I have been getting IVIG since March of this year. Now 100g over 2 days every 3 weeks. It seems like my condition is getting a little worse. I was looking at some immunosuppressant drugs that regulate t-cells. One that looks interesting is ATGRAM. Has anyone had experience with this or any other immunosuppressant drugs?
I was diagnosed with CIDP about four years ago. After some time to figure out what would work with me, I began getting IVIG for three days, every three weeks. It worked well for me, but was very disruptive. Fortunately, I have good insurance, but there was still a large out-of-pocket expense.
Then, my neurologist started me on Imuran (actually, the generic, azathioprine). He told me that it would take 6 months to have a noticeable effect, so to be patient. As time went on, I was gradually able to lengthen the time between IVIG treatments to 4 weeks, then 5, then 6, then 8, then 12 weeks. It has now been about 6 months since my last IVIG, and I am hoping it was my last.
So, was it the Imuran that suppressed my immune system, and allowed me to get off the IVIG? Even my neurologist will not say for sure. It might be the Imuran helping, but it is also possible that the CIDP has just gone into remission.
He has said that I might think about stopping the Imuran, and watching my condition very carefully. If I start to get worse, then we would have good evidence that it was the Imuran which was helping. In that case, I would probably have to go back on IVIG for a while, till the Imuran could build up its effect again. It's a hard decision. I don't like the long-term effects of the Imuran, but I don't want to go back to the problems with CIDP, either.
I should tell you that he has one other patient who had exactly the same experience. Not exactly a huge data set, but it at least suggests that maybe the Imuran is effective.
Bill
One thing I fail to understand is why patients are inconvenienced by frequent IVIG. The product I am on has a half life mean of 30.1 days (I used to think it was 22 - but that was the number of patients in the test.... LOL). My schedule is 4 weeks average and that appears to do the job. I can understand that some get slow infusions because of reaction and I know there is often a "loading" or startup dose series.
Bill a couple of questions, if you don’t mind.
How do you take the imuran? Pull, shot? Also you mention the long term side effects. What are they ?
Thanks.
Bill a couple of questions, if you don't mind.
How do you take the imuran? Pull, shot? Also you mention the long term side effects. What are they ?
Thanks.
I also am on IVIG every 28 days. I use to be every 21 days but am trying to push the time in between infusions. I have been at every 28 days now for a few months but I have to be honest, I can tell that 28 days is a stretch. I now start to have symptoms about 20 days out and they continue until I get the infusion at 28 days. And now that I am pushing the time between I notice that I don't recover as fast after infusions. It takes about 5 days after my infusion before my symptoms go away. Then I have about 15 days before they return. Things like tingling in my legs, burning hands, heavy feeling legs, weakness in my knees and fatigue. I am bummed out. I really thought after a while being stable on the IVIG that I would be able to push the limits. I guess I was wrong. I am reluctant to go back to 21 days but probably will have to if things don't level out. My neurologist also mentioned immune drugs. But I am scared of taking them. I don't know what the long term effects are so please share with us. Also, do you get sick all the time now because you are on an immunosuppressant? I don't want to always have colds and flu, etc. My daughter is in elementary school and brings home every virus possible. Do they suppress your immune system so much that you can't fight other infections and viruses?
Hello all,
First, to Chirpy: my neurologist was very firm with me about IVIG. He said that when I started to lose strength, that meant the myelin coating was being damaged. The myelin will grow back, but not always quite as well. So, repeated events of loss of strength meant that there might be a gradual long-term damage to the nerves. So, his guidance was that if I started to notice significant weakness, I should schedule an IVIG right away. My clinic was very accomodating, so I had no trouble doing that, and in fact I did move up my schedule a couple of times. If you are getting noticably weaker between IVIGs, you might talk to your doctor about going back to the three week schedule. Or, maybe getting a somewhat higher dose, which might last longer...? Unlike some folks, I had no real problems with the IVIG itself, except that I was drained on the day of the treatment, but going just from a three-week interval to a four-week interval really made life easier.
Now, about Imuran: it is a tablet. I take a 50 mg tablet twice a day, total of 100 mg a day. I know another CIDP patient who takes 250 mg, so I suppose the optimum dose might vary from person to person. If I take it on an empty stomach, it makes me slightly nauseated, but if I take it after a meal there is no problem at all, so that is what I try to do. Even if I forget and take it on an empty stomach, it is really not bad. I actually take the generic form, azathioprine, which is not too expensive.
Imuran lowers both your platelets and white blood cell count (WBC). So if you start on Imuran, your doctor will probably ramp you up slowly, and have regular blood tests at first, until he is sure your platelets and WBC don't get too low. Both my platelets and WBC are reduced, but still in the acceptable range. I got blood tests every two weeks at first, now every six months, and it seems to be stable.
The long-term effects are that you are more prone to infection, and to skin cancer. So, you will probably be instructed on things to do to avoid those problems. I am now obsessive about washing my hands, and avoiding sources of infection. I really try to avoid sick people, although can be somewhat hard to do. I know some people with suppressed immune systems avoid crowds, but I have not gone that far yet. I was advised to start wearing sun block when I go into the sun, which I am pretty good about, and to wear a hat in the sun, which I am not so good about. Fortunately, a dermatologist told me that I have a type of skin which is not too prone skin cancer.
I was afraid that I would be sick all the time, but it hasn't worked out that way. All I have had is a few colds. However, they do seem to drag on longer than they used to. I am not supposed to get a flu shot because my CIDP came on shortly after getting a flu shot. So, I dread the thought of getting the flu. But so far, it has not been a problem.
Hope this helps.
Bill
thank you Bill;
I will speak with my neuro about Imuran.
Terry
I am going to talk with my neurologist about going back to every 21 days of IVIG. I don't want to have permanent damage to my nerves. I have been lucky since I caught my CIDP and was diagnosed within 5 months. My CIDP also came on right after the flu (H1N1) vaccine. It was a classic case. I will never get the flu vaccine again nor my daughter for that fact. I don't trust it anymore.
Thanks for your info on Imuran. I might look into that type of treatment if I continue to decline with the IVIG.
I started Imuran while I was still getting IVIG. My neurologist said it would take 6 months before I saw any benefit from the Imuran, and I think it was at least that long. But, the IVIG kept me in good shape, while the Imuran gradually took over.
Good luck! I went through some bad times before we got things straightened out. I hope you have as much success as I eventually did.
Bill
Hi all
I am being treated for CIDP since Nov1999 nd was in a very bad physical status. I have started off on 10x 400 ml IVIG plus 100 prednisone plus 100 mg daily Imuran (Azahioprine). After 6 weeks we tapered off and stopped the predisone but kept the Azathioprine at 100 mg daily. I as admitted again at 4 monhtly intervals with excellent normality in between whilst I had to have WCC and FBC blood tests done monthly. I had been on this programme for about2 years when we stopped the Azatioprine - all still normal. By end of 3rd year intervals became shorter and I was admitted every 3 months for 6 - 8 x 400 ml IVIG, which kept me 100% normal. Intervals dropped to 2monthly - we decided Azatioprine definitely did the trick and I went back onto 100mg daily again with excellent efect. The side effects are not that bad but one has to look after one's skin, or any mucous linings or eyes drying out, steer clear of strong spicy food and alcohol and drink lots of water. I do not take flu jabs, careful about having anesthetic of any kind and do Pilatus and aquarobics weekly. Otherwise, not stretching intervals or lowering Azathioprine - for my grade of weakness 100 mg Azathioprine daily plus 6 - 8 x 400 ml IVIG (72 or 96g Polygam) do the trick - we also do chest Xray and upper abdomen ultrasound twice yearly just to keep an eye on whole system. All systems work very well - Ihave no complaints. Please email me on ttredoux@telkomsa.net if you wish to communicate more frequently. I live in CapeTown, South Africa.
Uncle Bill said:
I started Imuran while I was still getting IVIG. My neurologist said it would take 6 months before I saw any benefit from the Imuran, and I think it was at least that long. But, the IVIG kept me in good shape, while the Imuran gradually took over.
Good luck! I went through some bad times before we got things straightened out. I hope you have as much success as I eventually did.
Bill
I self inject Acthar twice a week along with my bimonthly IVIG. I am still getting worse so tomorrow we are going to talk about adding twice weekly IVIG subcutaneous injections that I will do in the evening.
Sorry but I never heard of ATGRAM.
Hello, I've been diagnosed since 2008. I take Imuran 250mg per day, IVIG,Ogtagam 260mg for 5days every 8 weeks and Prednisone 10mg per day. My neurologist is trying to wean me off the prednisone. So for the last 3 days I'm on 5 mg for one month then 2.5 for a month then off completely. Imuran is partly what caused Robin Roberts cancer so my doctors are closely monitoring my red blood cells. I've had bacterial menigitis from the IVIG called Gamagard. However, all in all my flare-up are getting worse... So we will see.
Hello All, my neurologist tapered my Prednisone then took me off. Big mistake. My body has been on Prednisone since 2008. I felt terrible, arthritic pain and I could hardly walk without help. I was pitiful. He place me back on 20mg per day. But, now I have not had a treatment since February cause my INR levels are out of whack and I have a port. So my neurologist want to wait until I'm therapeutic. In the meantime I'm suffering. Not in remission. smh tired :-(
Hi ATGAM, I take IVIG Octagam every 8 weeks for 5 days straight. I'm also taking 20mg of prednisone, 200mg imuran for CIDP. As of today, my neurologist prescribed 50mg of Tramadol for pain. Thank God! I'm also taking blood pressure, Type II diabetes, antidepressant, cholesterol lowering meds and blood thinners. When taking imuran or any immunosuppressant meds we really need to be mindful of viruses and colds/flu. My neurologist does not want me to take flu shots.
Good luck
My daughter has done Atgam. So far it is working well.