My guy saw the Rheumatologist today upon referral from his Neurologist. He has been on 80 mg of Prednisone daily for 6 months and IVIG 2days a week per month.we were looking at the Immuran as a possible boost to getting some function back to stand and walk and were shocked to hear that it was being prescribed in an attempt to withdraw expensive IG. The Canadian Pharmacare puts massive pressure on docs to reduce Ig and enforces cumbersome, time sucking paperwork. Today’s discouraging visit was not therapeutic nor supportive of the Patient with CIDP but an accounting exercise. I am pissed and my guy is confused and disappointed. Thoughts?
Dealing with the insurance provider, whether nationalized or private, is difficult. My son has been dealing with two different insurance companies here in the states, and it is really frustrating. He was on my insurance and receives an IVIG treatment every 3 weeks. He got a job and is with another insurance company with the city, that is self-insured. He has worked his way through the appeal process with both companies in order to participate in Dr. Burt's stem cell therapy program at Northwestern Hospital. Even though this program has been highly successful and Dr. Burt has approved Caleb for treatment, and the cost would be far less than continuing with IVIG, because the treatment is still considered experimental, they are hesitant to allow him to do it. Because his current employer is self-insured, the last appeal is to a committee composed of city employees and a city council member. He meets with them next Thursday. Please pray that the committee sees the logic of his case and allows him to get the therapy.
So my advice to you is to appeal any decisions made as much as possible.
Whether insurance is a nationalize plan or private, the fact is that both are going to be concerned about cost. I still think that we are probably better off without a one-payer national solution, as it allows at least some competition to work toward improvement. A one-payer national plan with bureaucrats running it doesn't have much reason to improve.
We are in Australia and I have had a similar experience recently with our daughter. Her Neuro is also under pressure to reduce number of patients having IVIG and he suggested she go off it all together and try some other medication he heard about on a conference (nothing except IVIG has worked for her). This medication he was talking about, but by another brand, had been proven to cause cancer! There was absolutely no way we were going to consider that. So we agreed to stretching out her IVIG an extra week, and in that time she has had a relapse with more permanent axonal damage. Its so disappointing and hard for us as a family to accept. I don't understand why they cant put the patient before cost.
Catherine H There should be NO arguments about IVIg in Australia - see National Framework for Immunoglobulin Products.
(Though having said that it could be our idiot federal government trying to bend the rules??
It might be worth looking at the nerve conduction results. There is a point where the nerves are beyond repair and none of the current standard treatment will fix that. If there is a chance of a fix OR the treatment will prevent further loss then the treatment is worth perusing. As I understand the difference, Prednisone is a fix (with side effect risks) but not a cure, while IVIg can be a cure - and for some people none of that works....
In relation to IVIg it is also worth looking at the specifications of the product you are using. Look for the half-life and consider that in relation to the recommended dose, how much you are getting and how often. You then get an idea if your treatment interval and amount is enough to maintain an effective level of the product in your body.
Hi , My son is having the same problem in the UK.
IVIG for 3 days every 3 weeks works for him but the neurologist is attempting to reduce the frequency of IVIG by using Imuran [azethioprine]. The pressure to do this is financial. It has so far made no difference to my son after a year but he is to have his dose increased in october. I am very concerned about this.
Michael C Stark thank you very much for posting this information. I am going to look into it in more detail. I was told that worse case scenario was that the hospital would have to pay for it. This doesn’t make sense according to that info you gave me. Something doesn’t sound right does it? Thanks again.
I have told my story before, but it is worth repeating. I was diagnosed with CIDP in 2009. My neurologist first tried prednisone, which did nothing for me,and I wound up back in the hospital. Then he put me on IVIG, for three days every three weeks. This worked almost like a miracle, but I could feel myself starting to slip a bit near the end of each three-week period, so I actually looked forward to going in for the IVIG.
After a year or so, he started me on Imuran, in addition to the IVIG. He said that it would take six months to see any effect, and that was the case. Then, I gradually started to notice that I still felt pretty good after three weeks. So, I lengthened the interval between IVIGs to four weeks. Later, I lengthened the interval to five weeks, then six, then eight, then twelve. Finally, a little more than a year ago, I stopped IVIG altogether. I have some residual weakness, and I get fatigued easily. I still have a little numbness and tingling in my feet, but basically I am in pretty good shape, and can lead a pretty normal life.
I did not have a bad response to the IVIG treatments - the only physical drawback was that it made me very tired for a day or so. So the three days of treatment were pretty much lost days. Also, it was a big inconvenience, and not really a pleasant experience. (I had my infusions in a chemo clinic, so I was mainly with cancer patients, which was kinda depressing.) It also made scheduling the rest of my life difficult, although the doctor who managed it was very flexible, and allowed me to set my own dates. So, overall, I am happier on Imuran than on periodic IVIG.
I have to say that my neurologist admits that he cannot prove that the Imuran is what allowed me to get off the IVIG. It is possible that the CIDP just burned itself out, as they say. He has mentioned the possibility of stopping the Imuran to see how I do, but I am reluctant to take the risk. Imuran has its own drawbacks, but I hate to take the chance of going back to the awful experience of full-blown CIDP.
Whatever you decide, I wish you the best.
Bill
Hello, if you're in Canada, I was told that Immuran takes a much longer time to get into your body before it works for CIDP< Prednisone is still the best treatment as well IVIG and Plasma. Should he not be reducing his dose of prednisone by 10 mg every month or so?? Ivig worked well for me, but then I became immune, Plasma plus prednisone has kept me stable now for 8 months, still on 5 mg/ of pred every second day. Hated the side effects, but I'm walking, balancing again and I do have relapsing CIDP.
I wish you well.
Check point 6 in this link. You can find that page from the original link I gave (with a few steps) - and if your people follow the rules then there is no question - Commonwealth/State pays.
Catherine H said:
Michael C Stark thank you very much for posting this information. I am going to look into it in more detail. I was told that worse case scenario was that the hospital would have to pay for it. This doesn't make sense according to that info you gave me. Something doesn't sound right does it? Thanks again.
I've been on a weekly dose of IVIG for about five years. About one and a half years ago my neurologist put me on Imuran. Within a month it had completely stopped my bone marrow from producing blood cells. When I couldn't even go up a flight of stairs I went to the ER. The docs there told me they had to perform a life saving procedure, which consistent of giving me four units of blood within 24 hours. When they let me out I was strill a bit low on RBC and hematocrit but no longer in danger.
A lot of people are on Imuran but, like most powerfull drugs, it must be monitrored.
I've also been on Rayos for a few months for RA. It's a daily two mg dose of slow release prednisone. Seems to be helping the RA and no side effects yet.
Thank you for all you’re help, we are trying to figure our best leverage point. Did any of you that went on Immunosuppresents get immunization for flu, Pnemo and Hepatitus. My guy strongly opposes immunization of any kind but I feel this is an individual, specific need. Thoughts?
My doctor will not allow me to get a flu shot, because I had one shortly before my CIDP manifested itself, so it is likely that the flu shot was the cause. On other immunizations, he allows "killed" vaccines, because the bad guys are dead. "Live" vaccines are not allowed. So, I was allowed to get a pneumonia shot (which is a killed vaccine), but not a shingles shot (which is a live vaccine).
Joe makes a good point. Imuran does suppress the immune system, so it obviously does affect the blood composition. This means that it will cause a lower platelet count and white blood cell count (WBC). My neurologist started me on a low dose, and had me see a hematologist to monitor platelets and WBC. He raised the Imuran and continued to monitor my blood, until he was satisfied that I was at an acceptable level. I didn't realize exactly what he was doing at first, so I voiced some concern about my platelets being lower. He said, "That's how we know it's working!"
I was able to arrive at an acceptable level of Imuran - in my case, 100mg per day. My platelets are now stable at about 100,000, and my WBC at about 3.5, which are both a little low, but acceptable. Apparently some folks are more sensitive to Imuran, and just cannot handle it, which is why my doctor monitored me so closely at first. That may have been what happened to Joe.
In any case, the key message is: If you start Imuran, or any other immune suppressant, be sure to have your blood monitored regularly.
joe said:
I've been on a weekly dose of IVIG for about five years. About one and a half years ago my neurologist put me on Imuran. Within a month it had completely stopped my bone marrow from producing blood cells. When I couldn't even go up a flight of stairs I went to the ER. The docs there told me they had to perform a life saving procedure, which consistent of giving me four units of blood within 24 hours. When they let me out I was strill a bit low on RBC and hematocrit but no longer in danger.
A lot of people are on Imuran but, like most powerfull drugs, it must be monitrored.
I've also been on Rayos for a few months for RA. It's a daily two mg dose of slow release prednisone. Seems to be helping the RA and no side effects yet.