Exacerbation – scared

Autonomic functions are watched closely and regularly when hospitalized. For those at home, it’s important to keep your neurologist informed when there is any deterioration of function, and to be prepared to get emergency help if necessary. Have you had any breathing difficulty? Is your doctor aware of your swallowing problems?

bny—didn’t you get a different type of ivig yesterday? Maybe you should check with your Dr to see if that could have anything to do with these new symptoms.
ivig is the first thing you have tried, I know it has been working for you so far–but just to ease your fear remember there are other treatments you can discuss with your Dr in the event the ivig doesnt work for you anymore.
Its fine to vent here–that’s what we are here for.
I think if you are having difficulty swallowing, especially if it’s something new you should call the ER and see what they recommend you do. good luck—thinking of you, hope it gets better for you soon. Lori

Take care, bny, and call a doctor asap

Are you doing any better today bny? did you end up going to ER last night? Hope all is well—keep us posted. Lori

I am sorry to hear you are struggling right now! I share the concern of previous posters that if there are any issues with breathing or heart rate you should seek medical attention immediately- I have been where you are and had many relapses due to colds/infections – some I was hospitalized for as I would get short of breath and rapidly lose ability to walk and some were dealt with as outpatient getting 5 day loading doses of IVIG ( in addition to my maintenance IVIG) not fun! Also one time I had a relapse we were traveling in Jackson hole and Yellowstone ( with a cool 3 wheeled wheelchair no less) and I used a high dose prednisone taper as an emergency rescue. I do not tolerate the side effects well and do not want to use long term, but it works very quickly for me and is helpful in a pinch- – have your doctors tried you on prednisone or solumedrol ever? I am thinking of you and wishing you well.

bny–glad to hear from you, i was worried about you. Hopefully the ivig continues to work for you and you won’t have to try anything else, but it’s good to know you have options if it doesn’t. my ivig usually took a few days to kick in too.
You had your new brand ivig the same day i had my first rituxin—-keeping my fingers crossed maybe we both will be lucky with these new treatments 🙂 Lori

Bny,
Have you been in my life this past week? I too suffered through a summertime flu, diahreaa, sore throat and the works. Your case sounded worse than mine, I got to feeling better after 4 days, but the tightness in the chest, and the rest of it sounds so similar.
I rested pretty well this weekend, but then I could not sleep last night. The sun is close to rising as I type. Up all night.

Sometimes we are the dog and sometimes we are the hydrant.

Hope you get to feeling better,.

Bny,
I am glad you are feeling better! Would you believe as I write this I am fighting a cold too? Started on Friday – I have been using zinc lozenges and drinking gallons of tea but having a lot of sinus and ear pain setting in- trying to avoid antibiotics . On the plus side, since I have been on the Imuran although I am a bit more prone to colds I no longer have major relapses when I get sick . Dick S I love your quote about the dog and the hydrant – I needed that today!

Whenever Emily would have an exacerbation her dr would order a 5 day loading dose so she could get back on track.

Kelly

bny–i had ivig loading doses for over 2 years, first every 12 weeks then every 6 weeks, went to Dr dycks recommendations of 0.4 gm per kg weekly for 16 weeks then back to loading dose( 2gm per kg) right up until last week when i started rituxin–so it’s definitely not unheard of to get multiple loading doses. Lori

For the first year we had loading doses once a month, then we tapered by 10 grams a month until we were at 1g/kg (maintenance dose) In order to eleviate side effects, we divided the 1g/gm over two weeks, so 35 grams every two weeksover one day as opposed to 70 grams over 2 days once amonth. Thats just what worked best for us.

For some having IVIG more often makes symptoms less. I have IVIG every week and it works for me. I also have my infusion at home making it easier for me. Some home health infusion nurses can come on the weekend or after work so you may need to check into this option. See if your health insurance will pay for this. Think of having infusions as your investment in you, your health and your quality of life.
By reading about IVIV frequency you can see increasing it can be beneficial and you may need to tell your prescribing doctor about it too.
I hope the increased schedule is make you feel better soon.
CIDP is an odd disease and tends to morph without rhyme or reason.

Hi buny, there is no acceptable level of dysfunction. It would be different if you did not respond to ivig and feel better. That would likely be damage that would stay. But you describe improvement when you get ivig. Now the key is to just kick it in the butt and start repairing. As I have mentioned before, you have to stay ahead of it or it is like you are treading water, jogging in place getting nowhere. The loading doses for a year (for us anyway) was what allowed him to heal so wonderfully. As we tapered we watched for any change so that we could adjust accordingly. You should be able to expect your doc would want you to be at your best level. I don’t understand why some docs are so reluctant to give ivig as needed. I can’remember who said it, but someone on the site said that ivig is hard to come by valuable or something like that. While it is expensive, life is invaluable. The docs don’t take into consideration the long term cost of taking care of a person unable to walk, eat etc. A nursing home is $8700 dollars amonth, not including drugs, any procedures, therapy etc. It just seems that if someone responds to ivig or whatever protocol that works for them, there should be no hesitation. So keep pushing for more ivig!

About the amount of time, you could get a fanny pac and do it at work and then have the nurse disconnect during lunch, after work whenever. Once you would get established, there is even the option of the sub q, which you could do on your own whenever you want during that day. Don’t get discouraged, keep communicating with your doc and push for what you feel will make you start healing.

scared too! had my 1st loading dose in February then weekly for 6 weeks then we went bi-weekly and the roller coster started. I started getting bad about 12 days into the cycle and did not see much rebound until about 48 hours after the infusion. I short cycled the treatments a couple of times as over time things degraded. My doc agreed to go back to weekly after my exam this week. I had my “normal” 42g infusion 2 days ago as I was starting to bottom out again. This morning SCARED me as I was as bad as before I started treatment – Barely walk or lift my arms, could not lift a cup of coffee or turn the ignition in the car. I was scared to death that of where the bottom was or if the IVIG had become totally ineffective. True as clockwork the IVIG started to take effect this afternoon and I have returned to at least a mobile state. I went from a fit active gym rat to very weak and at times immobile since last September. Hating this at the moment and willing to go “all in” on a risky bet. Sent my paperwork to Northwestern today for stem cell consideration.

When I started IVIG I got 3 loading doses in a row and then went back in 2 weeks for another 3 days of loading doses. I wonder if your “loading doses” are enough for you? You may need more frequently. Yes, some docs do not know that CIDP may need to be kept hard hitting for 3 to 6 months at the least. My neurologist is the only one on my city who does such hard hitting of IVIG. I went from using a walker to using 2 forearm crutches to my cane to now walking unaided. I went from barely being able to brush my teeth to working in the yard but it took along time. Having to live with needed treatments does get old fast. I think you need to realize you want the best for you and it may mean several days a month having infusions.

Do you have family or good friends close by? Someone to talk to? To help out if needed?

Being diagnosed with CIDP is scarey and so is not being able to do simple tasks. I have to be careful of over exerting myself, not getting over heated, staying out of the heat and relaxing. We need to remember our body is not well and it needs lots of TLC. Please see your doctor and let him know your concerns. I usually take a friend with me when I go to appointments. If I forget to bring up a concern my friend will for me.

We all know Emily is an exception – certainly NOT the rule. When she had her 1st relapse (when her dx was changed from GBS to CIDP) her dr ordered a 5 day loading dose. On the 5th day, she was discharged from the hospital & set up with home health care. The dr ordered her to get IVIG 3 times a week for 2 weeks (at 4 grams per kg PER infusion), 2 times a week for 2 weeks & then 1 time a week for 2 weeks. She relapsed (her eye started turning in towards her nose again – it’s always been her eye that goes first) during the 2nd week of every 2 weeks.

At that point, we realized she needed IVIG 2 times a week to maintain. So we started over again with another 5 day loading dose of 4 grams per kg & then started the 2 days of IVIG per week.

She was 4 at the time & I’ve read that kids can handle a higher dosage of IVIG at each infusion than adults can handle. I believe, with every ounce of my being, if we didn’t treat her as aggressively as we did, she would not be the “normal” kid she is today. I believe she would have been left with a level of dysfunction that I’m not comfortable with.

That being said, since I have seen what IVIG can do in my own child – I personally do not believe that any level of dysfunction is acceptable. I believe one should ALWAYS strive to be as close to “normal” as possible. You should NEVER give up fighting to be able to live your life to the fullest.

Kelly (I would write more but Emily & I have to do a quick clean up of the house & she started 5 minutes ago & is giving me the stinky eye)

Yes, Emily had pain behind her eye. It’s a sign of inflammation. Her eyes would also get dry. You really should see an eye dr too! She did have swallowing issues & GI issues & bladder control issues.

You need to remember that your dr works for you! Your insurance (that you work your butt off to have) pays him. That means you need to be able to say “this is what I think”, or “hey…can we maybe try this?”, or at the very least “I haven’t been feeling great”.

You need to take control of your health care. You have to be your own advocate & if you aren’t doing well…you need to speak up.

If this was one of your kids what would you do? You would fight tooth & nail to get them the treatments they need. You need to apply that to yourself because your health affects your kids.

Kelly

Go see another neurologist as a consult. This way he isn’t your doctor…yet. Feel him out. Ask front desk receptionist how many CIDP patients he has had before you go. Get a copy of your medical records and take them with you. Your regular neuro doesn’t have to know you had a consult and if he does it was just another opinion. Have a girlfriend go with you to the appointment. Read all you can here and we will cyber help you along the way. You deserve the necessary infusions to keep you going as full time mom, bread winner, house keeper and everything else. You need to “rock the boat” because you need to for your family and you.

I have trouble swallowing, weird eye sight that store florescent lights make worse, walk a tad sideways and still knock my mouth with a drinking glass (I use straws for drinking..try it).

Stay out of the heat and hot showers. It makes CIDP kick in more.
Stay cool and with your “ya’ll” I’d say lots of Ice Tea, girl.

LimeKat

Emily was not dx’d with optic neuritis. She was dx’d with cranial nerve inflammation. At one point the eye dr said if her eye was not better in a year that we would have to do surgery to repair the nerves & muscles. Luckily there was enough improvement that she didn’t need to have the surgery.

Kelly

Forgot to add…she was dx’d with cranial nerve inflammation & opthalmoplegia.

Here is a good link explaining opthalmoplegia:
http://medical-dictionary.thefreedictionary.com/ophthalmoplegia

Kelly

At what point in all of this was there a mention of polyclonal gammopathy? If you had blood work taken after receiving IVIG – it could affect your blood work. IVIG would show abnormal levels of immunoglobulin in any blood work done.

I can’t remember – did you have a brain MRI? It may explain the neuro opthamologist’s findings.

Kelly

Is it a papalodema or pseudo papalodema? Was optic neuritis confirmed? My other son had both of those. First neuro opthamologist left out the word pseudo, so we thought he had a tumor or ms. Second one and third said pseudo, which means it appears to be a tumor but is “fake” True optic neuritis (not caused by several drugs, in our case minocyclene, no one even made the connection, they just assumed ms or lupus) is usually indicative of ms or a tumor. In fact minocyclene and other drugs actually cause lupus/ms like symptoms, optic neuritis and papalodema (pseudo) Once we were off of the minocyclene and his ANA and mri was ok, we had our answer, it was the antibiotic. Is ms or lupus a possibility? If so, ms and lupus both use ivig for treatments, that could explain why you do have a response to it.

If it is a papalodema, maybe that is what is causing the polyclonal gammopathy, a tumor? Did the doc suggest that? He is the only one that has given you some concrete answers. Perhaps if it is a papalodema and it is removed, the symptoms will stop. When we were told of the papalodema dx for my other son, I started researching and honestly it seemed like a better option than the cidp or ms. I think they go through the nasal cavity and remove the tumor or I think it can even be shrunk at some specialized institutions, I think oneis in Illinois. For once God was going easy on us and we just had to remove the antibiotic and all was fine. When will you get more info from the doc? Keep us posted. Wasn’t someone else on the site being tested for cancers etc. as the cause of their cidp symptoms?

I went though extensive cancer testing as a cause for my cidp. It was due to having an antibody show up in my bloodwork that may or may not be an indicator of cancer. Cidp/nerve damage can precede the actual cancer by as much as 3 years. In my case they have been unable to find any cancer yet.

Bny- it is all so confusing- just to reassure you the polyclonal gammopathy is constant with receiving ivig- it reflects the different gammaglobulins you are receiving with ivig- not sure why you have papilledema it can have a number of causes and is not specific to one diagnosis- I would definitely follow that up . Part of the problem of getting a lot of tests for anyone is that many people have abnormalities that are benign and that they would have done fine without knowing they are there- you spend a lot of time chasing these down – I myself had to have a bone marrow biopsy as my lumbosacral MRI showed an increase in signal in the bone marrow- turned out to be completely benign but since these tests are so sensitive they pick up everything!
In regards to your fear of having your diagnosis changed and no longer having your insurance pay for IVIG I would not worry about that as any neurologist would be aware that the IVIG has helped you and this is well documented in your case- sometimes this in itself helps to support CIDP- since you are an excellent responder and tolerating well they really cannot justify denying you of this beneficial treatment.
Hope you continue to feel well