New here. Recently diagnosed with CIDP; getting IVIG.
May 20, 2013 at 9:20 pm
Hello. I was diagnosed with CIDP in April of this year (2013) and started IVIG treatment last week. This post is basically just my introduction; I don’t have any specific questions at this point. But I’m glad to have found this supportive community, as I’m a bit worried about what lies ahead.
My symptoms, in brief:
– Numbness in the feet, creeping up the legs over the past year so it’s now as high as the knees.
– Numbness in the hands, particularly the finger tips.
– Becoming unsteady on my feet (first noticed this about a year ago)
– Odd weakness in legs and arms; e.g., “drop foot” on my right foot, no shoulder strength on the right, weak forearm on the left, etc.
– Lots of fatigue
– Muscle pains and cramping
In my case the numbness in the feet started years ago. I saw a number of specialists — including two neurologists — in 2008, and none of them could make any sense of it. I even had a muscle/nerve biopsy done but it was inconclusive. But in the past year the weakness became apparent, along with pains and cramps, so I did the rounds again. Two MRIs showed nothing, blood tests were all fine except a very high level of C-reactive proteins that indicate inflammation.
Yet another round of EMGs showed a change since 2008, and some basic motor testing showed the muscle weaknesses. So that, combined with a second look at the biopsy, resulted in the diagnosis of CIDP.
I started IVIG treatments last week, with an infusion on Tuesday, Wednesday, and Thursday. Wednesday’s infusion also included an infusion of Solumedrol (steroid). I’m scheduled for an IVIG and Solumedrol once every two weeks for the next six months. (I also had a lumbar puncture on Tuesday.)
On Wednesday evening, after my infusions, I felt better than I had in years. The numbness in my fingertips was almost completely gone, and my “drop foot” was dropping by half. The “trigger finger” cramping in my right hand was gone for the first time in six months. A miracle!
Then I crashed. A headache started Friday night and by Saturday I could barely get out of bed and couldn’t eat. It’s now Monday afternoon and I’m finally starting to feel like it has passed. I’m self-diagnosing that as aseptic meningitis, which is apparently not uncommon.
Unfortunately, the numbness is back, along with the drop foot and the “trigger finger” cramp (although not as bad).
OK, I’m just venting here, but I’m almost done. 🙂
From what I’ve read, I can reduce the chance of a recurrence of the aseptic meningitis by drinking lots of water, taking ibuprofen, and slowing the infusion rate. There’s also the fact that I’ll be getting only one infusion at a time instead of one three days in a row.
I’m really hoping that will work, because I cannot endure what I’ve suffered in the past 48 hours twice a month for six months!
OK, thanks for letting me get that off my chest. We’ll see how things go…
May 20, 2013 at 11:50 pm
W elcome to the forums. The first advice I would give you is to try to avoid self-fiagnosis. It’s fine to be informed about various conditions so that you can ask intelligent questions, but you need to leave diagnosis to your doctors.
Response to IvIg varies. The initial “loading” dose is usually spread over five consecutive days. Did you have only three? Then periodic treatments thereafter can often keep the disease in check. Sometimes, they do not. I continued to deteriorate after two five-day rounds of IvIg about ten days apart, then my treatment was changed to plasma exchange. I had nine PE treatments, which seem to have turned the tide for me. I am now largely recovered and in remission.
It is not unusual to have to experiment with treatments to find the treatment plan which works best for you.
May 22, 2013 at 1:40 am
Thanks GH. I should point out that the only self-diagnosis I did was declaring my excruciating neck/headache (48 hours +) to likely be aseptic meningitis. There was no fever, and after it peaked (about 18 hours in) in started getting better. Had I gotten a fever or deteriorated I would have gone to the ER for sure. Anyway, “self-diagnosis” is probably an overstatement, as its only purpose is to put a label on it. I’ll definitely tell them about when I go in for my next infusion.
I’ve heard other say the initial loading dose is five days too. Others have said three. In my case the symptoms are not that bad, plus there’s the steroid dose, so maybe that’s the standard here for someone in my situation.
Glad to hear you’re in remission! I don’t now if PE is an option for me. This is all very new to me, but you can be sure I’ll be asking more questions next time I’m at the clinic!
May 24, 2013 at 3:56 am
sorry to hear you have to join the club!!! I have had aseptic meningitis with IVIG (two times pretty badly, third time mildly).. I was in the hospital inpatient when I crashed, and they gave me IVIG for the first time.. they ran it at a rate or 210.. the 2nd night of the loading dose I awoke from my benadryl coma with a Pounding headache.. temp of 103, and walking on the floor hurt my spine so badly.. I coudlnt’ turn my neck at all.. I felt like I had the flu x 10! now, I didnt’ say anything to the docs, as I needed the IVIG and didn’t want them to stop it! I got IV toradol and zofran and just was miserable, but hopeful about the IVIG working.. they were doing a lumbar puncture for diagnostic purposes of my weakness and then came in and told me I had meningitis (ha.. I knew that, but now they did too- it was confirmed, I had 100’s of Wbc’s in my csf).. anyhow..
point being – I have learned that my rate is crucial, I can’t go over 100ml/hr.. I drink tons of water.. and I’m fine now.. my body has since adapted (i couldn’t go over a rate of 70 for months).. good news is the 2nd round of IVIG I felt almost normal, it seemed to “cure” me.. but since it seems less effective, though still works..
good luck! keep us updated!
May 24, 2013 at 3:18 pm
bny806, that’s a wild mix of bad and good news! On the bad side, the idea of getting aseptic meningitis again really bums me out. What misery! On the other hand, it’s good to see you’re doing better and seem to have found a way to keep the AM at bay. I’m hoping I can adapt the way you did.
In my case they’re running it in at 150. The nurses check on me frequently, and always say that if I get a headache they’ll slow it down. When I go in on Tuesday I’ll ask them not to go above 100, and we’ll see if that makes a difference.
It’s been a strange week. I still feel like my head is wrapped in a tight invisible helmet, although it doesn’t keep me from functioning. (I need to work.) I always feel like I’m on a cough-syrup buzz, even though I’m not taking anything stronger than Advil and Tylenol.
Last night I had a small crash at the end of the day. Zero energy and barely and appetite at dinner. Felt really bummed out and dizzy. After my tiny dinner I took a multivitamin and a vitamin D pill. An hour later I was peeing like a race horse (three times within an hour). After than I felt a lot better. Fell asleep without any sleep aids, but woke up in the middle of the night energized, in a great mood, and hungry! Whaaaat?
Today is about the same as it’s been all week. Bit dizzy. Bit of a clamp on the head. Not as bad as yesterday though…
May 26, 2013 at 2:58 am
Oh yes.. that is very familiar.. I feel like every single time I get IVIG my brain is fried for a few days afterwards.. I have a harder time with everything – mentation wise. And the three times I have had meningitis my brain feels extra fried.. I have told my husband on numerous occasions – I think my IQ drops a few points every round of IVIG.. but hey.. if it works!
Are you feeling better? Do you usually have to take something to sleep? I do.. I went three months after the inital attack of onset of this thing and I never slept well for over three months, I was so exhausted I would pass out initially and then wake up minutes/seconds later with my limbs all tingly and asleep feeling (like you have to shake them awake).. I take lyrica now.. it was great to just sleep semi normally (I don’t feel like I breathe deeply at night – been that way since this started).. but otherwise if I cut back on the lyrica, I wake up every few minutes all night having to shake my limbs awake ahhh!
HOpe your doing well!
May 26, 2013 at 3:43 pm
Thanks. It comes and goes; every day is different and it’s hard to predict. By the end of the day Friday I felt better than I had since all this started (at least in terms of the headache). But last night I had one glass of wine and that brought on a “hangover” as if I’d drunk two bottles, so I feel awful today.
I had some wine last weekend too, before the 48+ hour nastiness, so I think there’s a connection, although I’ve never had a problem with a few glasses of wine before. I suppose of pregnant women gan go nine months without a drink I shouldn’t complain about spending the next six months dry. :-/
In terms of sleeping, I’ve been taking Tylenol PM (over-the-counter) and it helps a bit. I don’t sleep the night through though. Strangely, I’m not sleepy during the day either, unless I have one of these crushing headaches, and even then it’s not so much a desire to sleep as a desire to escape.
May 28, 2013 at 12:08 am
BTW, something unusual today, so I though I’d report it here for anyone who’s following along. It’s this: today I feel completely normal. As in, “normal” normal. As if I had never had an IVIG treatment; no headache, no stiff neck, no cranial tension, no dizziness, no feeling “spaced out;” all of which I’ve had by varying degrees since my first infusions two weeks ago. All gone, as of today.
Furthermore, my CIPD symptoms are barely there; the fingertips feel 90% normal, virtually no muscle cramps, and the famous numb feet are only a little bit numb.
All this the day before my next infusion — I get juiced again tomorrow, possibly repeating the cycle of cycles over again. But it’s nice to know that “normal” is one of the possibilities in the daily grab bag of “how will I feel today?”
May 28, 2013 at 2:03 am
so glad your feeling better!!!! That’s great! how many days post infusion is this for you?? I remember my 2nd round of infusions.. i was so depressed that it wasnt’ going to work on the third day.. and then when I woke up that 4th morning reached to grab my phone, and for the first time in months I could actually grab it not floppy fingered.. I went to flip the light switch on, grab toilet paper, open a door.. for the first time in MONTHS i could do this- I think I smiled NON STOP (which I hadn’t been able to even smile/ or make a cry face either) for months. anyhow.. so day 4 I notice improvement.. and i feel it wearing off by day 10-14.. seems all too short lived!!
As far as the wine goes – Man, I hear ya!!! before I was diagnosed I had a glass of wine (as I have done occasionally for a while… and it made me feel AWFUL!! heart rate was in the 140’s the next day, felt like I was going to kill over.. now that things seem more controlled I have a glass every 4 months maybe, and it doesn’t have that effect.. Glad your feeling better!
May 28, 2013 at 3:06 am
glad the ivig is working 🙂 the loading dose is usually done over 5 days, if you are younger,and in good health (other than the cidp) there are Dr’s who will do it over a shorter period, i get the loading dose in two days. When i first got ivig I premedicated with benedryl and tylenol. Now I just drink caffeine—-helps avoid a headache from the infusion.
hope your next infusion goes a little easier.
AnonymousAugust 3, 2013 at 12:55 pm
It’s been a few months and I’m wondering how you’re progressing.
Had my loading dose (2gm/kg) over three days and my next dose (1gm/kg) a week and a half ago. Saw my doctor again yesterday as the pain and weakness has continued to worsen. He gave me a Prednisone pack to take over 6 days and will include Solumedrol infusion with the next few IVIG treatments.
I’ve been fortunate to have had no side effects from the IVIG other than a very mild headache that goes away quickly. I felt a little more energetic after taking the Prednisone, yesterday, but that may have been partially due to not having spent the day at work and my hopes being lifted by the doctor suggesting that strength may be returning to my arms and shoulders.
Still, the doctor has decided more blood tests are necessary to rule out other causes for this neuropathy. CIDP still seems the most likely culprit, but I am atypical (as though there’s some standard for CIDP).
August 13, 2013 at 2:51 pm
Hi SSS. It’s been up and down. The initial success seems to have abated somewhat. The IVIG sometimes gives me headaches, and I find that overall the effectiveness seems to have diminished somewhat. I’m also getting some minor skin rashes and a lot of itching. I’m hoping things swing the other way soon. :-/
AnonymousAugust 13, 2013 at 9:39 pm
I too have been itching very badly lately and have about a 3 inch round rash on the the top of my left drop foot. BI am 60 yrs old – been diagnosed for about 18 months with CIDP – so far the major weakness is in the legs, stamina, mobility. I have gotten 8 rounds of 5 days each of IVIG and so far no great improvement – still very tired from walking, going up stairs, doing almost anything. This is the first time I have the itching and its been about 5 weeks since my last round of IVIG.
Anyone else out there having itching or rashes suddenly under CIDP with IVIG?
To GH about your May 20, 2013 post – Like you IVIG has not been the cure-all. Just wondering how the plasma exchange works and how you specifically improved from it. My neurologist is going to PE if a stronger dose of IVIG does not help soon.
Thanks for your reply.
Love this forum.
October 9, 2013 at 10:39 am
Hope yall are doing well!!! I itch like crazy!!! I used to get little blisters on my palms and an eczema like rash on my legs.. now its over my areas of weakness more it seems- on my shoulders mostly.. it’s miserable, i want to claw my skin off sometimes!
October 9, 2013 at 2:16 pm
byn806, I reported the rash to my neurologist and she changed my IVIG from Privigen to Gamunex. The itch and rash went away after about a week. I still get some itching on my legs, but I was getting that before I started IVIG. For large areas of itchiness I find Gold Bond medicated cream helps. For specific hives, over-the-counter cortisone cream really helps.
Otherwise, I’m happy to report that things have been going well. I occasionally fall into a funk where I have a lot of aches and “fog” for couple of weeks, but then I come out of it and go the other way, where I feel great for weeks at a time. Currently in a “great” phase. 🙂
In terms of CIDP symptoms, I think the damage to my feet is permanent, but when I’m at the high- or even mid-point of my roller-coaster ride of symptoms it’s hardly noticeable. Fingers are still a bit numb, but it’s tolerable. The best improvement seems to be my gait (walking). I no longer feel like a tottery 90-year old when I walk; for the most part it’s completely normal.
I realize that I’ll most likely never go back to “normal” so it’s a matter of creating a new normal. If I could lock down how I’ve been for the past month and declare that to be “normal” and permanent, then I’d be happy.
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