Opinions please (2)!: Hi I wrote a couple of weeks ago... - NRAS

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Opinions please (2)!

Dobcross1 profile image
12 Replies

Hi I wrote a couple of weeks ago about my ankles being swollen and inability to walk etc, having been on MXT 10mg then 15mg since Jan. This morning had a review (with a Doctor not a nurse - get me!!) he put a steroid injection into each ankle but did not increase MXT or add anything else in. When I queried this he said that they prefer to target specific joints rather than increase medication which appears to be starting to work. I asked about my hands and he said he's still hoping MXT will sort them out as they're not stiff just swollen and painful. So still on 15mg. Does anyone have experience of this approach please. I left wondering if I should have pressed for a MXT increase or whether he is right to give it more time and treat individual problems. Thanks

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Dobcross1
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12 Replies
helixhelix profile image
helixhelix

Well you have only just reached 3 months at 15mg, so there is a logic in what doc says. If you go up in dose then likely that you’ll stay at that level for a fair while, so there’s a risk of over medicating you. By having a steroid jab you should be stopping the inflammation in those joints, and therefore risk of damage. So it’s allowing extra time safely. Give it a few more weeks and if hands don’t improve contact them again.

Dobcross1 profile image
Dobcross1 in reply to helixhelix

Thanks, I really appreciate your reply. What the doctor said did make absolute sense but I was afraid I might have just wimped out as I was a bit concerned about an increase lol!!

pd118 profile image
pd118

I sit on side of tub soak hot water ahhhhhhhhhhhhhh

BonnieT profile image
BonnieT

Trust what he’s saying for now. See how it goes. Each person has different symptoms and a different treatment plan. Who knows what’s going to work. I’m on MTX for just over a year with better mobility than before but not pain free. My ankles swell and go down constantly making walking difficult at times. Weather conditions affect them.

Dobcross1 profile image
Dobcross1 in reply to BonnieT

Thanks, yes I can only try this and see. I know I can always increase MXT if I need to later on... it was just that I hadn't realised (haven't been diagnosed that long) about them treating individual joints as I was told originally that the plan was to 'hit it hard' !! But I dont mind either way as long as I can walk! I hope your ankles are ok at the moment and respond fully in time. Thanks again.

nomoreheels profile image
nomoreheels

Hiya Dobcross1. I've been absent for a few weeks so didn't see your previous post but have caught up from your profile page. I also have swollen ankles (up to my calves & down to my toes) so can appreciate your concerns. That said I'd heed your Rheumy's advice/explanation & not worry too much about your MTX dose being increased just now. As an MTX gal I'd think there's time enough should things worsen generally rather than in specific areas, though of course I hope that won't be the case!

For now the targeted steroid injections should do their good work & the longer you're on 15mg you should see improvements in inflammation generally & in your hands specifically. You've not been on it all that long relatively speaking & I'd see it as the wait & see stage, see how disease activity improves or not before bothering about needing another higher dose. You may have seen others med patterns being such but as no one person is the same it may be yours is quite different. As an example I was on 15mg for at least a year when I first started it & when I did have an increase to 20mg I had issues with side effects so I changed to injections. That caused issues (dose too high when compared to tablets) so the dose was reduced to 15mg which tackled the activity & resolved the side effects. I currently inject 20mg (which I'm tolerating, who knows why except that it's possibly because I've been on it a long time now & it could be my body has built up some resistance to it?) & it's just about holding disease activity, as usual things could be better though!

I do think your Rheumy has a point, he thinks MTX is starting to work... I read that as he considers it hasn't yet reached it's full potential at 15mg. I'd look at it as waiting & seeing, not that he won't increase it if he feels it's necessary in the future or also prescribe another DMARD (double therapy) if need be. Please don't feel as though you wimped out, I see it as helix does, you don't want to be over medicated for the sake of waiting a little longer to see how you respond to your current dose. 😉

Dobcross1 profile image
Dobcross1 in reply to nomoreheels

Thanks so much for your reply NMH. It's so reassuring to hear from others who've been through this and know what the drill is... I sometimes feel I just don't know what to think or whether I'm doing the right things so it's great to get the thoughts of others who've been there. The replies have made me feel so much better and an quite happy now to go with the flow and fingers crossed! I really hope MXT continues to help you especially as you are just about tolerating the higher dose (that was one of my fears about increasing dose!). Thank you again I really appreciate your reply.

nomoreheels profile image
nomoreheels in reply to Dobcross1

You're welcome. It's simply knowledge gained from experience really, nothing special. Give it some time & you'll be sharing your experiences too! I'm pleased the replies you've had have helped.

pd118 profile image
pd118

I squeeze a sponge ball helped take swelling down now I constantly stretch fingers thumb twirl too

Nanna71 profile image
Nanna71

I am having a slow response to MTX. Started taking the tablets at 10 mgs in November 2018, then 15 mgs since January 2019 (my doctor thinks 2 months shows a result, I'm not so sure). So 6 months in and I think I'm getting a good response just now. But, hard to determine since I also have, subsequently, got PMR (polymialgia rhuematica) and am on steroids at 20mgs daily. Also have sulfasalazine added in to the MTX.

Just my opinion, but I think my immune system is really hard to suppress and needs the long term beating down.

Dobcross1 profile image
Dobcross1 in reply to Nanna71

I know what you mean about being hard to suppress - I get one joint sorted and it pops up in another!! And, I have zero patience so just want things sorted now if not sooner 😂😂. I hope you continue to feel better - my MIL has PMR and gets relief from the steroid tablets so I hope they are helping too. Thanks again.

pd118 profile image
pd118

flare got me to learn to inject it upper legs - LOVE !

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