Recurring inflammatory arthritis

[Viiks]

Hi guys, Had my first ever flare abroad in 2011, started as a reaction to a diarrhoeal illness is what I came to know. Happened again in 2012, twice in 2013 and now every 5-8 months. In the beginning I would have a flare, knees would swell and resolve after 2 weeks. Initial flares every year. Now becoming more often and more severe, with more joints affected. So much so at its worst I can't get out of bed, go toilet and wife has to dress me.

I was put on a monotherapy of Sulfasalzine 1g a day in Feb of this year after suffering a flare after 8 months. And was absolutely fine until going through another flare since 1 July and have been put on mtx targeting 20mg weekly as well as the Sulfasalzine.

In the morning I'm so stiff my ankles feel like they are broken, back stiff and my right wrist is unusable. Has anyone had a similar issue, is the initial reactive turning into rheumatoid?

Feeling really down but putting that down to effects of DMARDS. Glad to have stumbled on this site as I'm not alone!

Would love to know if anyone has been in a similar situation and what has worked for them.

Rheumys say I have sero negative hla b27 negative recurring reactive inflammatory arthritis?!?!

Although the reaction to what exactly is unclear, they think the first flare up messed my immune system and will just confuse itself from time to time. Anyone experience anything similar?

[allanah]

Yes if I was to try to " pinpoint" my trigger it was after I got swine flu. I'm a bit poorly just now having done other treatment and it put me into a flare as did a recent sinus infection . So yes I think stress infection and illness trigger my flares x

[Viiks in reply to allanah]

Thanks for the reply, may I ask when your first flare happened? Are you fine between flares?

Thanks!

[allanah in reply to Viiks]

My first flare was very severe came on a week after swine flu and overnight . I went from mountain climbing that day to hospital unable to move next day!

They have tried various drugs to get good control and they do work but in between in can Flare and in my case it's often when I've done too much that day. I can't get the same amount of things done now as I used to but I'm awful at resting!

I just call the hospital and they sort me out with steroids quickly , which for me are double edged, they take away my pain but I get awful insomnia! Never was a good sleeper tho.

I hope that once the meds get into your system you will feel better. Maybe go to the gp and get painkillers that actually work for you and even maybe ask about short courses of steroids until the RA drugs take effect.

You just learn how to cope and yes my life is a bit different but it's certainly full and busy still doing my things!

[sallydogsmum]

Hello,

One of the problems with developing an autoimmune disease is that it is often the trigger for others to follow. Personally I have, or have had several over the years, many specific female issues, but others common to both sexes.

If you haven't thought about looking into gut issues with autoimmune problems, you may want to consider it. It seems to be that bowel issues either trigger or are triggered by other inflammatory processes.

Diet can play a huge part in RA , and there are professional, recognised sites that can help with information about cutting out certain foods, you have to work out what can trigger a flare up in you.

Hope you get some answers soon.

SDM

BTW I was sero-negative too in the beginning. It converted to positive after a few years. I don't know why!!

[Viiks in reply to sallydogsmum]

Thanks Sally! I'm on sulfasalazine 1g a day and mtx 20mg weekly. Not sure if it will contain the flares, I'm fine in between flares just worried that may change and I'll be in some sort of pain daily.

[Hidden in reply to sallydogsmum]

This does happen SDM, there's not necessarily a reason for it. I was seronegative from 1987-2014, then was told I'd become seropositive.

[sallydogsmum]

I hope things clear up for you. It can be a long slog, and don't despair if it feels like it's never going to end. Do make sure you talk to your doctor, and they understand if you feel things are not improving, sometimes it takes many attempts and many different drugs before things get better.

take care

S

[wiliby]

Hi Viiks, in response to feeling okay between flares. Like you when my first flare hit, it was everywhere, couldn't move and husband had to dress me. Like allanah I suspect either swine flu or hormones (my daughter was 5 weeks old and we both had swine flu). Once you find the right combination there is every chance you will return to how you were. Within 10 months of diagnosis I was completely mobile, back to work and gym again luckily I had this for a few years with little flares that never really got In the way. My meds have stopped working now but I am confident with a bit of tweeking I'll be good again!

I'm hopeful you'll get some more replies to your question. What you are going through now is the scariest, the not knowing but once the meds start to work there is every chance you will feel like you again...

[Viiks]

Thank you wiliby, may I ask if you were taking any DMARD treatment?

[wiliby in reply to Viiks]

Yes, I was started on triple therapy, mxt, hydroxysomethingorother and the one your on. I'm glad they treated me this way as then they were able to offer me a biologic (enbrel) without delay. Maybe you know this but to meet the criteria you have to have failed at least 2 dmards as well as a certain level of DAS (disease activity score) and to have tried this for 6 months, so almost 6 months to the day do diagnosis I started new treatment and was in 'chemically reduced remission' within 4 months! Treating it as aggressively as they did meant they was a halt in progression of disease with so far no permanent damage to speak of. I think im very to have the rhuematologist consultant that I have, I wish everyone had the treatment I had

Saying that, I know there are many on here who were successfully treated mono therapy!

[Viiks in reply to wiliby]

So happy to hear. My worry is that I'll be refused bio treatment due to the fact flares are intermittent and I'm sero negative. Although this particular flare is almost one month and ankles are swollen feels like bones in my feet are broken!

Who's decision does it lay if you are approved for bio treatment? If you know the answer that is

[wiliby in reply to Viiks]

The consultants decision however they have to follow NICE guidelines (is that correct, anyone else advise?)

We need our in-house experts like Polly or nomoreheels!

Have you been given your DAS score?

I think it depends on your postcode for funding unfortunately from what I've read here, not very fair. I live north Scotland so apart from the weather seems a good place to live for RA'ers!

I think also your DAS score has to be a certain number 2 or 3 visits, but a months long flare!! I've asked the question 're flares before, seems hard to define but before this flare started, how did you feel?

Also, when diagnosed I rang the nras helpline and they really helped, have you rang yet?

I will try find links for you on guidelines and post...

I hate to tell you if you didn't know already but they don't consider feet when working DAS scores, terrible as your mostly affected by feet flares!

I have a link somewhere to work out your own DAS, ill find it....

[Viiks in reply to wiliby]

I have intermittent flares and after a few weeks I'm usually fine, no problems!

First time I've heard of DAS will ask the rheumy about this.

My feet, wrist and ankles and more worryingly chest are something that is occurring now whereas they didn't before

Usually it used to be just knees and ankles. Thanks for the links you've be so helpful I'm really grateful. So nice to speak to others who know what I'm going through, helps a lot!

Flying abroad on Friday long haul and stupidly got vaccinated for polio. Nurse said I should maybe that's the reason flare has lasted so long.

[wiliby in reply to Viiks]

Yikes, I'm sure it may have something to do with your flare! We went short haul couple of months ago, nurse let me have a steroid injection to tide me over, are you able to get one? maybe not after polio.....

I don't know what I would of done without the support of my 'cyber aunts' when diagnosed, in fact even now

[Viiks in reply to wiliby]

I consider you a cyber aunt now lol. Thanks for the heads up, called NRAS. Had knees aspirated on the 9th seeing rheumy private on Thursday, hopefully he can give me a shot in each ankle!

[wiliby in reply to Viiks]

I get called many things, cyber Aunt not so bad! Good luck tomorrow

[nomoreheels in reply to wiliby]

That's right Wiliby, it's the Rheumy who makes the decision to request funding for biologics though of course the patient needs to oblige! As I understand it the guidelines require you to have failed on two DMARDs, both taken for 6 months with 2 months at standard dose, one of which has to be MTX (though intolerance/toxicity can be taken into account on either). Also you need to have 2 DAS 28 scores of 5.1 or higher taken a month apart.

Is this the self-examination DAS 28 calculator you're thinking of? x 4s-dawn.com/DAS28/

[wiliby]

4s-dawn.com/DAS28/DAS28.html

nice.org.uk/guidance/cg79/c...

[Heathersmum69]

Hi ,I had swine flu in 2009'and now I have inflammatory arthritis. Every so often I will flare and be very I'll. I have had Methotrexate and Sulphasalazine. Both made me very ill one way or another. I am waiting to go on Biologics,but I'm not sure what one my Rheumatoligist is going to put me on first. Xx