Another Reactive Arthritis flare

clairc
clairc Member Posts: 90
edited 13. Jul 2010, 11:02 in Living with Arthritis archive
Hi!

I'm struggling with another reactive arthritis flare at the moment and I don't know what to do. Any advice would be much appreciated!

I was first diagnosed with post strep reactive arthritis last August and since then I have had numerous flares. To cut a long story short the doctors have been unable to treat me at all.

The rheumy said it was caused by infections and sent me back to my GP. I saw a doc at the infectious diseases clinic but all my tests results came back normal so he couldn't help either. I can't take NSAIs due to a history of gastritis so all the docs can do is prescribe codeine or tramadol.

I keep having infections, I keep getting flares and every morning I have to choose between being in pain or being off my head on painkillers. I'm struggling to look after my children and I am fed up of being ill all the time.

Clair
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Comments

  • frogmorton
    frogmorton Member Posts: 28,050
    edited 30. Nov -1, 00:00
    Hi Clair

    this is ****!

    can you take cox2 anti inflams?? they do not upset your stomach nearly so much....

    I dont think the rheumy should have abandoned you like this - you deserve better treatment I think.

    I have to admit I do tend to take really powerrful meds in the evening...

    anyone else got any ideas??

    Love

    Toni xx
  • marion1952
    marion1952 Member Posts: 963
    edited 30. Nov -1, 00:00
    Dear Clair

    This is really bad - you should not have been abandoned by a Rheumatologist. I really think you need to be in the hands of an expert in arthritis ... can your GP refer you to another Rheumy - even if it means travelling a little further? (I go to a Rheumy at a hospital some distance away as I prefer the treatment I get there..)


    Hope you get some proper help soon...

    Marion
  • skezier
    skezier Member Posts: 11,333
    edited 30. Nov -1, 00:00
    Hi Clair,

    I agree with Toni you deserve better than this from the gp and the Rumo!

    I am not sure how you can get it but hopefully someone will be able to help you soon. My first thought was talk it through with your gp... takes someone with you and ask him how do you get some real help and if he doesn't help see another one! Its seems very unfair like this.

    I then wondered if a post or phone call to the help lines (number at the top would be the best thing as they do know a lot more I am leaning towards that idea now. Give them a ring tomorrow if you can, they are also very good at listening.

    Don't forget though the people here do understand and will be there for you on a good or a bad day. Sending a ((( ))) and so much hope you can find a way out of this stalemate and get some over due help. Cris x
  • caprica
    caprica Member Posts: 195
    edited 30. Nov -1, 00:00
    Hi, sorry to haer you're having such trouble..

    I might be wrong in saying this but in troublesome cases of reactive arthritis when it's refusing to shift, I thought doctors put people on a DMARD (disease modifying anti rheumatic drug) to calm it down? It sounds like you need some extra help and a better doctor!! Stick up for yourself, because no one else will.. good luck!
  • speedalong
    speedalong Member Posts: 3,272
    edited 30. Nov -1, 00:00
    Hi Clair, this sounds terrible. Surely it doesn't matter what is causing the arthritis if that is what you have then the rheumy should be working with any other professionals he needs to sort you out!! If the doc at infectious diseases clinic can't find a reason for you to keep catching infections then maybe you need to see someone who deals with your immune system ... if they could prevent the infections that would really help.

    Your GP needs to sort this out - and make as many referrals as necessary.

    I agree with Toni about the other type of anti-inflammatories - worth asking and they are usually taken with stomach protector tablets anyway these days.

    I'm not surprised you are struggling.

    Prepare a list and make an appointment with the GP, take someone with you if you can.

    Speedy
  • clairc
    clairc Member Posts: 90
    edited 30. Nov -1, 00:00
    Thanks for the replies.

    Yeah, it is getting really daft me struggling like this, it's getting me down and it's frustrating that I can't do anything about it.

    Basically the rheumy said he couldn't help me because the arthritis isn't damaging my joints. My rheumatoid factor and antibodies tests were negative and I have minimal swelling so he couldn't drain fluid off the joints. Basically he said there is nothing he can do to treat me. The infections trigger the arthritis so if you stop the infections the arthritis doesn't come back.

    The Infectious diseases doctor did futher tests but nothing showed up apart from raised neutrophils which indicate infection, which figures as a couple of weeks later I became very ill with severe abdominal pain. I was admitted to hospital, had a laparoscopy operation and they found I had a pelvic infection. I was diagnosed with ME/CFS 20 years ago so he offered me therapy at an ME clinic (which I turend down) and when I pushed him he said he would refer me to Immunology but he said not to get my hopes up. That was 3 weeks ago and I haven't had an appointment through yet.

    Over the past few days the reactive arthritis has flared up again. I'm not sure what has triggered it, maybe the pelvic infection but I am getting rather fed up of it. All the information I've read says it usually goes away within 3-6 months but mine just keeps coming back.

    I will make an appointment at the doctors tomorrow and see what they can do. My local rheumy isn't well thought of so I went to Chesterfield last time, I'm not sure where else they can send me but I'm going to find out!

    Thanks again!
  • marion1952
    marion1952 Member Posts: 963
    edited 30. Nov -1, 00:00
    Hi again Clair

    Caprica has a good point about DMARDs ... when I was attending hydrotherapy 2 years ago I met a young man who had reactive arthritis in his knee following food poisoning .. he had had his knee drained twice but he fluid returned within a couple of days,.. he had also been on steroids and the rheumatologist was putting him on sulphazalazine - which is a DMARD..

    There ARE things that can be done to help you.. it is very bad that you have been left on your own..

    Good idea of Cris or Speedy to phone the Helplines ..

    Hope you get something sorted soon.. do keep posting and let us know how things go ...

    Marion
  • clairc
    clairc Member Posts: 90
    edited 30. Nov -1, 00:00
    Thanks for all your replies!

    I got an emergency doctors appointment this morning, saw a new doctor at the surgery. I tried to explain everything, it's a bit complicated because I've been ill with so many things recently but to cut a long story short he prescribed Naproxen and Lansoprazole and I've got to have a fasting blood test done tomorrow morning (CRP and TFT which I think is thyroid function). I've got to go back in 2 weeks for the results.

    I also chased up the Immunology referral and it's a good job I did. Immunology didn't have a record of it but Infectious Diseases say the letter was send on 16th June. I've got them to fax a copy over so hopfully I should get an appointment soon. I noticed on the Immunology website it said they treat Reiters Syndrom which is another name for Reactive Arthritis so hopefully the doctors there will know what to do with me.

    Thanks again for your help and advice, it's much appreciated!

    Clair
  • ironic
    ironic Member Posts: 2,361
    edited 30. Nov -1, 00:00
    Hi Clair, Well done for being so pro active. It really is not right that you have had to go on like this for so long now.

    Fingers crossed that your appt comes through soon. Hope the blood tests come asap so you have all the information to hand.

    Best of luck,

    Lv, Ix
  • clairc
    clairc Member Posts: 90
    edited 30. Nov -1, 00:00
    I've been taking the Naproxen for 3 days but it doesn't seem to be helping much. Today I've taken Naproxen, 30mg Codeine and paracetamol and I'm still in a lot of pain.

    I phoned up the doctors, told the receptionist what the problem was and what drugs I'd taken and asked to speak to a doctor on the phone. I just got a call back to say the doctor had left a prescription. I asked what for the and the receptionist said Codeine. *rolls eyes*

    The receptionist is going to speak to the doctor again but she said the best she could do was get me a home visit tomorrow afternoon.

    What do you have to do to get decent medical treatment???

    A very frustrated and hurty Clair
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    I sympathise about the pain clairc, I've had it constantly for years, despite various meds and the painkillers. It never stops, it just gets subdued by the drugs. One has to adjust, and that takes time.

    Naproxen is very good for some, not so good for others, but three days isn't long enough to assess which camp you will fall into! I had excellent results regarding reducing inflammation with a med called Celebrex, which was prescribed for me by my consultant. That worked wonders but it is expensive, so after a while my GP changed me to naproxen, far cheaper for him but absolute rubbish for me. I then also had to take opmeprazole, to protect my stomach. I do wonder if the cost of those two drugs is still less than the cost of Celebrex alone. I suppose it must be.

    My arthritis remained undiagnosed for 9 years. It turns out I have PA, but without the P part (psoriasis). I'm on DMARDs, oral steroids and an anti TNF med, but the results are less than startling. I wish you well. It is a merry-go-round that no-one wants to ride. Dreamdaisy
  • clairc
    clairc Member Posts: 90
    edited 30. Nov -1, 00:00
    I think I'm going to stop taking the naproxen. I've had gastritis before and despite taking lansoprazole it's still giving me stomach ache. The benefits are not worth the side effects.

    The doctors surgery got back to me again. I am ok to take tramadol and if that doesn't work I can phone the surgery in the morning and ask for a home visit.

    I've taken some and it's helping a little but I'm very drowsy. It all happens at the worst possible time doesn't it. My PA has been off sick all week so I have no help this afternoon, my mum is on holiday so she can't help and my husband doesn't get home from work until 6.30 tonight. I'm home with my 4 year old at the moment and my other 2 kids will be home from school at 3.30pm. All I have to do is stay awake.....zzzzzzz
  • woodbon
    woodbon Member Posts: 4,969
    edited 30. Nov -1, 00:00
    Hi, Their seems to be a lot of illness around lately. I think the hot weather is getting us down, even if you haven't got anything else to cope with, let alone when the pains get to you and the heat drains what wev'e laughingly got as strength! :x Sorry this is so misrible, I'll stop depressing you now! :wink:

    Hope we can have a good storm and clear the air!
    Love Sue
  • speedalong
    speedalong Member Posts: 3,272
    edited 30. Nov -1, 00:00
    Settle the kids infront of long DVD with some of their favourite snacks and they wont notice you having a snooze. Well done on chasing up the appointment - there is hope on the horizon.

    Speedy
  • clairc
    clairc Member Posts: 90
    edited 30. Nov -1, 00:00
    Well it looks like I'm going back to the doctors again tomorrow, this flare up just keeps getting worse. I'm still taking naproxen and tramadol but I'm still very stiff and in quite a lot of pain.

    This morning I was in a lot of pain and had a low fever. I phoned the out of hours service and had a home visit from the nurse practitioner but he said he couldn't do anything, I probably had a virus and that I needed to see a doctor for a medication review.

    I'm not sure what the GP's can do. I'm already on strong pain killers which aren't helping, it takes a couple of weeks to get in to see the rheumatologist (who couldn't help me anyway) and I really don't want to end up in hospital again.

    My DH is unwell with a virus at the moment so I haven't had the chance to rest and one of my PA's has been off for a whole week and I don't know if or when she's coming back so I'm stressed about that too.

    It never rains but it pours eh?
  • skezier
    skezier Member Posts: 11,333
    edited 30. Nov -1, 00:00
    Hi Clair,

    I really hope they give you a bit f help soon! Good luck with the doctors and please push for some help as you sound as if you need some.

    If at all poss try not to get stressed as that will make the flare that bit worse.

    Will keep my fingers crossed for you and the docs tomorrow. Cris x
  • gordie57
    gordie57 Member Posts: 5
    edited 30. Nov -1, 00:00
    Hi Clair ,

    I've just joined the forum and I to have Reactive Arthritis, and in fact now that I understand more about it ,I realise I've had it for maybe 10 years. My GP identified a gene HLA B27 which pre-disposes me to arthritis. At my worst point I could barely move and had no obvious sign of swelling in my joints, nor fluid which could be drained. Although in the past I have had my knees drained twice.
    It's been in my eyes (worst) and in my '' bits''. I'm now on Methotrexate which took about three months to have any beneficial effect. Now though I move freely although still in constant but moderate pain.
  • clairc
    clairc Member Posts: 90
    edited 30. Nov -1, 00:00
    The doctor came out to see me today and prescriped gabapentin. I've been feeling pretty unwell today , completely drained of energy, really drowsy and very unsteady on my feet. I had a fall earlier, I lost my balance closing the bathroom door and fell sideways onto the bottom of the stairs. I bumped my shoulder a bit but apart from that I was unhurt, just a bit embarrassed :oops:

    The doctor said my blood test results from last monday showed my ESR and CRP were both raised which indicate inflammation so she agrees I'm having another reactive arthritis flare. She thinks the immunology referal is the way to go. I hope the appointment comes through soon! In the meantime I just keep taking the tablets...

    Gordie: that's interesting what you said about having no swelling, I'm exactly the same. I think I've had this thing a long time too. 16 years ago I ended up in hospital with very similar symptoms but because I was diagnosed with ME they put it down to an ME relapse. They didn't make the connection between the infections and flares but then you don't think to mention that you had a sore throat 3 weeks ago if you go to the doc with joint pain do you?
  • dorcas
    dorcas Member Posts: 3,515
    edited 30. Nov -1, 00:00
    Hi clairc,
    I've been following your thread....I'm so sorry..what a rotten time you're having. :(

    Reiters' is one of the sero-neg arthropathies isn't it so the arther won't show in your bloods and doesn't always immediately cause joint damage visible on x rays.....despite the obvious pain.
    I can't understand why rheummy are so dismissive; after all lots of us have sero- negs..PA, AS for example... but still attend rheummy and get treatment. :shock: :roll:
    treatment can include anti tnfs which would avoid any gastric issues you have as they are administered by sub cut injection or infusion.

    I had a bout of reactive arther some months ago I ended up in hosp with a septic wrist that had to be drained and treated and the source of infection also treated. The meds given to me then were 2 broad spectrum antibiotics iv then tabs for 6 weeks, steroids and immuno-suppressants.

    If your docs have decided that an immunologist is the most appropriate...then why can't your doc phone and ask for you to be seen urgently. :?: especially as the doc knows you have a pelvic inflammation which is classic for Reiters' and need effective treatment now.

    I'm sorry to 'go on' but am really annoyed and upset for you.

    love n hugs,

    Irisxxxx
  • gordie57
    gordie57 Member Posts: 5
    edited 30. Nov -1, 00:00
    Hi Claire,

    I think I was quite lucky to have a GP who was on the ball and noticed a few symptons in my history which gave him a clue.
    Anyway , good luck and I hope to hear some positive news soon.
    Remember , you are not alone.

    Gordie
  • clairc
    clairc Member Posts: 90
    edited 30. Nov -1, 00:00
    Thanks for the replies. I'm feeling a bit better today, woke up in a lot of pain but the drugs seem to be doing the job. It's quite strange really, I feel really doped up like I'm quite tipsy and I can still feel the pain but I don't care about it! I'm having to be really careful not to do too much and I have to remind myself that the pain is a signal that I need to rest.

    dorcas: I'm really frustrated about the care I have received but too be honest I'm used to it. I've been ill for years, I was diagnosed with ME 20 years ago but I think I've actually had reactive arthritis all this time. The ME relapses I had involved widespread pain specifically in my knees, right elbow, feet and hands but they could never find anything wrong.

    I saw a rheumatologist in 1994 and I have a copy of the letter he sent back to my GP. He said that there was no sign of inflamation or arthropathy (even though I remember crying with pain whe he examined me) and basically suggested that I liked being like that seeking medical help was just reinforcing my sick role behaviour!

    Unfortunately there are still doctors out there who feel that way. Earlier this year I was told by a local GP that people with ME do best if they stay away from doctors, especially specialists. Hopefully immunology will take me a little more seriously!
  • Rainbow77
    Rainbow77 Member Posts: 275
    edited 30. Nov -1, 00:00
    Hi there

    I have logged on to this website for so long - probably about 6 months but I have reactive arthritis. Had it for 4 years, since JUne 2006 and was off work for 2 and 1/2 years. Went back last January - so there is light at the end of the tunnel.

    People on here who know me will know the fight I went through to get the right treatment. Rea is very rare, most drs and some Rheumys know very little about it. So don't let them fob you off that they can't help you. To cut my long story very short, basically my GP, fed up with my local Hospital got me referred to Hospital with specialist in ReA. They sorted me out - I take a combination of Sulphasalazine and Hydroxycholoquine and have done for 2 and 1/2 years and i am actually in the process of being weaned off it know as my symptoms and my inflammatory markers are so much improved.

    I don't know where you live but I would research a Rheumy near you that specialises in Rea and try and get referred there.
    Take care X
  • clairc
    clairc Member Posts: 90
    edited 30. Nov -1, 00:00
    Thanks for your reply Rainbow. I live in Worksop, North Nottinghamshire. I don't know if there are any experts in my area. The immunology department at Northern General Hospital in Sheffield appartenly treats Reiters syndrome and I've been referred there so I'm hoping they can help me.

    I think I may have had ReA for 20 years. My ReA is triggered by strep and as a teenager I had a lot of strep infections. On 2 occasions I had a lot of pain in my achillies tendon, the doctor thought I had sprained it but I could never remember injuring it. In 1990 I was diagnosed with ME. I had symptoms of fatigue, malaise and aches and pains in my joints. All the blood tests came back normal so they said it was ME.

    In 1993 I started having pain in my knees and trouble walking. I was referred to physio but that made me worse. I was given a walking stick but I had trouble using it as I also had pain in my wrist and elbow.

    In 1994 I had 2 major relapses and was admitted to hospital. I had severe pain in my knees, elbows, hands and feet. I was so weak and exhausted I could barely move. I was sent to a rheumatologist who examined me. He said there was no sign of inflammation or arthralgia even though I screamed through the examination it was so painful. He basically thought it psychosomatic, that I enjoyed being like this and that I should do more, but doing more always made the symptoms worse.

    Over the years I became more and more disabled. I had more relapses and more infections but I never made the connection between the two until last year. I'd had a sore throat for 3 weeks and it wasn't getting any better so I went to the GP who by chance did a swab. It was positive for strep but by the time I went back for the results I was crippled in pain again. I had antibiotics and was admitted to hospital 2 weeks later as it just kept getting worse. In hospital I was diagnosed with post strep reactive arthritis. The symptoms were just like the ME relapses I'd had years ago.

    I've had 5 more flares since last year, this current flare being the worst. I don't know what to do to get better. The rheumy sent me back to my GP because I needed to find out why I keep getting infections. he coudln't treat me because there was no deformation of my joints and I had no swelling to drain fluid from. The infectious diseases doctor said there is nothing wrong with my immune system and they couldn't help either so now I'm waiting on an immunology appointment.
  • gordie57
    gordie57 Member Posts: 5
    edited 30. Nov -1, 00:00
    I've learned more on REA in the three days I've been on this forum than in previous years.
    All the symptons are consistent . I had terrible trouble with my achilles for years and had a variety of treatment's. Was assumed to be a sports injury but I had no recollection of any impact on my achilles!
    I wonder how many other suffers have the gene HLA B27 , I have ,as I have mentioned before.
  • Rainbow77
    Rainbow77 Member Posts: 275
    edited 30. Nov -1, 00:00
    Hi Claire

    Your symptoms are classic for ReA. Just getting the diagnosis is a step in the right direction. It effects people differently depending on the bacterial trigger and how it is treated. I had food poisoning with campylobachter that went untiagnosed for 9 months and bascially caused havoc across immune system and body and my consultant said it was like a 'typhoon' that has ripped through the body and left destruction everywhere and it will take time to heal.

    It affected me everywhere, hands, wrists, hips, pelvis, knees and feet. At my worst I could not walk down the road to the shop, felt like I had the flu all the time, hot flushes, mouth ulcers etc. I went to my local hospital and they basically told me to go home, take paracetomal and get on with it. I lead a very full and active life before I was ill so found that really hard. I was referred to london and after getting the right treatment (dmards) things are much better for me.

    The immune system is a very complex thing and basically it starts attacking the joints and it associates them as hostile and this may be because the bacteria has a similar make up to the joints and muscles and so it starts attacking them wrongly. Some research suggest this may be because we may be allergic to the bacteria. Just 1 theory.

    Hopefully they will be able to help you - but you may need to be treated aggressively with dmards to get the immune system back in check. They like to do the wait and see method, but in severe cases the sooner they treat it aggressively the better. I totally trust my Rheumy team now and more research has gone into the disease and so hopefully treatment will be better.

    Take care xx

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