[clairc]

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

[frogmorton]

Hi Clair

this is sh*t!

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]

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]

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]

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]

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]

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]

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

[collywobble]

Hi Clair

Sorry to hear about this.

I was having a look in the Arthritis Care book I have, and it does say that when it comes to reactive arthritis, the DMARDS show most promise as a treatment.

If I were you, I'd chase up the immunology appointment, and also see about another rheumy referral. You can't and shouldn't have to go on like this indefinitely.

Keep us posted won't you? And you know we're all here if you need a good rant!!! Look after yourself,
love, Lynn xxxx

[clairc]

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]

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]

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]

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]

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]

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! Sorry this is so misrible, I'll stop depressing you now!

Hope we can have a good storm and clear the air!
Love Sue