Steroid sparing agents

[Janeval]

Could anyone tell me more about Steroid sparing agents please? I have read about Methotrexate and Tocilizumab (?) but not really sure when or if I would go on them ( I was only diagnosed with GCA at the end of January) - also, side effects etc? I see my Rheumatologist next Monday and want to armed with as much info as I can before he starts overwhelming me with medical info. Thank you all.

[susieb627]

hi Janeval, soo sorry you have GCA. I was diagnosed January 2022. I am still on steroids but currently on 15mg and slowly tapering. I started at 60mg. My rheumatologist keen to get me off steroids ( she says she doesn’t like people to be in the,more than 9-10 months due to impact on body) I tried taking methotrexate orally in December but got really bad mouth sores so had to stop. Now waiting for prescription to have by injection. My understanding is Methotrexate will help me come off steroids. It does have side effects but apparently easier to identify and treat than those from steroids. It seems to me it is all a big juggling act and different for ea h of us. Good luck with your appointment

[DorsetLady PMRGCAuk volunteer in reply to susieb627]

My rheumatologist keen to get me off steroids ( she says she doesn’t like people to be in the,more than 9-10 months due to impact on body)

That's all very well, but uncontrolled inflammation can cause your body a lot of harm...and that's without adding in the risk that in the case of uncontrolled GCA it could lead to sight loss...MTX will do diddly squat in that instance.

[PMRpro Ambassador]

Top experts in the field are of the opinion that MTX has little role to play in GCA and it isn't even inflalible in PMR. It MAY help SOME patients get to a lower dose of pred, a very few even manage to get off altogether, but they are the exceptions rather than the rule.

I don't mind doctors suggesting patients try it - I do mind that many present it is the perfect answer and tell patients it will get them off pred. If it were that good, steroids would not be the mainstay of management of GCA and PMR, GCA and PMR are NOT the same as inflammatory arthritis and MTX isn't infallible there either.

Actemra/tocilizumab is more reliable for GCA but it doesn't cure anything either and only gets half og GCA patients off pred altogether, half have inflammation due to other causes than IL-6 and TCZ doesn't work for them, pred is still needed for the half of patients that involves. In the UK, TCZ is only available for 12 months and after that you are on your own with pred or some doctors try MTX - which also doesn't always work there. I think it is better to to try to get the dose of pred down first - it is relatively easier at the high doses and "save" TCZ for if you get stuck later. I'm on TCZ for PMR (I don't live in the UK) and the pred dose is much lower but I'm still struggling to get below below 8mg.

[Janeval]

Thank you - very useful to know. At least now I'm armed with some good information instead of going into see my Rheumatologist with no knowledge.

[Janeval]

I saw my Rheumatologist on Monday & I have to say, he barely asked me anything, didn't give me the results of blood tests, CT scans etc until I asked & spent most of his time dictating a letter about my case. I told him about the fact that I'd had to increase from 20 - 25mg a week before as I had started getting pains in my head again. He then told me to stay on 25mg for another month, then drop to 20mg for a month, then 15mg for a month by which time I would see him again. I asked about decreasing slower - I.e. 2.5mg at a time & he just said no need to! I also asked about how often j should have blood tests & he gave me a blood form to be done when I see him in 3 months. As I was only diagnosed at the end of January I do not feel happy about waiting 3 months for another blood test, or tapering by 5mg at a time. Up to this point I have had no explanation of what the condition is, what a flare or relapse is or in fact any information atall. I really felt that when he saw me this week that I'm just another person to see. I asked him about my anxiety, stress & family issues I have at the moment (which I know are really affecting me) & about the amitriptyline I have been taking (as I am having dreadful palpitations & panicky moments) & some other medication - Mitrazipine (which I don't want to take) that my Doc prescribed & he just fobbed me off, saying no, you don't want to be taking any of those. I asked him what he could suggest & he just didn't respond atall! Please note that normally I don't take any medication atall if I can avoid it, so for me to be taking something to calm me down & help me sleep means that I actually am in a bad enough place to need it!

I'm going to see my GP (not seen this one before) this afternoon but I just feel totally ' at sea' with all this, being told different 'tapering' each time I go to the hospital & really not knowing what's what.

Is there anyone else in Lincolnshire with GCA & if so, I would be really interested to see which Consultant they are under & if they feel confident with them?

[DorsetLady PMRGCAuk volunteer in reply to Janeval]

Well that was a complete waste of your time...think you definitely to get your GP surgery onside, although if they have received his letter that may be difficult.

As for another Rheumy- suggest you raise new post to ask the question - so all get notification. they won't see it on here unless they have saved this post - and PMRpro & I are the only ones they do that with all posts.

[PMRpro Ambassador in reply to Janeval]

Obviously someone who has not learned the difference between want and need ,,,

When you see your GP, whoever it is, if they HAVE received the letter - which i doubt if you get in quickly - tell them what you have told us.