Confused now

    • Anonymous
      January 30, 2008 at 1:57 am

      Well my husband was told today that Medicare does not pay for ivig unless you get it as an outpatient. He would have to be in the hospital for 5 days as an inpatient. We also have another insurance (he is retired) but there is a limit and we were hoping medicare could pay so we are starting on prednisone and Imuran. This neur prefers and I feel we were at his mercy
      We hope this is not a mistake as everyone seems to think ivig is the first thing to use for cidp. I did tell him everything I read said also. He said most of that is for patients and he brought a book to show my husband explaining, but Bill said he did not understand it.

      I am not sure how this came about since we both were looking for ivig . The doc said easier to go on to it if Prednisone does not work than doing ivig first and going backwards. The nerve bioposy which we also was not going to do came back as a firm diagnosis . My husband Bill did not show protein on the spinal tap so we did proceed with this bioposy. Everything I thought we were not going to do we did do. Whew

      I guess the doc did a good job of changing our minds. Said he has had good luck with prednisone. Will do for 3 months. starting with 3 times a day and Imuran 1/2 tablet to start then one, one and a half , etc.

      I know I have learned alot from this site and the ones who have advised me but I am not the patient and it seemed Bill did not know what to do but go along with this.

      Anyone here getting ivig paid for at all from Medicare and retired please let me know if this is the case. I would appreciate it in case we do have to go with ivig eventually.

    • Anonymous
      January 30, 2008 at 2:32 am

      Hi Joan, Your hubby can get his IVIG as an outpatient. There are home nurses that can do it or outpatient infusion sites. Your husband will have to Tell his dr he wants ivig as either an outpatient or through a homecare agency to get it covered-It Is Possible. No need to be admitted for the infusion as long as the nurse giving it is knowledgable. Take care.

    • Anonymous
      January 30, 2008 at 8:13 am


      your doc does have it backwards – ivig 1st, then pp, & finally prednisone if the 1st 2 do not work. pred is easy to administer & cheap, which is why he is suggesting it 1st, but it is miserable on the body [in fact a killer sometimes]. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      January 30, 2008 at 9:21 am

      There are many others on this site that have Medicare & receive IVIG. Of course they are going to deny it at first – it IS expensive. You have to push them a bit & they will cave in because they know that it is necessary.

      The thing with doing steroids is that your husband is going to need treatment for a long time…maybe forever. Steroids come with many undesirable side effects & the longer the are taken, the worse the side effects are. You have to think about that when making the decision whether or not to take them.

      The dr is using outdated literature to make his case for steroids. Steroids used to be used as a first line treatment. Recent studies have indicated that there is a higher success rate with IVIG and it should be used first. Dawn (Kevin’s_mom) found some abstracts that say that Prednisone is actually more expensive in the long run compared to IVIG because of the treatment of their side effects.

      Of course, it is up to you & your husband to decide what the best course of treatment is for him. But, I’m telling you…we’re telling you, that there are more options than what this dr is giving you.

      Good luck.

    • Anonymous
      January 30, 2008 at 10:47 am

      I have received 13 IVIG treatments at an Out Patient Onocology Center and Medicare with a supplement has paid for them.
      I was dx with CIDP in Nov. 2007
      I’m also on Prednisone 40 mg a day and reducing the dose weekly
      CellCept 2000 mg a day
      Arava 20 mg a day
      At this point I have not made much if any progress. See MD today
      Good Luck in getting Medicare to reconsider. The MD may have to put down a different diagonistic code.

    • January 30, 2008 at 11:41 am

      Hi Joan,
      Do not despair. I do not want you to be over whelmed by our ideas of ivig. Although I strongly agree ivig is first, you have to consider what you can get the insurance to pay for. I would like to add that insurance does try to quibble about the ivig because it is an off label use. Three times now we have had to submit letters of medical necessity FROM THE DOCTOR. As soon as they get the letter, no problem, ivig as scheduled. I wonder if your doc is just really bent on the prednisone because it is a medicare payment, meaning not as much money to the hosp. or the hospital pharmacy. OUTPATIENT care is more than doable. Kevie along with many others on the site get it evry month or even more often. Ultra care, Accredo, Coram, are just a few companies. We rest comfortably at home on our couch while the nurse stays.

      Prednisone has a host of problems that people suffer from on the site, weight gain, mood swings, bone density loss, I am sure you have read everything. In addition, Immuron has many risks. PM Laurel, as I believe her husband had a sepsis reaction. On the other hand, some have put cidp into remission with these drugs. It is a hard choice. The way I see it, I would try to push for the ivig, if after say 3-4 loading dose sessions )3-5 days each session) there is no change, then I would try the treatment plan advised by the doc. It would be much harder to go backwards, prednisone from what others have described on the site, is not that easy to get off of. Something else I came across in my readings, is that prednisone actually causes weakness in some, so how can one determine if cidp is worsenning, or if it is the prednisone. You have to follow what you think and feel comfortable with. Maybe a second opinion with nerve biopsy in hand would not be out of the question. Good luck to you in your decision, what ever it may be.
      Dawn Kevies mom

    • Anonymous
      January 30, 2008 at 5:20 pm

      Wanted to clarify that we did not check with Medicare . It was the doc that said that Medicare does not pay unless it is outpatient and you do not want to do your first infusion as an out patient . ( I guess so they can monitor you better) He did not say.

      Well I appreciate all of you as I did show my husband these suggestions. Told him I was really worried about this option of prednisone and Imuran. He said it was ok and not to worry about him. Also said doc has not given us the time of day as far as I am concerned. He said we see the practicianer Feb 5th so we will have our questions and we are thinking she will take the time more than him.

      Depending on how he does on this (started today with Pred and Im) we will be watching closely . Bill needs to get blood tests every 2 weeks to check liver , etc. He also goes to his family doc who we really like. I will go also to see what he says.
      I am skeptical but willing to see how it goes in the next month.

    • Anonymous
      January 30, 2008 at 7:43 pm

      Joan –

      A dr telling you that Medicare isn’t going to cover a medication is a HUGE red flag to me. The dr doesn’t know what Medicare will or will not cover until he TRIES to get the treatment. It is up to the physician to help with the red tape at insurance companies to get their patients treated. Either he doesn’t want to bother with it or he doesn’t believe that IVIG should be a first line treatment.

      I would get another opinion from another neurologist AND/OR call Medicare yourselves & ask how to get IVIG covered. It is used to treat SO many diseases now. I find it hard to believe that Medicare tells everyone who needs it NO.

      Also, IVIG is most often given in the hospital first because most people are hospitalized when they are diagnosed. A first dose can be given in the home or at an outpatient infusion center. Extra precautions are taken – just in case – but it is NOT unheard of. Emily’s nurse infuses people, at their homes, on a regular basis who have never received IVIG before.

      I know how frustrating all of this is, especially in the beginning. I went through so much with Emily & I know that all of this information gets overwhelming. Remember that we’ve all been there before & completely understand how you feel. It’s up to you to chose which advice, if any, to use. And don’t worry, we’re not pressuring you to do things “our way”. We’re just trying to share with you what we’ve already learned.

      Good luck at the dr’s on the 5th.

    • Anonymous
      January 31, 2008 at 1:39 pm

      Kelly (Emily’s mom)
      Doc did not say Medicare never pay . Only will pay if as an outpatient. As an inpatient they will not pay. Have you run accross anyone who went in as an inpatient and Medicare did pay? If anyone has let me know please. I do want him to get another opinion but I think he is not ready yet. He says he like the doctor and wants to give him a chance. I have asked him to write down everything he feels everyday so we can compare. I know his feet really bothered him last night but we were at someones house for dinner and they were pushing for him to be more verbal to the doc. He looked very depressed or else not feeling well so I suggested we leave. Later he said he was tired of the subject which I agree as it did not help him. He was feeling alot of pain more than he has. In the middle of the night he said he got up and took his blood pressure which was l37 over ? that is high for him but not me. Later it was ok.
      He is usually l00 over 70 or so.I think the conversation did that but the pain I do not know. This is his second day of meds . He seems more in tune with his feelings and to make sure meds are not interfering with his other meds.(called the drug store and all is ok)

    • Anonymous
      January 31, 2008 at 4:16 pm

      Joan –

      I can’t, off the bat, think of anyone that has Medicare & had their first infusion outpatient. However, you should NEVER just take the dr’s word for it. You MUST call & ask what exactly the insurance will cover. The dr could be wrong or there could be a code for the dr to use in order to get it covered. It never hurts to call & ask.

      If Medicare really won’t do a first dose at home, then going into the hospital for the treatment might be worth it. After the initial loading dose, then he’ll be able to get the treatment at home. Emily spent about 20 days in the hospital over a 10 month period, most visits were 5 days at a time, so I KNOW how stressful being in the hospital is. I know it’s not something that ANYONE really ever wants to do. But, if the ‘roids don’t work, or if your husband decides that he doesn’t want to go that route, the hospital stay & IVIG are always an option.

      As for your husband’s blood pressure, it’s stressful dealing with all of this. It’s hard when you want to believe in a dr (been there, done that!) and want to give them a chance. The treatment isn’t what he expected or wanted & it’s hard to deal with that. Plus, everyone pushing him to question the dr when he really just wants to take meds to feel better & go on to live a normal life. Add on to that the ‘roids & he’s running an uphill battle. I’m not surprised that his blood pressure was high. I know that mine has gone up to 145/100 and I’m normally around 100/70.

      I think, if it were me, I’d call & ask about the insurance coverage but not tell your husband you are doing it. Then once you get it all figured out (and hopefully IVIG approved!) then you can tell him that it’s all taken care of & all he needs to do is get the infusion.

      In the beginning everything is totally overwhelming. Not only for the patient but also the caregivers. Just take everything 1 day at a time, 1 decision at a time and it will get easier.

      Take care,