Small fiber neuropathy/esophageal dysmotility - LUPUS UK

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Small fiber neuropathy/esophageal dysmotility

Happy Funday Sunday y’all!

I see my rheumatologist this Wednesday. She usually scoots around my GI issues and defers to my GI doc when it comes to my esophagus. The bottom portion of my food tube doesn’t really move confirmed by manometry/imaging. I go for repeat esophagram tomorrow to assess dysmotility. Steroids helped tremendously with this. Now off, I’m back to feeling like food is forever stuck in esophagus. I can smell what I ate 4-5 hrs before because it just sits there. Always bloated.

My GI doc just started me on super low dose Buspar/buspirone 5 mg before meals. It seems to work a little but nothing profound. Keeps the mucus amount down. Doc said no pyridostigmine or bethanachol because my heart rate has rapid swings and I have reactive airway disease.

Has anyone tried anything else for SFN/esophageal dysmotility? My team suspects my GI issues stem from small fiber neuropathy as I have peripheral neuropathy along with dysautonomia and maybe POTS. I’d just like to go to my rheumatologist fully informed and ready to discuss options beyond just Plaquenil if necessary. I’ve tried Imuran and CellCept. They were no bueno for me. I keep my bed on a 6 inch wedge/incline. I keep away from foods that cause reflux.

Thanks in advance for any advice you can offer. Of all the things that came along with lupus, this one bothers me the most/effects my quality of life.

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I have autonomic neuropathy and my esophageal manometry showed decreased contractions. I take aciphex, just started amitiza and am on the “small meals” diet. I am doing pretty well but have had some unpleasant GI stuff in the past. Have you had the Smart pill yet?

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No smart pill. Just an EGD which was normal. I was also on steroids at the time. GI doc mentioned repeat EGD if esophagram shows marked stasis. Maybe I should ask about the pill. Good idea. Have a feeling it won’t be covered by insurance without GI bleed but would be easier to do.

I don’t get heartburn so both GI and rheum said no PPI. No complaints there. They constipate me horribly. I have early satiety due to SFN as well. I guess SFN prevents your stomach from stretching so small meals are the norm for me. I’ll have to ask about amitiza. Thanks for the advice/experience. Very very helpful.

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So glad you found my comments helpful. Both my GI doctor and neurologist want me to have the Smart pill, so I do not think they anticipate an insurance issue. I have not had a GI bleed. If you ever want a second opinion, I am happy to recommend my doctors. I brought up IVIG and was told it was “very effective.”

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I am sure your docs know better than I. I could never get those things approved as a GP. I did ask about IVIG a while back. I thought it’d be appropriate in refractory SFN secondary to lupus. I was referred to an immunologist who had no comment on giving IVIG. A neurologist told me it was the rheumatologists arena to give IVIG for SFN. I could revisit that option this week as well. All good points.

Would you mind sending me the names of some people you see? I did see there is a guy in Texas who deals in autonomic neuropathy and autoimmune conditions. He’s running a clinical trial on using IVIG but it’s by invitation only.

clinicaltrials.gov/ct2/show...

I’m very hesitant to ask for second opinions. I need to get over that. I always get this feeling that other docs think I should know better and am wasting resources by asking for more opinions. I’m really really bad at asking for help.

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Will message you.

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I relate to all you describe only mine is Sjögren’s related SFN with lower GI dysmotility for the most part. I struggle to swallow food without sipping water between each bite and I do get oesopheal spasms I believe but not PoTS or gastroparesis thankfuly. The other think I share is that PPIs constipate me horribly but I’m meant to take them for Gastritis.

However I take maximum Ranitidine instead and a powerful constipation med too.

Like you with Lupus this is the aspect of Sjögren’s that most badly affects me at present - no useful advice but much sympathy from me. X

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Thanks twitchytoes! I too must drink a cup or two of water to get food down. I have sicca on my list and have tear plugs for dry eyes. Salivary gland biopsy was negative and no sjogrens antibodies ever found so never garnered formal diagnosis. It seemed that my rheumatologist was gunning for this diagnosis until my ANA and LAC turned positive with low C3/C4.

I do appreciate the thoughts and sympathy. Means a lot. ❤️

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Yes there’s so much overlap for many of us I know. I am always being told by dentists and oral medicine people that I can’t possibly have Sjögren’s because my gums are mostly okay, dental problems all historic and ultrasound of parotids etc all good. Yet my lip biopsy was 100% positive?!

My gut issues, fatigue and SFN are probably the worst ones and sicca is just big hassle rather than a debilitating condition for me. I’ve always been sun sensitive, have positive ANA, Raynaud’s, EM and was previously diagnosed with RA. I get rather exasperated by the assumption that sicca is always the worst aspect of Sjögren’s although I know it is for some. Not being able to swallow or digest food well is so very debilitating though. X

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Funny thing. I have gum recession. Haven’t been to the dentist in too too long. Reason being...last time I went, I needed a small filling and could tell I was having trouble swallowing. Then I got horrible pneumonia. It’s where my story begins and my snowball rolls.

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Oh sounds horribly familiar to me. I think sometimes that my childhood dental traumas triggered my autoimmunity - pneumonia, whooping cough, alopecia aerate. But then my childhood dentist told my late mum that my dental problems were due to infant measles and chicken pox having led to weak crumbly teeth so who knows chicken or egg?

I had an extraction of a tooth that had been root cannalled twice 3 weeks ago and then dry socket so now the next traunch of root canal removal and replacement in late October is giving me mini panic attacks. It’s the combination of the swallowing and even more so the local anaesthetic injections which I find excruciatingly painful and one earlier this year paralysed my face on one side for a week! The whole extraction / dry socket thing has caused some kind of horrible flare up! X

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I can totally see this happening. I hate the numbing medication too because it jacks up my face for hours and hours. I couldn’t go out in public drooling with a half droopy face. I have work done without it I hate it so much. Sometimes painful but we are all so used to it what’s a little pain.

I hope your tooth/socket gets better. That sounds miserable. Did they give you antibiotics?

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No they just packed the socket twice full of dressing with oil of clove and antiseptic - maybe some antibiotic too. It seems to be healing at last but my mouth tasted vile and I’m getting one of my vasculitis rashes across my belly! Our mouths are so central extractions leave us open to infections and trigger AU flares so I’ve discovered🤷🏼‍♀️🙄🥴

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Hello Jmiller123.

I'm not able to offer any advice here but just popped in to say that you and I seem to be following a similar path.

If you recall, you replied to me when I posted about a severe reaction to Mycophenolate, which appeared to be exactly the same as the one you experienced. I was so thankful for that reply - the rheumatologist was so dismissive (they’re powerful drugs, you know) that knowing you had experienced the same validated my own experience - and saved my sanity 😉. So thank you for that.

My GI issues have been ignored and dismissed for the last four years. When things got really bad earlier this year I had to stand my ground and insist that my GP refer me to gastroenterology. Endoscopy last week showed duodenitis, gastritis, inflammation in the antrum, an area of erosion and Barrett's Oesophagus- currently awaiting biopsy results (no polypharmacy, so can't be blamed on that). And I have gastric motility tests this Thursday. So...I'm chasing along behind you, in many respects.

Interestingly, steroids helped me too...though the injection I was given in early July is wearing off now, so hmm.

I was prescribed fludrocortisone 100mcg daily for orthostatic symptoms but it resulted in a steep rise in supine BP. As my BP doesn’t drop in the night (I'm a non-dipper) I stopped that as I didn’t fancy adding a CVA to my bag of tricks! I've asked them to try and find a alternative drug that doesn't cause supine hypertension...so we'll see.

So...I know exactly where you’re coming from when you say that the SFN and oesophageal dysmotility are the things that bother you most and have the biggest impact on quality of life. Me too, so many commiserations.

I too researched IVIG as a possible treatment for refectory SFN. It's almost impossible to meet NICE criteria for treatment under the NHS (the fees for private treatment are prohibitive).

Think it's a good idea to raise that possibility with your rheumatologist again...even though you don't like asking for help (me neither). It's always much easier to advocate for others, isn't it. But hey...shout up and ask. You deserve to be as well as you possibly can be, and this stuff can't be beaten by will power alone - though I bet you've tried.

So...wishing you well with the rheumatologist appointment. Sincerely hope that they offer options that are going to improve your symptoms and quality of life. Keen to hear how you get so will watch out for any updates.

Good luck.

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Aaaaw Foggyme. You brought a tear to my very dry eyes. Thank you. Been a rough day.

I definitely will ask about IVIG again. POTS is the pits. Isn’t it? Propranolol has helped me quite a bit. Sometimes makes me super tired but has given me more good than bad days so I’ll take it.

Hopefully not too much new this week!

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Aww..no crying Jmiller623...but no, wait...crying is just what those dry eyes need.

So the pressure's on. I'm going to have to think of ever inventive ways to make you squeeze out the teary stuff...😭😭.

Hope today's been a better day for you.

xx

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All my problems started with difficulty swallowing, inability to get food down and reflux. I ignored it for far too long, and didn’t see a GP until I’d lost a lot of weight.

I was fast tracked to gastro, and an endoscopy showed ulceration all along my oesophagus and slow motility. Since then, my diet has to be extremely restricted or food gets stuck and it doesn’t sit there, it has to be brought back (sorry). It was a matter of experimentation to find what goes through and what sticks. I’m on a lot of Omeprazole to dampen the reflux, and remain underweight.

Since then my bowels are not co operating, and that has to be dealt with.

I’ve been diagnosed with Sjögren’s now. No idea whether that was what caused the whole thing because I have a mixed bag of AI.

I do hope you get some answers and relief. Fantasising about the old days of a good meal and glass of wine, or going out for a meal is not fun.

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😍 Me too, dear lupiknits: 🌟🌟🌟🌟🌟fantasy good meals a go go‼️❤️🍀❤️🍀❤️🍀

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No need to be sorry. Yes! Sometimes I cough up food in its whole form. It’s hard to explain to care providers. They look at me like I have eight heads unless it’s GI doc. Every morning I do a nasal rinse to get food/reflux gunk from my sinuses. My whole cabinet is full of soup or things to make soup. Never thought about it but when I was working I defaulted to soup and a soft pretzel for lunch almost everyday. Just last evening, I totally inhaled a whole bean due to failed swallowing. Sometimes I choke on my own saliva. It’s horrible. The buspar helps a little but I feel like I deserve a trial of something else beyond Plaquenil.

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Lots of sympathy. I’ve had the up the nose/ back of throat problem.

Soggy soup and plain yogurt are a go to. The worst part is when medication gets stuck and has to be regurgitated: a waste of meds and the majority taste really bad.

Sometimes sipping fizzy water makes the blockage easier to return, other times warm tea. The joy when I feel a gurgle going through like a drain unblocking! Reflux is rare for me now I seem to have spotted my personal triggers.

I’ve never been disbelieved about it: the endoscopies were enough. It’s clear I don’t have as many problems as you, and I hope it helps that you aren’t alone in this.

I want a huge trough of 1970s poor student spaghetti now. Or a curry. Or .... a girl can dream 😉

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You’ve got great replies, jmiller, from v experienced folk. Not really much i can add, but this subject has always been close to my heart, so:

My 3 primaries, SLE+hEDS+PID, were all v early onset, as is my collection of secondaries inc sjogrens, small vessel vasculitis, sclerotic issues etc etc. I’m 65 & have been managing mouth to ass immune dysfunction & connective tissue disorder-related neuro+musculo GI slow transit dysmotility ever since i was born.

Meanwhile medics have investigated & diagnosed every section from mouth to ass. I’ve had almost all the usual upper GI & lower GI investigations + tertiary procedures like video capsule endoscopy & MRI enterography specifically because my small bowel needed more imaging.

Rheumatology + immunology + gastro + colorectal + periodontist treatments & the gamut of self help/lifestyle techniques have me relatively functional now considering that debilitation progression is slower, but remains relentless...eg nearly 2 years ago i segued from insufficiency into intestinal failure gastroenterology had to put me on long term predigested aminco acids ( prescrip exclusive elemental enteral nutrition aka EEN)...basically my small intestines have given up digesting food...our job now is to stop me segueing into nasogastric tubing, and parenteral butrition

If, as i suspect, you also live managing a significant degree of lower GI tract motility issues 24/7, maybe, for what it’s worth, this will be useful to you....this is the stuff that has been most effective at slowing the relentless progressive debilitation of my whole GI tract top to bottom:

- as much physical activity as i can manage + stuff like meditation etc AND help from gastro specialist bowel retraining & biofeedback clinic

- exclusion dieting: Low FODMAP specifically, for 4 years now with the help of gastro specialist dietetics & nutritiin

- rheumy lupus meds reducing oral inflammation

- gastro Barrettes oesophagus-type treatment protocols & self help techniques

- immunology’s long term daily antibiotics for PID which limit the small intestinal bacteria overflow (SIBO) related gastritis due to the inevitable gastroparesis etc (for 6 years domperidone helped, but it made my dysautonomia worse)

- EEN + lupus meds (especially pred) putting a stop to chronic malabsorption of both food & meds (am now getting much more bang for my buck from all my meds)

- the colorectal chief’s daily methylcellulose (am now so hypereactive to all food residue that this is the only laxative + motility agent i can tolerate & it really helps)

- immunology’s long term 3-weekly IVIG for PID (am hoping this is helping reduce the neuropathy (inc SFN) in my GI tract, but neuro doses of IVIG are much higher than PID doses, so...)

am bound to have forgotten stuff...but am sure that’s more than enough! Hope something in there is useful to you or others. Please keep us posted

🍀❤️🍀❤️🍀 Coco

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You’ve reminded me I’m going to go down the biofeedback route for the ass end! Appointment last Weds, but I was preparing for it Friday before I realised I’d missed it! Fortunately the community specialist nurses are forgiving and give another appointment.

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Oh GOOD, PHEW 😅...hope you get a specialist as good as my Gastro Bowel Retraining & Biofeedback Clinic’s Tracey @Addenbrookes...i think of her every day 🤣🤣🤣🤣...before her, i had worked with another good specialist attached to our smaller more local hospital who was great too, but this was a year or so before Addenb got onto this aspect of my stuff & figured out how far my issues had progressed...so my experience of these specialists has been good! Hope you’ll let us know how this goes 🍀❤️🍀❤️🍀❤️

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Thanks Coco!!! I did read your profile and we have a lot of similarities. I too was evaluated for EDS but never received genetic testing. I thought I might have vascular EDS as my uncle died at age 41 from ruptured aortic aneurysm and we all have some form of lupus on that side of the family. I’m not hyper mobile enough.

You really intrigued me because when I was conceived, my mom was taking danazol (DES like hormone) for endometriosis. She was told she’d never have another baby. Some how I’ve been fighting since birth to make it in this world. I also have low immunoglobulins mostly IgG. But my body does churn out lupus anticoagulant enough to take my PTT from 45 back to 12 when treated.

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Gosh! we do have stuff un common....With chronically below ref range immunoglobulin G, are you in care with immunology and being investigated re a primary immunodeficiency + considered for IVIG?

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I did see immunology. They weren’t impressed stating since only my IgG was low that I didn’t have an immunodeficiency. My subtype IgG3 was the culprit. Still nothing. He signed off on my case and that was that. We only have 2 immunologists here. Now that I’m off steroids, maybe my rheumatologist would recheck and if low again could try IVIG. Y’all are making me think I should really push for it this go round. I think my GI doc would advocate.

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Hmmmm...are you in the UK? If you’re in the USA criteria & protocols will be different...Kayhimm is in the usa

Here in the uk, IVIG criteria are v strict. My rheumy referred me to immunology when she realised my Ig G,A,M are chronically below ref range...immunology put me on long term daily antibiotics which damped my PID-related chronic multi system infections...so immunology spent several years retesting to be sure my Igs were all consistently below ref range before offering me IVIG only after pneumonia broke through the antibiotics & i then was due to have spine surgery and my immunology chief said i could only have surgeries of any kind after i’m on IVIG...

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I have Achalasia and that sounds like what you have. I have had a swallow test along with the motility test. I am waiting on being scheduled for surgery to fix the problem. Do you think it is related to Lupus?

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Will find out if it’s progressed to achalasia today. As echoed by others, much of my problem lies in motility. I do believe it’s caused by small fiber neuropathy from lupus. I think it’s more common in those with APS and Sjogren like symptoms from what I’ve read and heard.

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Yes, new studies are showing a link between neuropathy and aPL positivity. Maybe you can get a handle on the IVIG situation here. I know it is a struggle for doctors to get approval. But in certain cases they are getting it off label, I think, if first trial is successful.

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Maybe its s cervical esophageal web problem?

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EGD was completely normal in December. Not even gastritis. Must’ve been doing something right. I’m guessing unlikely web but yah never know. Things change all the time.

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I just finished reading the replies to your situation. I have similar symptoms but not to the degree found here. I do have regular GERD type reflux without Barrett's. I also have bile reflux which is not as common. Everything seems to be collecting in the esophagus and causing problems. My GI guy recommended taking two omeprazole daily to calm things down. I know this is not a recommended path long term but I was able to get things under control for awhile. Now they have flared up again and I am back on twice daily omeprazole to see if I can get in front of the situation.

I drink "throat coat" tea which has a lot of homeopathic stuff (barks and roots) in it and that seems to calm the esophagus down. Also, reduced/removed things from my diet that trigger bile production. I have been making headway in reducing the inflammation. A morning clean out walking the dog and a hot shower helps opens up the passage.

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Hi, I’ve just been diagnosed with Gastroparesis, I had a gastric emptying scan and a ct entergraphy which showed them that food is going down way too slowly. I was told to take erythromycin long term. Eat about six small meals a day, cut out fibre in my diet, it’s not a healthy diet and makes it difficult eating out, a starter is all I can manage. My rheumy doc was maybe hoping that the result of these tests may join the dots on my very varied illnesses over the year.s. This is just another annoying illness to add to my lot. I sincerely hope they sort out your problem. X

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Thanks Lizard. Esophagram yesterday showed better motility now that I’ve been on Plaquenil about 6 mos. plus new med Buspar which seems to be helping a little. However, I’ve gained a hiatal hernia and imaging evidence of aspiration. I have a feeling that I’ll always have vague GI symptoms from here on out just as you’ve alluded to. I can deal as long as they don’t get worse. Seems like SFN is a rotating symptom causing trouble maker🤞.

I’m sorry that it’s affecting your QoL so much. At least we can dream and there is lactose free ice cream. 🥩🍔🍕🍤

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Pleased to hear that, I’m just back on hydroxy but too early to see if it helps, but yes, the lactose free ice cream is a real treat. It’s just one thing after another isn’t it. Hope you continue to feel better x

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Hi everyone. I get so confused by all of this medical jargon. I had a barium swallow test due to FOOD getting stuck in my esophagus and was told that my muscles aren’t contracting properly to bring the food down. I’m not sure what the diagnosis for that would be but I wasn’t given anything for it or anything to do about it. I also had gastritis.

My ANA has been positive over the years along with being negative from time to time and I also have psoriatic spondylitis which causes inflammation of my spine.

I was tested for sjoegrens but antibodies weren’t positive. My teeth are horrible and I would rather be toothless. I’m in Enbrel for my psoriatic disease but not much help. Prednisone is awesome but they refuse to give it to me due to side effects.

Anyone know if the swallowing issues I have with the muscles not contracting properly to pull the food down has a name?

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They just call mine esophageal dysmotility.

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I also suffer from both SFN and esophageal dysmotility. Sadly mine has been largely dismissed but as of late things have improved.

My gastroentologist stretched my esophagus but that did nothing. I don’t think they understand. I also get terrible spasms at times that have landed me in the emergency room. Sometimes in the esophagus and sometimes at my stomach opening. When I revisited my gastroentologist after the worst incidence, he said ‘I told you there’s nothing else I can do so I don’t know why you’re here.’

In addition, whatever is happening affects my voice at times - a weird type of stutter sound.

After three years, i’m finally being allowed to reduce prednisone and since I’ve gotten below 10 mg things have improved somewhat but maybe it’s just coincidence. I hope you can figure things out.

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Thanks Goldy. Sorry your GI doc is dismissive. I’m grateful. Of all my docs, he’s the nicest/listens most. At its worst, the whole bottom half of my esophagus wasn’t moving. I hear you about the emergency dept runs. I’d aspirate constantly and drop my oxygen saturation pretty low. It definitely makes your voice sound airy, gurgly and bubbly at times because your vocal chords get irritated and spasm when you aspirate. But I also wondered if this was SFN because your vocal chords and diaphragm are innervated by the vagal nerve and branches of it. Sometimes I’d feel like I had to work to really get a good breath in. My lungs have always looked okay when imaged.

I don’t think GI symptoms like this are common in lupus so it’s comforting to know that I’m not alone. I see rheumatology in a few hours. I am hoping to ask about IVIG as it seems to help some with SFN. I have a feeling since things are improving without that I’ll get shut down but I won’t know unless I ask.

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Interesting. I also feel that i can’t get a good breath often but testing was fine until one time recently when it was at 82 while laying down so someone finally took note there are some irregularities. Can;t do much about it yet but at least i feel validated.

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Just closing the communication loop for the post. Asked about IVIG at yesterdays appt. In order to get it approved for neuropathy, rheumatologist says I’d have to try gabapentin and/or lyrica first. If I failed that then I could try IVIG. Fair enough.

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That is great news! I actually thought it was harder to get than that, though my neurologist said « very effective but tricky. » The tricky I presume meant battling with insurance.

Please keep us posted.

Xk

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