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RA & steroids

(9 Posts)
Aftereightsaremine Sat 17-Sep-11 07:09:28

I have RA & Sjogrens I have been taking plaquenil for years. Last October I was prescribed prednisolene & in April methotrexate. Things have improved though obviously I still have bad days especially if I am tired.

Dh really wants me to come off the steroids as I have been having facial pain since November & he is convinced it is side effect of steroids though neurologist says facial variant migraine.

However I am really scared the pain will get unbearable again.

Has anyone had experience of any of this? Seeing rheumatologist in 2 weeks so want to be prepared in advance.

merryberry Sat 17-Sep-11 07:20:14

What kind of facial pain? Have they checked your jaw joints - it might be RA in those. When I had that, mine radiated up my nose, across my eye. My god, it was grim. Spent nights on my knees bent over letting my jaw hang to the floor to try and relieve it.

When I took steroids, I only ever had depots, and while they made me feel rougher than a rough thing, it didn't coincide with the face ache (as I laughingly call it now it's over). But I worked my way off them as fast as I could, as I didn't like the mood alteration, the bloating, the very increased infection rate - far more than I've experienced on MTX and Humira combined.

I would be asking: what's the medium term plan with my treatment in your opinion Dr? How much MTX are you taking? Are you a candidate for the anti-TNFs? How well controlled does the dr think you are? What more can be achieved? It is only my opinion and experience but my opinion and experience is this: if MTX subcutaenously combined with an anti-TNF can put my RA into remission (3.5 years since onset, anti-CCP off the scale on diagnosis i.e. prognosis and onset both severe) then I think it's a shame to be diddling around with the now, for you, ineffective plaquenil and prednisilone.

Aftereightsaremine Sat 17-Sep-11 07:34:34

I had an MRI scan which was clear. I haven't discussed the anti TNFs with my doc but a distant cousin takes humira which she says has changed her life. A friend recommended embrel so I will discuss.

I agree about the mood swings & moon face!

Out of interest I take MTX (7.5mg) Saturday but by Thursday I am usually in pain & need my walking stick. Do you know if this is normal?

nothruroad Sat 17-Sep-11 09:24:43

I agree with merryberry. Ask about anti-TNF. This has absolutely changed my life. nI started on enbrel, when that stopped working as effectively was swapped to humira (which didn't work for me) and am now on infliximab. I have never been as well as I am on these and they don't make me feel unlike myself in the way steroids did.

merryberry Wed 21-Sep-11 16:38:19

Sorry, been terribly busy. Yes, I find that I start to feel the need for the MTX 2 daus before the next dose. You might find relief simply from getting a higher dose of that - it's a low dose - I was started on 10mg orally, but could only tolerate 15 that way. Can manage 17.5 by injection (do these myself). However, I believe that the single most effective long-term treatment regime for RA is proving to be MTX in combination with an anti-TNF. Let us know how you get on x

wonkylegs Wed 21-Sep-11 18:47:51

Steroids should really be a short to medium term solution as long term they can cause problems (personally hated the moon face when I was on them to have DS but there are far worse side effects long term)
There are many treatment solutions out there, I'm not sure if you would qualify for anti tnf yet as you usually have to 'fail' on two dmards. There is plenty of scope for increasing your mtx tho (I'm on 20mgs with humira, tried 25mgs before adding the anti-tnf, but got horrible side effects for no benefit)
Go and discuss your concerns , with your dr and see what they suggest . Some people I know split there mtx dose but it's generally not recommended.
What anti-inflams do you take to support your dmards? as personally getting this changed made a big difference to me too

Aftereightsaremine Wed 21-Sep-11 21:43:22

I've been very achey last few days & didn't tolerate MTX very well this week. Seeing doc mid oct so I am hoping he can review medication. Don't know how much he can alter though as I take aspirin & plavix for antiphospholopid. Part of me thinks what's the point of all this meds when clearly not working!

Aftereightsaremine Wed 21-Sep-11 21:44:32

Antiphospholopid! I think can never remember how to spell it!

wonkylegs Wed 21-Sep-11 22:17:56

It took me many years to find a combination of meds which worked for me. Unfortunately there are no hard and fast rules and what works for one person, may be disastrous for another sad
Speak to your doc, it may just take some more trial and error, don't give up hope.

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