Sensory neuropathy set off after IVIG

    • May 5, 2010 at 10:00 pm

      Sensory neuropathy set off after IVIG

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      My husband finished his first IVIG therapy 2g/kg just 2 weeks ago . For the first week things were improving, the weakness in his legs and arms was improving.

      Then 1 week ago all the sensory neuropathy started to return in the usual places. This week the level of pain in the upper legs especially when walking, in the buttocks area and back have increased to worse than before treatment levels.

      Has anyone had this experience? Is it possible that the immune respose has been raised and is actually more aggressive because of the IVIG? Could it be the IVIG doing its job ( we hope so)?

      Thanks for any insight. He is beside himself with anxiety .

      Kathy

    • Anonymous
      May 6, 2010 at 11:42 am

      Kathy,

      Can’t really help you other than to say it is probably good news that he felt somewhat better after IVIG.

      Tell you hubby to be patient, I know it is hard. IVIG works differently for each person, sometimes it works right away and others have to wait longer.

      I need to have it every month for it to work for me. IVIG only lasts a few weeks before the effects wear off. That is why it needs to be repeated.

      Try and find local support group so your hubby can talk with others going through the same thing as him.

      Rhonda from Canada

    • Anonymous
      May 6, 2010 at 8:52 pm

      I guess it depends on what your inflammatory #’s were to begin with? Then, if you are new? They’ll test you often after you start for the next 3 months, that’s the usual protocol tho it’s usually for super effect and/or reactions.
      For me, I’d found the first doses were well, ‘strange’ at first? One thing that’s been consistent with first day dose has been-My Ankles Totally Relax! Usually since onset? They’ve been tighter than guitar strings! Heating pads, Meds…nothing has impact. IG? Well? They go limp/tired/happy for the let-up!
      I was dumb numb from the ankles down at first? Stinging from mid-calf on up to mid-section. With the IG? It can vary? But I get new zeeps and shocks now…the kind that tell me the nerves are trying to ‘reconnect’! I never think that there is worse happening…just better! Thinking positively can and does help this! Even tho it is weird, perverse, frustrating and well, makes ya go wide-eyed w/each zap! Thinking it so, mite not make it so? But it sure helps to get your mind in gear w/your body to help it be so!
      It takes a lot of will, and positive mind-set to get where you need the right treatments and therapies… Do NOT give up! Keep faith and hope always!

    • Anonymous
      May 6, 2010 at 10:51 pm

      Homeagain could you please tell us what you mean by infammatory numbers? My husband has had IVIG for 3 years almost and he hasn’t been tested for anything while getting it except for liver and kidney function quarterly. I don’t know if he was ever tested for “infammatory numbers”. He had LP, EMG, NCS and Athena Lab sensori motor- panel when being diagnosed. Thanks.
      Laurel

    • May 7, 2010 at 10:36 am

      Laurel,

      What is this test you referring to – “Athena Lab-sensorimotor testing”. What is this test designed to check? This test has never been tested for this.

      Thanks ,
      Kathy .
      p.s. I am sending you a private message as well.

    • Anonymous
      May 7, 2010 at 11:45 am

      Hi Kathy,
      It is test looking for certain anti-bodies that are specific in certain types of CIDP (I think). Here is the site that describes it [url]http://www.athenadiagnostics.com/content/test-catalog/find-test/service-detail/q/id/1342[/url]

      We had to pay about $1500 out of pocket as the medical plan and our insurance didn’t cover it. The blood is collected at a local lab. and sent to the States. My husband didn’t have any of the antibodies when his results came back.
      Laurel

    • Anonymous
      May 7, 2010 at 7:41 pm

      I get my blood tests drawn by many docs…so I bring copies of recent tests so some aren’t duplicated [unless there’s a reason] The key test I seem to always get is the ‘ANA’ [Antineuclear antibodies] The test below does include less complicated keys to infectious action/reaction that comes w/our condition and it’s side effects and treatments… it all goes outa whack!
      I usually do my blood work a day or two before my next infusion of IVIG, when I know the IG levels won’t skew things. And, they DO skew things!
      url-http://www.labtestsonline.org/understanding/analytes/cbc/test.html-url
      Also called a complete blood count… there is also useful a comprehensive metabolic panel: url-http://www.labtestsonline.org/understanding/analytes/cmp/glance.html-url
      Ask for copies of what blood tests your doc has ordered in the past year? They mite charge you for copies? What I do [as I’ve many docs for many issues] is request a copy for myself, so that a copy goes to the prescribing doc and I’ve got a copy to copy for all other docs! Pay attention to the “*”s! They are your key as to what is high or low, and what you can look up and worry or not about. I often tease my docs about levels just ‘under’ or ‘over’ the ‘*’ amounts. What I do now, is ask for the blood work orders and take them all to the same lab [so they come out in the same format] and get the copies and w/a copy of the orders, you know what the doc has ordered [or not]? Then you’ve got a better idea of what to look for, worry or not about and then if say you are low in Vit C or D? What to do!
      I am NOT a chemist or a biologist, I wrestle with this stuff constantly! Trying to make sense of it. I hope my guidance can help you too!
      BTW? High ANA #’s? Do indicate that something IS going on. To what degree is up to the docs. Each doc interprets these things differently. To that aspect, I haven’t a clue how doctors’ minds work!
      And YES Immune levels can go up w/blood work rite after infusions? The docs test at first for serious reactions, then curves as to how fast/hard those #’s drop, if any. Beyond that? Cause/effect, doc philosophy [does come into play] and those durn #’s whatever they REALLY mean.
      At least, the more you know, the more you mite be able to understand as to how complicated our issues can be! And they aren’t simple at all.
      My heart is with you and your husband! Yeah, this stuff HURTS! A lot at times. Unbearable at others it seems. But there can and are worse things-And I’ve been thru them. Keep faith in yourselves and belief that this WILL help and maybe it will!!! That is my hope for you

Sensory neuropathy set off after IVIG

    • May 5, 2010 at 7:57 pm

      My husband finished his first IVIG therapy 2g/kg just 2 weeks ago . For the first week things were improving, the weakness in his legs and arms was improving.

      Then 1 week ago all the sensory neuropathy started to return in the usual places. This week the level of pain in the upper legs especially when walking, in the buttocks area and back have increased to worse than before treatment levels.

      Has anyone had this experience? Is it possible that the immune respose has been raised and is actually more aggressive because of the IVIG? Could it be the IVIG doing its job ( we hope so)?

      Thanks for any insight. He is beside himself with anxiety .

      Kathy

    • Anonymous
      May 12, 2010 at 1:36 pm

      I don’t have any answers for you as I have never recieved any IVIG treatment some 13 years ago. The last neuro I saw said I had sensory peripherial neuropathy. I bet your husband and I have the same symptoms and they don’t get better with age… Xanax does help with the anxiety.

      Take Care,

    • May 14, 2010 at 5:11 pm

      Hi Chrissy.

      Do you mean to say that after 13 years they never have tried IVIG? What have they given you?
      Are you able to continue to work with these bizarre sensory symptoms? The anxiety seems to arise from not knowing what to expect from one day to the next.

      We are trying to get more IVIG tretment here in Canada but the doctors are waffling about it. It is now one month since the fisrt loading dose and he is needing a maintenance dose.
      Kathy

    • Anonymous
      May 15, 2010 at 12:25 pm

      Kathy,

      I was hoping to get some treatment once I got insurance with my new job… but I got turned down on my insurance. Work doesn’t have a group plan, so I applied on my own. Now I won’t know if IVIG would help me. I have learned to adapt – one strange thing has helped… I don’t shave my legs anymore as I used to be able to feel the hair growing. Plus my balance is so bad I couldn’t put one leg up in the shower. My feet feel like they are cinder blocks, etc., etc.

      I take life one day at a time and do a lot of praying.

    • Anonymous
      May 27, 2010 at 2:55 pm

      Try a resource such as:

      [url]http://www.immunedisease.com/nurses/help-for-your-patients/handouts-for-patients/paying-for-ivig.html[/url]

      where they say, and I quote from that web site- “[B]Insurance Gaps[/B]”

      “The GARDian program ([url]www.mygardian.com[/url]) may also help patients who experience insurance gaps and those who have no insurance. This assistance is available to qualified IVIG patients on any therapy, including newly diagnosed patients and those who are not currently on GAMMAGARD therapy. The program provides GAMMAGARD therapy at no cost to those who meet the program’s requirements.*
      *Financial and residency requirements may apply. Please contact the GARDian program, 1-877-655-GARD (4273) for additional details.”

    • Anonymous
      May 31, 2010 at 10:03 pm

      Hi there Kathy

      IVIg takes time to work. You can’t necessarily expect that one loading dose is going to make the painful sensations go away.

      I have had sensory CIDP for 15 years, and have been doing monthly IVIg for 8 years. If I go longer than that, the pain starts to come back. It took awhile for the IVIg to start to really help. There are times, tho, where the sensations are more severe, and I like to think that it is the nerves repairing themselves. Apparently, that can hurt more than the initial sensations!

      I also take methotrextate, an immune suppressant that has really helped take the edge off the pain. It does take awhile to work, tho, so you have to be patient.

      If your husband is in pain, then he needs to get some medication. He should try and get into a pain clinic, or if your neuro is good, they can prescribe. I use gabapentin myself, along with tramadol, and that is a combo that works for me.

      The sensory issue is very difficult. Alot of people don’t think that CIDP is painful, so your hubby needs to tell people loudly about it.

      If I can give you any other support or info, let me know. Happy to give you my experiences…!

      Cheers
      Debs

    • June 4, 2010 at 10:42 am

      Hi there in New Zealand,

      It is really helpful to us to get this info on Sensory CIDP. The neuros in our city(Ottawa ON) do not recognize it. We had to go to Ney York City for diagnosis and first round of IVIG.

      We are heading to Toronto next week to see another Neuro.She is an expert in CIDP in Canada so we hope she will recognize this variant.

      It has now been almost 8 weeks since his first IVIG treatment- Our GP has given my husband Lyrica (he is now tking 150mg twice a day).

      How did you get your diagnosis of sensory CIDP.? Since it does not show on EMG or NCV tests many neuros say it is not CIDP…

      We would appreciate your insight.
      Kathy