just diagnosed with reactive athritis

mrsmeredith

Hi, I was diagnosed 2 wks ago with reactive arthritis. It seems that a severre bout of diahorrea in Egypt was caused by a nasty bug called Shigella which then went onto cause conjunctivitis and then my right knee to swell and i cuuldnt walk - was given crutches and painkillers and then 1 wk later my left foot swelled and i couldnt walk on that either. I am now waiting to be seen by a rheumatologist but my doctor has been honest and said it could take weeks!

This i do not need as the pain is just awful and i have been on crutches and housebound now with the reactive arthritis for 3 wks. Never the mind the previous 3 wks at home suffering with chronic diahorrea and conjunctivitis in both eyes!!!!!! I would welcome anyone sending me a message with any advice or experiences they wish to share,,,,,i have found that a lot of ppl just dont understand it.

Thanks for listening to me going on!

glendale

Hi, I have just joined this site hoping to find out more about reactive arthritis. I was diagnosed with it in June 08. I had conjunctivitis followed by joint pains, one finger, one knee, neck, back and both feet/toes.

I have had several different treatments for it. Firstly, I had oral steroids plus an injection, then I had more steroids, anti-inflammatories, pain killers, sulfasalazine ( couldn't tolerate full dose), more IV steroids, immunosuppressants, more steroids, rituximab, and am now waiting to try methotrexate.

I have been unfortunate that nothing really seems to work for me. I just hope that the methotrexate does. I have had it now for 7 months and whilst the pain isn't as bad as it was I am never out of pain, walking can be a problem. My CRP varies between over 100 and 35. I am sick to death of it. Generally it does improve (apparently) by around 6 months but I haven't really seen any great improvement. I certainly feel like I need further treatment.

Sorry not to really be of any positive help. I would like to find out more about it myself, especially about the methotrexate

Glendale

mrsmeredith wrote:

Hi, I was diagnosed 2 wks ago with reactive arthritis. It seems that a severre bout of diahorrea in Egypt was caused by a nasty bug called Shigella which then went onto cause conjunctivitis and then my right knee to swell and i cuuldnt walk - was given crutches and painkillers and then 1 wk later my left foot swelled and i couldnt walk on that either. I am now waiting to be seen by a rheumatologist but my doctor has been honest and said it could take weeks!

This i do not need as the pain is just awful and i have been on crutches and housebound now with the reactive arthritis for 3 wks. Never the mind the previous 3 wks at home suffering with chronic diahorrea and conjunctivitis in both eyes!!!!!! I would welcome anyone sending me a message with any advice or experiences they wish to share,,,,,i have found that a lot of ppl just dont understand it.

Thanks for listening to me going on!

Rainbow77

Hi Mrs Meredith

My name is fayann and I have had Reactive Arthritis for nearly 3 years. People on this forum call me the resident expert on it! A title I am not going to argue with but wish that I did not have it!!

My story is very long and boring!!! he he he so I won't bore you but I did have food poisoning that went undiagnosed for 9 months and so when I was treated I have arthritis in most joints, mouth ulcers and rapid weight loss. It has been a long and hard journey at times, but I am on the mend and have a new job and going back to work in a couple of weeks - so there is light at the end of the tunnel. (I am 30 years old and was a teacher - soon to be one again!!) Here is my advice for now. If you want to know anything else, just ask and you can private message me if you want.

1. Make sure that you get the appropriate treatment for the food poisoning. You have a name - so that is good - check you have the right antibiotics etc.

2. It is good news that you have a referral to a rhematologist. What you need to do between now and then is write a diary - with all the symptoms, pain levels, what you can and can't do etc This really helps to give the rheumy a good idea of what is going on.

3. Reactive Arthritis is quite rare, it only affect a handful of people in every 100.000 so it is hard to find someone who has it and equally some drs and even rheumys may of come across it but do not know enough about it to treat it properly. It also affects us all differently so symptoms can vary. It is very similar to RA but because the triggers are different - the treatment approach should be the same, but is not always.

4. In the meantime make sure you have adequate pain relief, don't suffer in silence. Rest if you need to and although this is hard at first, listen to your body. You will get to know what you can and can't do and what you need to do. Hot water bottles, heat pads, wheat bags etc are all helpful as well as painkillers. Your GP can also prescribe anti-inflammatories. These can reduce inflammation and pain.

5. Remember that you will have good days and bad days. It is like 2 steps forward and 3 steps back. I think this is the most difficult for people to understand, just because you can walk one day, then the next day you can't, it is frustrating and there seems to be no rhyme or reason. That is the nature of the disease and the fatique and tiredness can be just as difficult to deal with as the pain.

6. Eat well and try and sleep well. Have a good mattress, you may need pillows to prop u different bits etc.

7. When you see the rheumy they will probably suggest that you try anti-inflammatories first. They may take some time to work and all drugs affect people differently but if you feel that they are not helping you then persist, go back and ask for something else. Dmards (disease modifying drugs) are usually the next step. Once I was prescribed them and then put onto a combination - I continued to improve and after getting my strength and stamina back with them - I go most days without pain or the need to take painkillers. So I guess what I am trying to say is there is the right drug combination for you - but it may take time to find it and it is by trial and error.

The sooner you treat it aggressively, the sooner you will have it under control and the less damage it may cause. It can take 3-4 months for the dmards to really get working - but it is worth it in the end.

8. If you feel that you are being fobbed off and your Rheumy is not that good. then ask your GP for a second referral. Find a hospital/rheumy that is experienced with dealing with Rea. This is what I had to do and I now go to London and I don't mind travelling 2 and 1/2 hours to my appt and back again - just for 15 mins to see the dr as it is worth it and I am finally getting the treatment I need.

OK - this is now getting a bit long. Just take each day at a time and ask for help if you need it. I was so independent, but when I had this on my most difficult days I could not do the cleaning, cooking etc. Asking for help was hard, but now I see it that you need to ask and most people are willing to help. Be honest with family and friends and explain.

The other thing was the 'but you don't look sick' attitude. I lost 2 stone so now I am very trim and people used to ask me what my diet was etc etc and that I should stop it now. IT used to drive me mad, but now I just smile and accept their comments. They are just ignorant. There is a good website - 'but you don't look sick' that has a good theory on it called the spoon theory. This sums it up well. It may help to show friends and family that.

Well I think this is enough - but please feel free to ask questions if you want.

Take care - Fayann xxxx

colinone

Hi Mrs
Sorry to hear your not to good its not nice being in so much pain and stuck in the house Sorry no advice or help but hope your feeling better soon. Oh one thing stay away from Egypt lol
Take care and keep your chin up hope your feeling better soon
Colin

eckstardeluxe

Hi there

Like yourself, I just recently got my diagnosis and joined the site. I too came here to find others in a smiliar situation and have already found the responses I've had since Friday invaluable. I was told last Monday I have advanced stage Osteoarthrtitis in my spine and sacral area. I am only 32 with a baby and toddler and am finding it hard to talk about it as I get upset. On here though, I find it very easy, it just seems more natural to talk with people who understand just how painful it is and are going through the same thing. All my family and friends keep telling me to say positive but it's so hard. Coming on here has made a difference to me though. Hearing other people's stories and how they cope with things does help. If you need to chat or let off steam just send me a message. Best wishes, Alex

travelgirl

Hi At last I have felt I was the only person in the world apart from the GP and the Rheumy Dr and Nurse who had heard of this horrible ********* I posted for the first time today, and have realised I hadn;t given allthe information I needed to.
meds
Prednisilone now 10mg previous Dec08 25mg
Oramorph as needed
Amitriptyline 10mg at night
Remediene Forte 2 x 4 times a day
Diclofenic 15mg a day
Methotrexate 15mg once a week started on Jan 6th 09
Adcal and Alendronic
Folic acid 5mg a day apart from MTX day.
As I said I have lost most of my hair but I expected to s my Mum did on her first dose of Chemo for BC and i had alopecia as a teenager
My CRP was 126 now 71 the steroids have taken most of the pain a way but I know I will be weaned off them soon. I have lost 3 stone since last March but the steroids have stopped the rapid loss to be trueful I need to lose another 2 stone so not all bad ad the weight loss is fantastic, My GP phoned me on Tuesday to say my liver results are not good I fel fine but am very worried. So anyone who has reactive A or anyone else takig these pills and potions let me know how you get on with life. :?

Wonkylegs

glad you found this earlier thread - have replied to your other thread & have emailed rainbow77 to let her know you are on here.

Rainbow77

Hi travel girl

I have replied on the other thread. Please private message me and then we can have a proper chat.

Fay xxxx

elnafinn

Thread bumped up for vickymo.
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elnafinn

Thread bumped up for SS

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