Treatment RA: Hi!! I was diagnosed with RA in February... - NRAS

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Treatment RA

Roxy29 profile image
10 Replies

Hi!! I was diagnosed with RA in February. then I had a knee and two toes affected. I started treatment with sulfasalazine (4 / day) and during this period my other knee and a finger were affected. Then I started treatment with methotrexate and sulfasalazine and it started to affect my hand on my elbow.

I'm scared, instead of starting to feel better I feel worse and worse. :(

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Roxy29 profile image
Roxy29
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oldtimer profile image
oldtimer

Most people start to improve on methotrexate after three months. If you are actually getting worse, you need to push politely and firmly back to your rheumatology team that this is not acceptable.

If you have a look at the NRAS website treatments pages you can see that there are many other treatments available as well as increased dosage of methotrexate is you haven't already done that.

KittyJ profile image
KittyJ

When did you start the methotrexate as it can take some time to work and you can get worse during this time waiting for the meds to start working.

Try not to be scared, talk to us about your worries and we will try and reassure you.

As has been already suggested by oldtimer have a look at the NRAS website, there’s lots of useful information to help you 😊

Roxy29 profile image
Roxy29 in reply to KittyJ

I am scared and very upset. in less than a year I have 8 affected joints. I don't remember what it's like to live without pain, it hurts terribly, I have 2 small children who need a healthy mother and I seem to be getting worse

KittyJ profile image
KittyJ in reply to Roxy29

Have you been prescribed any pain relief ? You don’t say in your post. If you’ve given the meds enough time to start working or are struggling then I’d call your rheumy team and discuss it with them. They need to know how you are and will assume everything is ok if you don’t let them know. The early years of diagnosis are very hard I know, but stress and upset can exacerbate things too. Give them a call, there may be something they can do to help you.

NRAS have a helpline if you would find it helpful to talk to someone

nras.org.uk/helpline

Brychni profile image
Brychni in reply to Roxy29

I feel like this too. I think I'm a lot older than you (49) but have a 15 yr old and 11 yr old and a 32 yr old. I wonder what on earth the younger ones think of me always being ill. I get crippling cluster headaches too which often last for over a week during which time all I can do is lie in bed or rock back and forward with my head on the floor. On top of this I have discernible perimenopausal symptoms too which feel as though they are overlapping so I don't know where the RD and hormone storm begin and end.

So really, out of a month I spend about 3 weeks out of action or in pain. I was diagnosed in March and started on hydroxyc. which did nothing. I've been taking sulfasalzine for a few weeks now and have had to halve my dose because it gives me hideous constant, low level headache and nausea which makes me feel wiped out. I literally can't function while taking the full dose.

Meanwhile more and more classic RD symptoms present themselves nearly every day. Swollen fingers etc. Honestly, sometimes I feel suicidal. I'm so useless within my family; my husband often ends up doing everything because I have lost the will and I seem to have so little headspace all of a sudden and find it hard to listen to my daughter enthusiastically telling me things when my head feels like it's about to cave in.

I take naproxen when it gets too much and I've been told to take it as a preventive for the cluster headaches too, although only for a limited time until my appointment with the Migraine Centre in September and I have to say it does work for the most part.

Boxerlady profile image
Boxerlady

As the others have said, it does take time for these medications to reach full effectiveness but it might be worth contacting your rheumy team to let them know what's going on. I've done that twice since the lockdown. The first time I'd been on Methotrexate injections for 10 weeks (having changed over from tablets after several months and dose increases) and they increased the dose. Last week I rang them - after 5 weeks - as things seemed to be getting worse and I've been called in for a face to face appointment this afternoon for a joint review and they've said that the consultant wants to add something as she's not happy that things aren't under control yet. Both times I hesitated about ringing "early" but I'm really glad that I did so why not do the same, if only for reassurance.

AgedCrone profile image
AgedCrone

I’m afraid that is often the way...you really do have to persevere & give the drugs a chance to kick in.....Mtx in particular can take a few months to start to work .....as can a lot of RA meds.

I’m afraid you will have to get your head around the fact that the meds we are prescribed can often take a while before you feel the benefit....but do speak to you Rheumy nurse...she may ask your consultant to prescribe a steroid injection to tide you over....they are often a great help.

Hi Roxy

Sorry you have RA.

Best thing you can do with this illness is get good at communicating with your team. Tell them when you're not well, not improving, getting worse. They need to know. Accept help from friends and family.

Have you seen an occupational therapist. They will teach you about joint protection, aids and adaptations. I found my wrist splints, automatic car, ergonomic pram, electric can opener, food processor, special knives and built up cutlery invaluable when my son was a baby.

Nras have some excellent resources and can set you up with a call from another mum with RA.

Give the mtx 12 weeks but there's nothing stopping you having steroids in the meantime.

Sounds like you were going to get more sore.

I hope the drugs kick in very soon.

Take care

Kiki

Gilliancheche profile image
Gilliancheche

I am no longer a young mum, but was diagnosed Jan '19. My symptoms have worsened over that period despite taking sulphasalazine and since Jan 20 adding in Methotrexate. It has affected more and more joints I do call my rheimatolgy nurse often and they are supportive. The pain now seems to be decreasing since I started injecting the MTX. I think communication with those treating you is essential GOOD LUCK

Hang on in there. I was diagnosed 12 years ago and had similar problems, taking many and varied analgesics for sone while but then stabilised on sulphasalazine, oral mtx and Pred, then hydroxy. Brilliant control for about 6 years

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