IVIG & methotrexate

    • February 2, 2011 at 7:34 pm

      Hi folks

      My Neurologist has just added Methotrexate 7.5mg 1/day/wk to my existing IVIG treatment.
      I had my first symptoms in May 2009 and after many ups and downs as you have all experienced I was diagnosed in August 2010.
      High protein in CSF;
      NCS showed R & L sural & Left common peroneal responses were unrecordable, & the Motor velocities normal for age &;
      I have no deep tendon reflex
      Dr says I have predominantly Sensory & Autonomic CIDP but says no one gets away with no motor problems. Other than the extreme fatigue it’s the autonomic symptoms that cause me the most heart ache.

      I’ve been on .4g/kg every second week for 6month after a 5 day loading dose.
      This had controlled most of the symptoms except for the fatigue & constant dizziness. About 8 weeks ago I started to have spikes in BP & increased dizziness to the point of collapse sitting or standing.
      So Dr has just added a Methotrexate & folic acid combination. I will of course continue with IVIG (I am so lucky that we do not have trouble with the cost/supply in Australia).

      I have looked through the Forum and Googled for research papers but have not found any worthwhile information.

      Has anyone out there had any experience/information on this treatment combination.

      Regards Tim

    • Anonymous
      February 3, 2011 at 12:46 pm

      There is at least one clinical trial to evaluate folic Acid for these conditions.

      Regarding Methotrexate, formerly amethopterin, I found this on a web search:

      “Intracellular (initiation) Antimetabolites

      purine synthesis inhibitor: Azathioprine • Mycophenolic acid

      pyrimidine synthesis inhibitor: Leflunomide • Teriflunomide

      antifolate: Methotrexate”

      As you noted, others on this site have indicated taking Methotrexate. As an Intracellular Antimetabolite, it is in the the same class as my med Azathiporine (Imuran).

      As I understand my doctor’s plan, the idea is to use these meds to ‘knock down’ the immune system with the ultimate goal of improvement concurrent with weaning of IVIG.

    • Anonymous
      February 3, 2011 at 2:51 pm

      Hello! I have had CIDP for 5 years and have only been treated with IVIg. I receive 90g every 7th week. I receive 30g per visit ever other day. I take 90 g of Cymbalta each day for the nerve pain.

      I was recently dx with rheumatoid arthritis. The meeds for RA collide with CIDP and the side effects are demeylinating diseases. So, the first rheumatologist has put me on 5mg of mtx. I have been on it for six months. I am 5’6″ 130 female. I too have permanent nerve damage in both feet and hands. My reflexes wax and wane.

      Since I have been on the mtx my CIDP symptoms are much worse. To the point where over Christmas I had to have two extra doses of IVIg. I was put on pain patches for a couple of weeks so I could walk. That is the first time I have been that close to not being able to walk. NOW, bear in mind, I have a nasty secondary disease that I am battling, so can my experience be helpful? I don’t know.

      My neuro did say when my rheum put me on the mtx that it should help because hr uses it on his MS patients, but never had with his CIDP patients.He of course is curious that my symptoms have worsened since. Like I said could be the RA. My neuro always tells me that I am the best person to tell him what is going on with my body.

      Learn to get in tune with your body. You will know if the mtx is working for you or not. Everything works differently for different people.

      Good Luck!


    • Anonymous
      February 3, 2011 at 2:55 pm

      The Folic Acid is common with mtx. Keeps the Thrush, yeast infections, etc. away. Take this faithfully everyday!

    • Anonymous
      February 3, 2011 at 4:27 pm

      jfox, Thanks for your reply. btw (by the way) 7 weeks apart for IVIG seems far apart to also have worsening symptoms. Initially, at Mayo, for a maintenance dose they put me on 2 times per week….

      Thrush was a new term for me. No longer, I looked it up. A Cleveland Clinic website says:

      “Thrush Thrush is an infection of the mouth caused by the Candida fungus, also known as yeast. Candida infection is not limited to the mouth; It can occur in other parts of the body as well, causing diaper rash in infants or vaginal yeast infections in women.

      Cleveland Clinic has an interesting article talking about “However, certain illnesses, stress, or medications can disturb the delicate balance, causing the fungus Candida to grow out of control, causing infection”

      here: [url]http://my.clevelandclinic.org/disorders/thrush/childrens_overview.aspx[/url]

      Welcome all to the discussion on other threads about wheat gluten and Candida!

    • February 3, 2011 at 9:30 pm

      Many thanks for information,

      Dr has not suggested cutting back on IVIG. He said if I had bad reactions that he would drop me in hospital for 3 days and go the Pulse IV Methylprednisolone road.

      I’ve only had one dose of MTX so far with no bad effects . I go back to Dr in 3 month for evaluation if nothing goes tail up.

      Just as an aside, is MTX referred to as an immunosuppressant therapy or chemo – or are they one and the same thing.


    • Anonymous
      February 4, 2011 at 11:39 am

      [QUOTE=mceagle]Many thanks for information,…Just as an aside, is MTX referred to as an immunosuppressant therapy or chemo – or are they one and the same thing.Tim[/QUOTE]

      Tell ya’ what- I dunno. How’s this quote: ” Methotrexate say: meth-oh-TREX-ate Methotrexate is a chemotherapy drug used to treat leukemia, lymphomas, and osteosarcoma. It is also used in the treatment of AIDS and rheumatoid arthritis, which is of interest because you can find information on this drug on the Web at sites relevant to these diseases as well as cancer sites.”

      I couldn’t say if the previous site ([url]http://www.acor.org/ped-onc/treatment/methotrexate/methotrx.html[/url]) is particularly trustworthy or not since it is my first visit to it.

      On the other hand, I do take note of publications within the PubMed.gov universe. [url]http://www.ncbi.nlm.nih.gov/pubmed/18493241[/url] which says, among other things:

      “In chronic autoimmune conditions such as myasthenia gravis (MG), immunosuppression–usually long-term–is often necessary. The mechanisms of action of immunosuppressant drugs in MG fall into three main categories: inhibition of the cell cycle (azathioprine, cyclophosphamide, methotrexate and mycophenolate mofetil), immunosuppression of T cells (steroids, ciclosporin and tacrolimus), and B-cell depletion (rituximab).”

      The short answer, then is Yes, MTX is immunosupression via chemo therapy. So, as you queried- they are one and the same thing.

    • Anonymous
      February 4, 2011 at 2:10 pm

      I have to agree with you because everything I have read states the same thing. It is both. I am currently on 12.5 mg of mtx with 90g of IVIg. I have CIDP and RA so my body is dealing with two miserable diseases. I wasn’t put on the mtx until I was dx with RA. Since that time my CIDP symptoms have increased. Again, I also have rheumatoid arthritis now, so who knows the how and why.

    • Anonymous
      February 5, 2011 at 10:28 am

      I was on Methotrexate for 18 months hoping it would help with my CIDP and IVIG frequency. It didn’t help and caused worsening fatigue so I stopped it after consulting with neurologist.

      There is a controversy whether Methotrexate helps with CIDP.
      Wasn’t there a recent GBS/CIDP conference that discussed this at length??