Another Reactive Arthritis flare

clairc

What do you have to do to get treatment??? Why is no-one listening to me???

I've been crying my eyes out this morning. I got a letter from the infectious diseases doctor which basically says the Immunologist will NOT see me. The letter said because infectious diseases had already ruled out primary immune deficiency there was no point in the immunologist seeing me.

Game over.

I am so frustrated. I am going around in circles but no-one can see past the diagnosis of ME. There is no diagnostic test, treatment or cure for ME so every little thing that happens to me gets blamed on ME and I just have to put up with it.

I have a concrete diagnosis ot Post Strep Reactive Arthritis. I was diagnosed in Bassetlaw Hospital in August 2009. I had a postivie strep swab and developed joint pain 2 weeks later. I had raised ESR and CRP. That's as good a diagnosis as you can get.

The condition has flared up 5 times since then, always 2 weeks after having a sore throat. Coincidence? Or do I have a chronic case of Reactive Arthritis?

No-one is listening to me!!!

The rheumy blames it on the infections and says there is nothing he can do.

The GP blames the infections on me having ME.

The infectious diseases doctor says there is nothing wrong with my immune system.

The GPs put me on naproxen, tramadol and Gabapentin because this flare is so bad and thinks Immunology is the way to go.

The immunologist won't see me because there is nothing wrong with my immune system.


I'm sat here, dosed up to the eyeballs, taking 18 tablets a day to stay relatively pain free. I'm feeling so ill, I can't carry on like this. What the heck can I do?

Sorry to rant on, but I'm really upset. I have an appointment to see a GP on Monday and I have no idea what to say.

dorcas

clairc wrote:

Sorry to rant on, but I'm really upset. I have an appointment to see a GP on Monday and I have no idea what to say.

Oh Clair, you rant all you want...the way you're being 'treated' is just the pits :roll:

how on earth can they say it's not an 'immune system' issue? reactive arthritis is and autoimmune disease for gawd's sake. :x

your doc is going to have to fight your corner...these consultants can't just pass you back and forwards like some unwanted parcel. :!: so your doc really needs to shake them and get you seen.

Complain to your health board...or trust about the way you're being fobbed off.

I'm so sorry clair I am stumped too but feel that the GP has to be your route to being seen and your symptoms properly and fully diagnosed so that the best treatment follows.

sending you lots love and strength..

Iris x

clairc

Thank you!

As I said I'm so frustrated. The Immunologist wouldn't see me because they weren't looking at the big picture. The letter said because infectious diseases had ruled out primary immune dysfunction there would be no point in seeing me because they would only repeat the same tests and reach the same findings. They weren't looking at the reactive arthritis at all!

I know I need to demand to see a consultant expert in reactive arthritis but because I have ME they seem to treat me as an attention seeking hypochondriac and dismiss any of my requests. It's stupid really. I've had this condition for at least 12 months, probably 20 years. I could even have psoriatic arthritis, I don't have any psoriasis that I know of but my father has severe psoriasis of the scalp.

There is something going on, it's not all in my head I just need to find the right approach to get the right treatment.

dorcas

clairc wrote:

I could even have psoriatic arthritis, I don't have any psoriasis that I know of but my father has severe psoriasis of the scalp.

There is something going on, it's not all in my head I just need to find the right approach to get the right treatment.

Hi again Clair.....I have PA without the psoriasis...took a year to diagnose as is often the case with sero-negative arthritis...but the consultants should be looking (listening) to to your family history of psoriasis as a pointer to 'other' inflammatory arther. I read on the net that the REA can also be confused with/ additional to underlying sero-neg arther such as PA and AS. ...


keep your chin up clair...and fight to be heard and seen at rheummy...seems the right way to go in my humble and limited opinion.

will be with you in your fight.

best wishes
Iris x

Rainbow77

Hi Claire

I am sorry to hear that the immune Dr won't see you but at least you are seeing your GP on Monday. Your GP is the key to getting the right treatment. Remember that your GP may also know very little about Reactive Arthritis - they may know the general stuff but not when it comes to the chronic type.

Here are some suggestions:

I would write down a timeline of how all this started with dates (just month and year), write down all the symptoms that you had and what the drs said etc etc. I know it is really tedious but it helps to link it all together and also what has happened since you went to hospital last year - that is the important bit with Rea Diagnosis. Write down all the symptoms since then and also up to date - write a diary of your 'typical' week. Pain, stiffness, where, what medications have worked, what tasks activities you can and can't do. This really helps your GP to see the full picture.

At the end of the day - it is a fob off that the symptoms are the same as ME when there is another trigger. You need to go with as much info about ReA - I know you can't take this on monday - but get copies of all the leaflets available from Arthritis Care and Arthritis Research (arc) with up to date information.

You do need a referral to a Rheumy who specialises in Reactive Arthritis. That is the outcome - so you need to do some research and see if you can find one in the Nottingham area - or your GP needs to and ask him to write a referral for you. This is made much easier now with the book system the NHS uses.

If you have had the symptoms for more than a year - then that is chronic and needs an aggressive approach.

I know it is a really hard place to be in - especially when you feel so ill, but the bottom line is you do have to fight for what you need. It should not be like that, but it is. I write this al done in a letter and gave a copy to GP, sent a complaint letter to PALS at hospital etc to get the ball rolling. But it worked. You need to be really assertive when you go and see your GP on Monday.

I hope this is helpful and come back on here and tell us what happens on monday.

clairc

Disaster. doc did nothing. he said take molkosan, that will put me back in balance. i cried. spoke to manager who said they are cutting back on out of trust referals. i complained and she's getting back to me.

clairc

Sorry about the lack of punctuation, I sent the last message from my phone, having intermittant broadband problems at home.

Basically today was a disaster. Went in to see the doctor, told him I got worse and another doc put me on gabapentin. I told him I got lots of bruises but hadn't hurt myself and he asked if I took aspirin (no but he put me on naproxen 2 weeks ago). I told him that immunology refused to see me and I said that I felt I needed to see someone experienced in reactive arthritis. He said I'd realdy seen a rheumatologist and I said he knew nothing about reactive arthritis and said all he could do was drain my joints but I don't get joint swelling. He wrote the word Molkosan on a bit of paper and said it's a powdered drink, you can get it from health food shops. he said that would put me back in balance.

I showed him the printout from the nhs choices website that said the next step was DMARDs and he said that's a bit drastic. Just take the drink, it will make you better. He wasn't listening anymore and I left.

In the waiting room I burst into tears. My PA was waiting for me and she tried to calm me down. A receptionist came over and asked if everything was ok and I blurted it all out to her. She arranged for the practice manager to speak to me. The manager said that the doctor I saw was a salaried doctor and not a partner at the practice so he coudln't refer me to anyone outside the trust. She said that my own GP was working on cutting back on making referrals outside the area to cut costs. I tried to explain the whole situation to her, that reactive arthritis is very rare and seeing a rheumy with no knoweldge of it is next to useless. I told her I think I've had this condition my whole life and if I don't get the right treatment I'll just go back again and again and again. She said she would look up some specialists on the internet and get back to me. That was at 10.30 this morning and I haven't heard back from her yet.

I am absolutely livid. I'm sat here in pain despite taking tramadol and gabapentin, I feel awful and I'm absolutely exhausted but I'm too angry to rest. No-one is listening to me and no-one wants to treat me and it's too expensive to send me to a doctor who might be able to help. What the heck am I supposed to do???

Rainbow77

Hi Claire

I am sorry that your appt did not get well but at least the practice manager knows what happened. However, what I would do now is put all this into a formal letter to your practice manager. It is easy to forget all what happened - so write down so they have a formal copy. Stay to the facts, he said this, you said this, the practice manager said this. State what you are hoping to achieve out of this letter - I.e that you need a referral to specialist Rheumy and then see what their proper response will be. If they receive a letter then they have to reply.

How long have you been with your GP? I would not jump ship yet with them - but you may have to if nothing is resolved. Still gather all the information about Reactive Arthritis so you can build your case.

I know this is all a pain but you have to go through the process.

Just take one day at a time, that is all you can do at the moment and see what they say.

Make sure you keep your symptoms diary as that is important part of your evidence.

Take care xx

marion1952

Hi Clair

It's really disgraceful the way you are being treated (or, should I say, NOT being treated).

Are you able to see a rheumatologist who specialises in reactive arthritis privately? I know you shouldn't have to do this, but it does seem as if the NHS is failing you in a big way and seeing someone privately might mean that you are taken seriously and given some proper treatment..

All the best

Marion

clairc

Fingers crossed I think I've got a result on this!

This morning I had a phone call from the practice manager. She said there was a doctor in Nottingham called Dr Lanyon who is a rheumatologist. He isn't a specialist in reactive arthritis but apparently he does see people with it. She asked if I wanted to see him so I said yes! He works at the NHS Treatment Centre in Nottingham and hopefully he will be able to help me.

Thanks for all your help and support. It gave me the strength to carry on fighting. Now hopefully I'll be able to get some treatment and start getting better

Clair

dorcas

such grrrreat news Clair !!!! well done for sticking to your guns and getting this referral....this consultant sounds so promising. x

please let us know how you get on...any idea of when you might be seen?

am so pleased for you.

iris x

Rainbow77

Hi Claire

That is a step in the right direction. Hopefully you will not have to wait too long for an appointment. You need to keep your symptom diary from now until then - so when you see the Rheumy you can give him a really clear picture on what is going on. I used to have some stuff on how to get the most out of your rheumy appt - I have posted it on here several times in the past - I will see if I can find it and post it. Won't be today though as off in to work for the evening. xx

Take care xx