reactive arthritis

Bones, joints and muscles
1

I was diagnosed with reactive arthritis 2 months ago after a bowel infection (food poisoning during chrstmas holiday in egypt) I thought ReA was supposed to clear up between 3 and 12 months, by the looks of things it doesn't.

Inflammation first started in my heel then big toes, both knees, slightly in fingers and now top of neck, giving me awful head pain and numb arm wen wake up.

Iv'e had 3 steriod injections which give you false hope as the pain goes only to coe back in about 3 days.

I take 3 diclofenac a day

1 tablet to minimise bleeding due to diclofenac

4 Sulfasalazine (started 1 a day increased to 4 over a month) only been on sulf a 5 weeks, no side effects but no ease of pain yet.

I take upto 8 tramadol a day for pain, these stop the pain but are very strong they make me really dizzy and I find it hard to sleep.

Is there anyone out here whos symptoms of ReA have gone, need lots of hope.

I have been sick from work for almost 3 months, I'm a 32 year old teacher and find it impossible to teach at moment with pain or feeling I get from painkillers. I was a fitness fanatic too, went to the gym 5 times a week loved it, I haven't been able to go for 3 months, really frustrating, I really want to hear from someone with hope please.

I am HLAB27 positive and my protein levels are around 150 but have been as high as 190.

2

i am 36 yrs old with 3 children under 5. i was diagnosed last sept (2006) with rea. with in a week i was bed bound usind a commode and in terrible pain. my gp did his best with what he could prescribe lots of painkillers of which i took too many of but the pain was like walking on broken hot glass. the hosp took alot of persuading that i was actually ill but finally i was taken seriously. 1 steroid jab and 5 months on steroids and now on methotrexate i have put on nearly 3 stone which doesnt help, i have it in my left hand and both feet and left ankle.i have also got strange red blotches over my feet and ankles which can be tender at times, the hosp have no clue what started it but i have put it down to tonsilitus which i had both times prior to the flare up of rea. i have started riding a bicycle as this is easier than walking and doesnt take me too long to take kids to school as trying not to rely on car. i am slowly getting better but i have good and bad days. i did have this about 15 yrs ago (undiagnosed) but nowhere near as severe but then again i was younger and fitter then. i hope this will get better but at the moment i feel like an old women trying to look after my young family. i just keep going even if slowly.

3

Don't worry things will get better!

Like you, I got reactive arthritis from food poisioning when I was only 20 (I am 29 now)

I had many, many joints affected (knees, ankles, wrists, jaw etc) and ended up in hospital for a few weeks. Was treated with painkillers, anti-inflammatories, sulphasalazine, steriod injections.

The worst of the pain went within about 4 months, but I was actually unwell for about a year in total (remaining aches, severe fatigue) and had to have time out of university.

I made a good recovery, although I was left with joint damage/some restricted movement in my right hand. I felt actually quite lucky this was the only damage, as people with a permanent arthritis have to deal with so much more ongoing pain/damage.

I found cod liver oil taken daily to be really helpful, as well as sticking to a very good diet (no processed foods) and lots of sleep.

I have for the most part been well since then, but I have had other (not as severe) flare-ups of reactive arthritis (cause unknown) from time to time. I am currently suffering with some knee, wrist and jaw pain. Although it is uncomfortable, I have not had anything that has restricted my everyday life too much and I do not take permanent medication, just when I need it.

All my research has shown people with reactive arthritis in most cases do get better within a few months from flare-ups, so try to stay patient and keep positive..... x

4

Meant to say, my message is for Brella....

5

Hey Brella,

My reactive arthritis came from Clamidya and was mainly in my left knee - took them ages to diagnose, and in the meantime my knee was swollen beyond recognition, however, after a course of antibiotics, to clear up the Clamidya, the swelling and pain decreased and I was active and walking again within 6 weeks. I too am fit and active so understand how awful it is not to be able to go the gym. I have a history of arthritis in my family so know how dehabilitating it can be. Keep positive and good luck x

6

[quote:5b24e8b0e3=\"tracy\"]i am 36 yrs old with 3 children under 5. i was diagnosed last sept (2006) with rea. with in a week i was bed bound usind a commode and in terrible pain. my gp did his best with what he could prescribe lots of painkillers of which i took too many of but the pain was like walking on broken hot glass. the hosp took alot of persuading that i was actually ill but finally i was taken seriously. 1 steroid jab and 5 months on steroids and now on methotrexate i have put on nearly 3 stone which doesnt help, i have it in my left hand and both feet and left ankle.i have also got strange red blotches over my feet and ankles which can be tender at times, the hosp have no clue what started it but i have put it down to tonsilitus which i had both times prior to the flare up of rea. i have started riding a bicycle as this is easier than walking and doesnt take me too long to take kids to school as trying not to rely on car. i am slowly getting better but i have good and bad days. i did have this about 15 yrs ago (undiagnosed) but nowhere near as severe but then again i was younger and fitter then. i hope this will get better but at the moment i feel like an old women trying to look after my young family. i just keep going even if slowly. :wink: :wink:

7

Ken, we don't pass on postal/e-mail addresses via the open forum. To be able to do this you would need to register with the forum (click Register in the menu list below the green banner above). You and other registered members will then be able to communicate with each other via Private Messaging (PM) or e-mail.

8

Hi.......I have recently posted my own experience of reactive arthritis under my Patient UK name Melody. If you decided to undertake a similar experiment involving a low-fat diet I would be most interested to hear of the outcome. Best Wishes.

9

Brella ,

This is Kevin see my posting of the 2nd March .

Have you not tried Prednisolone ( Medrol by Pfyzers ) , you'll see several postings indicating this medication as having given relief . There's also another product that I mention in my posting , that I've not tried but is supposed to replace favourably the above .See what your GP says .

Hope the support you've been getting from the other contributors is helping you along .

All the best

Kevin

10

Im just on the cusp of being diagnosed with reactive arthritis - I say on the cusp as Im still awaiting the results of tests - but it seems that all I have read so far points to it.

10 days ago I couldnt even walk- nor lift a cuppa - seems like every viable joint blew up in response - I was given codiene and diclofenic and later that week moved onto steriods. The swelling has abated but I still feel as though its lurking about my joints with aches and pains Ive never felt before.

Now I read that this isnt a one off event - that it can continue for a longer period than I care to think about. Im feeling rather despondent as prior to this I had an active life. An energetic 3 year old and mad bouncy dog.

Does anyone out there have any words of advice or something to uplift?

11

Hi

On 1st Jan this year my left ankle was aching. Hobbled about for a few days then off to A&E unable to walk (bank holidays so doc not open). I was advised torn ligument and sent away with crutches. I complained about ache in other ankle and this was put down to putting extra strain due to left ankle.

The following weekend, both ankles like elephant feet, wrist very painful and swollen finger. Sent back to A&E to be told they think Reactive Arthritis. Given co-codamol and anti anti inflammatory also scans taken of ankles. By this time I have never looked so bad, in agony, took an hour to get off house, crying my eyes out in the hospital (was in pain and they were just looking at me!) hadn't left sofa in a week and had to use a bucket for a pee! Worst experience ever.

After three weeks sent to Rheumatology Dept at hospital. My GP feared it was the start of rheumatoid arthritis. At this stage I am at wits end - before 1st Jan I was at the gym six days out of seven and I'm 31. Went from really fit to criple.

Waited one month on appointment. By this time I am determined that thing was not going to take my youth(ish). I went back to my personal trainer and focussed on low impact exercises.

At hospital had more scans (bones and chest), bloods and urine. Up to high 90!

All results came back clear, the source will always remain a mystery. They reckon I got food poisoing or a virus Nov/Dec (un-noticed by myself). I hadnt been ill since 2003 but weird I had fever the week before the arthritis hit so I am in two minds as to whether it actually does take a couple of months to surface.

So here I am, 87 days later. I am back to Body Attack twice a week, LBT twice a week, cycling 50 miles every week and spin/gym in between. I ache still a little in ankle and wrist. They said 3 months full recovery so I am hopeful this will pass but a little sneeky feeling that it may be with me for good now but not the end of the world.

Yes there is light at the end of the tunnel. As soon as you can get back on your feet try your best to get back to fitness. When I first went back to exercise class I had a corner to myself, I was all over the place - folk couldn't believe their eyes but practice makes perfect.

I am scared this will return - I take vit c every day and try and have a good staple diet - porridge for my breakfast and mum's lentil soup for tea plus lots of fruit.

I hope my post has helped, I read 1000s of these to try and understand what was wrong with me - focus on getting healthy and stay stong x

12

and yes the tramadol - spent many a daze on these things! I stopped taking the pills as soon as I could cope with the pain

13

They say 95% of people lose reactive arthritis after six months. Treatment is given to try and minimise joint

Damage. There are three brigs they have to try before going on to more expensive ones - sulphalazine,

Methotrexate and Hydroxichloroquine

I contracted this awful disease four and a half years ago after a virus infection. My ankle became the size of an elephants and was agony. The doctors had no idea what it was, I was sent for an xray and given pain killers. Over the next few weeks the swelling travelled up to both knees which were unrecognisable and then to my hips. I went to the doctors on many occasions but was just given pain killers until at long last six months later I was referred to the Rheumatologist. Two minutes after walking in he told me I had RA and that he

could help. I was given a steroid injection, pain killers and sulphalazine. At this time I was screaming in agony, unable to walk or climb the stairs. The sulphalazine made me feel very I'll so had to stop it and went on to hydroxychloriquine instead. I also suffered the red rash on my feet which is a known symptom. I was on steroids for years eventually weaning myself off them as I was worried about my bones.

Four years later I am not cured but manage it. My knees are ok as is my ankle and the damage is minimal.

Unfortunately the same can't be said of my hips. I am now awaiting total hip replacement of both hips as

they are totally damaged. I have had an injection straight into the worst one to tide me over until the first op which has really helped and I still take numerous pain killers and the rheumatologist wants me to take loads more tablets and use a pain patch. The Orthopaedic surgeon says no to bother as they only thing that will

work is replacement and to do it now when I am young enough to get the full benefit from it.

It is a nasty disease but can be managed but you need to find the right Doctors and Specialists to help.

14

I am fighting with ReA due to chlamydia infection. Everything started in July 2012. It took me awhile to find a doctor who can treat this. My left foot is swollen and MRI shows fluids within the joints. I also have a pain that migrates around my body. My doctor is treating me with antibiotics and I am also taking sulfasalazine. This is my second week on it.

Can someone share their experience?

And how are they feeling now?

The frequency of relapses

And can we have a "normal life" with this condition?

Is this condition temporary of for life?

15

Hi, Iv had RA for about 4yrs now after having food poisoning. At the beginning it only affected my knees , thumb and wrist , I was doing alright for a while after being on sulfasalazine and methotrexate for quite a while , I also take tramadol , lodine and amatripteline. In august I had steriod injections in both knees and a about 24cc of fulid removed from one of them , the steriod injections in my joints seem to help me the most for the pain relief .

I have just gotten used to being in pain so just try and get on with things the best i can I am 33yrs old and my youngest is only a toddler so it can be very hard trying to keep up with her .

I dont think i have got it under control yet , there was a good few months when it was ok not to much stiffness or pain . Just about 7wks ago i started getting a stiff neck swelling in my feet and ankles so I metioned it to my consultant at my appointment on the 9th of this month, sent for xrays and upped my methotrexate and changed the anti inflamatory i take and iv to go back in 4 wks .

Since i was there I can honestly say I dont think I have ever been in so much pain , the pain in my neck has travelled down the right side onto my shoulder , my thumb has never been so swollen , cant wear most of my shoes because my feet are so swollen my toes dont even bend . My husband says that Im walking like a penguin lol , He trys to make me laugh because right now i feel like crying most days , I get frustrated trying to do the simplest things . Everything takes so much longer sometimes i cant leave the house for days I am in that much pain .

When i was first diagnosed I was told because I also have the hbla27 gene that it can take a while to get this under control , but i didnt think after 4yrs i would still me in so much pain .

Through reading other peoples storys i know there is light at the end of the tunnel its just taking longer for me , so hopefully my next visit to the consultant will be a good one and I can finally get the disease under control .

16

Personally for anyone taking it I'd get off the Tramadol and go to the far more modern Targinact.

It's from same opiate family but has far less of a 'bunging up' effect on your bowels and doesn't seem as brutal as Tramadol.

17

Hi,

I know you posted your message a few years ago and I sincerely hope you have recovered by now. In the unfortunate even that you have not, then may I point you in the direction of the following book by Barbara Allan: Conquering Arthritis. Available on Amazon - have a look at reviews of customers who have also suffered and are now cured after discovering the cause. If you check amazon you will see more reviews there. She is a former sufferer of reactive arthritis (Reiters Syndrome) and suffered for years (11yrs if I remember correctly) and found out that all reactive arthritis is caused by a food allergy that you can be tested for. She went on a green juice fast for about a week and was pain free 3 days into the fast. She then discovered that the illness is diet related.

Basically, a combination of things can cause your intestinal tract (gut) to become leaky (known as leaky gut syndrome) and when there are tiny holes formed in the gut then some larger food particles can escape into the blood stream. When this happens, your immune system recognises that something foreign is in the blood and issues an immune response to attack the foreign substance. Pieces of food should not be in the blood, they should go through the gut process (something like - stomach - duedenum - liver etc and then get asssimilated into the blood once it has all been broken down to provide nutrients to the blood).

There are also other causes that can cause reactive arthritis (bacteria from root canal treated teeth - in this case remove them, overly clogged liver with liver stones - in this case do a liver flush as described by Andreas Moritz in his book the amazng liver and gallbladder flush, mercury poisoning from fillings - in this event remove them from a hollistic dentist and use bentonite clay baths and internally - food grade - to detox heavy metals) but these are not as common. If you don't heal on the strict juice fast then you will need to look deeper and the 3 suggestions above should have you covered.

I hope this information is of benefit to you and all the best to those that are suffering from this aweful illness.

In health always,

Azim.

18

Well said Azim.

Listen people, your diet is probably your problem. I know some of you will think I'm over-simplifying things, but I had a similar problem at age 21. I went to see the most brilliant man who tested me for food allergies and put me on a strict diet. Within a year I was totally pain free. Since then I have run three half marathons, spent 13 years in the T.A., etc., etc.

This man was Gwynne H. Davies. Google him, buy his books, but more importantly, get an appointment with one of the people he trained because he's now retired.

Don't think of this as some sort of quack remedy. Please realise that the doctors have NEVER cured anyone with arthritis. They just give more and more powerful painkillers.

The first thing I suggest is stop taking ALL dairy products. Just totally cut it out. There are alternatives if you must have milk (almond milk). Be VERY strict about this because there is milk in so many food stuffs. Also, eat lots of fresh fruit and veg, and NEVER eat anything out of a tin. Try it. What have you got to lose?

I am not some insane person who owns 75 cats and wears flowers in my hair. I am an engineer and mathematician and I don't believe in most alternative therapies. This isn't one, it's just plain sense. We are what we eat.

And get an appointment with one of Gwynnes people.

Good luck. And as Gwynne says in his books: YOU DO NOT HAVE TO LIVE WITH ARTHRITIS.

Kindest regards,

Ian.

19

Can anyone share an update on their Reactive Arthritis?

I developed Reactive Arthritis over a year ago and I still can't walk.

Thank you to anyone willing to share!!!

20

Hang in there, things do get better. Like you I could virtually do nothing (61/2 years ago) but things have

gradually improved with the help of medications - see previous posts. I do have joint pain and am due to have some replacements but I can do most things although I will suffer the next day and do not have the stamina I had before. I hardly take any drugs any more just prescription co codamol and only twice a day. Compared to the early days with swollen joints and agony today things are good. Like someone else said I do walk badly (like a penguin) and use a stick for distance or on a bad day but things are good. Take heart, it takes time but you will get there, work out what drugs suit you and move as much as you can and stay positive. Things will

improve.