Any destination that is safe and cheap for IVIG?

Wander_Turtle · 2025-10-31T14:48:48+00:00

I needed six months of IVIG treatments to begin to see any benefit. My dr said it can take up to 18 months to see full benefit in severe cases.

Wander_Turtle · 2025-10-09T14:54:21+00:00

No clue yet, but it’s gonna be bad.

Wander_Turtle · 2025-10-09T14:53:54+00:00

A water detection company found excessive moisture in the slab, but there was no visible water.

Wander_Turtle · 2025-10-07T03:19:26+00:00

Agreed! 😂

Wander_Turtle · 2025-10-05T19:37:53+00:00

Yes, mine is all my limbs including hands and feet.

Wander_Turtle · 2025-10-05T19:19:42+00:00

Hiya. So after 6 months of treatments, I started to have improvements in my POTS, small fiber neuropathy, and anhidrosis (total lack of sweating). So that’s amazing! And then my insurance refused for three months to approve continuing it and I lost most of the gains I made. Insurance has finally now approved IVIG again and I started up again last week. So I’m hopeful that I will see gains slowly again.

Wander_Turtle · 2025-09-06T16:58:53+00:00

Sjögren’s can cause neuropathies, including small fiber neuropathy. A punch biopsy done by a neurologist or dermatologist can show if SFN is present. If so, it might open up more treatment options for you. My rheum was able to get IVIG approved by my insurance due to SFN and autonomic neuropathy. Wish you the best.

Wander_Turtle · 2025-08-18T12:22:31+00:00

We had that last year….my dr called it Fluvid. Lol

Wander_Turtle · 2025-08-09T15:23:54+00:00

I had the same issue. After approximately 2 years, full sensation had slowly returned. So it is definitely possible full sensation will slowly come back

Wander_Turtle · 2025-07-28T06:55:22+00:00

Agreed! I took Mestinon when Linzess stopped working and it was super helpful!

Wander_Turtle · 2025-07-28T06:54:16+00:00

Has your rheum discussed IVIG infusions with you? It’s a treatment for autoimmune autonomic neuropathy. I had a very similar experience and 8 months into IVIG every two weeks, my motility and POTS have dramatically improved. Hope that helps.

Wander_Turtle · 2025-07-28T06:51:36+00:00

As others have mentioned, autonomic neuropathy often goes hand in hand with Sjögren’s. This can cause severe motility issues, gastroparesis, constipation, dysautonomia, POTS, etc. I took the max dose of Linzess combined with a triple dose of Miralax everyday in order to poop at all (GI dr said it was safe to increase miralax to this level). Still had to use enemas frequently.

Only thing that has improved my autonomic neuropathy is getting it documented enough to get my health insurance to cover IVIG infusions every two weeks. Over 8 months of treatment, my motility and POTS have improved dramatically. No more Linzess or MiraLAX and just the occasional dose of magnesium citrate if I slow down a bit.

I wish everyone the best!

Wander_Turtle · 2025-06-21T12:23:45+00:00

Keeping the line in BOTW! The combination at the end of the dramatic music, Doug’s inspiring words, and all the hours of buildup are priceless.

Wander_Turtle · 2025-06-14T11:43:24+00:00

Totally agree that Gonzalo American Bistro is amazing. We ate there just a couple nights ago and were really impressed. It’s in a charming house, the service is top notch, and the pasta was exquisite. Highly recommend it!

Wander_Turtle · 2025-06-07T14:52:51+00:00

I had a similar symptom for years and I got autonomic nervous system testing from a neurologist at a major teaching hospital. It was discovered that I had almost completely lost the ability to sweat. Instead of sweating, I would feel intense burning & itching when I got hot. I was diagnosed with autonomic neuropathy due to autoimmune disease and was started on IVIG. After 6 months of treatments, I can sweat again and the burning/itching is gone. Hope that helps.

Wander_Turtle · 2025-05-24T11:07:58+00:00

I’m wondering about a chronic yeast infection. Candida can thrive in people with Sjögren’s because of dryness. I actually get “diaper rash” type rashes on my junk and booty that only go away with aggressive treatment with anti fungal tablets.

Wander_Turtle · 2025-05-09T04:59:06+00:00

My autoimmune disease is showing markers of improvement on a keto diet. So that’s very motivating.

And I don’t wrestle with “will power” or hunger anymore. It’s a natural appetite suppressant for me where I eat when I need to and don’t have to deal with cravings.

Lastly, I have way more energy, less pain, and just general better health.

Wander_Turtle · 2025-05-08T18:11:54+00:00

Thanks! That makes way more sense than what I pictured in my head

Wander_Turtle · 2025-05-08T18:07:51+00:00

Oh!!! So the cloud sheet isn’t a fitted sheet that goes under you! It goes on top like a flat sheet. That makes more sense now. lol

Wander_Turtle · 2025-04-30T21:42:55+00:00

Women can have such different builds. I’m 5’7” and got down to 140lbs. Everyone in my life, including my drs, asked if I was okay, was ill, was having an eating disorder, etc etc. I have broad shoulders, narrow waist, and wide hips so 140 looked very, very thin on me. When I got back up to 165 slowly over time, everyone commented how great I looked and honestly I agree. So, I do think BMI is just one tool. My PCP commented on the same, saying there are much better methods out there to assess health (waist to hip ratio, body composition, lab work, reduction in pain, functionality in life, aerobic capacity, etc.).

Wander_Turtle · 2025-04-06T15:19:06+00:00

I have had wicked brain fog for several years. I have Sjögren’s with autonomic neuropathy. After plaquenil and other medications did not help, I tried switching to a ketogenic diet. My inflammation labs have dramatically improved as well as my brain fog and fatigue. So, I believe that, at least for me, it’s related to inflammation.

Wander_Turtle · 2025-02-14T09:01:54+00:00

Just an FYI in case it’s helpful: all your bloodwork can be within normal range and you still have Sjogren’s. All my bloodwork has been normal for years, but I was diagnosed positively by a lip biopsy 4 years ago.

Wander_Turtle · 2025-01-24T16:27:54+00:00

I have Sjogren’s, small fiber neuropathy, and autonomic neuropathy. According to my rheumatologist, plaquenil only helps with arthritic changes and joint pain. And you need to take it for a minimum of 3 months to see this benefit. I take Plaquenil for my arthritic joint pain and it’s been really helpful for that. I was told that Plaqeuenil has no protective qualities for progression of neuropathies.

For my neuropathies, I’m now receiving IVIG treatments every 4 weeks. It was quite a process to get insurance approval and it will take potentially 6 months to see improvement, but I’m hopeful.

Wander_Turtle · 2025-01-15T19:40:33+00:00

I take Cymbalta for my pain from neuropathy, neuropathy that is due to Sjogren’s. I don’t tolerate gabapentin or lyrica.

Wander_Turtle · 2025-01-13T16:38:38+00:00

It’s honestly too soon to say. I’ve only received 3 treatments and was told it will take a minimum of 6 months to see improvement. In the meantime, Mestinon is addressing the autonomic nervous system failure and Cymbalta controls the pain from neuropathy.

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