Recurrent Post Strep Reactive Arthritis and Infections

clairc

Hi!

I've just been discharged from the rhuematologist today and I feel like I'm in limbo. I have had 3 flare ups of post streptococcal reactive arthritis in the past 6 months. All my tests were normal, apart from strep being borderline (4 weeks after infection treated with Antibiotics) and there is nothing wrong with my joints so I've been sent back to my GP to find out why I keep getting infections.

I tried to get a GP appointment but none were available until 12th March. I'm going to try and get an emergency appointment tomorrow but it's very difficult to get through on the phones when the surgery opens.

I don't know what to do. I've had ME for the past 20 years, I think I've had many reactive arthritis flare ups during that time (they were put down to an ME relapse but the symptoms were exactly the same as the flare ups I've had recently). I've already spoken to my GP about my infections and she said there is nothing they can really do and she thinks the amount of antibiotics I've had over the past 12 months haven't helped me because they have wiped out all the good bacteria in my body. I spoke to a different GP at the practice too and he basically told me to eat a healthy diet (which I do) exercise more (which makes my symptoms worse) and find a purpose in life!

I feel like no-one is listening to me or taking me seriously. Is there anything I can do?

Clair

dorcas

Hi Clair!
I am so sorry you are being treated this way! I can hardly believe that rheumy have just discharged you when you've already had 3 episodes of post strep reactive arthritis and still evidencing infection!

It's really not good enough to be told that they can do no more for you.......can you ask for a second rheumy opinion? after all, not all forms of arther show up in bloods.....

Your doc #s attitude also leaves a lot to be desired...how condescending to suggest you change your diet & exercise!!!

I am upset for you Clair and wish I could offer better advice.

Despite all that has happened there is one thing you CAN rely on, and that is that you are being listened to here on the forum. We are here for you.....sending you lots of hugs (((())). Irisx

clairc

I managed to see my GP today. She said there is nothing they can do for me. There is nothing wrong with my joints, the inflammation is caused by a reaction to the infections and there is nothing wrong with my immune system so there is nothing they can do to stop me getting infections all the time. It's all blamed on my having severe ME, for which there is no treatment or cure.

My GP doesn't know what to do. She is going to wait for the discharge letter from the rheumatologist and then try and find a General Physician to see me to go over the same tests again but in the meantime I'm left in pain every day, feeling poorly every day and left feeling scared of when the next flare up will hit and leave me bed bound and in agony again.

I know it sounds melodramatic and pathetic but I've had about as much of this as I can take. Is there anything else I can do? Is there any specialist that deals with recurrent infections or reactive arthritis?

TIA!

Clair

helpline_team

Hi Clair
Sorry it has taken so long to get back to you. No it doesn't sound melodramatic or pathetic and I'm sure you have had a gutfull of all of this. Unfortunately we don't have lists of specialists we can recommend you to but would like to encourage you to give us a call so that we can discuss things further in more depth to see if we can find some avenues yet unexplored.

I am wandering if you have been in touch with any ME organizations or people diagnosed with it who also have other things going on which tends to complicate everything? Perhaps this might be worth exploring or even Fibomyalgia Association UK as the two conditions have such similarities.

I hope you find time to give us a call. In the meantime have a good weekend.

Best wishes,

Simona

skezier

Hi Clair,

Wish I knew some answers for you but I am afraid I don't but wanted to just leave you a ((( ))) and a hope it gets better for you. Cris x

clairc

Thanks for the support. Unfortunately the flare hasn't been as mild as I thought it would be. Today I'm in a lot of pain and my usual co-codamol isn't helping at all. I have phoned up the doctors and I'm waiting for a call back.

I really don't know what to do. My rheumatologist says he can't help, my GP says she can't do anything and I'm stuck in the middle.

I have posted on a couple of ME boards and phoned the ME Association helpine but no-one has had any experience of it either.

Clair

dorcas

Hi Clair,
I've been worrying about you since I read your last post....how are you now? did you get any help from the docs?

hugs ((())). iris x

clairc

dorcas wrote:

Hi Clair,
I've been worrying about you since I read your last post....how are you now? did you get any help from the docs?

hugs ((())). iris x

Aw, please don't worry yourself about me!

I'd love to say that I'm better but unfortunately I have come down with yet another throat infection and I'm on antibiotics again. The reactive arthritis flare is settling down a bit and I only have to take painkillers in the morning. I'm just hoping that the throat infection won't trigger another flare, I shall have to wait and see.

Unfortunately I'm no further forward with the doctors. My GP is still waiting for the discharge letter from the rheumy, then she's going to try and find a general practioner to see me.

I did some googling and I have found a doctor who treats reactive arthritis. His name is Dr Peter Merry and I emailied him about my problem and he said he was very interested and asked me to make a private appointment. I would love to see him but I'm not sure if I can because of the cost and the travelling. It's £200 for an initial consulation plus extra for test and he's in Norwich which is a 3 hour drive from where we live in North Nottinghamshire. I'm going to wait and see what my GP can do for me before I decide what to do.

Clair

opal1266

Hi Clare,
Despite te OA diagnosis I have now, a couple of years ago this was the diagnosis I got, 13 throat infections, atrophied tonsils and post strep reactive arthritis. I work in a hospital and pushed to see the ENT consultant, throat infections do qualify as ENT. I ended up with 7 days IV antibiotics which after the first two doses I had at home with the hospital at home nurses followed by 3 months of IVAB doses of Benzyl Penicillin 1200mgs once a week. touch wood I've not had any further strep flare ups.

My advice is push for an ENT appointment

clairc

Hi!

Thanks for the advice. I made an appointment to see my GP to ask for a ENT appointment but unfortunately there is a 3 week wait to see her and before my appointment I got a letter to say she had referred me to an ME specialist in Sheffield at the Infectious and tropical diseases clinic. I think my GP believes that ME has weakened my immune system which is why I'm getting so many infections which in turn is triggering the reactive arthritis.

I don't know if this doctor will be able to help or not, I'll have to wait and see!

Clair

snowball

clairc wrote:

Hi!

Thanks for the advice. I made an appointment to see my GP to ask for a ENT appointment but unfortunately there is a 3 week wait to see her and before my appointment I got a letter to say she had referred me to an ME specialist in Sheffield at the Infectious and tropical diseases clinic. I think my GP believes that ME has weakened my immune system which is why I'm getting so many infections which in turn is triggering the reactive arthritis.

I don't know if this doctor will be able to help or not, I'll have to wait and see!

Clair

Hi Claire which hospital is it at :?: as i live in sheffield i am treated at the halamshire for my r/a. Good luck with your appiontment.

Julie

clairc

snowball wrote:

Hi Claire which hospital is it at :?: as i live in sheffield i am treated at the halamshire for my r/a. Good luck with your appiontment.

Julie

I'm being seen at the Infectious Diseases Out patients clinic at the Hallamshire. I was seen there before regarding my ME about 15 years ago but they weren't that helpful.

Clair