Questions : Hi guys, I have a dilemma. I am newly... - NRAS

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Curcubeu profile image
Curcubeu
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Hi guys, I have a dilemma. I am newly diagnosed with RA and have loads of questions still about this condition.

I am on Methotrexate 25mg injectable but my symptoms are only partly controlled. I need another medication to help me out. They proposed Hydroxichloroquine but I cannot tolerate it. Or it's just in my mind, I am nauseous most of the time, excessively tired, stiff and have blurred vision right after I take it which goes away after 1-2 hours of administration. Are this normal at the beginning until the body gets used to it or what? I honestly stopped it yesterday and have to decide whether I go for something else or try to continue with it πŸ™„

The other options are azathioprine sulfasalazine or leflunomide. Rheumatology Department won't decide for me, they gave me the options and let me decide. I don't know what to do? Which will be, from your experience, the best Please help πŸ™

Thank you

18 Replies
β€’

Hi there. I am on MTX 20mg injectable and also Sulfasalizine. They introduced the latter as my RA was still causing flares and stiffness.

The Sulfasalizine has really helped.

I also tried Hydroxychloriquine but it made me irritable and really moody. On consultation with the Rheumy nurse i was immediately taken off it.

The Sulfasalizine is well tolerated (IME) and I don't have any side effects.

It has really calmed my system down and I have 95 percent of my joints back. I'm still keen to reach 100 percent movement back (and I'm told this can be achieved) but compared to my diagnosis last year I'll take the 95 percentπŸ˜€

Medication has given me my active life back. I am back to riding my horse, weight lifting and cycling. I couldn't have done that without these drugs.

Good luck with you treatment and if you are unhappy the Rheumatology team are on hand to help you.

No one should have to be in pain, just remember that 🀞🏼

Obviously we can only give personal experiences and it's very different for everyone - what works for one person can be awful for another!I started on Methotrexate and Hydroxychloroquine and gradually went up to 25mg Metoject. Then added Sulfasalazine and things really improved - seems to have been the missing piece of the puzzle for me. I've since dropped back to 20mg Metoject as the side effects seemed to be building up on 25mg.

I'm grateful that my rheumy doesn't give me choices (although agreed when I requested to drop the Metoject dose) but just recommends new medications which I am happy to try.

I felt exactly the same on hydroxy. It’s not in your mind. Just pick one is my advice (I’m not a great example; none of them worked for me and all made me tearful and depressed but we are all different). If none suit there are other drugs. Just keep going: we are an experimental lot! Welcome to the most supportive crowd around.

Thanks 😊

How long have you been on methotrexate? It can take three to six months to work fully. For me, I improved a lot after three months, but not in remission (as I am now) until six months. We all respond differently. I had a steroid injection on my first rheumatologist meeting to help with the symptoms until the methotrexate kicked in. Can’t help you on other med choices.

Curcubeu profile image
Curcubeu in reply to KeenGreen

I am on Methotrexate for 3 months now and have not seen major improvements yet, it also makes me nauseous, very tired. I am functioning at 60% like. Have been on Prednisolone initially to help with the symptoms until Methotrexate was started. I have reduced Prednisolone gradually to nil now awaiting Methotrexate to take over. But my symptoms started to come back the minute I was off steroids completely. I literally struggle towards the end of the week, I do my injection on Friday, catch up a bit for few days then fall back again towards the next injection. It's definitely not good 😐

Have a look at the treatments pages on the NRAS website. That will give you more information about each one on offer to base your own decision. I think that it is right that you should be part of the decision making about treatment which is going to be long term, so the more you know, the easier it is to make a decision.We are all different in the way that we respond to drugs. How happy someone else is on something won't necessarily apply to me or you. Unfortunately this means that you have to look at the possible side effects and decide how acceptable they would be to you. If you can't tolerate feeling nauseous, then that would affect your choice, for example. I find that writing down a a page of cons (against) and pros (for) for a drug helps me to decide.

Hi CurcubeuI have been on both. For me the Sulfazalazine was the easiest to tolerate. Leflunomide had the most effect.

Curcubeu profile image
Curcubeu in reply to notsochunky

I have decided for Sulfasalazine now. Hope it'll work so I could move on. Not very happy at the moment πŸ˜• Thanks x

Boxerlady profile image
Boxerlady in reply to Curcubeu

Good luck - hopefully it will be "the one" 🀞I started at a low dose and built up gradually on the nurse's instructions. With each increase I had a few days of nausia but it passed each time; in fact, I think that it's helped my IBS-C 😊

The only lasting side effect is the impressively yellow wee πŸ˜‚

Curcubeu profile image
Curcubeu in reply to Boxerlady

🀣🀣 Thanks hun. Yes 🀞

Hi Curcubeu and welcome. It is only natural to have lots of questions, and I'm glad you have had some wonderful support already. Do please have a look at our resource pack for people newly diagnosed with RA. It can be downloaded or ordered as a hardcopy: nras.org.uk/product/newly-d...

In addition we have a Helpline available Monday-Friday 09:30 to 16:30 on 0800 298 7650, and we would be happy talk through any of your concerns.

Curcubeu profile image
Curcubeu in reply to SarahW-NRAS

Thank you Sarah. It is much appreciated 😊

I am very surprised that you were asked to choose like in a sweet shop. They are the experts. I would want them to suggest one and then if it doesn't work for you, another until they find the one that is right for you. I am on mxt 17.5 now and have been on mxt for many years. It does take approx. 3 months to kick in and there can be side effects at first but they do settle down although not with everyone. I am afraid it is trial and error with these drugs. We are a very complicated lot and what suits one doesn't always suit another. I was on hydroxychloroquine for a couple of years but decided to stop it because I was worried about my eyes.

Curcubeu profile image
Curcubeu in reply to Sheila_G

I thought the same. They should advise us not let us choose. I actually NEVER saw my consultant, I only know who she is, I was diagnosed in private by an exceptional doctor in Cambridge then seen by a junior doctor in NHS that reported to "my consultant" and hocus pocus I was confirmed with RA and registered into the system. I always felt ignored. If I have something to ask I call the nurses helpline in Rheumatology Department. They were actually the ones that told me I have to choose, they only offer but don't decide.

How bad is that, I decide my treatment on nurses offer πŸ˜πŸ™„

I won't accept this forever, no worries πŸ‘

am afraid its try and see what works for u… we cant do medical advice on here but the reality is it takes a while and few goes to get the balance of meds, side effects and quality of life all sorted out. So it horribly just a case of pick ur drugs and have a go

With Mx you usually start on a low dose, say 10mg then it goes up in 5mg increments. With several months between each one to see how things are progressing.. then onto the injection once you reach 20mg as your body absorbs more through this. Sulphasalazine is added along the way, again in increments. It seems strange to me that you have been given the max Mx dose straightaway. You need to talk to your rheumatologist.

Also read the NRAS website.

I take Mx and Sulph. It took me two years to get to some flexibility and no pain (rapid onset everywhere).

Curcubeu profile image
Curcubeu in reply to CripLady

I have and these were the indications. 25 mg Methotrexate and 200mg Hydroxichloroquine twice a day for a month. At the time I was still on Prednisolone 15mg daily. You imagine the shock for my body. Indeed, my protein C was 2000 and a bit when normal should be under 5.

I couldn't tolerate the Hydroxichloroquine, given up on it and tried it again lately as my symptoms worsened after stopping Prednisolone completely. But it is clear my body does not tolerate it.

So, my choice now is Sulfasalazine, let's see.

Thanks a lot for sharing your thoughts. 😊

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