Never ending ReA flare

clairc

Sorry to be a moaning minnie but I'm getting very bored of my recent Reactive Arthritis flare. It's been almost 4 weeks now and is showing no signs of subsiding. Usually it only lasts 2-3 weeks and I'm really finding it hard to cope with it going on so long.

My husband is nagging me to go back to the doctors but they have been no help so far. The doc I saw 3 weeks ago put me on naproxen and said to go back in 2 weeks. The flare got worse and another doc put me on tramadol and gabapentin. When I went back to see the first doc he dismissed the bruises I'd developed (maybe because of the naproxen?), I suggested DMARDs which he said were a bit drastic and told me to take Molkosan because it would balance my system. Apparently it's a prebiotic powdered drink.

I complained and have got a referral to see a rheumy in Nottingham but it's only been a week since that was sent so it looks like I won't have an appointment any time soon.

At the moment I'm taking tramadol, paracetamol and gabapentin. I'm in severe pain in the mornings and I'm in moderate pain the daytime. I can control the pain better if I take 2 tramadol but it also turns me into a zombie, which isn't great when I have the kids at home for the summer holidays.

The GP's at my local surgery don't seem to know anything about reactive arthritis so I don't know if there is any point in me going back? I don't know what to do. Should I just sit it out and hope if goes soon?

Clair

dreamdaisy

I fear sitting it out is the only option. It's hard to accept but there is very little anyone can do. The meds are palliatives/delaying mechanisms only. They are not cures. I understand all too well how you feel - I once had threee months ion bed 'cos I was off everything. Couldn't move, on liquid morphine for the pain, it was awful, but it did end. I was given oral steroids to jolt me out of it, they worked a treat. I'm still on them (b***er the side-effects) 'cos they are the only things that make me feel better. What about a short course of those? Dreamdaisy

tillytop

Hi Clair – you are not a moaning Minnie! Just a suffering one!
It sounds as if your GPs are not good, but I really don’t think you have much option other than to go back to the GP and push for a rheumatology appointment sooner rather than later – because naproxen is obviously not damping down the inflammation and the other drugs are just dealing with the symptoms, rather than with the underlying inflammation.
Was a bit alarmed by your GPs comments that DMARDs are a bit drastic – given that he is happy to provide Tramadol and Gabapentin, both of which are, in my view, pretty drastic themselves! I have RA and don’t know how much reactive arthritis differs but, if it’s like RA, delaying proper treatment can cause permanent joint damage and store up a heap of trouble for the future. My first rheumatologist was very much of the old school “save steroids and stronger drugs for later” mentality and, as a result, I suffered unnecessary pain for far too long – and some of my early joint damage could probably have been avoided.
Your GP probably isn’t in a position to prescribe DMARDs but he would be able to prescribe a different anti-inflammatory – and you might find that one of the others works better for you. Naproxen and the others did nothing for me, but Diclofenac really helps. And, as DD says you might be able to persuade the GP to give you a short dose of prednisolone. Not a long term solution but short-term it should give you some relief.
Thinking of you.
Love Tilly

clairc

Thanks for the replies.

Tilly - I'm not on any NSAIs at the moment, I only had 2 weeks worth of Naproxen prescribed and I've already finished those. I have to take them with Lansoprazole because a few years ago diclofenac gave me gastritis which was very painful! It was a different doctor who prescribed the gabapentin, I had to call them out to me at home because the tramadol and naproxen wasn't working very well for the pain and I could barely get off the sofa. I don't know if a different NSAI would help, but it might be worth finding out.

Reactive Arthritis is different to RA because it doesn't usually cause joint deformation, except in chronic cases. I believe I may have had the condition for over 20 years. It's basically arthritis in reaction to an infection. When the immune system is done fighting the infection it starts fighting your joints which causes inflammation and mild to severe pain. I've had a lot of infections all my life and was diagnosed with ME aged 15 because they did all the tests they could but still couldn't find anything wrong. Reactive Arthritis is RF negative and I only made the connection between infections and arthritis symptoms last year.

frogmorton

HI Clair

I am so sorry this is dragging on so long

I have bad belly reactions to nsaids too so I have arcoxia which is better on the tum. Could this be worth a try?

Do yo try stuff like ice packs and tens machines to try to releive the pain?? If you know which rheumy then suggest ringing and asking foir a cancellation.

As for summer hols which are really close - you are going to have to plan like a military operation to get through I reckon. One advatage is no morning rush for school....

Rent some DVDs to watch when you need to rest and get a load of arty stuff to occupy them in the same room as you. If the backgarden is safe then set yourself a seat out there ready too.

Get others to do some physical activities for you - the [park or swimming in the evenings if needs be.

Thank the kids if they are old enough for helping you.

There are lots of us on here who are Mums with kids - stick a summer hol thread on and you will get responses.

Good luck Clair

Love

Toni xx

carola

Hi Clair

If you can't be a Moaning Minnie on this site then where can you? Moan away to try to let some of the frustration out! :P

Even though my GP cannot help sometimes I still persevere and see him as at list my 'case' will be building up in my file incase any of it is relevant for the future.

Regarding speeding up a Rheumy appointment - why not get hold of the telephone number for Rheumy Nurse at the department and explain the pain etc and need a quick appointment. I tried that and it worked and I had an appointment within a fortnight.

Keep us posted, good luck and keep smiling
Carol

clairc

Thanks for the support you guys!

I did go back to see the doctor because I was running out of tramadol and I don't have it on repeat. she just said keep taking the tablets.

The good news is my appointment to see the rheumy came through! I'm seeing Dr Lanyon (or one of his team) on 31st August. I hope I'll be awake enough to explain everything, the appointment is at 8.30am so I'll have to get up at 6am and leave the house at 7am to make it all the way to Nottingham in time.

The bad news is my PA had to call the doctor out to me yesterday because when she arrived I was very pale, shivering under a blanket and I kept falling over when I tried to stand up. The weird thing is I didn't have a fever but the doctor said it could be an infection so now I'm on antibiotics and tablets for the dizziness as well as gabapentin, tramadol and paracetamol.

C'est la vie!

clair

marion1952

Hi Clair

Glad to hear that you have got an appointment for end of August....

Sorry to hear that you're not well with other things now - you're on quite a few tablets at the moment - I wonder if they are contributing to your dizziness??

Give yourself a very easy day today Clair .. hope you feel lbetter tomorrow..

Marion

dreamdaisy

Oh no! As if you don't have enough to put up with - get plenty of rest, keep warm and I hope you feel better soon. DD

speedalong

Hi Yes - that was what I was wondering too, Marion.

Are the meds you are on new to you or a higher dose than before. Only Tramadol helped with the pain - but the side effects made me feel awful.

Speedy

clairc

I don't think it's the drugs causing the dizziness. I go get a drunk feeling when on the tramadol and gabapentin but they don't make me feel like this, I've been on them for a couple of weeks now and I haven't increased the dosage.

I have had this dizziness before when I had a UTI. I got very drowsy and kept keeling over last time I had a bad UTI so I think the doc is right and I have some kind of infection. I also had chills without a fever which also indicates infection and the inflamation from the reactive arthritis flare and the gabapentin can leave me more likely to get infections too.

I'm trying to take it easy, DH is helping with the kids and I'm going to have a lazy afternoon watching the German F1 GP.

frogmorton

Hi Clair

You take it steady girl :shock:

I get dizzy wizzy sometimes think it's me balance no temp though with it - take stematil for it. Can last weeks

Hope you feel better soon

Love

Toni xx

Rainbow77

Hi Clair

Sorry to hear that you are still feeling unwell. Make sure you are noting down all what is happening to you at the mo so the consultant can see Checklist of questions to ask your doctor at your appointment. I am glad that you have your appt through. There is a really handy list about how to get the most out of your appt. I have posted some of it here for you.


Top tips

Before your appointment

Write down your two or three most important questions.
List or bring all your medicines and pills – including vitamins and supplements.
Write down details of your symptoms, including when they started and what makes them better or worse.
Ask your hospital or surgery for an interpreter or communication support if needed.
Ask a friend or family member to come with you, if you like.
During your appointment
Don’t be afraid to ask if you don’t understand. For example,‘Can you say that again? I still don’t understand.’?
If you don’t understand any words, ask for them to be written down and explained.
Write things down, or ask a family member or friend to take notes.

Before you leave your appointment

Check that:
you’ve covered everything on your list
you understand, for example ‘Can I just check I understood what you said?’
you know what should happen next – and when.Write it down.
Ask:
who to contact if you have any more problems or questions
about support groups and where to go for reliable
information, and
for copies of letters written about you – you are entitled to see these.

After your appointment, don't forget the following

Write down what you discussed and what happens next. Keep your notes.
Book any tests that you can and put the dates in your diary.
Ask:
‘what’s happening if I’m not sent my appointment details,’ and
‘can I have the results of any tests?’ If you don’t get the results when you expect – ask for them. Ask what the results mean.

Tests, such as blood tests or scans
What are the tests for?
How and when will I get the results?
Who do I contact if I don’t get the results?
Treatment
Are there other ways to treat my condition?
What do you recommend?
Are there any side effects or risks?
How long will I need treatment for?
How will I know if the treatment is working?
How effective is this treatment?
What will happen if I don’t have any treatment?
Is there anything I should stop or avoid doing?
Is there anything I can do to help myself?
What next
What happens next?
Do I need to come back and see you?
Who do I contact if things get worse?
Do you have any written information?
Where can I go for more information?
Is there a support group or any other source of help?
Download or print the questions now and prepare for your doctor's appointment. he bigger picture.

If you ask all these questions - you will need a whole day to see the dr!! I have used this before, I think it really helps you to plan for your appointment and get the most out of it.

Hope you feel better soon

Fayann xxx

Rainbow77

Just bumping this up for Jenfa 1 with all the information on how to get the most out of your hospital appt.

Fayann xx

elnafinn

Bumping yet another thread on ReA for SS. Fayann replies further down the thread.

Chin up, SS,

Luv
Elna x