Questions about relapsing and being sick
AnonymousDecember 17, 2008 at 3:17 am
Hi everyone, after almost 10 months of feeling really good, and about 7 completely symptom free, I got a cold and started relapsing. My treatment had been 75 mg of Imuran, 5 mg of prednisone, and IVIG every 4 months. I was doing well. A week and a half ago, my symptons (parasthesis) returned and a few days after that, I started noticing muscle weakness. Two days (Monday) after realizing the muscle weakness was returning, I woke to realize I was MUCh weaker. Could barely lift my arms. This time it appears to be affecting my upper body more so than my lower body although my lower body is also suffering. I am getting IVIG tomorrow. To those who get IVIG and have relapsed, can you tell me how long it takes to start feeling better usually?
I had a brief spell in November where the burning in my hands was returning, but I never noticed any weakness and I got IVIG just 2-3 days after the symptoms returning and seemed fine a couple days later. This time, my dr. had me wait longer and boy what a mistake. The progression of the muscle weakness is frightening.
Also I am ill with a sinus infection. When I came down with CIDP, I had a sinus infection. Does anyone here see a return of symptoms if they get sick?
Last question: My infusion company mentioned since I am already sick with a cold and with active CIDP, then I may suffer more adverse side effects from the IVIG. Has anyone experienced this? To date, I have not experienced any real side effects. When I had my first IVIG loading dose, I felt some flu-like symptoms and fatique afterwards, but since going into remission, after having a treatment, I have felt great. Nothing at all.
Thanks and hugs to everyone. Would love to hear from anyone who has relapsed and improved from IVIG.
AnonymousDecember 17, 2008 at 9:06 am
Emily has relapsed faster when sick. My theory is that the germs (virus, infection, etc) uses up the IVIG faster than the bad CIDP antibodies do.
Any time Emily has had a relapse we do a loading dose then resume with maintenance doses. Depending on how bad the relapse is we usually start to see results by day 3 of the load with her being back to normal by day 5.
Our home care company will not infuse IVIG if you are sick. They say if you are sick & get IVIG then you won’t know if you are having a reaction to the IVIG or if it’s just your virus. Emily has had her infusions rescheduled a few times due to being ill.
However, Emily has had her infusions when she just had the sniffles or a runny nose. If there is any diarrhea, vomiting, headaches, nausea, or muscle aches that’s when they refuse the treatment.
I hope you feel better soon.
AnonymousDecember 17, 2008 at 9:19 am
Thanks Kelly for the info. I have been told by my infusion company also that if there’s a fever involved, or pretty serious illness, you should hold off on the IVIG. I have a cold/sinus infection, but no body aches or headache – the pain is all related to the CIDP.
When Emily has relapsed, how quickly has it happened? Has she ever gone to being as bad as she was when she first got CIDP? I am not there yet, but I am heading there quickly. I’ve been through this before, but it still blows my mind how fast this can progress. I am hoping that getting a maintenance dose will be enough for me. Nobody said I should be getting a loading dose. My maintenance dose is half the amount of the loading dose, is that how it is for Emily also?
Thanks again for your help.
AnonymousDecember 17, 2008 at 9:33 am
Emily has never been as bad as she was when she was first dx’d. But she does go downhill fast.
Since she has the eye involvement that is the 1st to go & gives me a heads up that she needs IVIG. We’re lucky in that her muscle weakness doesn’t start for about 2 weeks after her eye paralyzes. She does get pain in her feet, ankles & legs usually 2-3 days after the eye starts to go bad.
Emily is a unique case in that she doesn’t really get the normal amounts of IVIG. She currently gets 20 grams of IVIG every 2 weeks (was at 3 weeks & we tried 4 but she relapsed so we’re starting over). She went 20 months without a relapse & her loading dose then was 100 grams – 20 grams given every day for 5 days, with her maintenance dose being 20 grams.
During the last relapse we gave her 20 grams for 1 day then 30 grams for 3 days. Now she’s back to the 20 gram maintenance dose. I believe her maintenance dose (using the standard protocol) should be 25 grams per month.
Our theory has always been that once things start to go downhill with a relapse then we need to load her back up with IVIG then use the maintenance dose to…well…maintain. We’ve found that even if we catch her eye on day 1 & give her IVIG that same day that she still requires a loading dose. Once she starts to go downhill a maintenance does is never enough to stop it.
But, as I’ve learned over the years, Emily is no where near being a normal CIDP’er.
Hope that helps,
AnonymousDecember 17, 2008 at 9:56 am
I’m going through pretty much what you are. I am in the midst of a relapse. I just finished a loading dose of 2 gm/kg and I can see improvements already and I just finished it on Sat. I didn’t let the relapse get to epic proportions before I asked for help this time although my progression seemed slower too. I had been getting IVIG up until Sept but didn’t think I needed anymore as I wasn’t feeling that “boost” so I talked the Dr. into discontinuing it. He really didn’t want to but abided my wishes and now he gets to say I told you so. I have had a cold previously and it knocked me for a loop. Usually I think the IVIG is like a miracle drug when it comes to taking care of colds and such. I think it helps get rid of them quicker. For me this loading dose knocked me on my butt. I had major migraine/hangover type symptoms for 2 days after even though I medicated with Tylenol around the clock. I think it was the dosage and my body wasn’t used to it again.
AnonymousDecember 17, 2008 at 2:06 pm
[QUOTE=deem] 1. To those who get IVIG and have relapsed, can you tell me how long it takes to start feeling better usually?
2. Does anyone here see a return of symptoms if they get sick?
3. My infusion company mentioned since I am already sick with a cold and with active CIDP, then I may suffer more adverse side effects from the IVIG. Has anyone experienced this? [/QUOTE]
1. How long it takes to feel better varies with how sick I am – i.e. how active is the inflammation – is my temperature over 101, do I feel flushed, are there red places and swelling (usually only on my face)… the sicker I am the longer it takes to feel better. Along with that, it varies with how much IVIg I am getting and how often and whether the side effects crush me or not.
2. Oh yeah, big time, and it’s pretty quick too though it’s never been as severe as when I was at my worst in the hospital. But I can go from no numbness when I go to bed to waking up with half my face numb, one and a half legs and maybe some other spots thrown in. I attribute this to just plain inflammation – your body is fighting something else thus inflammation is already there ready to head to it’s favorite target – myelin. Sometimes the inflammation leads to damage with me and the numbness lasts longer than a day or so but usually it’s just inflammation and goes away/back to normal in a few days – assuming I am over whatever sickness triggered it.
3. Yes, it’s not much fun and it’s better to be well first for the reason Kelly mentioned, so you can tell if you are getting side effects or not.
AnonymousDecember 19, 2008 at 12:17 pm
Hi everyone, I am continuing to progress – losing upper body strength very quickly, so my dr. is ordering me another IVIG treatment. I should get it this weekend. I also have to up the prednisone to 30 mg. Hopefully this will get this under control. I’ll keep everyone posted.
Any words of encouragement? Is it likely this will get under control? I responded so well to the steroid treatment the first time, but I am afraid, second time around, it will be much more resistant. Is that usually the case?
AnonymousDecember 19, 2008 at 2:50 pm
Are you still sick?
I know that steroids are an immuno-suppressant so they might make you more susceptible to the illness. The IVIG should help some with that though.
When Emily was on the ‘roids for a few months the poor girl was sick the entire time. Those kindergarten germs can be ruthless!
I hope it works & you’re back to your “old” self again soon.
AnonymousDecember 19, 2008 at 4:16 pm
Hang in there Deem,
You’ll get this under control. It seems there are many who suffer out of pattern right at this time of year. There are alot of germs going around and
everyone passing them around kissing and hugging on the holidays.
Try not to worry about a resistance type thing. Naturally you will need to increase meds to put it in check and hopefully you get back to normal.
Lets see how it goes after your next infustion. Let us know.
Have a great day, tim
AnonymousDecember 20, 2008 at 1:36 am
I am so sorry you are struggling. Please try and have faith in your body and it’s ability to repair. It did it before and it will do it again. I always have to remind myself that this is why it is called “chronic”, it flares and then slowly gets better. Try and be good and patient with yourself. Let us know how it goes.All my best,
AnonymousDecember 22, 2008 at 7:00 pm
Thanks everyone for your responses. I got my second IVIG treatment on Sunday, 5 days after my first treatment. Both treatments were 50 grams each, and so they equaled my initial loading dose. I also upped my prednisone to 20 mg (was at 7). I believe the progression has stopped and a small amount of strength has returned. I will try to be patient and not expect too much. While I saw improvement almost immediately of going on steroid treatment last year, I think it took several weeks to regain the majority of my strength.
Something odd with me and my CIDP: When I flare, not only do I get numbness/tingling in my hands/fingers/feet/toes, I also get a numb, kind of stocking glove sensation all over my entire body. Every square inch of me feels very numb, even my gums and the inside of my mouth. How weird is this? Does anyone else have this? I’ve not heard of anyone else having this.
AnonymousDecember 24, 2008 at 12:26 am
Yes, I get the all over numb feeling too. My face feels so weird and it’s like being covered in wax. Like a second skin.
I got the stomach flu/virus Thanksgiving and it still has me feeling tired.Commented today to one of the nurses how I feel. My body can’t
mend itself as quickly.
AnonymousDecember 24, 2008 at 7:01 am
My body can’t seem to mend itself either. A cold sinus infection now takes 2-4 weeks to go away whereas before CIDP, it used to be about a week or so. I wonder if it is because of instead of attacking the bad sick germs, our antibodies are attacking our poor innocent myelin?
Anyway, I can’t believe how much I’ve improved in the past 3 days. I have regained about 50% of my strength already. I appreciate everyone’s good thoughts and wish you all peace and health for the holidays. For those who are struggling, you are in my prayers. Hugs.
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