1. < Autoimmune Diseases

Sojgrens Syndrome, Infusion

Posted by penn @penn, Oct 20 12:31pm

I start on Oct 28. I get IVIG 2 weeks later,
I have horrible burning in my legs, legs are very cold!!! My Rheumatologist, it has to be done in here office because of the, could happen side effects. I don't anymore I can't leave my home because of the pain. S.F.N do you have difficulty pass stool? I am not constipated.
Also falled Laminectomy S-1 L-2 L-3 L-4 L-5 surgery by a butcher, so sitting is painful because I can't pass stool. Fusion failed MRI can see anything because of the fusion. I'm a very social person but stuck here unless I see my drs. I take 25mg up to 150, not all at once. Trazadone and 4 mg Hydromorphone 4 times day. In the car more!!!!

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penn | @penn | Oct 20 12:32pm

P.S. I start infusion for sojgrens, forgot the name Starts with R.

REPLY
1 reply
shelleyW | @shelleyw | Oct 20 7:53pm

penn,
This is horrible!!! I have Primary Sjögren's, but am seronegative with biopsy positive, 4 years ago. No one has ever mentioned any treatments to me, I figured it was because either I am seronegative or my doctors are all idiots, which they truly are.
I am am VERY MUCH interested in your whole story. Truly, from what triggered your diagnosis to all this horrible stuff.
I am sure I have SFN, not bothered to get tested. I have CIC, 17 years, nothing works. 3 small bowel partial obstructions, 4 complete impactions in anus-required digital removals, by myself (OMG they hurt!!) I have motility issues probably related to ANS issues and Hyperparathyroidism with elevated calcium, these all affect smooth muscle movements. I just had surgery for the HPTH.
All I know about my pSS, is from my research, my doctor and RH are less than useless. So, I really would like anything you want to share.
I have other medical issues that I have taken a break from pursuing new doctors.
Have you tried ice, heat or lidocaine 4%(unless you have a script for higher doses)?
Look forward to hearing from you. Take good care of yourself. ShelleyW
I do not know how all of your mentioned stuff is related, I would like to know.

REPLY
1 reply
Mentor
Becky, Volunteer Mentor | @becsbuddy | Oct 23 6:09pm
In reply to @penn "P.S. I start infusion for sojgrens, forgot the name Starts with R." + (show)
@penn

P.S. I start infusion for sojgrens, forgot the name Starts with R.

Jump to this post

@penn. Is the medication rituximab (rituxan)? I take it, no side effects for me!

REPLY
penn | @penn | Oct 24 9:33pm
In reply to @shelleyw "penn, This is horrible!!! I have Primary Sjögren's, but am seronegative with biopsy positive, 4 years..." + (show)
@shelleyw

penn,
This is horrible!!! I have Primary Sjögren's, but am seronegative with biopsy positive, 4 years ago. No one has ever mentioned any treatments to me, I figured it was because either I am seronegative or my doctors are all idiots, which they truly are.
I am am VERY MUCH interested in your whole story. Truly, from what triggered your diagnosis to all this horrible stuff.
I am sure I have SFN, not bothered to get tested. I have CIC, 17 years, nothing works. 3 small bowel partial obstructions, 4 complete impactions in anus-required digital removals, by myself (OMG they hurt!!) I have motility issues probably related to ANS issues and Hyperparathyroidism with elevated calcium, these all affect smooth muscle movements. I just had surgery for the HPTH.
All I know about my pSS, is from my research, my doctor and RH are less than useless. So, I really would like anything you want to share.
I have other medical issues that I have taken a break from pursuing new doctors.
Have you tried ice, heat or lidocaine 4%(unless you have a script for higher doses)?
Look forward to hearing from you. Take good care of yourself. ShelleyW
I do not know how all of your mentioned stuff is related, I would like to know.

Jump to this post

HI, SHELLY, PLEASE BARE WITH ME, MY COMPUTER IS GONE, BUYING A NEW SO I'LL DO MY BEST WITH THE PHONE WHICH I DON'T LIKE LIKE TO DO. IF YOU LIVE NEAR NJ I COULD GIVE YOU THE NAMES OF MY 3 MAJOR DRS. FOR THE SMALL FIBER NEUROPOTHY I HAD A BIOPSY TAKEN ON MY LEG WHICH CAME BACK POSITIVE. SOJGRENS RHUM. BLOOD WORK, SHOWED I HAVE AUTOIMMUNE, HASHIMOTO'S, I'M HYPO. SO, NOW SOJGRENS SYNDROME I GET IVIG INFUSIONS FOR S.F.N. AND STARTING 28 TH MY RHUM. IS STARTING INFUSION FOR SOJGRENS, IT STARTS WITH AN R HAS AN X IN IT RUBUXIN. NOT THE CORRECT SPELLING, PATIENTS WHO ARE FAMILIAR WITH WILL KNOW THE NAME. I HOPE I HELPED?

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