a couple years ago by simply walking.

Several months ago they detected an adrenal nodule and have said they believe it is non functioning, but I’m having glucose swings and my thyroid is now enlarged. I very recently discovered unusual markings on my neck, along with marks on my arms and thighs that have been there for years, but docs said they didn’t know what it was because blood tests didn’t detect anything anomalous.

I’ve recently contacted Mayo for an appointment and my doc has sent a referral for me. But I’m just wondering if anyone else with EF has had an adrenal nodule and experienced these things? I do a lot of research and feel like maybe I’m on the right track, but who knows....

Thank you!

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mmr65 | @mmr65 | Jan 7, 2023
In reply to @philipnewbury "Maria, I first developed symptoms in April, 2022, right after my second (Moderna) Covid booster. The..." + (show)
@philipnewbury

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

Jump to this post

Phil,
Thank you so much for the information. I live in California and have Kaiser Insurance; it really feels like my rheumatologist is shooting in the dark. I will make note of the treatments that you are receiving and suggest to my doctor to look into that. I have to say my symptoms are not as bad as they were a few weeks ago.
I had a J&J booster 8 months prior to the onset of symptoms and had Pfizer booster in October but I cannot say that the symptoms got worse, they were bad already if that makes any sense.
Thank you again and I hope that your symptoms have been improving .
Maria

REPLY
2 replies
mmr65 | @mmr65 | Jan 7, 2023

Hello.
For the past few months I have been dealing with EF and after a CT scan of the pelvic area (tightness in the abdominal area) I was informed about an adrenal nodule as well. I see that your post was in 2020. I hope that you have received some kind of answers and treatments in the meantime and possibly would share your knowledge with me.

Thank you,
Maria

REPLY
duran24 | @duran24 | Jan 9, 2023
In reply to @mmr65 "Phil, Thank you so much for the information. I live in California and have Kaiser Insurance;..." + (show)
@mmr65

Phil,
Thank you so much for the information. I live in California and have Kaiser Insurance; it really feels like my rheumatologist is shooting in the dark. I will make note of the treatments that you are receiving and suggest to my doctor to look into that. I have to say my symptoms are not as bad as they were a few weeks ago.
I had a J&J booster 8 months prior to the onset of symptoms and had Pfizer booster in October but I cannot say that the symptoms got worse, they were bad already if that makes any sense.
Thank you again and I hope that your symptoms have been improving .
Maria

Jump to this post

Hello...... I was diagnosed with EF in late March of 2022 and have tried several different treatments. I have been receiving monthly IVIG monthly infusions that are not longer working. My doctors just prescribed Acterma injections, which I have not started because of issues with my insurance. Will you all please share your treatment and what has worked for you?
Thank you,
Roberta

REPLY
Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Jan 10, 2023
In reply to @philipnewbury "Maria, I first developed symptoms in April, 2022, right after my second (Moderna) Covid booster. The..." + (show)
@philipnewbury

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

Jump to this post

@philipnewbury - I don’t have EF but a nonspecific GI autoimmune that had been in remission. I think my Covid shots reactivated it and each shot made it flare little more then calm down again.

REPLY
duran24 | @duran24 | Jan 10, 2023
In reply to @philipnewbury "Maria, I first developed symptoms in April, 2022, right after my second (Moderna) Covid booster. The..." + (show)
@philipnewbury

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

Jump to this post

Phil,

I developed symptoms a few weeks to a month after my second Moderna Covid booster and didn't have any unusual events in my life either. In my opinion, I think that there's a link.

I am glad the IVIG infusions are helping you. I started the infusions in May once a monty for three consecutive days, but am no longer getting relief. I had a flare up prior to and after my infusions in December. I'm going to stop them for now and the doctors prescribe Acterma injections, but I haven't started yet due to insurance issues.

Thank you for sharing your experience, I appreciate it.

Roberta

REPLY
duran24 | @duran24 | Jan 10, 2023
In reply to @mmr65 "Hi Roberta, I am sorry to hear that you are going through the same misery as..." + (show)
@mmr65

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

Jump to this post

Hi Maria,

Yes, I had a biopsy to confirm EF. I also went to Mayo in August and based on the slides sent to them from the pathologist, they confirmed the diagnosis.

Since the onset of acute symptoms, yes, thankfully I have improved. My range of motion is better, balance has improved, I can grasp things easier, can walk up and down stairs and step off a curb easier, and have made most process in the trunk area. I have most issues in my legs, arms and with fatigue. Although, the fatigue isn't as intense as it use to be.

I hope everything with your CT turned out ok. Please reach out if you need anything.

Roberta

REPLY
KMG | @kmcgumm | Apr 6, 2023

Hi there!
There is a wonderful Facebook group called “Eosinophilic Fasciitis Support Group”
It wouldn’t let me post the link.

REPLY
1 reply
svcfeo | @svcfeo | Jun 1, 2023
In reply to @mmr65 "Phil, Thank you so much for the information. I live in California and have Kaiser Insurance;..." + (show)
@mmr65

Phil,
Thank you so much for the information. I live in California and have Kaiser Insurance; it really feels like my rheumatologist is shooting in the dark. I will make note of the treatments that you are receiving and suggest to my doctor to look into that. I have to say my symptoms are not as bad as they were a few weeks ago.
I had a J&J booster 8 months prior to the onset of symptoms and had Pfizer booster in October but I cannot say that the symptoms got worse, they were bad already if that makes any sense.
Thank you again and I hope that your symptoms have been improving .
Maria

Jump to this post

Hi Maria,

I noticed you mentioned living in California and you feel like you rheumatologist is "shooting in the dark". I am in NorCal and was recently diagnosed with EF and highly recommend my rheumatologist, Dr Victoria Marie Kelly (she is part of the Stanford Heatlh Network). Her wait time for an initial visit is quite length (3-4 months) but she is super attentive and thorough. In her decade long career, she has helped ~8-10 other patients EF.

I'm still in the early stages of treatment (currently: 60mg prednisone for 14 days) but so far, my improvement in quality of life and reduction in constant debilitating pain has been exponential. For a time (pretreatment), I started to wonder if I could even remember what it was like to not be in constant pain or be fully independent with my daily tasks (yaeh dark dramatic thoughts lol). I've recently started seeing a PT to try to regain my range of motion and mobility. Not sure what the future holds and if I'll ever be 100%, but for now I feel optimistic 🙂

Bev

REPLY
1 reply
mmr65 | @mmr65 | Jun 2, 2023
In reply to @svcfeo "Hi Maria, I noticed you mentioned living in California and you feel like you rheumatologist is..." + (show)
@svcfeo

Hi Maria,

I noticed you mentioned living in California and you feel like you rheumatologist is "shooting in the dark". I am in NorCal and was recently diagnosed with EF and highly recommend my rheumatologist, Dr Victoria Marie Kelly (she is part of the Stanford Heatlh Network). Her wait time for an initial visit is quite length (3-4 months) but she is super attentive and thorough. In her decade long career, she has helped ~8-10 other patients EF.

I'm still in the early stages of treatment (currently: 60mg prednisone for 14 days) but so far, my improvement in quality of life and reduction in constant debilitating pain has been exponential. For a time (pretreatment), I started to wonder if I could even remember what it was like to not be in constant pain or be fully independent with my daily tasks (yaeh dark dramatic thoughts lol). I've recently started seeing a PT to try to regain my range of motion and mobility. Not sure what the future holds and if I'll ever be 100%, but for now I feel optimistic 🙂

Bev

Jump to this post

Hi Bev. Thank you so much for reaching out. I was on prednisone for approximately 4 months starting at 50mg. I felt that the side effects added a lot more misery. I have been off the medication for about 5 weeks now. I still have issues with tightness in my arms and calves and knees.
I am a lot better than I was a year ago though. I am in the process of reaching out to a specialist at UC Davis.
It can be a lonely journey.
I have been in touch with a lady from New Mexico who also has this rare disease. It has been very uplifting to just talk about.
I think it is great that you get to do PT hopefully that will help your mobility.
If you ever feel like talking you are more than welcome to call me.
Best regards
Maria

REPLY
2 replies
mmr65 | @mmr65 | Jun 2, 2023
In reply to @kmcgumm "Hi there! There is a wonderful Facebook group called “Eosinophilic Fasciitis Support Group” It wouldn’t let..." + (show)
@kmcgumm

Hi there!
There is a wonderful Facebook group called “Eosinophilic Fasciitis Support Group”
It wouldn’t let me post the link.

Jump to this post

I will look for it.
Thank you.

REPLY
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