Sarcoidosis or Methotrexate treatment

[sjm123]

Hi,

I've recently been diagnosed with sarcoidosis, though they suspect something else in addition hence a million and one tests all the time at the moment.

I'm still not really quite clear on what this means tbh. I know I have granulomas on my heart and lungs, but all I managed to take in is that it's not cancer. That means it's not too bad yeah?

I've been put on Methotrexate injections weekly, along with prednisone (spellings are probably all wrong, apologies) and high dose folic acid.

Honestly, I don't really know what's going on. I have no support, no family, no real friends and nobody to take with me to appointments to help with it all and it's all going in one ear and out the other and completely overwhelming me. I suffer with quite severe depression and and in treatment for PTSD too, so I'm already a bit of a useless mess.

I've had breast cancer in the past (almost 20 years ago), and I'm in a mess at the moment after a long term relationship breakup and I'm kind of terrified and not coping well with all this. I feel I'm utterly useless to my children (10 and 12) at the moment too because I'm so freaked out by it all. I've been trying to ignore it and hope it all goes away, which I realise is not really healthy but I don't really know what else to do.

Any experience from anyone at all would be really, really helpful. Google searches don't show much on methotrexate treatment for sarcoidosis, and all I can get is that heart involvement is a bit bad.

Sorry for going on.

hi sjm i had alot of symptoms with joints ,flushing,bowel pain a few years ago and had to do the urine test to test for sarcoid. My consultant suspected it at the time. Ten years down the line i am still having tests for all types off auto immune problems. Was your 24 urine test positive.
Methotrexate is used in allot of AI diseases just to down regulate the auto immune response. Have you previously had steroids or have they put you straight on the metho.

there may be a reason why doc has decided to give you methotrexate rather than steroids. personally i think methotrexate is preferable to steroids because of the steroid side efects. I presume you are having regular blood tests whilst you are on the metho. What dose have they put you on and have they given you folic acid to take on the other days.

i have heart problems and have got to have an angiogram. They are now looking at sjogrens as i have very dry eyes lupus,ME,CFS, but i have just had to do that 24 hour urine colection again so i guess they a redoing the sarcoid test. 5H1AA

I have had methotrexate in the past (but for RA) but I think it is similar enough to explain a wee bit about what is going on.

The methotrexate takes a while to work properly, so the prednisolone is a steroid to tide you over until the methotrexate kicks in. Once you have been assessed (probably about 3 months after you started methotrexate), they will reduce and take away the prednisolone or adjust your treatment.

Methotrexate works by interfering with the folate cycle, which affects cells that are replicating really fast - in the case of autoimmune diseases that is the inflammatory cells (which in sarcoidosis are clustering to form granulomas/lumps where there shouldn't be any) but it is also why you cannot get pregnant on methotrexate as an embryo is fast dividing. The high dose folic acid is to stop the side effects really.

So imaging that your immune system is a car that has got out of control - the methotrexate is effectively the brake and the folic acid a gentle acceleration because you can't afford to be completely stopped.

It is all part of the same, well understood and commonly used, treatment and not as scary as it first seems, your body will settle down as the treatment progresses and coming off the prednisolone should make you feel less stressed. If you have any questions, let me know and I will do my best to help.

Prolonged treatment with MTX may also lead to folic acid deficiency. To reduce the risk of these side effects, without fear of interfering with its efficacy, a maximum daily dose of 5mg of folic acid is recommended for those patients taking MTX on a regular weekly basis. if you dont have enough folic acid you will become anaemic