Reative arthritis

stepdeb

Hi everyone,

I'm new to this site and have read many messages which have been very informative about arthritis.

I have had ReA for over 2 months now and was told last week it is chronic. I still can't walk properly as both knees and an ankel are affected as well as being stiff and in pain in shoulders, neck - well most places really!!! I was initially put on steroids which made no difference and now am on Methotrexate.

I suppose I would appreciate anyone who has gone through similar to let me know what the future may/may not hold? Does this mean I will have to be on Methotrexate for ever? Is this similar to rheumatoid arthritis? I guess it serves me right that I was originally told that ReA resolves itself within 3 - 12 months and I believed that. Now I don't know what is in store. I can't walk much at all because of the pain (although have to say that the last few days the swelling has gone done, but pain increased), can't get out and feel very isolated.

Sorry for feeling so sorry for myself. I know that many of you have had forms of the disease for many years and struggle on.

I would appreciate any feedback.

Many thanks
Debbie

frogmorton

Hi Debbie
Glad to meet you! and welcome to the forum. If you've been peeking you will know how nice and supportive everyone is here.
I don't know much about Reactive, but like you thought it could resolve, but the helpline would know.
Either way you must be feeling very shocked at the moment. This arhtritis struck me out of the blue too - and I did nothing but cry and feel desperately sorry for myself for weeks.
I know I've said it before, but I don't know what I'd have done without this lot to get me through (Elna being the main one)
For now I am glad you are getting treated and hope that the meds work well for you.
There are old threads about reactive so you could do a 'search'. Get loads of info and post on here for us lot to support you.
Take care
Toni x

stepdeb

Hi Toni,

Thank you for your support - yes I guess I do feel shocked. It's trying to cope with not feeling too bad on one day and feeling that I can cope, then in tears etc the next.

As you say what I have read this group is supportive and I am glad to have found it.

Again, many thanks.

Debbie

frogmorton wrote:

Hi Debbie
Glad to meet you! and welcome to the forum. If you've been peeking you will know how nice and supportive everyone is here.
I don't know much about Reactive, but like you thought it could resolve, but the helpline would know.
Either way you must be feeling very shocked at the moment. This arhtritis struck me out of the blue too - and I did nothing but cry and feel desperately sorry for myself for weeks.
I know I've said it before, but I don't know what I'd have done without this lot to get me through (Elna being the main one)
For now I am glad you are getting treated and hope that the meds work well for you.
There are old threads about reactive so you could do a 'search'. Get loads of info and post on here for us lot to support you.
Take care
Toni x

ramummy

Hi there. I was diagnosed with RA last year. My husband found it quite difficult to deal with and understand so he spoke quite a lot to a collegue of his who had ReA to try to get his head around our situation a bit - maybe his colleague was one of the lucky ones but after being very poorly for over a year his ReA now seems to have gone away. Fingers crossed you will be one of the lucky ones too.

valval

sorry u r struck down with this cant help as mine is ostioarthritus but it is a bit of a merry go round when u r first told glad its not in your head but worried 4 the future :? stress makes things worse so try not to get to stressed out about it. hope u feel better soon keep on posting so every one knows how u getting on
val

Wonkylegs

Hi & Welcome to the forum, although I am sorry you need it!

you are not alone in finding Reactive Arthritis a struggle, and there are others who have been on here who have had to try all sorts of combinations before they fidn the right meds for them.

I am sure that if you ring the helplines they will be able to help you - they have more info than they used to, and they could give you ideas on what to ask specifically when you next see your doctor/ rheumy.

Rainbow77 had a really tough time with her Reactive Arthritis, but is well enough now to be working part time. I will try a search and bump up her thread on Reactive arthritis. If you do a search for her posts you may find other things.

hope that helps,
try to concentrate on doing what you can rather than worrying about what you can't do right now. Hopefully it will not alwyas be like this for you.

hugs (((((((((((((((((())))))))))))))))))))))))))

livinglegend

stepdeb wrote:

I guess it serves me right that I was originally told that ReA resolves itself within 3 - 12 months and I believed that. Now I don't know what is in store. Debbie

Hi debbie,

A comment on ReA on a website may help.

Unlike rheumatoid arthritis or osteoarthritis, reactive arthritis is usually a relatively short-lived condition that may last for up to 6 months and, in most cases, disappears completely leaving no problems in the future.
Plenty of info at http://www.arc.org.uk/arthinfo/patpubs/6034/6034.asp

You could also call the helpline at 0808 800 4050 who may reassure you as to what the future may hold.

Joseph 8)

Rainbow77

Hi Debbie

I am so glad you have found your way onto this site, I don't know what I would of done without it nearly 3 years ago now.

I also have chronic ReA. Mine was caused by food poisoning and I had campylobachter. My story is on the other ReA threads that have been bumped up, so I won't repeat myself!

I was very ill for a long time, I was unable to work for 2 and a 1/2 years and I have just gone back in Jan and I work part time - 2-3 days a way. I am a secondary teacher. I am now 31 - so fairly young and I am doing well. I am getting my life back. I still have pain - but it is something that you learn to live with and I try not to take painkillers - although sometimes I need to.)

There is hope, although when you are really going through it and nobody seems to know anything about it. The symptoms are very similar to Rheumatoid Arthritis and when it is chronic and persistant, it is treated with the same drugs.

It sounds as though you have already been referred to a Rheumy and he has prescribe you Meth. That is really good. Most of my problem was finding a good rheumy, getting the correct diagnosis and then being treated with Dmards. I take sulphasalazine & Hydroxychoroquine - once I had started treatment and it did take about 16 weeks to start feeling the effect, it was one step forward and I slowly regained my energy, stamina, etc and it was a slow recovery but a sure and steady one. It took about a year between being prescribed dmards and then bieng signed fit for work. (but bear in mind - I had food poisoning for 9 months before it was diagnosed and another 1 year before starting dmards - my Rheumy said that it was like a typhoon going through my body and destroying all the systems and it would take 2 years to recover - so I am a really extreme case! - don't feel special - I can assure you!)

Take each day as it comes - I am sure that the meth will start working and you will feel much better. Hopefully it will put you into remission. You may have to take it for life, I know that it a hard thing to come to terms with, but you may improve so much that you can come off the drugs at a later date - how long is a piece of string - nobody can really tell you that one. You will have to see how your body and immune system responds.

I hope this has helped you a little, if you have any other specific questions - then fire away! I don't post often, but I always read every couple of days depending on how much time I have, and I try and respond to questions about ReA - as I am known as the resident expert on here with regards to this!! he he he. Not a title I really relish, but ho - hum!!

One thing I would suggest - is taking fish oil supplements. I take 3000mg a day. I would not be without them and if for some reason I don't take any for a couple of days then I can really feel it. I get mine from the famous H&B shop - sometimes they have really good special offers and I stock up for about 6 months. 'EPA fish oil concentrate - 1000mg high in omega 3' That might be something to consider.

Take care and I will leave you in the capable hands of everyone who posts on this forum, they are all fantastic and will help you with any questions you might have or maybe you just need a rant, now and then. There is always someone who can listen!

Take care xxxx

stepdeb

Hi Rainbow and all that replied to me - thank you.

My consultant doesn't seem to know what has caused this - but I did have surgery 2 weeks before the first flare up.

I guess I'm scared of all the meds I'm on and am taking slow release morphine with tramodole and co-dydramol because of the pain - I've tried to miss out, but suffer too much the next day. Like many people it just happened out of the blue and it is really scary to have been an active person then not being able to do anything. Iast week I had a couple of days that were better and I could cope mentally and felt I could take on the world again, but this week has been really bad and now other joints are starting to play up as wel as my legs.

You are right about concentrating on what I can do, and I try when I can. Unfortunately I have autoimmune problems and guess this is another form - maybe this is why I didn't got into remission when first put on steroids as the rheumatologist expected, instead I got worse and had to be admitted to hospital as I could'nt walk at all.

~At least I can walk of sorts now Thank you for the tip re fish oil - I will try them. I am seeing the Doc again next week and should get some answers.

Thank you all for your help and support. Hopefully when I'm a bit more able to cope, I might be able to hlep others.

With best wishes
Debbie




e

stepdeb

ramummy wrote:

Hi there. I was diagnosed with RA last year. My husband found it quite difficult to deal with and understand so he spoke quite a lot to a collegue of his who had ReA to try to get his head around our situation a bit - maybe his colleague was one of the lucky ones but after being very poorly for over a year his ReA now seems to have gone away. Fingers crossed you will be one of the lucky ones too.

Hi Ramummy,

My husband is finding it difficult too and has been having to do everything around the house. I too hope I may be lucky - only time will tell. I will get back when I find out more from the Doc - and ask what he means by chronic.
Sorry that you have RA - how are you dealing with it?
God bless
Debbie

ramummy

stepdeb wrote:

ramummy wrote:

Hi there. I was diagnosed with RA last year. My husband found it quite difficult to deal with and understand so he spoke quite a lot to a collegue of his who had ReA to try to get his head around our situation a bit - maybe his colleague was one of the lucky ones but after being very poorly for over a year his ReA now seems to have gone away. Fingers crossed you will be one of the lucky ones too.

Hi Ramummy,

My husband is finding it difficult too and has been having to do everything around the house. I too hope I may be lucky - only time will tell. I will get back when I find out more from the Doc - and ask what he means by chronic.
Sorry that you have RA - how are you dealing with it?
God bless
Debbie

Hi Debbie,

I just take each day as it comes!! That seems to be the only way to deal with RA! I think your husband and mine are prob having similar issues - I'm only 32 so not only must he be tired and frustrated with having to do more around the house and so on (when previously I was happy to do it all) he must also wonder what the future will hold for us - and hopefully that's a long and happy future but a diagnosis with a chronic illness throws a major spanner in the works!

Really hope your ReA clears up.

Ju x

masaka

Hi,

My RA was originally diagnosed as reactive and I was told it would eventually go away. Then they decided that is was true RA. At its worst I had it in knees, shoulders, neck, elbows, wrists and very badly in my hands. It was grim. However once the drugs kick in it becomes managable. I know that I have got it, but the pain is much less. I don't like taking drugs but I am not prepared to live my life when I can't use most of the joints in my body. It is the lesser of two evils. I am on sulphalazine which works for me, although the RA has been very active in my hands recently. It made life very complicated as I couldn't grip my crutches which I need at the moment as I am recovering from a hip revision due to Osteo.

The only advice I can give you is to go with it. If you fight it too much you just end up exhausted. I make use of equipment to help me, and accept help from other people. If I can't cut the hedge because of my hands then so be it. I keep my energy for the things I really want to do. As far as I am concerned I make sure I make the most of the times when it is less bad, and deal with it in its more acute phases when I have to. I have had to accept some help at work, but I would rather work with help than not work.
In the last couple of years I have still managed to work and travel and do most of the things i want to do, I just need to plan more carefully and adapt the way I do some things. Things will get better.Hang in there. Hope this helps.

Regards,

Teresa

stepdeb wrote:

Hi everyone,

I'm new to this site and have read many messages which have been very informative about arthritis.

I have had ReA for over 2 months now and was told last week it is chronic. I still can't walk properly as both knees and an ankel are affected as well as being stiff and in pain in shoulders, neck - well most places really!!! I was initially put on steroids which made no difference and now am on Methotrexate.

I suppose I would appreciate anyone who has gone through similar to let me know what the future may/may not hold? Does this mean I will have to be on Methotrexate for ever? Is this similar to rheumatoid arthritis? I guess it serves me right that I was originally told that ReA resolves itself within 3 - 12 months and I believed that. Now I don't know what is in store. I can't walk much at all because of the pain (although have to say that the last few days the swelling has gone done, but pain increased), can't get out and feel very isolated.

Sorry for feeling so sorry for myself. I know that many of you have had forms of the disease for many years and struggle on.

I would appreciate any feedback.

Many thanks
Debbie

stepdeb

Hi Teresa,
Thank you for your advice. I am seeing the Consultant tonight privately so that I have time to ask him all the questions I want answered.

I still have inflammed joints and alot of pain. Have increased the Methotrexate so am hoping that in a few weeks this may help. I want to know exactly what the doc means by chronic and how he thinks this will affect me.

I think the hardest thing for most of us is that of generally being able to do things then suddenly not. In my head I want to do so much and of course on a better day do too much and really suffer the next day/s.

I will keep the forum informed about the consult and will try to optimistic that it is ReA that will go and not RA - time will tell.

Kind regards
Debbie

masaka wrote:

Hi,

My RA was originally diagnosed as reactive and I was told it would eventually go away. Then they decided that is was true RA. At its worst I had it in knees, shoulders, neck, elbows, wrists and very badly in my hands. It was grim. However once the drugs kick in it becomes managable. I know that I have got it, but the pain is much less. I don't like taking drugs but I am not prepared to live my life when I can't use most of the joints in my body. It is the lesser of two evils. I am on sulphalazine which works for me, although the RA has been very active in my hands recently. It made life very complicated as I couldn't grip my crutches which I need at the moment as I am recovering from a hip revision due to Osteo.

The only advice I can give you is to go with it. If you fight it too much you just end up exhausted. I make use of equipment to help me, and accept help from other people. If I can't cut the hedge because of my hands then so be it. I keep my energy for the things I really want to do. As far as I am concerned I make sure I make the most of the times when it is less bad, and deal with it in its more acute phases when I have to. I have had to accept some help at work, but I would rather work with help than not work.
In the last couple of years I have still managed to work and travel and do most of the things i want to do, I just need to plan more carefully and adapt the way I do some things. Things will get better.Hang in there. Hope this helps.

Regards,

Teresa