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Psalm 23

Combination IVIG/Mycophenolate ( Cellcept ) treatment anyone ? ?

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With the exception of a one month hold which was required for ARS retesting I have been receiving IVIG for approximately one year. While I have realized significant symptom improvement in some areas in other areas there has been no improvement at all so combination therapy was put out there by my Neurologist as a treatment option. As of today I have started this more aggressive form of treatment and wonder if any other of you with AAN/AAG have gone this route. If so what was your experience like ? Did your condition improve ? Did you deal with any side effect issues from the Mycophenolate ? I have been very fortunate in that I have experienced minimal IVIG side effects so that part of the treatment has not been an issue for me.

Thank you for any responses !

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I don't have any feedback on this kind of treatment, just thought to let you know I'm happy to hear about significant improvement!

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Thank you corina !

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Hi Psalm 23,

I receive IVIG every three weeks for AAG/AAN and it has been life changing- but recently it has not been as effective/I have had debilitating symptoms in some areas (particularly HR/BP control). The next option for me (we think) is to add an immunosuppressant (CellCept) with the IVIG. However, I am not sure how I feel about this.. and being on this type of drug at a young age.. Because of this, we have decided to do a steroid course to see if this is enough to curb me back into more of 'a remission' before lookign at these options. 

I hope everything works out for you, I definitely can understand how hard this can be.. and am here if you want to talk more! 

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Hello ares22,

Thank you so much for sharing ! I'm so sorry to hear that your symptoms have become so debilitating and your IVIG is not as effective as it had previously been. How disappointing. I've read about others experiencing the same thing which has caused me to wonder how long mine will continue to be helpful. I receive my IVIG every other week. I do notice it working less the farther away I am from the day of infusion. I can certainly understand your hesitation with taking Cellcept. It is by far the scariest medication I have ever been on. Thankfully thus far I seem to be tolerating it quite well but of course I have only just begun. The Cellcept starts out at 500mg twice a day for two weeks which will then increase to 1000mg twice a day so hopefully I will be able to tolerate the higher dose as well. Of course the lab results will weigh in heavily with regard to tolerance. Wednesday of next week will begin four weeks of weekly lab draws which then reduces to monthly. I don't believe this is meant to be a long term therapy. I am to return for reevaluation in June. It would seem with this condition that one can't think too far ahead about different treatments implemented and responses although some of the recorded IVIG or PLEX/Immunosuppressant combination therapy results are encouraging.

Thank you. I sure hope you have success with the steroid therapy and don't have to go down the Cellcept path. Thank you for your support and being there !

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It shouldn't be a second line option to add a biologic or immunosuppressive with IVIG it should be done as a first line. Many years back Mayo Clinic published a group of 8 AAG case studies half seropositive and half seronegative and they said the best results came from combining IVIG with a biologic or Plasmapharesis with a biologic. 

As a side note many POTS patients in Australia, Canada and some in America are reporting significant improvement with low doses of just IVIG. This needs to be studied. Many who get the low dose IVIG also report no change or only minor improvement.  If subset of POTS was caused by Autoimmune factors like receptor antibodies then low dose IVIG should not be improving symptoms. If patients are low blood volume then lose doses likewise should not increase volume significantly more than an IV saline bag. So something else is at work here that needs more research..

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I'm curious how the Cellcept went. I was put on it years ago and it put me in the hospital with the most horrible pain I can ever imagine. It was like someone was taking the sharp point of a knife and running it up and down my arms and legs. It took 9 months to go away. Cellcept is now on my list of intolerable agents.

I hope you had a better experience. 

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Hi Rich,

That may not always be the rule though. I think it really depends upon the individual patient, the risk factors of adding in an additional potentially damaging medication and what experiences the Neurologist has had with combination therapies. The article you make mention of is from 2009 and involves a very small pool of patients. I should think that while more recent studies may not be published Mayo Neurologists would share relevant beneficial data with one another. I am a Mayo patient actually.

Hi Kim,

After three months of taking the Cellcept it had to be discontinued because of unacceptable side effects. Primarily persistent GI issues but I also had lesser issues with insomnia, headaches and swollen fingers. I'm sorry you had such a horrible experience with it. How frightening. Where you also taking it for an autoimmunity issue ? Last week I started taking Imuran. So far so good but that's what I said about the first week of taking the Cellcept.

Any other AAN patients out there on an IVIG / Imuran combination therapy ?

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Sorry to hear your Cellcept trial did not work well for you,  It is always so disappointing when you have  high hopes for a treatment and it doesn't work out. 

Doing high dose IVIG and Rituxan currently for this diagnosis.  Hopeful that it is working as I am feeling better than I have in a decade.  But also know there is a waxing/waning pattern to my symptoms so hoping this improvement is due to the treatment and not the normal disease fluctuations. My doc says it can take 4-8 months for the Rituxan to start having beneficial effects.  I'm at 3 months now, but he was also hopeful that the high dose IVIG being done in conjunction with the Rituxan might make the benefits apparent sooner. 

Really hoping the Imuran provides you with further relief! 

Hugs!

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What doctors deal with AAN? So what specialist would I see to do the blood test? 

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Hello and thank you Chaos. It's good to hear from you. Yes. It is very disappointing when a treatment either doesn't help or is not tolerated.

How wonderful that your IVIG / Rituxan combination therapy is helping you. That must be pretty exciting to feel better then you have in a decade. Hopefully it's a result of the treatment and not related to a normal improved disease fluctuation state. I do realize it's a difficult balance between optimism and realism as one doesn't want to set ones self up for disappointment but yet is hopeful for improvement. I do hope as you continue on this combination therapy path your symptoms keep improving.

At this point I am still tolerating the Imuran but am not seeing any further symptom improvement. It was really after 3 months or so of the IVIG that I realized significant symptom improvement in some areas but I haven't been able yet to move on from there. It's still early in the game though so I am hopeful.

Please keep us posted on how you're doing !

 

Hello Sammy Jo and welcome to the forum. In answer to your question you would want to see a Neurologist that specializes in Dysautonomia / dysfunction of the autonomic nervous system. You would not want to see a Neurologist that is only familiar with the central nervous system which I dare say most of them are. This forum has a physician referral list that can guide you. With regard to any relevant labs the Neurologist would be the one to order them as well as all the other relevant diagnostic tests such as an autonomic reflex screen etc. Some lab work such as a paraneoplastic panel may not be available locally but the blood can be sent to a Mayo Clinic lab for processing. These are things to be discussed with the Neurologist you decide to see. Hope this info helps.

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So happy to hear of your improvements but sorry the last medication did not seem to help. I have a friend that is using IVIG and Rituxan combination.  She has been on this combination for awhile. However, she also does a plasma exchange treatment every 3 months to keep lowering the autoimmune antibodies. Eventually, the goal is to stop doing the plasma exchange.  Don't know if this combination would be a possibility for you but thought I should mention it. 

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