My First Consultation

[Millie66]

It went ok just confirmed that I have RA . Of course I was hoping she was going to say it was something else but alas.

Had a steroid injection and put on Methotrexate and Hydroxychloroquine.

I went back the next day and after 2 painful attempts managed to get some fluid drained off my knee and a steroid in there too.

I think the steroids have made me feel a bit better ( nothing dramatic) and my knee is less painful. I haven't yet had any obvious side effects from the Methotrexate so things are ok ish?

I wanted to know if how exacting the time has to be for the Methotrexate? I am going out next week and didn't want to take the med out with me can I take it a few hours earlier?

[helixhelix]

Oh well, at least you know. But sorry for you all the same.

When I first started I was completely focused on getting things right, and wrote out a timetable and set alarms on my phone. These days I'm hugely casual about it. My personal rule of thumb is that if I manage to keep things in an approximate 12 hour period then I'm doing fine....

[Seashoreshanty]

I Was exactly the same as you diagnosed in 2014 still on methotrex and hydrox and i am in remission. Stick at it, it works ! intake methotrex once a week on a tuesday and hydrox twice daily. I still go out and about, you could take it earlier or later but keep to the same day, well that was what i was told anyway. Good luck

[Millie66]

Thanks for that. Seems like the Steroids are really kicking in and I feel the best I have felt for months and months( I know this is only temporary ) but pleased to get some relief and that the meds haven't been too bad yet?

Are you taking any supplements? Do you have any physio?

[helixhelix in reply to Millie66]

With luck the steroids will last until the other drugs kick in and you'll never feel as bad as you did ever again! I always did daily range of movement exercises (look at NRAS website) and now I'm stable I do things like Pilates to keep joints flexible. I've had physio for specific problems, and would do so again if there was a bit of me that needed it. I've also had a lot of help from the podiatrist.

I'm much more of a believer in a good diet than supplements - I prefer to spend my money on things I enjoy like nice food than more pills. So lots of veg & fish. However, despite much effort I can't keep my Vit D levels up so take a supplement for that.

[Millie66 in reply to helixhelix]

Good news then as I felt absolutely dreadful a couple of weeks ago, it will be good to get back to regular exercise too .

[EmmaS-NRAS NRAS]

Hi Millie66,

Sorry to hear about your diagnosis and I do hope the Methotrexate works for you.

In the meantime, do have a look at our Newly Diagnosed booklet as it may answer some of the questions you have. nras.org.uk/publications/ne... Our Helpline team are also here if you need to speak to them 0800 298 7650.

Kind regards,

EmmaS-NRAS

[Millie66 in reply to EmmaS-NRAS]

Thank you .some useful info .There is a lot to take in !Good to know there is help .

[nomoreheels]

Seems you had a straightforward appointment, that's good. Sorry that it's been confirmed you've joined our club but at least you know what you're coping with & being here you may not feel so alone in this & of course you're amongst people who understand how it is.

When I was on MTX tablets my Consultant suggested to help with any side effects to spread the dose through the day & with food so I'd take my 15mg as 2 at breakfast, 2 at lunch & 2 at dinner. Others take them all in one go at a specific time, others at night time but as long as you take them the same day each week it's really what suits you. So no, it doesn't matter if you take it before you go out though personally I'd take them either earlier in the day then they're less likely to be forgotten but that's me who's prone to forgetting to do something & then remember later unless I do it straight away! What i'd be somewhat careful about is if you intend drinking alcohol. No, I'm not being a killjoy! Your Rheumy may have mentioned it but until you have the first few blood tests it's a good idea not to drink alcohol so a clear idea of how the drug is both working on the inflammation or if it's affecting your liver, which as you probably know alcohol could affect that level in particular.

Sorry about the last bit if you like a bevvy but it won't be forever & then you can work out how much you are able to have.

[Millie66]

So far I feel ok but I only have had one dose do the side affects increase ? Also the booze thing. I don't really drink it can go 2/3 weeks in between however I have 3 occasions in the next few weeks which I probably like a drink? I am only talking of 3/4 glasses in the next 2 weeks?

Will I get away with that?

[nomoreheels in reply to Millie66]

That's good you feel ok, if you have any side effects it's often from the first week. In my case the longer I took it the fewer they became but were still somewhat disruptive so I was changed to subcut. Now I just feel less like eating & a bit more tired the day after I inject. We each react differently though but I consider myself fortunate that it works with manageable side effects. With my latest increase in dose I had 4 days of feeling rough so my dose had been reduced.

It's entirely your choice about drinking. Personally I wouldn't risk it so early in treatment because your Rheumy will be paying close attention to your results, that the high levels should be coming down & also those which shouldn't rise don't. Dependant on how you react to alcohol is dependant on how many units you drink, your liver needs to be in tip top condition. If you're unsure ask your Rheumy nurse, some Rheumy's are more relaxed about it. I would suggest though If you do drink try not to the day before your blood test.

[Millie66]

Still haven't had any notable side affects perhaps a couple of hot flushes?

I am planning on starting on the Hydroxy today? Just wondering if it absolutely necessary to take too.?

I am sure it is but of course I have completely forgotten what the consultant said about it?

I still am only thinking of a couple of glasses of wine in the next 2 weeks. I will just let the consultant know.

[nomoreheels in reply to Millie66]

Pleased you're ok. HCQ is daily med not weekly like MTX so it seems unusual to have a deferred start, it's normal to start both DMARDs together but I'm sure your Rheumy must have had his reasons. Check on your personalised direction label on the HCQ box, it should say the dose you've to take. It may say 1 200mg per day or 2 200mg tablets per day. I used to take 400mg daily & split the dose as one tablet in the morning & 1 in the evening.

Always if you're unsure contact your Rheumy team. x

[Millie66 in reply to nomoreheels]

Thanks

The delayed start was to try and distinguish any side effects? Yes it's just once a day so will start this eve and see what happens.

[nomoreheels in reply to Millie66]

Are you generally sensitive to drugs? If you are that could be why she's suggested not starting them together though it is a short period to determine. Hopefully you'll be fine.