Treatment for reactive arthritis?

Rach101

Hi everybody,
Not sure if anybody can help me but I've been diagnosed with reactive arthritis and my symptoms are getting worse. I was discharged by the rheumatologist as soon as they realised it wasn't RA (thankfully). All I've been given so far is NSAIDs but they don't reduce the swelling, would the next step usually be to try steroids? I've lost my job due to my symptoms so it's having a huge effect on my life and I really need some treatment so I can start getting better. What should I ask for? I really don't want to be fobbed off again and this has lasted 6 months so far.
Thanks all xx

stickywicket

I'd never ask for anything. They are the professionals. Just tell them the meds aren't working and see what is suggested. If it's just pain you'll probably be given pain relief. Inflammatory levels are another matter.

Rach101

Hi Sharon
Thanks for your understanding and support. I have seen the fact sheet and thought it was very helpful. It was the fact sheet which made me think that there may be treatment available to help me when I haven't been given anything so far. However, I have now made an appointment to go privately as it seems that my condition doesn't warrant treatment from NHS funds so hopefully I'll finally get some help and get the condition under control and back to work! Xx

Stickywicket I'm a bit surprised by your reply but can only assume that you've had excellent care from your local doctor and hospital but sadly that hasn't been the case for me. Unfortunately I don't 'just' have pain, if that was the case I would not have lost my job and be in the state I am in.

stickywicket

I'm so sorry. I didn't mean to upset you and my post was quite abrupt because I was on my tablet and don't type well on a touch keyboard.

My intention was to suggest you went back to the docs telling them what you've told us but not to suggest treatments. I don't think any professionals react well to being told how to do their job. I intended to copy and paste the link that Sharon has given you but, again, on the touch keyboard, I found it difficult and eventually gave up.

I would seriously doubt that it's a matter of funding as the meds used for ReA are not expensive.

In no way did I wish to trivialise your problems but I can't remember everyone's circumstances, especially two weeks after moving house. For many, pain is a major problem - major enough to have to give up their employment. Yet the treatment is usually simply pain relief and exercises. If your inflammatory levels are high then the rheumatologist - any rheumatologist - might well prescribe something else. If not, they are unlikely to do so.

I hope whatever route you take you find some relief. Arthritis is not easy to deal with in whatever form it presents.

frogmorton

Hello Rach101

I don't know too much about reactive arthritis, but imagine it's just as excruciating as non-reactive.

Leaving you with pain killers and NSAIDs only does seem a bit harsh when the pain you are in has resulted in you being unable to work.

It also strikes me as a bit unfair you have to pay privately for help.

I have had to do the same myself in the past and am considering it for my youngest daughter who at 18 needs a shoulder replacement.

If you are lucky he/she may refer you back to the NHS after they have a treatment plan for you.

Sending you some ((()))

Love

Toni xxx

Rach101

Hi Stickywicket, thanks for your further reply.

I am incredibly sensitive at the moment (just ask my poor husband!). I've got an appointment with a private rheumatologist in a couple of weeks so it will be interesting to see what she says. She is very well respected and heads up various things in South Devon, I think she's involved with Arthritis Care too. So I really hope I'll get some answers from her.

I get very upset seeing GPs/consultants etc as I had a few horrendous experiences with them when I had M.E. so I tend to be scared rather than assertive with them. At least privately I am paying her to take me seriously and she won't have other considerations apart from my condition to consider when discussing treatment.

I was very upset to be discharged from rheumatology without a letter or explanation of my condition or a chance to ask questions. I didn't even realise they'd discharged me until my GP told me. She was the one who said they'd diagnosed it as reactive arthritis. I assumed that as they believed the inflammation wasn't damaging my joints that they didn't think it was worth spending NHS money on treating the condition but I could of course be wrong.

Thanks for your support Toni - I'll let you know how it goes.

Rach xx

[Deleted User]

Hi Rach101,
I think it's perfectly reasonable for you to be feeling very sensitive at the moment, being ill and in pain strips us of our capacity to cope with the normal difficulties that life throws at us and makes us all very raw emotionally.

If you have had previous experiences with healthcare professionals that were not sensitive you are bound to feel vulnerable and on your guard, I hope you can find somebody who will be supportive and will listen to you. Fingers crossed your physiotherapy appointment will go well and she will be able to support you and reassure you.

Reactive arthritis is still arthritis and it does need to be managed if you're feeling vulnerable it might be worth taking somebody with you to your next appointment with your GP so that they can act as a buffer for you so that you feel more protected. I'm sure many of us have gone to our GPs and burst into tears after the question"how are you today?".

Let us know how the physiotherapy session goes for you and keep us up-to-date as will be thinking of you.
Best Wishes
Sharon

stickywicket

Hey, no worries. As Sharon says, pain makes us all extra sensitive. I do hope you'll feel better supported by your new rheumatologist and please let us know how it goes.