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Methotrexate for lupus/RA etc...Just been prescribed it and I'm scared witless

53 replies

LackaDAISYcal · 08/05/2014 17:56

Not least of all because they have told me to stop drinking my beloved Wine

It sounds like it can have some nasty side effects, but are they worth it for a pain free existence. I've been on plaquenil till now, but at my clinic today they have said my fingers and toes are horribly inflamed and I have bursitis in several joints. I've been having regular depo-medrol injections, but they think that if I am relying on them to give me relief then the plaquenil isn't working as it should and it's time for something stronger.

Anyone with any experience?

OP posts:
LackaDAISYcal · 10/05/2014 11:32

It is marsy; they are generally fab, but the clinics can run a bit late...especially on the second Thursday of every month as they run four separate clinics together! Yes, would be great to meet up :)

Well, first dose down the hatch. I am trying to keep busy and not to sit and wait for the side effects to happen Grin I was going to take them tomorrow, but DH has told me off for procrastinating/putting it off.

Interesting about the VitD level Random, they never mentioned it, but I am prescribed Cacit-D, so maybe they are happy with it. I must remember and take the Cacit-D as I always forget them Blush I need my pills in a dosset box like my old ducks at work have!

No worries about pregnancy wonky, I had a hysterectomy five weeks ago!

I didn't know it was World Lupus Day Blush I used to be on lots of forums etc around my dx three years ago, but I just kind of get on with it now.
Beyond, the registrar I saw said that the reason they wanted me on the metho is that I still felt ill on the hydroxychloroquine and the aim of treatment is to make one well. So, I presume the same applies for the metho; if your side effects are worse than the original symptoms of your disease, then what's the point in taking it? I'd see if you can make an appointment to discuss it; there seems to be lots of combinations of drugs and treatments out there and it's a case of finding the one that works best for you.

Re you and your friend; I reckon there are more people with lupus and similar illnesses than we know about; mine was always there in the background, but didn't really kick off until after I had my third child. and lots of people challk symptoms up to tiredness, life, stress etc so don't necessarily seek help.

And as an aside, I find that my acceptance levels of my illness and associated pain are much higher than when I was first diagnosed. I am less likely to take time off work now than I was three years ago, and kind of just get on with it, regardless of how bad I feel. I rarely even mention it to family and friends as well; partly not wanting to be a whinger, but partly because people just don't understand it, and tell me how well I look when I feel like curling up and sleeping for a week and am aching with every fibre of my being, so I think What's the point?

Anyhoo, off to spread the word about Lupus Awareness Smile

Hope everyone is having a pain and fatigue free weekend xx

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ROUNDandROUNDINCIRCILESMORETHA · 10/05/2014 19:44

I have been on methotrexate.i really hope it works for you i did not like it and havent
Been on it since. Was also on folic acid with it.

LackaDAISYcal · 11/05/2014 12:02

Well so far so not so bad! Feel a bit queasy and tired, but that could be more a symptom of the flare up I've been having. The steroids have kicked in nicely though so the inflammation has calmed right down and my pain is much better (isn't it amazing what we put up with as normal, until it's not there and you realise it wasn't normal at all?)

I suspect the side effects may be cumulative though and it'll be worse next weekend?

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