Anyone being treated for CIDP (chronic inflammato... - LUPUS UK

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Anyone being treated for CIDP (chronic inflammatory demyelinating polyneuropathy)?

Barnclown profile image
15 Replies

I understand myco + pred + immunoglobulin G IV are used in treatment.

Will be grateful to meet up with anyone who has experience of this

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Barnclown
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Signat profile image
Signat

I have been diagnosed with autoimmune autonomic gangliopathy which is considered a variant of CIDP. My recommended treatment is IVIG plus cellcept (my I). My insurance denied the IVIG and prefers U get high dose steroids. My neuro has written an appeal so I am holding off on the steroids until I get the appeal back. I should hear back the end of next week. From what my autoimmune neuro says, IVIG is great to put U in remission and the cellcept helps maintain it. If approved I will be happy to share my experience! Good luck!

Barnclown profile image
Barnclown in reply to Signat

Am so glad to hear from you, but am wishing you weren't having to cope with this

Are you living in the uk, or the U.S.?

Yes, my understanding is that IVIG treatment is extremely costly. So, your info fits.

I am going to be thinking ultra positive for you re your neuro's appeal on your behalf!

I wonder: how long have you been in treatment for lupus & what meds are you on?

Hoping you'll stay in touch

in reply to Barnclown

Hi Barnclown. I have come across someone who is on this combination for Sjogren's and idiopathic peripheral neuropathy. She is on the Sjogren's World forum and seems to have had her symptoms for many years and I think the IVIG is helping her a lot. She is based in the US though.

I'm still waiting to see the neurologist about what's going on with me but my GP depressed me enormously today when he said that he thought I would probably have to live with this horrendous nerve pain for life as the damage was already done and probably couldn't be reversed now. I didn't really take this on board properly at the time but now I have I feel rather angry. I've lived with it for over a year and the only time it was quiet was when I was on Methotrexate - which suggests to me that they could be addressing it by now with an immune suppressant or even IVIG infusions.

I have learned a lot from this community and will watch to see how people respond to your question with great interest.

Twitchy X

Barnclown profile image
Barnclown in reply to

v glad of this info & these comments twitchy. Vvv interesting from several angles

As I understand it, if a U.S. neurologist prescribes IVIG for a patient with full on health insurance, the prescription is fulfilled. But, as so often in the us, formal diagnosis fitting with strict criteria is required before a consultant prescribes.

I think about you often...am still having a nagging feeling that won't stop wishing you could at least try a spell on myco...even if just to know absolutely for sure it's not for you.

xo

in reply to Barnclown

Hey I do plan to ask the neurologist about Myco and IVIG - which my GP actually mentioned a few months ago - and suggested that I talk through drug options with this neurologist when I see him on 26th of this month. If you are offered them I will watch to see how you get on like a hawk!

I'm anxious because all neuropathic pain has intensified over my body since I got home but my feet and legs - knees especially are all on fire with pain. I think it is arthritis rather than RA in my knees alongside the raging neuropathy.

That said I took a clutch of pills last night including naproxen and co-codimol and slept like a log. I so rarely touch pain meds that they do work! I'm less stiff and pained this morning and credit anti-inflammatories.

We are strongly considering moving down to Glasgow in a year's time - getting help from a Glaswegian chap from the NRAS HU who lives there and knows where good GPs are and raves about the rheumatology service. Just have to raise the funds and find work and wait for youngest to finish school now! X

Barnclown profile image
Barnclown in reply to

Am vvvv glad of this update twitchy! As you know, nearly 12 months on Myco has made a HUGE positive diff for me since jan 2014 (on top of daily hydroxy + amitriptyline) but am still needing pred tapers to snuff out neuro cerebral flares and all my peripheral neuropathy continues as it's been for decades. Am prepping for my 3monthly rheumatology clinic in dec.

Take care & keep in touch..xo

in reply to Barnclown

Good luck with it all Barnclown - I know how waring the neuropathy is - more insidious than all out arthritic pain and for me, much scarier. Wouldn't it be wonderful to be shot of it at last?! Txx

in reply to

Sorry to crash the conversation but I am sure the Vasculitis service in Aberdeen do IVIG for certain types of vasculitis and were in a drug trial for it recently. Will see if I can find the link Twitchy.

My sympathy's to you both, my neuropathic type pain is thankfully not as severe. Xx

in reply to

I'm sure Barnclown would agree that you aren't crashing at all Keyes! That's interesting re the Vasculitis clinic. If I had a diagnosis that warranted IViG then I'm sure my GP would send me to the clinic or back to Professor Basu. But I can't self refer so unless my rheumy or the neuro recommend it I don't see how I would ever qualify for this type of treatment when only diagnosed with RA and Hashimoto's? The link would

be great anyway as BC is asking about this form of treatment. X

Barnclown profile image
Barnclown in reply to

No prob Keyes: twitchy is spot on: this is vvv helpful info. Thanks

Hi, I live in the Northwest and was diagnosed with CIDP four years ago having had Lupus and sjogrens for many years. I have tried Myco, IVIG (bad reaction) with no help. Can't toler prednisone so was losing the battle until my Neuro and rheum cons put me on ciclosporin a year ago. It's holding the spread at the moment thank goodness and Im get a little bit of a life back. I asked the forum when I was due to start on IVIG as I'd heard different things and as its really rare just one post said it had helped them. I Know how u feel ,it's scary but feel free to ask whatever, I'll help if I can. Xxx

Barnclown profile image
Barnclown in reply to

Thanks so much moo! Just reading your reply reassures & inspires me. I know cyclosporine can be v helpful. Take care & good luck...let's keep in touch xo

No problem, pleased to help as I know how rare our condition is. How does it affect u? Xxx

DRizard profile image
DRizard

I was treated with Rituxin or Rituximab. (IVIG x 2 did not help at all)

SYNOPSIS: Rituximab has been used “off label” for the treatment of primary chronic inflammatory demyelinating polyradiculoneuropathy (CIDP) with variable reports of success. These authors reported a high rate of response in patients who developed CIDP in the setting of other systemic immune-mediated disorders.Feb 1, 2019

Treatments: Rituximab

Barnclown profile image
Barnclown in reply to DRizard

Glad to have your input! Glad ritux works for you! Since I posted this here 6 years ago, I’ve also learned about ritux for CIDP.

SO FAR, my lead clinicians are now rheumatology + immunology + gastroenterology, and I’ve avoided referral to neurology for my chronic multisystem neuro issues thanks to my rheumatology & immunology treatments:

for over a year, Immunology now has had me on longterm 3-weekly IVIG for my Primary Immunodeficiency Disease, although of course my IgG serum dose is lower than that prescribed for CIPD. Due to COVID, I’ve had to self isolate so imm. has trained me to do weekly subcutaneous IgG infusions until it’s safe for me to return to infusion ward monthly for IVIG.

Otherwise, am doing pretty good on rheumatology’s longterm daily combined therapy lupus (+ vasculitis + sjogrens) meds (hydroxy + pred + myco etc)

But my early onset CTD+AID+PID-related mouth to exit progressive GI tract debilitation has segued into Intestinal Failure + CIPO + quite severe visceral hypersensitivity...have been on longterm exclusive elemental nutrition for 2 years now because I can no longer digest food...

the way I look at it: science is helping me to a much better life than would be expected for a 66 year old with my very early onset immune dysfunction & connective tissue disorder diseases. And here in my part of Great Britain I’m getting good care from the public ally funded NHS. So, I’m lucky

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