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This topic contains 12 replies, has 0 voices, and was last updated by  Rocky36 4 years, 10 months ago.

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  • #8419

    Rocky36
    Member

    [COLOR="Navy"][FONT="Century Gothic"][SIZE="2"]I have CIDP. Not a huge problem thus far. The usual pins and electric shocks and burning thighs and numb toes. Same old, same old — eh? ;)

    But now I have arthritic swelling and pain in the knuckle joints of my right hand … thumb, index and middle fingers. Nothing in the fingers themselves so far.

    What information do you all have on this combo? I see reference to Enbrel, but that seems a bit drastic.

    I will be contacting my neuro, but hearing from what others have done for something similar is, as you all know, oftentimes more informative than what one might get from a doc.

    I’d like to be armed with some info before I ask her about this. If she seems open to suggestion ( and she does seem the type to be so ), I might suggest something I’ve learned here.

    This is actually more annoying than the CIDP symptoms though I suppose I should knock on wood about even thinking such a thing. The problem is that I do some serious needlework … a long time serious hobby, so serious I can lose all track of time … and I am completely right-handed.

    Bad enough I had nasty repetitive motion injuries and had to give up piano. I’d be one darn mad olde phart if the hands went kaput altogether![/SIZE][/FONT][/COLOR]

    #86982

    tara74
    Member

    hmm maybe its serum sickness. Im just kidding. actually tomorrow I will find out if I can put rheumatology to rest. I will get blood test results that would reveal which if any illness could have caused my ANA. but even in the onset of gbs I had deep bone pain. like frost bite. but your saying actual arthritis with swelling and everthing i have had that too right before this last hosptialization but I cant tell you what could help for it or what even caused it. I know its excrutiating. I hope it gets better for you.

    #86986

    homeagain
    Member

    See IF or how WELL your thyroid is functioning. That’s what happened to me. I’d been controlled w/treatments for ‘hypothyroid’ for over a decade.. but it flared up less than six months after I came down w/CIDP…at the time, undiagnosed. AND it flared up big time! Thyroid too was diagnosed four years later as ‘Hashimotos’ Thyroiditis’ and auto-immune issue as is CIDP.
    I had to take my wedding ring off? And still can’t wear it and my feet swelled up three shoe sizes! On the right meds? Got back to ‘normal-ish’ in about 3 weeks.
    BUT, between the CIDP [which included swelling], and prior injuries I will and DO swell big-time at the drop of a hat! How much I swell, tells me that I’m either doing or eating something wrong, a new med is wrong or that I mite be having a ‘relapse’…
    The hardest part of seeing an ‘endo’ is waiting for the appt! IF your GP knows of someone in your area who can do a ‘personal’ referral? You are likely to be ‘fit’ in for an initial appt then further testing. [That's what happened to me and I got in in 2 weeks!] Testing is usually easier than ‘neuro’ type tests, less invasive as a rule? And definitely far more ‘passive’ for us, the patients, than many other docs we see! Usually, it only entails a heap of blood vials and maybe a sonogram of your thyroid..if that is the issue. No sweat.
    They are really useful docs for ‘eliminating’ lots of possible ‘other’ medical issues. And, it could cross off a bunch of other issues and possible problems off of THE LIST!
    Good luck! Keep us all updated on how things are working out..please.

    #86993

    pjthomasset
    Member

    Where you tested for Lyme disease?
    Arthritis and peripheral neuropathy are Lyme sympthoms.

    #86994

    Rocky36
    Member

    [FONT="Book Antiqua"][COLOR="Navy"]No Lyme Disease.

    No swelling.

    “Just” joint pain with swelling in those joints.

    CIDP post breast CA is the dx. I just wondered if yet another auto-immune, rheumatoid arthritis, is now showing up as well.

    I will discuss it with my neuro.[/COLOR][/FONT]

    #86996

    HI Rocky,
    My miracle drug is Naproxin for joint pain and inflamation. It will upset your stomach. I only take one in a day with food and only when my hands get really stiff and painful.
    Sue

    #86997

    Rocky36
    Member

    [QUOTE=petalinthewind]HI Rocky,
    My miracle drug is Naproxin for joint pain and inflamation. It will upset your stomach. I only take one in a day with food and only when my hands get really stiff and painful.
    Sue[/QUOTE]

    [COLOR="Navy"]And the arthritic pain/inflammation is part and parcel of your CIDP?

    I wondered and about decided it was exactly that … all auto-immune.

    I have a problem with aspirin type drugs, naproxin being one of them. I bruise easily even without the aspirin type meds, but it may be something I’ll just have to put up with …

    Thanks for the reply, Sue.[/COLOR]

    #87008

    tara74
    Member

    I have been thinking about neurology vs rhematology it so facinating and I am observing that rheumatology is highly sensative to environmental factors like sunlight, menstral cycle, barametric pressure, drug interactions, diet. neurological autoimmune conditions not so much agrovated by outside factors in that way.
    hmmm

    #87029

    selahsmom
    Member

    My three year old has cidp that was caused by Fifth’s disease. She got Fifths and had terrible arthritis and a group of doctors were trying to figure out what was going on and she took motrin, naproxin and methotrexate for her arthritis which did not help. She was later diagnosed with gbs and eventrually cidp. The neuro who started aggressively treating her said that the ivig would take care of the cidp and the arthritis and it did. The rheumatologist is amazed. Neither doctor knows whether her arthritis is autoimmune or reactive. Remember, not all arthritis is autoimmune. There are several that are not. Are you getting ivig for your cidp. Maybe you can up your dose a little and it will do the same for you. It is terrible to have multiple problems and we wish the best for you.

    #87052

    homeagain
    Member

    Did/are you going thru chemo or post-chemo treatments? They can and do a number on a person vis-a-vis the immune system! And chemo’s can damage the nerves like big-time!
    Did you also have a cold or flu during this time? Bet you did! As my own BC was ‘hatching’, so to speak is when the CIDP HATCHED following a long pneumonia bout. So it could have been ‘paraneoplastic cancer’ causing the PN.
    Most nerves are ‘damaged’ And CAN heal once you are off the post-chemo ‘chemos’….aromasin, femara, arimidex..etc. It will likely take years tho, so you have to read up as much as you can about ‘peripheral nerve healing’….there isn’t much out there? But, the basic philosophy is that once the ‘toxin’ is removed the nerves will heal. And being on these ‘post’ drugs for FIVE years makes it a very long haul. All neuros can do is prescribe meds for the pains.
    The only other helps I’ve learned are a bood B-1 and B-12 [methylcobalanate, not cyanotcobalanate {sp?} along w/a good combo of magnesium, Vit D and a little zinc thrown in-to help w/asorbtion issues + nerve healing] A really COMPLETE metabolic blood panel should give you clues here as to what is missing or truly deficient. Watch out for B-vite complexes which include a lot of B-6 tho… IF you read all your vitamin labels? you’d be surprised at HOW much of this is thrown into almost everything! B-6 can cause neuropathies on it’s own. I use pre-natal multi vites plus B-1 +B-12 in addition…these too are keys to helping the calcium be asorbed and the nerves to heal. Try and get copies of your blood tests – they are an education in and of themselvles!
    Why the calcium? Chemo and post-chemo meds are notorious calcium leachers. Further if you take something like Neurontin or Lyrica? In the fine print that calcium loss [osteoporosis] is listed in teeny tiny print [under drug-prescribing information]!
    Sometimes it can go away? More times it doesn’t! Wish I could be more well, hopeful! I truly hope that you are one of the lucky ones! Also? IF you are on prednisone? That too saps away the calcium. I skipped that step as I was almost Osteoporosis when cancer was found and IVIG was my most ‘organic’ w/least stress on the body way to go! Tho that too, is hard on the liver and kidneys… it’s better than having ‘paper’ bones!
    We all try and do as best as we can w/what we have! My heart is with you!

    #87058

    Rocky36
    Member

    [QUOTE=homeagain]So it could have been ‘paraneoplastic cancer’ causing the PN.[/QUOTE]

    [B][COLOR="Sienna"][FONT="Book Antiqua"][SIZE="2"]Yes, that’s exactly what I said previously. Breast CA kicked off the CIDP, which is not uncommon. 1 in 10 breast, ovarian or lung cancer patients will develop one of the auto-immune diseases.[/SIZE][/FONT][/COLOR][/B]

    #87197

    Hi, Rocky.

    In the mid-1980s I had what was diagnosed as an allergic arthritis — pain in the joints, primarily fingers and knees, which wasn’t rheumatoid and wasn’t brought on by joint damage. The doctor said that in this case allergic meant that it was probably a faulty immune reaction, and a course of steroids brought it under control.

    In the early 1990s I started having breathing and swallowing problems which went undiagnosed (the doctor said it was probably just early menopause, e.g., it’s all in your head). In early 1999 I started with the tins and needles of CIDP. Since then I’ve found out that the breathing problems are from sarcoidosis — another autoimmune disorder.

    My neurologist believes that the swallowing problems are from autonomic CIDP damage, and that it’s possible the joint problems were actually the first indication of oncoming CIDP.

    And fairly regularly I have recurrent joint pain.

    I need a holiday — from my body! :cool:

    Deb
    London

    #87199

    Rocky36
    Member

    [FONT="Arial Narrow"][SIZE="2"][COLOR="Sienna"]Hi, Deb …

    So you’ve had a really rotten assortment of auto-immune problems. I’d wondered about my new problems with arthritis. RA being auto-immune, it seemed likely I was dealing with two auto-immunes, CIDP and RA.

    Hearing from you, I know there are at least two of us with assorted problems.

    You’ve had an awful lot to deal with. So far just the two for me.

    Thanks for posting! At least I’m pretty sure now that I’m not just going completely daft !! :D

    Rocky[/COLOR][/SIZE][/FONT]

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