Hi everyone,
Has anyone had Imuran added to their IVIG treatment.? My son has 3 days of IVIG every 3 weeks bur the CIDP symptoms returnafter 10 days everytime. The thinking is that Imuran might increase the number of symptom free days and eventually the need for such frequent IVIG. However I am feeling concerned about the adding of this drug. [He has tried steroids without success]. Thanks. Brenda
It is quite common to prescribe azothiaprin together with IVIG as a combined treatment. The theory is that it will reduce the required frequency of the IVIG treatments.
Your Doctor will do tests before starting treatment and keep a very close check on your son because reaction to the drug can be very severe but if he tolerates it well it can be a boon.
I personally reacted very badly and could not continue but I am probably amongst the minority group.
Glen
Hi Brenda,
How old is your son and when did he get diagnosed? My son is 19 he was diagnosed July 2012 he has been having IVIG every eight weeks but 5 days every time maybe they can try that because 3 days may not be enough.I'm sorry your son has this I know it's so scary. If he has tingling and numbness in his hands and feet like my son I also give him the neurothopy support formula with the b vitamins and R alpha lipoic acid to lesson the symptoms.
Hope this helps!
Sincerely, Julie
Well, here's my story. I was diagnosed with CIDP in early 2010. My doctor tried Prednisone first, but when that didn't work, he put me on IVIG, every three weeks. That did work, but by the end of each three-week interval, I was getting noticeably weaker again. Also, the short interval made it very hard to plan anything in my life.
After some months of this, he had me start on Imuran (actually, the generic, which is azathiaprine). He explained that it would take six months or so for this to have an effect, and any improvement would come gradually.
Sure enough, after several months, I began to notice that I was still feeling pretty good after the three-week interval, so I stretched it out to four weeks. Again, after a while I was feeling pretty good even after a four week interval. So, I was able to lengthen it to five weeks, then six, then eight, and now I am at a twelve week interval between IVIGs. I have another one scheduled in April, but if I am doing well, I might cancel that one, and see how long I can go.
Now, can I be sure that the Imuran caused the improvement? Not really. The effect was very gradual, and I have heard of other cases in which the CIDP just "burned itself out." Maybe that is happening to me. But, I did talk to another one of my neurologist's patients, who had almost the same experience as me with the Imuran. So, I am inclined to believe that the Imuran is at least contributing to my improvement, and I am not gonna stop it any time soon.
There are at least two issues with Imuran. First, it suppresses the formation of platelets and white blood cells. So, if you start on it, you will have to have regular blood tests, to make sure they don't get dangerously low. My neurologist actually had me see a hematologist to monitor my blood chemistry. My counts fell pretty quickly at first, and I was afraid I would have to stop the Imuran, but they leveled off, and are now stable. The platelet and WBC count levels are lower than "normal," but still acceptable. (Every time I get a routine blood test, my family doctor comments on my low WBC, and I have to remind him of the Imuran.)
The other issue is that Imuran does suppress the immune system, so it makes you more susceptible to infection, and even cancer, especially skin cancer. I have not been sick any more than usual, but I notice that when I get a cold, it hangs around for a long time. And my doctor has warned me to be very careful about sun exposure: use sun block, wear a hat, etc. Fortunately, I am not real fair-skinned, so it's not quite as big an issue for me as for some folks. But, I am a lot more careful than I used to be, and I wash my hands obsessively.
So, my recommendation would be to try the Imuran. Be sure you are monitored carefully, and give it at least a year. If you don't notice an improvement by that time, you could stop.
Whatever you decide, I wish you the best!
Bill
Brenda,
I have had CIDP since 99, but was only dx'd July 2012. I was on 80g Gammunex every three days, now on 60g for four days (I tolerate it just fine, the shift was due to switching from Military medical to VA medical) every four weeks. My symptoms subside by the third day of IVIG (subside, not go away). I had been trying to get my Neuro to add Imuran or Rituxan to my IVIG routine to do just what Bill describes above. CIDP is your Immune System attacking the myelin sheath of your peripheral nerves, ergo, you depress the Immune System, the IVIG works better, your symptoms improve. My last Neuro wouldn't touch Immuran/Rituxan without my being watched by an Oncologist or Hematologist. The new Neuro would prefer to have a Neuro-Muscular specialist look over my case before changing anything... so for now I still get three weeks of minimal symptoms before the week long slide until the next IVIG. I wish I had the Neuro Bill has, I would LOVE to be able to live nearly symptom free for 12 weeks!
David Q
My neuro put in on imuran when I first diagnosed. I was on it for about 2 months and lost 10 pounds. I was nauseated the whole time and had no appetite. She switched me over to celcept. I do so much better on that except I still don't have much of an appetite, but I don't have the nausea. I had problems with the infusions lasting when I was getting 2 infusions over 2 days every 2 weeks. They would last about 10 days. When I went back in I would be using a cane or walker. She changed my order for the infusion, so now I get both doses on one day instead of two. That works really well for me. I get one 6 hour infusion with a full dose every 3 weeks. We are all different and all seem to react differently to these treatments. I think often it is trial and error to find the best treatment for each person.
I have been on IVIg now every 3 weeks for 2 days for a year after my dx last January. I was exactly the same with the 10 day relapse. The IVIg would just seem to halt the progression for about 10 days then I’d be on a downward slide. Recently, I’ve been able to make it a bit longer. My neuro says it can take some time to transition away from the really active disease process if it was bad at dx like mine was. I’m able to go about 15 days now and have seen gains looking at the big picture, but am nowhere near to my physical condition before onset. How long has he been receiving treatment? Hang in there!
Brenda
My daughter has gone to plasmaphersis every three weeks, it is helping for longer then IVIG ever did. The steroids made her her very sick and coucou too went off those after a month.
Jen
Daisy,
Glad that you found relief! I just need a Neuro willing to go out on a limb for me!!! I have talked to people on FB who have had different success on different products. You hit the nail on the head, it's a lot of trial & error.
Big Daddy Qberry
Daisy said:
My neuro put in on imuran when I first diagnosed. I was on it for about 2 months and lost 10 pounds. I was nauseated the whole time and had no appetite. She switched me over to celcept. I do so much better on that except I still don't have much of an appetite, but I don't have the nausea. I had problems with the infusions lasting when I was getting 2 infusions over 2 days every 2 weeks. They would last about 10 days. When I went back in I would be using a cane or walker. She changed my order for the infusion, so now I get both doses on one day instead of two. That works really well for me. I get one 6 hour infusion with a full dose every 3 weeks. We are all different and all seem to react differently to these treatments. I think often it is trial and error to find the best treatment for each person.
Thank you for this. This has helped me feel more reassured. It is so difficult to know what to do for the best with this condition.
Uncle Bill said:
Well, here's my story. I was diagnosed with CIDP in early 2010. My doctor tried Prednisone first, but when that didn't work, he put me on IVIG, every three weeks. That did work, but by the end of each three-week interval, I was getting noticeably weaker again. Also, the short interval made it very hard to plan anything in my life.
After some months of this, he had me start on Imuran (actually, the generic, which is azathiaprine). He explained that it would take six months or so for this to have an effect, and any improvement would come gradually.
Sure enough, after several months, I began to notice that I was still feeling pretty good after the three-week interval, so I stretched it out to four weeks. Again, after a while I was feeling pretty good even after a four week interval. So, I was able to lengthen it to five weeks, then six, then eight, and now I am at a twelve week interval between IVIGs. I have another one scheduled in April, but if I am doing well, I might cancel that one, and see how long I can go.
Now, can I be sure that the Imuran caused the improvement? Not really. The effect was very gradual, and I have heard of other cases in which the CIDP just "burned itself out." Maybe that is happening to me. But, I did talk to another one of my neurologist's patients, who had almost the same experience as me with the Imuran. So, I am inclined to believe that the Imuran is at least contributing to my improvement, and I am not gonna stop it any time soon.
There are at least two issues with Imuran. First, it suppresses the formation of platelets and white blood cells. So, if you start on it, you will have to have regular blood tests, to make sure they don't get dangerously low. My neurologist actually had me see a hematologist to monitor my blood chemistry. My counts fell pretty quickly at first, and I was afraid I would have to stop the Imuran, but they leveled off, and are now stable. The platelet and WBC count levels are lower than "normal," but still acceptable. (Every time I get a routine blood test, my family doctor comments on my low WBC, and I have to remind him of the Imuran.)
The other issue is that Imuran does suppress the immune system, so it makes you more susceptible to infection, and even cancer, especially skin cancer. I have not been sick any more than usual, but I notice that when I get a cold, it hangs around for a long time. And my doctor has warned me to be very careful about sun exposure: use sun block, wear a hat, etc. Fortunately, I am not real fair-skinned, so it's not quite as big an issue for me as for some folks. But, I am a lot more careful than I used to be, and I wash my hands obsessively.
So, my recommendation would be to try the Imuran. Be sure you are monitored carefully, and give it at least a year. If you don't notice an improvement by that time, you could stop.
Whatever you decide, I wish you the best!
Bill
Thank you Glen
Glen Merryweather said:
It is quite common to prescribe azothiaprin together with IVIG as a combined treatment. The theory is that it will reduce the required frequency of the IVIG treatments.
Your Doctor will do tests before starting treatment and keep a very close check on your son because reaction to the drug can be very severe but if he tolerates it well it can be a boon.
I personally reacted very badly and could not continue but I am probably amongst the minority group.
Glen
Thankyou Julie. My son is 28 years old. He was having five days every 3 weeks and they have gradually reduced the number of days to three days every 3 weeks. His symptoms are cleared by the IVIG but return after 10 days and they are hoping that the Imuran will extend this. He has tingling pain and weakness in his arms and legs. I am sorry to hear your son has this baffling condition. Thanks for the tip about the support formula.
Julie McLaughlin said:
Hi Brenda,
How old is your son and when did he get diagnosed? My son is 19 he was diagnosed July 2012 he has been having IVIG every eight weeks but 5 days every time maybe they can try that because 3 days may not be enough.I'm sorry your son has this I know it's so scary. If he has tingling and numbness in his hands and feet like my son I also give him the neurothopy support formula with the b vitamins and R alpha lipoic acid to lesson the symptoms.
Hope this helps!
Sincerely, Julie
Thanks for this.
Big Daddy Qberry said:
Brenda,
I have had CIDP since 99, but was only dx'd July 2012. I was on 80g Gammunex every three days, now on 60g for four days (I tolerate it just fine, the shift was due to switching from Military medical to VA medical) every four weeks. My symptoms subside by the third day of IVIG (subside, not go away). I had been trying to get my Neuro to add Imuran or Rituxan to my IVIG routine to do just what Bill describes above. CIDP is your Immune System attacking the myelin sheath of your peripheral nerves, ergo, you depress the Immune System, the IVIG works better, your symptoms improve. My last Neuro wouldn't touch Immuran/Rituxan without my being watched by an Oncologist or Hematologist. The new Neuro would prefer to have a Neuro-Muscular specialist look over my case before changing anything... so for now I still get three weeks of minimal symptoms before the week long slide until the next IVIG. I wish I had the Neuro Bill has, I would LOVE to be able to live nearly symptom free for 12 weeks!
David Q
Thanks Daisy. Cellcept was also mentioned as a possibility.
Daisy said:
My neuro put in on imuran when I first diagnosed. I was on it for about 2 months and lost 10 pounds. I was nauseated the whole time and had no appetite. She switched me over to celcept. I do so much better on that except I still don't have much of an appetite, but I don't have the nausea. I had problems with the infusions lasting when I was getting 2 infusions over 2 days every 2 weeks. They would last about 10 days. When I went back in I would be using a cane or walker. She changed my order for the infusion, so now I get both doses on one day instead of two. That works really well for me. I get one 6 hour infusion with a full dose every 3 weeks. We are all different and all seem to react differently to these treatments. I think often it is trial and error to find the best treatment for each person.
Hi manderine, He was diagnosed in January 2012. I think the Neuro is keen to extend the time between the IVIG treatments. The Imuran dicision is such a difficult one to make as it is so difficult to know what to do for the best.
Thanks for your response
manderine said:
I have been on IVIg now every 3 weeks for 2 days for a year after my dx last January. I was exactly the same with the 10 day relapse. The IVIg would just seem to halt the progression for about 10 days then I'd be on a downward slide. Recently, I've been able to make it a bit longer. My neuro says it can take some time to transition away from the really active disease process if it was bad at dx like mine was. I'm able to go about 15 days now and have seen gains looking at the big picture, but am nowhere near to my physical condition before onset. How long has he been receiving treatment? Hang in there!
Yes steroids did nothing for my son. Plasmaphersis has not been suggested but I will ask.
Momtosix said:
Brenda
My daughter has gone to plasmaphersis every three weeks, it is helping for longer then IVIG ever did. The steroids made her her very sick and coucou too went off those after a month.
Jen
I should have mentioned that Imuran does tend to upset your stomach. In my case, it's not terrible, but it does tend to make me a bit nauseated for a short while. It doesn't seem to matter when you take it, so I take it right before bedtime, and generally sleep through any upset.
When it looked like my platelets might get too low due to the Imuran, my neurologist mentioned the possibility of switching to Cellcept. But, he said Imuran has been used more, and so has more of a positive track record. And as it turned out, I was able to stick with it.
Best luck to all,
Bill
Daisy said:
My neuro put in on imuran when I first diagnosed. I was on it for about 2 months and lost 10 pounds. I was nauseated the whole time and had no appetite. She switched me over to celcept. I do so much better on that except I still don't have much of an appetite, but I don't have the nausea. I had problems with the infusions lasting when I was getting 2 infusions over 2 days every 2 weeks. They would last about 10 days. When I went back in I would be using a cane or walker. She changed my order for the infusion, so now I get both doses on one day instead of two. That works really well for me. I get one 6 hour infusion with a full dose every 3 weeks. We are all different and all seem to react differently to these treatments. I think often it is trial and error to find the best treatment for each person.