curious Scott’s mother

Joan,

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,
Lori

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.
Kelly

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.

Beth,

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

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.

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

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.
Laurel

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.
Laurel

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.