Hi Stimpy - it is very normal and even more normal for some to start getting infections (I did) the week before infusions. Most people are on an every 4 week schedule. IVIG has a 3 week half life. This is why that 4th week your trough levels are really really low, not nearly the same as if you did you blood a week AFTER your infusion. If you find it intolerable - you could speak to your doc about changing you to an every 3 week infusion schedule instead. Hope this helps. ((hugs))

Thank you Kelli, I know I can trust what you say, I am definitely gonna figure something out, it is almost intolerable. I really dont know how you hold down a full-time job AND raise a daughter on your own. You are remarkably strong! So sorry to read that your lung nodules are back and the meds you are taking are making you vomit. God, you must be exhausted. I hope your finding lots of joy in the meantime with your daughter, it helps to have a child, they bring such joy

Awww no making me cry lol thank you for your kind words. I go to counseling which I highly recommend for anyone dealing with chronic illness...no one really gets us, you know? Let me tell you, by the grace of God and my daughter, thats how I get by. I think anyone, given my situation, would make it, they just haven't had to yet :) I learn to adapt situations - like housework - I can no longer clean from top to bottom, so during the week I feed us and the cats, cat box and dishes every other day or so and THATS IT, we go to bed on a strict time as well. One weekend is sheets and vacuuming and the next is toilets, tubs and mopping (for example). Every other friday I have off is mostly all doc appts :( but I am truly blessed. Could use all the prayers one could spare to get thru the lung stuff!

Talk to your doc my friend, there is NO reason you should be suffering so. Or another option is subq if he isn't willing to up you to an every 3 week schedule :) ((HUGS!!))

Kelli thats smart that you set boundaries for yourself not to overdo things. Your daughter will always remember you, and not how perfect the house is. My 22 year old daughter, tells me now that she admires the strength I had getting through what I had to, and here I thought somehow she resented me for being weak. So no doubt you are an extrodinary woman dealing with your life's not so great circumstances. There is nothing like the love for your child to keep fighting and never givinng up hope. That said, I am praying extra extra hard, and sending out positive energy to the universal powers, that the lung nodules fade back and that you will not even have to take the medicine, and if it doesn't quite work that way, that at least you can figure out how to get the meds in you (slowly) so you can tolerate it better. I'm REALLY praying for you! So keep posting with updates on your condition. I am going to get the ball rolling with either 3 weeks or subQ. Just got back from IV, gonna rest. Hope your next post has you feeling better, Stimpy

stimpy the 4th week i bottomed out i have been doing every 3 wks since 08

I would LOVE to do it every three weeks, but I know the doctor will not be able to get approval from Medi/medi. Im thinking subq, I have to do something I cannot function like this, its getting more and more difficult.

It can't hurt to ask for the change, and you may just get lucky. I would ask for the 3 weeks if you think you would prefer that to subq. I was having problems with my infusion so my doctor lowered my dosage, lowered the concentration and moved me from every 4 weeks to every 3. It has made a big difference. I know it seems odd that he lowered my dosage, but the problem was simply the half life of the medication, . My previous doctor was giving me a higher dose to take that into account but the infusions were very hard on my system. I think it is a very similar cost to my, maybe $400/year more to cover the nurse for the extra infusions but I get the same amount of medication as before.

Marilyn I am going to try. Its getting to hard to overcome the fatigue every last week of the month. I have to just force myself to convince the doctor to see if he can do this for me, I'm just worried he'll say no. But I'll try to stay positive.

Stimpy - I have had 5 infusions at this point. For the first three, I was absolutely running on fumes the week before my next one was due. The last time I had it done, I was able to withstand 4 weeks, with only minor fatigue. I am cautionsly optimistic that things will continue to improve for me, allowing me to last 4 weeks without major problems. I think that one of the things that makes a difference is that I have become more successful at managing my stress and my chronic pain throughout the month. I say this only because fatigue and pain have played a major role in my ability to function at an overall better level. If you discover new ways to manage these symptoms while you are functioning well, it makes it that much easier mentally to call on those skills when you are feeling poorly. It's far from the only thing that makes a difference for me, but it seems to lower the intensity just enough so that I am able to make it every four weeks.

As always, do what works best and feels best to you. We all share certain similarities but it's the differences that make us in need of individualized treatment.

My experience is similar - I really get run down the third week. I find myself looking forward to my infusion, which surprises me, and makes me sort of sad. (I wish I were looking forward to a vacation or something!)

My doctor says that a some of his patients have them every 3 weeks, but I am also reluctant to go to my insurance company and ask for more. My doctor checks my "trough" levels from time to time, and they are usually o.k. (not great, but within range) at 4 weeks, so I doubt the insurance company would go for it. I also think that 3 weeks would be more disruptive, since I'm not good for much for a couple of days following my infusion. I have learned to pace myself as much as possible in anticipation of that last week, but some things just can't be helped. I was called for interviews last week, and had to go even though I knew I wouldn't be at my best.

Since I have also been sick, I noticed a huge difference in the way I felt about 3 days after my last infusion, and wish I felt like this all of the time! It is sort of like beating my head against the wall, then enjoying how good it feels to stop.

Hi Stimpy, I am new to this group and it is amazing to finally see comments from people going through the same thing I am. Very few people in my area receive treatment for this and I am by far the youngest of the ones that do. No one understands the fatigue and symptoms we go through. Most doctors don't even understand it. I have been on IVIG for almost three years now and I still have bouts of fatigue that some days make it hard to even move. I have a full time job and a four year old so I don't have a choice. One thing that has helped me recently is that they found I had some serious vitamin deficiencies and since being put on some high level vitamim supplements, my energy is slowly starting to get better. If you haven't had your levels checked recently, you may want to ask them to check for vitamin levels such as D and B. A lot of women have low D levels which also add to the fatigue. I sure hope things get better for you.

Stimpy
I am like you the last 2 months I struggle to do anything the last week, before my infusion. I would think not being diganosed until just recently I wouldn't feel any differant but I do feel better weeks 1 & 2 then starting week 3 my loose stools start coming back and then in week 4 the bowel pain and all liquid stools start and I seem to dehydrate and become weaker and weaker.
I'm just as new at this as you are so we both have so much to learn and we can take so much from all these great people on this blog and I am so thankful I found it.
Eric

right now my life super sucks right now, i have no time or energy to deal with ivig issues. i had surgery for a severed radial nerve on right arm tues am the pain is ungodly, il be happy just to live thru this, i am in complete prison my arm is in cast from shoulder to fingers and it sucks, min of 20 weeks, then i gotta deal with ivig, i just cant do it just trying to cope.

Hi I am new to this advice and group talk. I have no one to talk about this health problem we have.I have been doing the sub Q weekly and find that I have less ups and downs. By the time you go back into get the next IVIG (4 weeks apart) the levels are so low you completely are wiped out. I also find this way I am not so wiped out after the sub Q like I was with the IV. I would have to agree on having the doc check your vitamin levels too. However if you can't poke yourself with needles and stand the hurtful lumps every week sub q is not for u. I am a phlembotomist so sticking myself isnt to bad.