How many of you have taken methotrexate?

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firefly16's Mom
Regular Member

Date Joined Sep 2008
Total Posts : 20
   Posted 6/20/2009 7:25 PM (GMT -7)   
  Hi everyone,
      In going over Firefly 16's history I started thinking about the breif time when she was "well".  Gracie's Mom got me in this train of thought. (thanks)  Any way I have read that many of you have taken Plaquenil, but I was wondering if any of you had taken methotrexate.  The brief time that Firefly16 was better she took both.  They are in a class of drugs called DMARDS- and guess what else is mimocycline and cyclosporine.  How many of you have taken these?
      Firefly 16 has a new complication called Chiari 1 malformation.  Also her spinal pressure is twice what it should be.  Since both methotrexate and Plaquenil reduce inflammation I am hoping they will be able to help the spinal pressure.  We see the Neuro in Charlotte, July 7, maybe he will think one of these drugs could help.
       I hope all is going well with everyone,  my prayers go out to all.

Lyme Mom for 10 years, looking forward to a lyme free life for all.

Veteran Member

Date Joined Aug 2007
Total Posts : 4399
   Posted 6/21/2009 3:11 AM (GMT -7)   
Methotrexate suppresses the immune system, so be careful with this medication. I was on it for 6 months and I felt horrible the entire time from the side-effects, and it did nothing to help the underlying cause of my condition (misdiagnosed at that time as Crohn's Disease; now I know it was not Crohn's, it was and still is Lyme).

If methotrexate (MTX) is still the medication of choice, make sure folic acid supplements are also taken - the drug doesn't work without folic acid, and also the folic acid helps cut down on the intensity of the side-effects. I think my problem at the time I was on the MTX is that I wasn't taking enough folic acid. I've seen recommendations as high as 2mg/day - I was only taking 800mcg/day.

Take care,
Chronic Lyme Disease, Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, Pancytopenia, chronic malabsorption/malnutrition, etc.; G-Tube; Currently TPN-dependent.
Meds:  Zofran, Pulmicort, IV Ceftazidime, Heparin (to flush PICC line), Claritin, Colloidal Silver (used topically), probiotics, homeopathy.

firefly16's Mom
Regular Member

Date Joined Sep 2008
Total Posts : 20
   Posted 6/23/2009 8:09 PM (GMT -7)   
Thank you for the reply Razzel,
Firefly 16 also has Chiari 1 malformation with a syrinx as well as Lyme. When she was on MTX she had fewer problems with walking and thinking, it does lower inflamation. However, I have been going through all of her records and she kept a sinus infecton or URI the whole time she was on it.

Thanks again, I hope you are having a "well" day.
Lyme Mom for 10 years, looking forward to a lyme free life for all.

New Member

Date Joined Jun 2011
Total Posts : 3
   Posted 6/16/2011 10:47 AM (GMT -7)   
Now I picked up on this conversation because I believe there may be a direct link with the administering of methotraxate to patients with undiagnosed lyme disease. I was told I have RA and was treated with mtx. I stopped because it was causing side effects. I was encouraged to try it again by my DR. and 3 months into the treatment I had a seizure with no diagnosis but now my spine has pressure all the time, I can pop any spot along my spine and it has become very weak. I have not yet been diagnosed but that is a whole other problem. but the symptoms list reads like my daily journal that reads like every other person in limbo on this. The ILADS strongly recommends against imunnosuprressant drugs and steroids.
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