What next?

Hello! I have an appt with my consultant this week and I want to know what's likely to happen next? I've been on Sulfasalazine and Naproxen for a year and six months ago started 'combination therapy' - Sulfasalazine, Hydroxychloroquine and Methotrexate. My condition has just got worse (including my eyesight but I think that's the Hydroxy) - I sometimes can't use my hands to do anything because my wrists are so swollen and painful. I started injecting Methotrexate 7 weeks ago (with high hopes!) but it's made no difference. I was wondering what other people's experience is of what might be prescribed next? I'd really appreciate any suggestions x

18 Replies

  • I too have this problem. They initially start with dmards such as you are on. I tried various ones which either just didn't work for me or had side effects.

    Eventually the Rheumy said I should then, as per the RA protocol be considered for biological drug therapy. They check u, check ur joints and your blood tests and if your DAS ( disease activity score) is above 5.1 you can be considered. Then they apply for funding.

    7 weeks is still a bit early though as they tend to try the drugs in the main for three months, as it can take them this long to kick in.

    There are loads of things about DAS scores and biologicals on the NRAS website to look at.

    But I would definitely as well see ur GP for pain relief. It sounds to me as though your isn't enough, I am even on morphine now which really helps me !

    Also phone the hospital helpline and ask if u can be referred to the OT as they can give u splints that you can wear that really make ur wrist more comfortable .

    Hope that's the type of info u want? ! A xx

  • Thank you, Allanah - that it is really useful - I really appreciate it. My last DAS was 6.9 so I think that shows that maybe I need something else,

  • If your eyesight has got worse and there is any suggestion that it might be related to any of the meds (or if it includes redness and pain that might mean an inflammatory eye condition) then please insist that your GP sends you to get it checked out. If its bad pain or redness, then just go straight to an eye emergency clinic and tell them you also have RA and what meds you are taking. Eye damage happens with inflammatory arthritis, and in most cases it is treatable and lasting damage is avoidable - but only if it gets checked and dealt with in time.

  • Thank you ... no redness in my eyes but I will get it checked out

  • Actually the Hydroxichloraquine link with eyes would worry me much more than anything - please go and get your eyes checked out as soon as possible - never mind redness or whether it's working for your RA, this drug can infrequently cause problems to the eyes so it's very important to get this checked as a matter of urgency I would say.

    Once you've done that please push to try Biologic drugs because it sounds like you need them. Tilda

  • Hello, I'm going to be starting Hydroxy and I'm really concerned about the fact that this drug can cause problems with eyes/eyesight..... I asked my Rheumy but he did not seem too concerned and my optician just said google it......great! and check with your GP.....who would probably tell me to check with my Rheumy!!! What kind of problems can it cause with your eyes as this is not giving me the confidence to start taking it especially after the problems I've had with other DMARDs? Like I said though neither professionals seemed to concerned but after reading this I am now.

  • Hi Amanda

    I agree the comments above are very alarmist. However, I can advise as follows, having been prescribed hydroxy in June 2012 as my second DMARD with MTX and still on it. Before you start Hydroxy you are advised to have an eye test to look at the health of the back of your eyes. Your optician should be able to take these "baseline" photos. Assuming, all is well (I'm sure it is), you start Hydroxy and should have an annual eye test to reapeat the look at the back of your eyes and more photos. I had my follow up eye test in July and all is well. The risk og Hydroxy is retinal damage but it's a low risk, hence the precautions pre and during use. They also recommend you discontinue after 5 years as the risk increases. My Rheummy went through all this with me in advance, it's also covered in the drug literature you get from Arthritis.org. So,get your eyes tested before you start and, assuming all is wel,l it'll be fine, above all don't worry

    Ronnie x

  • I wasn't trying to be alarmist Ronnie. Not well enough to think clearly just now but you are completely right about the risk being very remote and only increasing after five years a tiny bit. However I was given an eye check before I started Hydroxy.

    Amanda sorry if I frightened you inadvertently. It was more that Waylaid says that her/ his eyesight is an issue that I responded to. I know Hydroxy is a first line DMARD for Lupus and I had no problems with it at all and my rheumy allayed my fears by saying exactly what Ronnie has said. The dosage is also worked out according to your body weight as well I was told. It is the least worrying of all the DMARDs for side effects. Sorry again for reacting without thinking harder first. TildaT x

  • Hey no harm done but thanks for apology :). It's good in a way that these potential problems are pointed out but as I said my Rheumy and Optician didn't seem that bothered! It is a concern for me though as I'm short-sighted and my retinas are already quite stretched!! Blooming RA nothing is straight forward is it? X

  • I hope my apology and Ronnie's comment have both helped show you that Hydroxy isn't really to be feared in it's impact on eyesight because this is so rare Amanda.

    I am a professsional artist and have quite severe longsightedness myself so was very worried about this too when Hydroxy was added to MTX for me. I asked the optician and he was also very laid back about this and said he really thought it was so rare as not to be of any concern beyond yearly NHS eyetests. He suggested I ask the rheumy so I did and he explained everything Ronnie has said plus about the body weight. He said only two yearly eye tests needed as standard for the general population.

    I have struggled so much with all these RA drugs myself that you really don't have to tell me about the fear and concern you are feeling - I'm living it as we speak with side effects listed as extremely rare to MTX. Also had rare but scary side effects to Sulpha. But Hydroxy never worried me at all after this discussion - and I didn't have any problems with it at all for the year I was on it. I would go back on it very willingly if that's what the next option is for me. Good luck. Tilda x

  • Thank you Tilda, I just think that after rejecting MTX and Sulpha I'm in danger of developing a phobia about these drugs :) it's interesting what you say about body weight and the drugs as I've wondered about this myself, as I'm quite slight and have wondered if the dose ages could have been too much for me but this has not been discussed by Rheumy before? Thanks again Tilda and it's encouraging to read that you did well on Hydroxy. X

  • Well I didn't actually do well with my RA as it didn't help much they said so when I started getting very rare side effects to MTX they got me to drop Hydroxy first as it was doing less for my RA. I regret this now because I'm on nothing at all presently and I had no adverse effects from Hydroxy at all.

    Hey I do know all about phobia to drugs - if I wasn't still tingling, burning and numb everywhere five weeks after stopping MTX I would be waving my sore hand for the next one but as it is I could quite easily just live off sleeping tablets or morphine and never touch another RA drug again. Sure we will both get over this when we find the right meds for us and it's important to stress to new people that we are the exceptions and most people do tolerate them well. X

  • Oooh yes I would certainly not want to scare anyone.... my Rheumy says that I've been unusual and unlucky but the vast majority of his patients do well on Dmards but like you I would quite happily never take an RA drug again but alas for the moment I have no choice. Good luck Tilda and to you Waylade, apologies for hijacking your blog. X

  • I don't think anyone with RA has much of a choice really Amanda. Those who can't tolerate any drugs get dismissed by rheumies it seems. Good luck you too. It's hard to get the balance of talking about our side effects and phobias but somehow not scaring people isn't it? We are both learning the hard way it seems.

    Also also sorry for waylaying your question Waylaid! x

  • I looked in to Hydroxy very carefully before I started on it as I have family history of serious problems with eyesight, including macular degeneration etc etc. Anyway it is a relatively rare side effect, and even less likely with the doses we tend to be given (more common in the past when bigger doses were given to malaria patients - as it used to be mainly and anti-malarial drug), and on it for less than 5 years. Plus, with regular annual eye checks if blobs (there is some posh name , but I think of it as blobs) start appearing on your retina then you can stop before it causes irreversible damage. So I started it, have been on it for 3 years + with no bad effects and even better it's controlling my RA (along with all the other drugs of course, as I'm on the triple cocktail).

  • Hi there Waylade, If you look at the NRAS site (www.nras.org.uk) and search for "Biologicals" you'll find a link to a very helpful booklet that explains about these drugs. Most people who try them find them extremely good! Polly

  • I would consult your GP ASAP if you say that your eyesight has gotten worse. Like somebody above said, inflammatory arthritis can cause eye damage so it's nothing to take lightly. Better to nick it in time before it gets worse. And I guess it's time to look into different pain relief therapy. I myself do not have the pain as bad as others and can handle it "sober". But if morphine or something similar can help then ask your GP about it, see what he says. peerdiagnosis.com/lump-behi...

  • Many thanks to everyone who has offered help and advice - it's really valuable and I feel a bit more armed with information for my appt this week.

    It really helps knowing there are so many people out there who are so sympathetic and supportive and who know what they're talking about because they're going through the same thing! I think we are all truly amazing! x

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