Reactive Arthritis

[Gridster1]

Hi All

I have been on here a while now but not done any post.

I have been Diagnosed with ReA.

my story is that last April i had a severe bout of Dysentery which lasted around 2 months. a month or 2 later i woke up with stiff and painful fingers in both hands. went to the doctors and did bloods which show my RF was above normal but low in term of causing issues and all the other bloods were fine. Sent for an x-ray in August and showed no signs of deterioration. Doctor said its possible i have RA but then googled it and could see alot of horror stories, so i then decided to go private as my GP had put me on the waiting list but would have to wait 8 months. Private Rhumey checked me over asked about illnesses and he said that i had likely got ReA. he gave me a steroid and it worked a treat, but could still feel the pain in fingers if worked hard enough on them, this lasted from Sept to Jan and then the pain was back. i carried on till April as i had NHS rhuemy appointment. by this time it had spread to me left hip which became very painful and causing me to limp. so she checked me over and requested another blood test and hip xray. she came to the same conclusion as the other Rhumy. She explained that my RF bloods were low and the rest was normal. Xray came back and it showed slight OA in the hip but shouldnt cause issues and put me in for Physio, this was april and still not heard anything. she aid for me to go back and see her in Oct so again a long wait and also she gave me a steroid which has worn off.

only thing i am concerned about is -

RA usually symetrical which is the case with my hands both same. so why was RA ruled out?

ReA usually last a few months, its now coming up to a year since i have had this and doesnt look like its getting any better at the moment.

Is it worth getting another xray on my hands as this would have been done a year ago so i assumed that they would have used the original xray as a marker?

Has anyone on here got ReA and have you completly recovered now?? if so how long have you had it for?

Doctor has given me Naxproxen. shouldnt i have the stomache protector stuff?

are my fingers being damaged as i read that after 6 months you should go on DMARDS

Sorry for alot of questions but it just feels like i am not getting any where and living on hope that its ReA. and Otober is a long way off at the moment.

Dave

[oldtimer]

I'm sorry to hear that you are still having problems. You really need to discuss these worries with your GP, especially about whether you need a stomach protector with the naproxen. You don't say which blood tests you have had - although blood tests, as I'm sure you are aware, are not the whole story. X-rays too are not much help unless erosions are occurring and that is unlikely unless the disease is very active.

So you need to discuss with your GP and perhaps press for an earlier rheumatology appointment if the indications are there. But it often takes time to make an accurate diagnosis and it's very frustrating while that happens - as well as causing anxiety about long term prospects. But it does sound unlikely that you are actively having damage to the joints currently.

[Gridster1 in reply to oldtimer]

Hi Oldtimer

With regards to blood test I thing it’s ccp and ecr which both were negative. I was also negative for HBLA I think that’s what it is!

I certainly don’t feel as bad as other people on her but I’ve had it a year and I assume it’s not so bad early on. I can’t say I am getting worst, but I also can’t say I am any better than I originally was.

Yes it’s very frustrating as I know there isn’t any confirmed test to say you have ReA or any other auto immune disease.

I appreciate your reply. If I get hold of blood test I put the values up.

Dave

[Kdbarnes in reply to Gridster1]

Perhaps you are sero-negative RA?

[Gridster1 in reply to Kdbarnes]

HI,

I hope not but i just wish they would identify what exactly i have.

[cuddley2020 in reply to oldtimer]

hello

this sounds very much a similar story to mine, I was diagnosed with reactive arthritis 13 years ago but it changed to r/a 4 years ago, so it may change but fingers crossed for you it doesn't xx

[Gridster1 in reply to cuddley2020]

Hi Cuddly

So sorry to hear about it changing to RA.

Had your condition changed at all from when first diagnosed till now. How did they confirm RA was it because of how long you had it?

How are you feeling now are you getting treatment?

Hope I am not being to nosey

Dave

[cuddley2020 in reply to Gridster1]

no its good to be nosey, they kept saying for years it was reactive, I had a full body bone scan which reviewed active inflammation so thats why it changed to R/A, its such a nasty disease. I am well controlled now, on 25ml methotrexate, embrel and 60mg amiltriptiline, horrendous side effects tho xx

[Gridster1 in reply to cuddley2020]

Hi cuddly

Well done am glad him a way that you now know what it is. It’s horrible not knowing what you got. I am just living in hope that it’s reactive at the moment. My pain is not to bad, not taking any painkillers at the moment but the pain in not going away at the moment so I am exactly a year in now. Won’t be seeing a rheumatologist until October and now will probably get fobbed off with reactive again. I had dysentery but my GP couldn’t find a reason why it had it as I had lots of blood test and showed nothing,

Dave x

[Pauk in reply to oldtimer]

Hi there my Dr started me on Naproxin , this didn't help at all , he then prescribed co-codanol to take with them , there wasn't much improvement. I have now started taking cbd oil ( cannabis oil without the high) this has made all the difference, my pain has dropped dramatically i get to sleep without tossing and turning for hours on end until in comfortable. All I can say is the oil has transformed my standard of living greater than I could of wished for. Give it a try it could do the same for you as it had for me

[Gridster1 in reply to Pauk]

Hi Pauk

what was the cbd oil strength. how much of it did you take and what make and cost

Dave

[Pauk in reply to Gridster1]

Hi there, the oil strength is 2.75 mg I think its the lowest strength . its made by Jacob hooy , I usually take between 4 & 8 drops depending on what sort of day I'm having you can take up to 15 drops in a day. It costs around £20 for a 10ml bottle which is about 240 drops from Holland & Barret but it is half price until Tuesday . you can get bigger bottles and greater strengths. Its well worth giving it a try, its been very beneficial for me and I've NOT had to take any painkillers since I started using it.

[Espresso123]

I suffered from shoulder pain for a year before anything else happened then suddenly my knees felt like they were gone on bone and I couldn't move my wrists from so much pain. My primary finally sent me to rheumatology and a week later he diagnosed me with ra I was as stiff as the tin man in the wizard of oz.. the labs came back positive . After 3werks of prednisone. I was starting methotrexate shots ,still stuff for a while some days ,but not like that first time.

[Gridster1 in reply to Espresso123]

Hi Expresso

so this came over you all of a sudden? nothing positive has come back for me so far. but i feel i am just waiting for something to happen. I rather start Methotrexate before it does to much damage

[Gridster1 in reply to Espresso123]

How is the pain now since on medication? have you improved, are you still feeling pain ect