allanah8 years ago

I'm sero negative, on leflunomide, mtx, ritiximab, prednisolone and naproxen. And regular steroid infusion. It does work but still get bad flares from time to time xxx

jlmack in reply to allanah8 years ago

Thankyou allanah. Interesting you still get bad flares though? I though the RA meds were supposed to stop them? In fact my Rheumy told my husband when they get the right treatment you should act like you are in remission? Funny how everyone is different with this.

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allanah in reply to jlmack8 years ago

My opinion is that the drugs control not cure so ftom time to time it raises it's ugly head ?! If you get my drift , then I get help with the flares and continue the drugs! Xx

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helixhelix8 years ago

I'm on triple therapy with great success, although started just on MTX then had hydroxy added in and then Sulpha. All in all it took about a year to find the balance of drugs and doses that worked best for me. And over time these have been adjusted a bit to keep me under control and minimise side effects.

As for whether I'm sero-negative or not then depends on how your rheumy defines this. I'm negative for the RF factor, which my rheumy calls sero-negative although I know others also use the term for people who are negative for anti-CCP. My rheumy doesn't and only uses positive/negative for RF, so she defines me as sero negative, anti-CCP positive RA.

It's a shock going for a drug free life to one where you have 70 - 80 pills a week, but it works for me so that's what I concentrate on.

jlmack in reply to helixhelix8 years ago

Thankyou for your response HelixHelix. It certainly is interesting the whole sero-negative/positive thing. We've had a similar journey, MTX first, then hydrox added in with upped dose of MTX, now MTX injections and now the distinct possibility of Sulpha. Glad to hear triple has worked for you. There is light at the end! I'm negative for both RF and a-CCP although these keep testing me! My Rheumy told me i had sero-neg RA and the specialist nurse told me I had sero-neg Inflammatory arthritis. Basically the same thing...?

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Candy8 years ago

Hi, I'm on triple therapy and sero negative like you, and have been on this regime for 6 years. I don't seem to have any problem with the Sulphasalazine or Hydroxy., but I take Methotrexate orally and experience nausea, abdominal pain and stomach upset for two days after. Did try to reduce Methotrexate with Rheumy guidance, but flared. I also have no noticeable swelling joints most of time, but experience stiffness and pain from time to time. Hope you get some relief soon. Take care.

Candy

helixhelix in reply to Candy8 years ago

Have you asked about changing to injectable MTX? With lots of us it seems to avoid all the problems with nausea etc as bypasses the stomach - and is more effective.

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Candy in reply to helixhelix8 years ago

Hi Helixhelix,

Yes Rheumy has discussed this with me, but can't bring myself to inject weekly. It may come to a point where I give in, but just not there yet. Thanks for your reply and advice.

Candy

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helixhelix in reply to Candy8 years ago

I was totally needle phobic - to the extent that I would have fillings done with no anaesthetic rather than have the dentist come near me with a needle. But eventually the side effects of MTX got me down too much so I said I'd give it a try. Couldn't do it to start with as shaking so much, but nurse kept encouraging me and eventually I managed. And now I really wonder why I made such a fuss about it! With the MTX pens it's even easier, and really, really doesn't hurt.

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Candy in reply to helixhelix8 years ago

Hi Helixhelix,

Thanks for the reassurance, may well give it a go and will let you know if I do.

Candy

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Someonesmother8 years ago

I am sero negative and have just started enbrel, on Pred 7.5mg and hydroxy. Tried just about every other DMARD but cant take them due to adverse reactions.

KatyMary8 years ago

Hi, I'm sero-positive (RF and anti-CCP) and have been on MTX, sulfa and Hydroxy since being formally diagnosed last year. At the time I was given a kenalog shot but have not required steroids since and rarely need painkillers now (I couldn't function without co-codamol before, having been taken off naproxen and ibuprofen for various reasons). I'm probably tempting fate here but I do seem to have struck lucky that the combo works for me. I hope you find the mix that works for you soon.

oldtimer8 years ago

if that combination doesn't work for you then biologics are the next step - so don't give up - it may be a long road to success but most of us get there in the end.

keffi8 years ago

Has no mention been made to try TNF. this is a biologic treatment-HUMIRA. It's costly to the nhs but I have now finally been approved after 1 year of permanent flare. Still waiting for pens and drugs to be delivered. At the moment am taking MTX (to be replaced by HUMIRA) 40mg daily of prednisalone and 1000mg a day Sulphasalazine. You just have to keep making a nuisance of yourself with your clinic until you get results! Good luck xx

jlmack in reply to keffi8 years ago

Biologics have been mentioned 3 times. My DAS score has been 4.65, 5,65 then 4.65, 3 weeks ago. But the last nurse didn't mention them, Only Sulfa. the consultant mentioned them early on and my MTX injection training nurse mentioned them too. Watch this space. After phoning the helpline today I've been told not to reduce my pred to 15mg tomorrow and stick to 20mg as had another flare over the weekend. Then next Wednesday alternate days 15md, 20mg, then play by ear. Trying not to get down, but it's hard.

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Livingston8 years ago

Hi

I'm sero-positive. I'm supposed to be on hydroxy, MTX & sulfa triple therapy but I had a bad reaction to the sulfa & had to stop it. Due to be seen at the clinic for review in 2 weeks & I believe that Plan B was to add leflunomide in as my third drug. Not hugely keen on this idea - it sounds even scarier than the others - but I need something, so I suppose I'll give it a try.

Hope you get something sorted out that helps you.

jlmack in reply to Livingston8 years ago

It's such a frustrating disease....I kinda feel if 2 DMARDS aren't working totally, one of them being injections of MTX, then adding in another DMARDS might not be the best way forward...

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Livingston in reply to jlmack8 years ago

My understanding - which is probably less than perfect - is that each of these drugs works in a different way/knocks out a different bit of the excessive immune response and that's why you tend to end up taking more than one. There does seem to be a tendency for them to lose effect over time but I think the doctors feel that some effect is probably better than none and they add rather than replacing.

I started on hydroxy alone which worked well until it didn't, then went onto MTX alone - which also worked well until it didn't and I've had a period taking both together. Since things are going pear shaped again and I have a new rheumatologist, the idea of triple therapy has come along.

Here's hoping we both get something good out of whatever our next treatments are!

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Hidden8 years ago

Just about the sero-neg RA v. inflammatory arthritis thing ........ It can take a while to get a really accurate diagnosis, sometimes 'wait and see' does seem to be a valid approach. I think that if there is uncertainty about the diagnosis then going for the umbrella term 'inflammatory arthritis' is just honest & upfront.

I saw a couple of rheumys initially - locum & private consultant - who diagnosed Psoriatic Arthritis straight off. However my regular rheumy hedged his bets with the 'inflammatory arthritis' tag. In his case I didn't see that as good practice, more that he couldn't be bothered to keep looking for the exact diagnosis, he tended to be complacent about everything. If that uncertainty had come from the rheumy I have now I'd have been more convinced as he generally inspires confidence.

The exact diagnosis tends not to matter so much in the early days as the first line of treatment are pretty much the same for most forms of inflammatory arthritis. But over time it can become more important, for example PsA and RA are assessed differently for access to biologic drugs. Plus I guess most of us just like to know what's going on! All in all though, I'd rather wait for a firm diagnosis than jump from one temporary diagnosis to another as sometimes happens.

Hidden8 years ago

I am sero neg too and on triple.Plus Naproxen and just finished a course of preds. Hdx and sulpha worked very well until last Oct. Only real side effects was sun sensitivity. My fingers wrists have been flared up since then. Mtx added late Jan, started on 10mg to build up. Got to 15mg then had burning tongue and throat. Nurse wanted to increase because still swollen. She even mentioned swelling in my knee through my jeans. I think now the swelling is becoming normal and I don't even notice sometimes. I do the pain though and stiffness. Dr said decrease again, to 10mg it may be allergic reaction and increase sulpha again. Oh I did ask about stopping preds. Stupid me. That was 2 weeks ago and for a week I have been badly swollen and in pain cannot wait til appointment tomorrow. So frustrating we are going on hols in a month and thought all would be settled by now.

Do hope you have success with your meds.

Victoria-NRASPartner8 years ago

Hi

I don't speak from personal experience, but I work on the NRAS helpline, so speak to a lot of people on combinations of DMARDs and can tell you that this combination is common, especially in the early years of having the disease. They like to hit it hard in the early stages, but may be able to drop doses or take you off some medications if it becomes more stable.

I hope that helps

Victoria

(NRAS Helpline)

Azabat8 years ago

I have been, but I'll be dropping the sulfa tomorrow. I haven't been on as much prednisone as you, but I haven't noticed much of an improvement, honestly. Well, more like none. The sulfa is really hard on my stomach (I have chronic gastritis) and I'll be starting lefluonomide tomorrow. Some of it, I know, is simply the hoops I need to go through in order to move to biologics if I need 'em. I'm seronegative as well, but my DAS is also unchanged.

It's worth a try, I'd say. I know it's been really helpful for some people, but I'm not one of em, unfortunately.

jlmack in reply to Azabat8 years ago

Sorry to hear it's not all working out for you Azabat. As you say it's a lot of hoops to jump through for Biologics...

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jlmack in reply to jlmack8 years ago

Especially when you are sero-negative!

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Hidden8 years ago

I am seronegative although my RF was positive to begin with but fell to equivocal after two years on MTX and Hydroxy. I was told by my rheumy that the seronegative RA diagnosis came out of my negative anti-CCP. I presented with classic RA synovitis which is why my RA diagnosis still stands even though my insidious type of RA has turned more systemic and Lupus-like over the past few years. I have had allergic reactions to three dmards and not tolerated MTX orally or even by injection. So managing three at once as some here do is beyond my ken!

I've come to hate seronegativity because it means I don't qualify for biologics so far, no longer interest my rheumy with my previously swollen knuckles -but am always ill with fatigue and suffer from awful nerve pain - so am under a neurologist too but nothing shows up in neurology tests either apart from some autoimmunity. I think I should probably change my HU profile name from Twitchytoes to Nomansland!

If I could tolerate three DMARDs - or even two - then I would give it a go just to get some proper quality of life back.

I went to a talk last year where a rheumy from Glasgow explained that a study done in Finland showed people on three dmards for early RA tended to do better re drug induced remission than those put straight on to an anti-TNF along with one DMARD. So this study showed that, provided the tolerance issue could be overcome, triple therapy was the most effective as well as most financially viable option.