Confused now

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.

joan,

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

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The dr is using outdated literature to make his case for steroids.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.
Kelly

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.

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

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.
Kelly

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,
Kelly