Intro and questions
AnonymousMarch 1, 2010 at 2:31 pm
Is it impolite to start firing away with questions when I am new to this board? I have been reading many posts and feel somewhat comforted by the fact that there are others out there who understand this affliction because my friends and family don’t (although they try).
I received a CIDP diagnosis at the end of Dec and began IVIG at the end of January. I was expecting to feel amazingly better -my dr explained that feeling a huge difference is a criteria to continue with the therapy. I do feel a lot better and more functional but I still have a lot of pain. There are days where my feet have the “put through a meat grinder” pain.
I have an active life due to having a 2 year old and teaching 11 children under 5 with disabilities. The fatigue is crushing. I feel everyone is losing patience with me as in I should be back to my old self since starting Ivig. Will my Dr think I am crazy if I ask to take a small dose of Prednisone in addition?
It has been a long painful road and I am weary. Thank you for listening……
AnonymousMarch 1, 2010 at 2:46 pm
[I]Michelle, don’t let anyone, docs included, “cow” you into believing you [U]must[/U] feel better with IVIg. Doses need to be ‘tickled’. Other meds need to be ‘tickled’.
A short spurt of steroids could be an option. Long-term is something I would personally shy away from. Too many nasty side effects.
But then, almost everything has side effects, some nastier than others.[/I]
AnonymousMarch 1, 2010 at 4:22 pm
How much are you getting? You might not be getting enough, or you may also benefit from adding prednisone but I’d be cautious with that unless you don’t have a problem with weight gain and getting irritable… 😉 Also – I felt better from IVIg but it was a long time before I felt like myself again … oh… like 5 years… in addition to your disease you are also having to process IVIg which is tiring to say the least. I am functionally much better but I still have plenty of pain and plenty of fatigue.
There is no schedule for you to follow with this disease, everybody seems different in their approach and response to therapies so don’t look at others or popular wisdom and convince yourself you aren’t doing your best because you aren’t meeting their expectations. This is a marathon, not a sprint, to get better you must learn to pace yourself and force yourself to rest so your nerves can heal. Start turning your thoughts towards conservation of energy… if you can sit down while you are doing something then do so… if someone else can go fetch that little book from the shelf for you then ask them… :p Not only do people genuinely want to help but by asking for help you also let them know you are not entirely back to yourself. If you pretend all is well then people will assume that it is. I am a proud and independent person so I personally find this difficult but I’m learning. :rolleyes:
March 1, 2010 at 4:49 pm
Everyone is different in how they respond and what they feel. My son had inststant good results but continued and still does continue with pain daily, back, ankles especially. Since you were infused in Jan, it would certainly be time for another infusion. Some get them every 2,3,4,or 6 weeks apart. The pain is the inflamatory process through your body and the damage to the myelin. Regarding pain, you will quickly build a tolerance to the vicodin, neurotnin can be taken up to 3600 mg. Some take lyrica specific to nerve pain, others do not fare well with it. Cymbalta is an anti depres/anxiety med that also helps with pai. Again some like it others don’t Trial and error. 2grams per kg of weight is a standard loading dose. Once you have a few of them to calm things down and start to heal, they can slowly move to a maintanence dose. Try the ivig for a bit before you try the addition of prednisone, it has serious side affects. You may not have a choice and it may be necessary for your improvement, but better to be sure. Some do great on ivig as do we and others by choice or necessity move to other imunosuppressants or even chemo drugs. It takes a while to figure out what your need is. Good luck and by the way it is not impolite to get down to business, that is what people come here for, sometimes a lending ear and other times questions. So fire away!! Someone will always be here!! btw, 2g/kg= Take your weight, say 100lbs / 2.2=45.45kg that is your weight, 45 kg then you take that number and multiply by two which is the 2grams. That =91.91 so if you weighed 100lbs a load woud be 92 grams of ivig over 4-5 days. A maint dose would be half of that.
AnonymousMarch 1, 2010 at 7:20 pm
When my doctor first told me about the IVIG treatment, he stated most patients that have a positive experience with the IVIG, feel better after 3 treatments. Since the first round of IVIG consisted of 5 days in a row, I thought by day 3 I would feel better! :confused: But I didn’t – in fact I felt horrible. When I called to find out why I wasn’t feeling better, he explained the first treatment consisted of 5 days (rather than 5 separate treatments). 😮
After the loading treatment, I then went back every 4 weeks for another treatment. After the third treatment/month, I did start feeling better, but still had the fatigue, pain, etc before time for the next treatment. So he doubled my Rx and I then went for 2 days of IVIG (still considered 1 treatment) every 4 weeks. I still seemed to have the highs (surge of energy a few days after treatment) and the lows (crashed energy and elevated pain) before the next scheduled treatment.
Now I go for one day every two weeks. The difference this is making is night and day. It is obvious this is the correct treatment regimen for me. I am slowly making a recovery and find I can do more for longer now.
So, don’t give up yet! The side effects of steroids can be really bad so I would recommend (as others have) that you give the IVIG more time before resorting to steroids.
One of the biggest hurdles for me was realizing things don’t go as smoothly as we are first led to believe when first diagnosed! After that, I came to terms with the fatigue and pain and adopted a more holistic approach to my health. The pain can still be an issue, but I am on a great pain mgt program, so it’s not nearly as bad as it once was.
AnonymousMarch 1, 2010 at 11:35 pm
Welcome. I would like to echo what others have said. Each person is different in their needs for medications. Not everyone has the terrible pain that some get, but it can be really debilitating–even more than the terrible fatigue. The doses of medications have to be finessed. A lot of people do not take enough Neurontin to help the pain. You have to start slowly and build up. People can take as much as 3600 mg/day as Dawn says or even more. If you truly cannot tolerate this much, Lyrica is a cousin medicine and some people take Cymbalta instead. Immunoglobulin can make a big difference, but it is not instantaneous for most people (the children like Kevie) seem most likely to respond rapidly, but not all children do. there is no absolute dose or schedule of immunoglobulin. One needs what helps you to be better. The three doses to see benefit is in part due to the inflammation settling down and in part to building up with enough cumulative in your body. The importance of resting needs to be said again and again. Truly, try sitting with your feet up if possible as much as possible. I found that it was critical to lie down in the afternoon for an hour or so for a long time after this started. If I lay down, I could then resume activities after regathering up strength. It also made a world of difference to pain as well as to fatigue since they go hand in hand.
WithHope for a cure of these diseases
March 2, 2010 at 7:06 am
Welcome to the Forum. I’m glad you have found us and your questions are welcomed. As you can see from these responses, there are a lot of folks here who have a lot of experience and knowledge with CIDP, treatments, side effects, and practical advice. They’re also warm, encouraging, great to laugh with and a shoulder to cry on. I am glad to know you have been diagnosed and are being treated.
Some of the best advice I’ve received on the Forum is to be your own advocated with the docs. If you feel you need to try something (the ‘roids you mention for example) talk it over thoroughly with your neuro, jointly develop a plan, and work together to make it happen. Remember your neuro works for you.
Again welcome …
AnonymousMarch 2, 2010 at 1:39 pm
Welcome to the forum and don’t worry about asking questions. That what this is all about. You have gotten some sound advise already. I just wanted to say that we all seem to react differently to various drugs. What works great for one person may give you fits or just the opposite can be true. I know, that sound confusing, because sometimes it is. That way we ask lots of questions to get different opinions. There are a lot of individuals here how are will and eager to help so just ask.
March 2, 2010 at 11:25 pm
Questions are what this site is all about and there are so many knowledgeable caring people here who have good answers for you.
I know you and your doctors will make the right decisions to help you feel better and do what’s best for you.
We’re like snowflakes when it come to this disease. None of us are exactly alike. All the variables such as age, lifestyle stress, personality, inherent weakness and strengths physically and mentally all contribute to how we feel and react to medications.
Stay strong and ask about anything on your mind. We are happy to hear from you.
AnonymousMarch 5, 2010 at 12:18 am
Even after the rest of me was well on its way to recovery, my feet felt terrible. They hurt for at least a year after I got out of the hospital the first time. I ended up spending a lot on shoes and insoles! I used to think of myself as the little mermaid–in the fairy tail when she first got her legs, each step felt like she was walking on broken glass. That was me!
It does get better. Definitely get some comfy shoes.
AnonymousMarch 7, 2010 at 1:49 am
Thanks y’all for the welcome and the advice.
Juggling medicine is such a pain isnt it. I now take 3600 mg of Neurontin which works MUCH better than Lyrica for me.
Funny you should mention shoes…. I can only wear Crocs actually Crocs RX. I have searched like crazy for something else but so far nothing!
AnonymousMarch 9, 2010 at 11:12 am
Welcome to the board, I am not around here as much anymore but have some great friends have met through here. They will be a great resource for you. As I believe somebody else mentioned, have your Dr.’s check your dosing and make sure it corresponds to your current weight and not the weight you started on IVIG at. Dosing of IVIG is based on weight, between year 1 and year 4 for me my IVIG dosage changed from 30 grams 1x monthly to 60 grams 1x monthly. Also, Prednisone even with all it’s side effects can really help with energy . If you have any questions you can feel free to email me [I]jerimyschilz at hotmail dot com[/I].
AnonymousMarch 9, 2010 at 1:24 pm
Just want to add my 2 cents. It has already been said, but you are not alone. I was diagnosed in 01. One thing I have learnt is that you are your own best advocate. Most Drs. do not know alot about this disease you must do your own research. Be up front and honest with your dr. He can only go by what you say.As has already been stated no two people are alike. Educate your self and keep reading the forum it is very helpful.
welcome to the cidp club..sorry you had to join
March 9, 2010 at 6:02 pm
Well, look what the cat dragged in!! Where the heck have you been Jerimy? How is school going? Talked to Shannon or Ben lateley, how are they?
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