Medication, Autoimmune Diseases

Posted by penn @penn, Jan 23, 2025

I have Small Fiber Neuropathy and Sojgren's Syndrome so pain, any new medications it??? PAIN!!!

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Profile picture for taylor05 @taylor05

@dancer26
Aaww I'm sorry you had to experience that! Yes, I had shoulder replacement done under 5 months ago. Meds weren't doing the job at all.. Survived though.. Still have months to go Dr. Said to gain all strength and pain go away as muscle gets stronger. I have so many autoimmune disease issues.. Antiphospholipid syndrome, Sleraderma, Sjögren's, Raynouds, I have Fibromyalgia and Chronic pain syndrome, I've had several ischemic strokes, no high BP ever, and I have pulmonary fibrosis now from Connective Tissue Disease. Life gives us things to deal with and sometimes it's to much I know. Much luck sent your way. Prayers!!!

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@taylor05

Hi @taylor05,
What kind of treatments are you getting for scleroderma?

Scleroderma is known to cause ILD - pulmonary fibrosis. Do you have restrictive lung disease as well with low Pulmonary function test results?
If yes, that would be a limiting factor for general anesthesia. How did you do with general anesthesia for surgery?

I am asking, because I had a similar situation.

REPLY
Profile picture for Alta Net @altabiznet

@taylor05

Hi @taylor05,
What kind of treatments are you getting for scleroderma?

Scleroderma is known to cause ILD - pulmonary fibrosis. Do you have restrictive lung disease as well with low Pulmonary function test results?
If yes, that would be a limiting factor for general anesthesia. How did you do with general anesthesia for surgery?

I am asking, because I had a similar situation.

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Hello,
I didn't have , but a small defect in gas return , so they did the
operation and as soon as I woke from surgery I felt my lungs and left side
a lot hurt! Coughing started and was told it was gas trapped from
surgery.. Well it hasn't gotten better and breathing is worse. My
Ruymatolgist sent me to the ER because she thought maybe another stroke
could happen and a blood clot might be in my lung. They gave me a CAT scan
and seen the issue with my lung.. scarring and a hazy mass area. I go to
pulmonary Dr. Next week to see if they can help me breath better. It's
not good.
Thank you
Nadine Henchcliffe

REPLY
Profile picture for Alta Net @altabiznet

@taylor05

Hi @taylor05,
What kind of treatments are you getting for scleroderma?

Scleroderma is known to cause ILD - pulmonary fibrosis. Do you have restrictive lung disease as well with low Pulmonary function test results?
If yes, that would be a limiting factor for general anesthesia. How did you do with general anesthesia for surgery?

I am asking, because I had a similar situation.

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Hello,
What happened in your situation please? My chest hurts and throat
from the coughing all the time. I thought I was going to choke to death a
few times. Very scarry !!!
Thanks
Nadine

REPLY
Profile picture for taylor05 @taylor05

Hello,
What happened in your situation please? My chest hurts and throat
from the coughing all the time. I thought I was going to choke to death a
few times. Very scarry !!!
Thanks
Nadine

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@taylor05

Hi, I had a chest related surgery. Prior to surgery, my PFTs showed moderately severe restrictive lung disease. My Rheumatologist suggested not to do intubation during the surgery, meaning a shorter procedure with less anesthesia. I was fine after the surgery as far as breathing.

I am assuming you had general anesthesia with intubation. Good thing, you recovered. I am sorry, you are having breathing problems afterwards. For the future, it is better to be conscious of the amount of anesthesia and do intubation, only if absolutely necessary.

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Profile picture for Alta Net @altabiznet

@taylor05

Hi, I had a chest related surgery. Prior to surgery, my PFTs showed moderately severe restrictive lung disease. My Rheumatologist suggested not to do intubation during the surgery, meaning a shorter procedure with less anesthesia. I was fine after the surgery as far as breathing.

I am assuming you had general anesthesia with intubation. Good thing, you recovered. I am sorry, you are having breathing problems afterwards. For the future, it is better to be conscious of the amount of anesthesia and do intubation, only if absolutely necessary.

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@altabiznet
Hi,
I am.not sure about intubation with general. Yes to General though. I'm not recovered though as I'm coughing a lot! I wasn't beforehand. It's been almost 5 months since surgery. I can't wait to see pulmonary Dr. Hoping I'm given something to help stop coughing so much and feel better!! I'm glad
You're ok!!

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Hi,
I am having upper GI and colonoscopy due to a blood autoimmune diseases antiphospholipid syndrome and they need to know if I have a bleed. I'm very anemic and had 2 infusions so far. Wondering if they can do it without intubation for that? I'll be asking.. Thank you 😊

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Profile picture for taylor05 @taylor05

Hi,
I am having upper GI and colonoscopy due to a blood autoimmune diseases antiphospholipid syndrome and they need to know if I have a bleed. I'm very anemic and had 2 infusions so far. Wondering if they can do it without intubation for that? I'll be asking.. Thank you 😊

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@taylor05

Hi, colonoscopy is usually done under light sedation only - there should be no intubation. Not to worry about this part.

What kind of GI symptoms due to antiphospholipid syndrome? Dizziness, cramps, constipation? Or reaction to solid fired foods, spices, or red meat? What is your diet?

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Profile picture for Alta Net @altabiznet

@taylor05

Hi, colonoscopy is usually done under light sedation only - there should be no intubation. Not to worry about this part.

What kind of GI symptoms due to antiphospholipid syndrome? Dizziness, cramps, constipation? Or reaction to solid fired foods, spices, or red meat? What is your diet?

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@altabiznet
My diet is fruits,vegs and meat. I just dont eat a lot.. I have very low iron count and they want to check for any bleeds even though I don't have signs of a bleed.. They are even having me swallow a camera for small intestine.. not till June. Thank fully...

REPLY
Profile picture for taylor05 @taylor05

@altabiznet
My diet is fruits,vegs and meat. I just dont eat a lot.. I have very low iron count and they want to check for any bleeds even though I don't have signs of a bleed.. They are even having me swallow a camera for small intestine.. not till June. Thank fully...

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@taylor05
Hi ,
I do get dizzy, but it's because of anemia I'm sure.

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Profile picture for taylor05 @taylor05

@taylor05
Hi ,
I do get dizzy, but it's because of anemia I'm sure.

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@taylor05

If not done yet, IV Iron infusions are usually prescribed for iron deficiency anemia. You can do 2 high dose infusions, which are not always well tolerated, or 5 lower dose infusions 3-4 days apart. Lower dose Venofer is better tolerated.
Wish you best. Keep us posted on your progress and results from your colonoscopy.

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