Questions about Methotrexate – help!
AnonymousDecember 28, 2009 at 10:30 pm
My husband (52) has been diagnosed with CIDP for almost two years now. He has had good results with IVIG every 6-8 weeks. He is receiving treatments at the VA and the “doctor of the month” has suggested he start Methotrexate to try and extend the time between IVIG treatments. She prescribed 2.5mg/week. Because he never sees the same doctor twice it is hard to understand their plan. They have said nothing about increasing the dose over time, taking folic acid, monitoring liver enzymes or any of the other tests that are common to other Methotrexate treatments. I am wondering if any of you have had any luck with Methotrexate and if so what dose schedule are you on and what tests and supplements are suggested. I’m wondering if there is any benefit to taking Methotrexate or if they are just looking for something cheaper that IVIG. Any input is greatly appreciated.
December 29, 2009 at 2:46 pm
In my opinion, you hit the nail dead on the head………..It is cheaper. Sort term only, as the lasting permanent side affects are far more costly than ivig. Your husbands schedule of 6-8 weeks is far apart, that alone is saving money. Studies suggest that the frequency is more important than the quantity. So if they are interested in cutting cost, perhaps they could do a load (2g/kg) and then in 4 weeks follow upw/another treatment redicing slowly and increasing the time in between. My son went from 140g monthly to 35g every two weeks (works out to 70 monthly) and now we are after 3 years going to start a slow wean to nothing over the next 7 months. I do not know if your husband experiences feeling sick after the 6-8 week schedule w/all of the ivig at once, but if so, breaking it up helps. my son would be sick for 4 days after, once we split it up, he never got sick. Good luck, and thank you for your service (VA hospital)!
Dawn Kevies mom
AnonymousDecember 30, 2009 at 12:06 am
I just went for a 3rd opinion and this neuromuscular specialist said Methotraxate to him didn’t work. I was on it for 18 months myself and it takes at least that long to kick in. It made me tired and my mouth tasted like metal.
I find out from a neighbor about prescription Folic Acid as it was usually taken with these type of drugs.I had regular blood tests too.
Stopped it last year as when we increased the dose my mouth broke out in awful sores.
I was started on it as my CIDP was so bad/trying to make me feel better/possible go longer between infusions but still doing 6 a month.
AnonymousDecember 30, 2009 at 10:00 am
If IVIG is working then I see no reason to add the Methotrexate. I had an immunologist suggest putting my then 5 year old on it. We never went back to him.
6-8 weeks between treatments is a considerable amount of time. Does he start to experience symptoms before he gets a treatment? If so, then the treatments are too far apart.
If it were me, I would stick with the IVIG & ask for the dr’s to come up with a plan TOGETHER! While one dr may think something is a good idea 5 other dr’s could disagree.
AnonymousDecember 30, 2009 at 1:21 pm
Hi, my three your old daughter was on methotrexate and she about died from it. She lost her appetite and would not even eat candy. She got down to less than 26 pounds. We gave her weekly injections of it as they said that it could burn your esophagus if taken orally. They encouraged us to take 400mcg of folic acid to help with side affects and they checked her liver and kidneys every 6 weeks and they were elavated once and they were considering taking her off and then we started going to her current doctor and he had a very strong reaction and said that he would not give methotrexate to his dog. He IS an expert on cidp and has published on the subject. I also found an article that was published about 8 months ago about a research project that they did on methotrexate and cidp and found that it did not help. Please google around and look for that. I printed it and gave it to our old neurologist and he just raised his eyebrows. Thank you Lord for good doctors as they are few and far between. Send me a message if you have any questions or if you cannot find it.
AnonymousDecember 30, 2009 at 7:24 pm
If your husband’s CIDP is well controlled with IVIg every 6 to 8 weeks, then there is little reason to add methotrexate. The Peripheral Nerve Society suggests using either corticosteroids (e.g., prednisone) or IVIg as the first line treatment. If that treatment works, taper the dose or frequency to the lowest effective dose. If that dose is still high, a combination treatment, such adding an immunosuppressant, should be considered. A dose of about 0.5 g IVIg per kilogram of body weight at 6 to 8 week intervals would not be considered high. Even if he were getting 1 g/kg every 4 weeks, my impression is that most doctors familiar with CIDP would not consider that dose as “high.”
Godspeed in your treatment options,
AnonymousDecember 31, 2009 at 11:53 pm
I will not argue for methotrexate, but I think it is important to state that the real reason to do this type of immunosuppressant therapy (if done right) is that it is an attempt to “reset” the immune system–in the strongest words to make a cure. Immunoglobulin and plasmapheresis really address the symptoms of the disease, not the disease itself. Chemotherapy drugs, rituxan, stem cell transplant all try to affect the cells that cause inflammation. So it is understandable to try to do this. The problem is that no one knows how it is best to do it because the disease is different in different people and it is hard to know precisely how the underlying disease is affected rather than the inflammatory manifestations and symptoms of it.
In the study that was done before and mentioned by Selahsmom, Methotrexate did not work to lower the dose of IV IgG used, but the arguements made were that the dose of methotrexate (a maximum dose of 15 after an eight week dose escalation) was low for other immune diseases and that the duration of therapy was too short (total therapy of only 40 weeks, 32 weeks being at the “maximum” dose) to see an effect. Also the criteria for “working” was not so good as seem in a high number of “responses” in the placebo arm–probably an indication of the complexity and waxing/waning of CIDP and of difficulty in setting a mark for response (since it is hard to distinguish what is ongoing disease and what is previous damage). So the conclusion was that methetrexate might work, but that it needs a differently designed study to determine this–particularly with more important ways to say if it worked.
Regarding dosing, 2.5 mg of methotrexate is a tiny, tiny dose. Tiny babies with leukemia get a much higher dose. For the older teens with leukemia that I help to care for where I work, many get up to 20 pills a week (up to 50 mg) along with other chemotherapy. The smallest dose for an immune system disease that I saw was 7.5 mg/week. Methotrexate works through the folic acid pathway. Giving folic acid helps reduce toxicity, but it also reduces efficacy (by reversing the effect of methotrexate). Because cancer is fatal if not well treated, oncologists never give folic acid with methotrexate. Rheumatologic illnesses are not as life-threatening and so rheumatologists may give folic acid with methotrexate to limit side effects, but it also limits the chance of the medicine working since you are giving the active agent and its reversal agent together. Anyone getting weekly methotrexate should have periodic liver tests. Your husband’s dose was so small that it should not really affect liver or disease. They may not have checked liver studies because the dose was so small or because the potential additive effect on the liver was not recognized enough.
My suggestion is that you write your questions about the goal of treatment, the plans for dose optimization and for toxicity monitoring and ask that they be addressed and also that you request one person to be your husband’s main neurologist to make a consistent plan and to ensure that this is optimally carried out. Be very emphatic that this needs to happen. Chemotherapy can be very dangerous–it is toxic. It can also be very beneficial, but the doctor ordering it has to be knowledgable about dose and what to what out for. Again, giving too little is bad not so much from toxicity, but because other effective therapy is not being given, more things are being done to the patient, and there may be long term effects even if there are not short term toxicities.
AnonymousJanuary 3, 2010 at 10:20 pm
Thank you for all the responses. My husband (52) does really well with IVIG. He takes it for one day over several hours about once every 6-8 weeks. 7 weeks is optimal and by 9 weeks he’s a mess starting to stumble and go numb again. I don’t know why they want to add methotrexate other than because it’s cheaper. The VA has given him a different doctor for every appointment so it’s hard to know what they are doing. Luckily, we started with a private neurologist and got the diagnosis and the treatment plan before we went to the VA. The IVIG is free through the VA so we want to work with them but I don’t like how he’s tossed from doctor to doctor with no overall plan – we pretty much make our own treatment schedule. We are very fortunate that IVIG works so well for him. I’m hoping it will for years but I’m nervous reading that it quits working sometimes and we’re both concerned about some of the IVIG side effects and the potential for infections from blood-borne pathogens. Maybe we should stop the Methotrexate. I think the dose he’s on is insignificant unless they are planning to scale it up which of course we don’t know. It works very well for my friend with rheumatoid arthritis but that’s a whole different beast. If IVIG were to stop working would you go to Methotrexate or to something else? If something else then what? Has anyone ever had IVIG stop working – go to something else then return to IVIG and have it work again? He has about 24-48 hours of feeling pretty bad. He takes Tylenol, Ibuprophen and Benedryl on a 4 hour cycle for the first day and that helps a lot. His fevers are able to be controlled and if he can sleep for about 12 hours he recovers pretty well. It’s a frightening disease and there isn’t much out there about it. Thanks again for the input. I really appreciate it very much.
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