curious Scott’s mother

    • Anonymous
      March 19, 2008 at 10:23 am

      Just quickly thank everyone who have answered some of my questions on medicare and also my sons thread regarding imuran and prednisone. My husband is now in the hospital getting solumedrol , and an antibiotic. they are testing his blood as he does have an infection. We have been worried about septis. Will know more in a couple of days. He came into hospital with chills and shaking. Was dehydrated. He was taken off imaran by neuro because of swelling and infection of where nerve bioposy was. That was a week ago. Neuros practicianer said get another blood test before starting it again. Well that will not happen now. Was suppose to be coming off slowly of the prednisone, but now hospital put him back up from 50 to the inital 60 mg. He has never improved with the meds but also has an sinus cold (infection) before we left for Disney and I as well had bronchitis. Both treated by our family doc. Coming back a couple of weeks ago we both got intestinal flu. Now this. He never did get stronger after starting with prednisone and imuran maybe due to these infections but after reading my sons (curious Scott) thread and your answers I am very unhappy with neuro especially since I have left 2 messages with his assistant. (practioner) His white blood count was 1.9 before hospital and then .7 upon entering hospital. Just got new white count a few minutes ago and it is now 6. Happy days. But I do not feel that this is the end because we still need to know why this happened and how to keep from happening again. As stated ivig is the way to go and maybe now my husband will want that 2nd opinion I have been asking for.

      Thanks to all and please respond if you care to.
      I will be staying at hospital (have been since 3:00am On Sunday until last night(Tues) Going back to stay until I can get some answers on the infection. guess this was not so quick


    • Anonymous
      March 19, 2008 at 11:39 am


      Can you and your son convince the drs. to start the loading dose of ivig while he is there? He could go home a new man.

      I wish I had your phone number, I’d call you.

      Good luck,

    • Anonymous
      March 19, 2008 at 11:40 am

      Thanks for keeping us updated.

      I’m not sure if it was mentioned before but Prednisone also weakens the immune system & makes people more susceptible to illness & infection. He could keep getting sick because prednisone, along with the Imuran, is lowering his ability to fight off the germs.

      With his WBC being so low it’s no wonder why he keeps getting sick. His immune system was pretty much depleted by the drugs he was on.

      People with CIDP tend to have a worsening of their CIDP symptoms when they get sick. That’s because CIDP is an autoimmune disease & once your immune system gets going after germs, it also creates the bad antibodies that go after the myelin. That could be why his CIDP symptoms seem to not be improving.

      If your husband has an infection & fever right now then they won’t do IVIG until that is cleared up. What antibiotics is he on in the hospital?

      I know the worry that you are going through with him getting sepsis. My daughter had a central line infection in Aug 2006 & she was on the borderline. Luckily her infection was pretty much contained in the catheter & didn’t fully enter her bloodstream. She was given heavy duty IV antibiotics & then put on oral antibiotics for 2 weeks to take at home. Just make sure that your husband is getting the antibiotics he needs & on time.

      Good luck.

    • Anonymous
      March 19, 2008 at 4:35 pm

      Hi there….this is Joan’s daughter, Beth…I was curious if IVIG can be started before my dad is weaned off the Prednisone? The neurologist wants to wait 3 months while he is tapering off the steroid…does this sound right or is it possible to begin him on a different treatment after he gets over this Sepsis in the hospital??: Also, he does not go back to the Neuro until May 1st…if it were you would you demand to see him sooner since this episode occured and treatment is not working. He has gotten a lot worse in just 3 months, I would hate to see what another month would be like staying on the same meds.

    • Anonymous
      March 19, 2008 at 6:22 pm


      Of course you can have ivig with predisolone. It’s a steriod and there are many, many cidp patients on both. My son is 3 and receives solumedrol (ivig steriod) and ivig. He gets solumedrol each week (at home) and ivig each 3 weeks (at home).

      Do you have to stick with that neuro. or can another dr. prescribe the ivig? I just can’t believe the guy has never given your dad ivig. That should have been the first plan.

      I’m not saying you need to ditch the guy but if after you, your brother and mom sit down and talk with him and he still does not agree to ivig, I would get rid of him. The longer your dad’s body is attacked, and that is what is happening now, the worse the damage.

      We looked for over a year for a dx. for our baby and no drugs were ever given. Because of that, I guess he has permanent damage, he can still only walk with a walker.

      Good luck and keep us posted.

      My cell is 228-282-5050

    • Anonymous
      March 19, 2008 at 6:54 pm

      I hope your husband is doing better and that the infection is under control.
      I have a couple of suggestions. I work with children with autoimmune diseases at my hospital. When we use Imuran, we watch the WBC pretty closely so that it does not get too low and cause a significant risk of infection. We ofter target an absolute lymphocyte count of 1000. The absolute lymphocyte count is the WBC X 10 X the number of WBC per hundred cells. So, if you husband’s WBC was 1.9 and he had 10% lymphocytes, his absolute lymphocyte count would be 1.9 X 10 X 10= 190. If someone is really low, they are more at risk of infections for which immunoglobulins help with the resolution–this can include sinus infections (which IgA helps to resolve) and viral stomach flus. Your husband was either on a dose which was too high or he is especially sensitive to this medicine (which has the same general effect).
      2. Absolutely you do not need to stop the prednisone before starting IV IgG. I think the neurologist may have said this because it both are used it is hard to know which is helping and if both are really needed. Your husband is, however, not doing well with CIDP control on the prednisone and imuran and he is getting toxicity including infections severe enough to require hospitalization. This is an indication that sometime needs to be done differently and soon. They may want him to be stable from the infection before the IV IgG (meaning no fevers and no low blood pressure concerns) before giving the IV IgG, but he does not need to wait very long. Depending on which antibiotic he is on and his kidney status, it might be important to make sure there is plenty of fluids going through the kidneys to make urine before the IV IgG.
      Added in edit. I meant to also say that the above is that “you do not need to stop prednione”, but there is a “you do not want to stop prednisone” part too. You want to keep control of the disease and if they try to taper completely off prednisone first, this is unlikely to happen. In a perfect world, you could use just one, but bad diseases require imperfect methods sometimes. They can use both IV IgG and taper slowly off the prednisone and see if your husband can be okay with only this treatment. Some people need both, but also some people do better with pulse steroids than with daily doses.
      3. IV IgG at this time may help not only the CIDP, but also help ward off infections.
      Many people on this forum have gotten IV IgG for GBS/CIDP including me and it helps.
      WithHope for cure of these diseases and to make it safely through the treatments until that time.

    • Anonymous
      May 2, 2008 at 1:45 pm

      To those who have replied to my daughter Beth. Unfortunately she is not well informed. We moved from Ohio to Tn and I know it is hard not knowing what is going on but we do not talk to her often as she has 3 young ones and very busy right now with them plus her church.She cares but it is not the same as being here. I have not had a minute to myself until recently. I also think that it was probably the the white but I am not sure now since I do not know the difference. It was .6 at one time.Blood pressure 50 over 80. They did test the blood for sepsis and it took 3-5 days to get the results before they could determine which antibiotic he needed. It took from 3:00am to noon to get him a room with waiting and testing being done.Unfortunatly this was one of those nights I stayed up to copy more info from this sight to show my husband so I had no sleep but thank god he went to bed early. He does not get on computer much any more but relies on me. It can be educational and also heart wrenching at times.

      He had alot of problems with bowels, the biopsy area, gerd, sleeping problems,moodiness just to mention a few. It has been hard on both of him and I.We had company in between 2 hospital visit which was probably surprising to some but we needed to laugh again as we were both very depressed.

      In Tennessee they do not call in to your doctor , they have what you call hospitalists on staff who determine what is wrong and who they do call in. The hospitalists told me that Tennessee was not the place to have cidp. Very few doctors even neurologist even know much about cidp. This doctor called in a infectious desease doctor who was wonderful. Spent alot of time explaining things to us. He knew I did not like our neurologist but my husband does.. but he said there were only two neurologists in this area who were specialists in this area and ours was one of them. He supposedly is a genius so they say. he spend very little time with us and has only once even asked if we had any questions. I think he had l7 patients on this floor so maybe that is why. I felt my hands were tied . I have to go with what we have and husband is the patient not me and he does not want a second opinion.

      This is hard to take when I care so much and cannot do anything about it.
      Now for the results please bare with me: He was septic.
      The antibiotic was for l4 days so he went home (after 5 days)with it in a bag tied to his waste and into an iv. After one week of being home with this iv we went back in for 5 days of ivig. His walking is better and he is down to 10 mg of prednisonefrom 60. He will have another treatment every 6 weeks. His next one May l3 and l4. If he needs steroids hopefully they will give it but being on them long term is not good. He hates it. And hard to get off of.

      The imuran is what caused this immune system to go so low so I do not understand how those of you that have had it along with steroids can take it so long and not get sepsis like my husband did. I have read the posts and unbelievable. Our doc believes this is the first line of treatment and 80% of his patients are on this with good results. DO NOT UNDERSTAND THIS. We went to Disney and prior to this we were both sick and family doc gave antibiotics then intestinal flu for both of us after disney. Next day- BOOM The doctor asked us if we knew what caused it-dah

      He has fallen about 9 times but only two times just recently as he has gotten stronger, however doc thinks it is from looking up as my husband told him. There is a area in the back of the neck that when you look up it (artery or vein -blood supply) it shuts off blood supply and causes you to get shaky in the legs and he falls. Another symptom is headaches at night. He is to get mri of neck and head. I had him go to a eye specialist who knows about gbs and other autoamune diseases (did not know about cidp but best doc around) and he thought it was from ears . We shall see.

      The nerve biopsy is healing with the help of a wound doctor. Takes a long time. Now Medicare not ok’d the doctors nurse says they will not ok it until it is done and then they will write a gruesome letter once denied. I disagree with this but who am I. Cost is up high about 15,000 a treatment Doc said so every 6 weeks can really add up. Pray for medicare coverage.

      I think I have said enough but hopefully it may help others . Not the same for everyone but I do hope it may help
      Next step is extraction of wisdom teeth possibly- god help us.

    • May 2, 2008 at 6:27 pm

      Hi Joan,
      I noticed you said the bill was $15K, does that include the hospital stay? The reason I ask, is that seems low for loading doses. Kevin’s bill, 100grams total (2g/kg) is $16.5K. He weighs 114lbs, just to give you a comparison of your husbands amount to weight. IVIG only lasts 42 days max in a perfect situation with a 21 day half life. Obviously you guys are using it up faster than 42 days, and from what you write it sounds like a maint dose to begin with (1g/kg) so I would assume it only has a 21 day full life (doctor question, I am assuming, so better to check) So in a nut shell, you guys are using (from your bill amount I think) hakf the amount and stretching it to twice what it can last. The very longest you should go based on his clinical presentation should be 3 weeks, or the 21 day full life of a maint. dose. Who knows, just a mom thought, certainly not qualified, just concearned. Best wishes to you guys and hope things balance out.
      Dawn kevies mom

    • Anonymous
      May 2, 2008 at 8:26 pm

      Hi Joan,
      We had our Imuran nightmare this past Christmas with my husband getting sepsis just 2 weeks after starting the Imuran. It is just now that his bloodwork values are getting back to normal. I think many people have small untreated infections somewhere in their bodies–particularily late middle-aged or older people (my hubby is 60)–and these infections start going wild when a person’s immune system is shut down with the Imuran. They never really determined the source of infection in my husband, but he showed consolidation in the lungs (pneumonia) when he was hospitalized. My husband has always had minor diverticulitis and some irritable bowel issues–so perhaps knocking out his immunity allowed a small inflamed area in the bowel to run rampant with infection. Good luck.

    • Anonymous
      May 2, 2008 at 8:27 pm

      Hi Joan,
      We had our Imuran nightmare this past Christmas with my husband getting sepsis just 2 weeks after starting the Imuran. It is just now that his bloodwork values are getting back to normal. I think many people have small untreated infections somewhere in their bodies–particularily late middle-aged or older people (my hubby is 60)–and these infections start going wild when a person’s immune system is shut down with the Imuran. They never really determined the source of infection in my husband, but he showed consolidation in the lungs (pneumonia) when he was hospitalized. My husband has always had minor diverticulitis and some irritable bowel issues–so perhaps knocking out his immunity allowed a small inflamed area in the bowel to run rampant with infection. Good luck.

    • Anonymous
      May 2, 2008 at 9:44 pm

      Hi, I hope all gets better for both of you.

      I have a couple of little suggestions. First, be careful about your husband having any surgical procedures like wisdom tooth extractions. It will be harder to heal since he is on steroids and any infections/inflammation can flare the immune system and cause worsening of the CIDP. That does not mean he could not have what he needs to have done, but I am trying to say only do what needs to be done–not elective procedures at this time until everything is more settled and clear.

      You may want to together think about a second opinion, since you are not keen on the current doctor and since these are hard and rare diseases. Perhaps your husband will agree since it is clear that you have questions that you do not feel are being addressed for the best for you–even though he is okay with the current doctor. You can search Knoxville in the threads and find suggestions. One person that volunteered to help answer questions was jack11309 who lives in the area. It sometimes helps a lot to talk to someone else that is facing this illness. So if your husband does not want to get a second opinion, think about searching out someone else that lives nearby and calling them.

      Third, it is an unfortuante fact that a lot of medical care happens only on appeal. In fact, it often seems like places say no without even seriously considering the situation. So do not be discouraged about the need to appeal by a strong letter–just be persistent.

      WithHope for cure of these diseases.

    • Anonymous
      May 3, 2008 at 11:19 am

      Sorry for the confusion Dawn: The $l5,000 I mentioned was just a guess from what the dr. mentioned once. We have not gotten the bill yet but I will let you know once we do.

      We did ask him about the life prior to the infusion and he said it was 6 weeks. I know it took longer than 3 or 4 hours to infuse him. It was more like 5 or 6 but then I am sure it was done slowly. The next time he goes on May l3 and l4 is to the infectious disease doctors office so I will ask the nurse how much is given and how long it should last. I will get more out of them than our Neuro. Our Neuro at one time mentioned l5,000 for one infusion. I believe he does not use this treatment first because we asked if it lasts that long and he said we will notice the tapering off but this is the normal. So I guess he prefers Imuran as he thinks that it kills the antibodies that are attacking the nerves but how can it continue and not cause someone to go sepsis. I did not call the neuro when he got the first cold , I called our family doc. He is the one that noticed the count was low . He have both of us antibiotics and it did stop our infection. The neuro had told us to see our family doc if he got sick which we did.
      The family doc now thinks the answer to his falling when he looks up may not be the shutting off of a artery as the neuro suggested. He suggested the neuro try the tilt test but in the meantime the family doc took his blood pressure 3 different times: once lying down, sitting part way up, and all the way up. It was different all three times. I seriously doubt the neuro will test him but Bill is to take his blood pressure 3 times a day and if it gets down low he wants to know. The low was 82 over 50.
      Bill is to get the mri of the head and neck for the neuro.

      About the wisdom teeth. Of course he forgot to ask the neuro or family doc about having them taken out. They are diseased but not yet infectious.

      I did not go with him to family doc this time as I was so upset with him going along with the neuro office on the medicare. I remember someone telling me you can get it ok’d (the ivig) prior to getting the ivig. It seems like everything I have read hear has happened ex: first line of treatment should be Imuran per our neuro, and no matter what I say he seems to agree with the doc until bad things happen. How can people keep on it without getting a blood disease. I can only fight so much then I just quit asking and let him take care of it. I am so frustrated . I will go with him about his wisdom teeth but do not know if it will do any good.