Post Streptococcal Reactive Arthritis

clairc
clairc Member Posts: 90
Hi!

I'm new here and I wondered if anyone could give me any advice please. Last week I neded up in hospital in terrible pain. I'd had a sore throat for several weeks, I had a throat swab done which showed positive for strep. By the time I got the results back my hands and knees were crippled with arthritis. 10 days of penicillin didn't shift the infection and my GP admitted me to hospital for further investigation.

The consultant diagnosed me as having post streptococcal reactive arthritis. I'd never heard of it before and the doctors didn't tell me anything about it. In hospital I was given antibiotics and tramadol. I had a steroid injection (kenalog) and was sent home.

I've read the fact sheet on the website but I'm not sure what I should be doing to recover. I read that it could take months before I improve. The steroids have helped a lot with the stiffness but should I be resting, going about my normal business or exercising?

At the moment I'm pretty tired and still stiff and sore. I'm taking paracetamol or co-codamol for the pain (depending on how bad it is). I can't take NSAIs as I have a history of gastritis. I have limited mobility as I've had ME for 19 years.

I have a follow up appointment with the consultant but it's not until October. Any help and advice on how to deal with condition would be gratefully received! Thank you!

Clair

Comments

  • helpline_team
    helpline_team Posts: 2,252
    edited 30. Nov -1, 00:00
    Dear Claire,

    Thank you for enquiry to Arthritis Care. Reactive arthritis is a difficult subject to try to get one's head around as it is not well understood why it occurs in some people in the first place, or what affects it calming down.

    The specialist referral which people can discuss with their GP is a to a rheumatologist. You may be able to discuss whether any blood tests can be done to show how things are progressing.

    As you have an existing long term condition which can be associatied with joint pain I do realise that the situation may be somewhat more difficult.

    I wonder whether you've already seen the ARC (Arthritis Research Campaign) information on reactive arthritis yet? Here's the link just in case. http://www.arc.org.uk/arthinfo/patpubs/6034/6034.asp

    I hope that's helpful

    Guy
  • teran10
    teran10 Member Posts: 20
    edited 30. Nov -1, 00:00
    clairc wrote:
    Hi!

    I'm new here and I wondered if anyone could give me any advice please. Last week I neded up in hospital in terrible pain. I'd had a sore throat for several weeks, I had a throat swab done which showed positive for strep. By the time I got the results back my hands and knees were crippled with arthritis. 10 days of penicillin didn't shift the infection and my GP admitted me to hospital for further investigation.

    The consultant diagnosed me as having post streptococcal reactive arthritis. I'd never heard of it before and the doctors didn't tell me anything about it. In hospital I was given antibiotics and tramadol. I had a steroid injection (kenalog) and was sent home.

    I've read the fact sheet on the website but I'm not sure what I should be doing to recover. I read that it could take months before I improve. The steroids have helped a lot with the stiffness but should I be resting, going about my normal business or exercising?

    At the moment I'm pretty tired and still stiff and sore. I'm taking paracetamol or co-codamol for the pain (depending on how bad it is). I can't take NSAIs as I have a history of gastritis. I have limited mobility as I've had ME for 19 years.

    I have a follow up appointment with the consultant but it's not until October. Any help and advice on how to deal with condition would be gratefully received! Thank you!

    Clair

    Hi Clair

    Better late than never.

    I too have been diagnosed with the same - well almost the same - Post Tonsillitis Reactive Arthritis - this is only because they are unsure of the cause of the tonsillitis though all the symptoms were of Strep throat.

    I have a history since a young kid of having tonsillitis, but not with any other reaction. Just the usual fever, aching joints and generally feeling very ill. Now I haven't had it for about 6 years and this summer I got it really badly. It wiped me out for 2 weeks and then I started to make a slow recovery. About 3 weeks later I noticed a slight swelling in my ankle which got worse throughout the week. By the weekend I could hardly walk. I went to A&E who said I'd sprained it (despite telling them I'd done nothing to sprain it) then a few days later my left knee started to go up.

    I went to the docs who sent me for a load of blood tests and gave me some Naproxen (waste of time just made my mouth fall to pieces). All the bloods came back neg apart from raised ESR. I was then sent for further tests to see whether the inflammation was going up or down. By the time I got the results back (within a week) both my ankle and knee were on their way down. And then I got another dose of tonsillitis.

    This time it hit both ankles and knees and my left hand (excruciating). I was unable to walk for a week, and everytime one joint came down another started to go back up.

    This time I was sent to a rheumatologist. I had to wait a few weeks and in the meantime I was on a diet of co-codomal and ibuprofen (I ditched the Naproxen and at least the ibuprofen gave some pain relief though again it did nothing for the swelling). After a couple of weeks I switched to aspirin which did actually out of all the NSAIDs I tried give some swelling relief.

    Anyway, I have now been to see the consultant who has given me a Kenalog injection. All my symptoms are now going and the only pain med I'm taking is paracetamol for headaches caused by the injection!

    I have spent a lot of time looking into this form of arthritis and recovery and this is perhaps something that may help.

    Firstly don't do anything drastic on your joints. Try and take it easy so no impact. Swimming is good. Gentle walking is fine. My consultant said I should wait about a month after the injection before I did anything too strenuous and then it should be nice and easy as there's a possibility that too much strain can cause the joints to flare again.

    A month after that if everything is steady then you can start doing more gentle impact training (if you wanted). He did stress it was important to exercise as reactive arthritis tends to affect the tendons and ligaments around the joints rather than the joint itself, so lack of use can cause issues later on.

    If after that everything is going well he reckoned 6 months I would feel back to normal with the odd twinge. That's the good news about RA.

    Unfortunately there seems to be a fairly high chance that this could re-occur for this particular type of reactive arthritis. In other words the next time you have strep throat. Also the more you get it the more health consequences it begins to have, the more likely you'll be prescribed disease modifying drugs. So what I did as soon as I had an inkling that I had PSRA was get to my doctors and I didn't leave until I had a 3 month course of prophylactic antibiotics. I now take 1x 250mg Penicillin VK twice a day. This soon finishes and I am back to my docs next week to ask to extend this course.

    This gives me peace of mind. There are possible long term problems associated with antibiotics but they pale into significance for me compared with my arthritis pain and also the possible side affects of the more serious drugs for arthritis. So for you, maybe you should go and discuss this with your doctor.

    Another course of action if it is re-occuring is to ask for a tonsillectomy which have quite a good success rate in sorting this problem out. Now I hate the thought of that, but if that's what it would take for me I know I would do it in a heartbeat!

    Anyway, I hope this helps a bit (if belated I've not long joined myself)

    teran
  • clairc
    clairc Member Posts: 90
    edited 30. Nov -1, 00:00
    Thanks for the reply Teran. Sorry to hear you're in the same boat as me.

    It's been 2 months since I was diagnosed, I'm a lot better than I was but I'm still very stiff, especially my hands and my toes. I have injured my knee too which has complicated things. I've been quite poorly recently, 2 colds, suspected swine flu, loads of mouth ulcers and now my thraot is sore with white pus pots again.

    I have a clinic appointment on Thursday to follow up from me being in hospital but that's just with the ward doctor. No-one has said anything about seeing a rhuematologist. I have seen the GP about my knee but they said it couldn't be the reactive arthritis flaring up because it usually goes away.

    I've done some reserach on reactive arthritis and I'm not sure if I've had this before, I'm even wondering if it is the cause of my ME/CFS. when I was a teenager I had a lot of tonsilitis, 3 bouts in 6 weeks once! I felt ill all the time, I sprained my achilies tendon (can't remember injuring it - it just hurt a lot and I could barely walk on it) and I had recurrent mouth ulcers, 5-10+ at a time on my tongue, mouth and down my throat. In my late teens I became very ill and ended up in hospital with an ME relapse. I was very weak, felt very poorly and had excrutiating pain in my knees but the doctors said there was nothing wrong. I always have a sore throat, it's listed as a common symptom of ME and doctors always say it's most likely a virus but now I'm wondering if I have chronic/recurrent strep which is causing all my symptoms.

    I've probably been overdoing it over the past 2 months. I am disabled from the ME but I have 3 young kids to look after so it's difficult to take things easy! I don't know if having my tonsils out would be an option, my GP said years ago I hardly have any tonsils left as they've been eaten away my so many infections.

    My problem is I don't know who to talk to about my health concerns. I guess I just mention it at the clinic on Thursday and go back to the GP if I don't get anywhere.

    Hope you're feeling better!

    Clair
  • hollter
    hollter Member Posts: 2
    edited 30. Nov -1, 00:00
    Hi Clair

    Phew...I thought I'd had things rough. I'm really sorry that things are so tough and that you're not getting the healthcare you should be.

    It sounds like your doctors are getting your ME/CFS mixed up with Reactive Arthritis and general not really looking into things as they could or should.

    Maybe it would be a good time to see a different doctor? It sounds like you could do with a second opinion. Especially if they think that Reactive Arthritis doesn't flare up again. In fact it does with over 50% of sufferers so I don't imagine it fills you with confidence that they are capable of managing your illness.

    My doctors are quite odd in that they are quite large so I never tend to see the same one twice so you do tend to get a mix of opinions, but sometimes they do need things pointed out. I was the one that pointed out the link between the tonsillitis and the arthritis. But to give them their dues once it went beyond 4 weeks and I still had bad inflammation they marked me down as urgent to see the the Rheumatologist.

    I think the least yours could be doing is sending you for an ESR and CRP bloodtest, this will show up that you have inflammation and will be hard proof they will find difficult to deny, but I would certainly not let it lie, even though it's energy you really won't want to be expanding I'm sure.

    My story is much better thank you. The injection brought most of my inflammation down, I've also been taking something called Curcumin C3 for the last few weeks which has possibly had a great effect on it all (it's a health supplement, supposedly anti-inflammatory amongst things - I'll try anything once!!). But a few weeks ago my ESR blood test was marked 57 and now it's 7 and my CRP test was 36 and is now 1 so in theory I'm back to normal. I'm still a bit stiff around the edges but so much better.

    I also managed to get the Penicillin VK on repeat prescription as a prophylactic pretty much as long as I want it to ward off another dose on tonsillitis - that gives me great peace of mind. Especially as I feel I've been fighting off another dose these last few days.

    I guess my message is, don't give up on asking - there are solutions that can quickly help, you shouldn't have to suffer as long as you are.

    Let me know how you get on

    Teran
  • belinda1
    belinda1 Member Posts: 4
    edited 30. Nov -1, 00:00
    Hello Clairc

    I have been in a similar position as you with a long history of streptococcal illness, erythema nodosum and post streptococcal arthritis. I was also given an ME diagnosis about 20 months ago, even though my ESR was quite high at 48 rising to 54 as my symptoms worsened. Fortunately I got properly diagnosed at a London teaching hospital by a rheumatologist as having chronically recurrent streptococcal infection and streptococcal arthritis and am now on permanent penicillin. I know you posted a year ago but if you are still watching this site I would be interested to know how you are getting on.

    Belinda1
  • clairc
    clairc Member Posts: 90
    edited 30. Nov -1, 00:00
    Hi Belinda!

    I'm afraid my reactive arthritis has flared up 5 more times since last year. I'm 3 weeks into a very nasty flare at the moment and I'm currently on tramadol, gabapentin and paracetamol for the pain.

    I'm afraid my doctors haven't been very much use. I had to reques a referral to a rheumy but he said he couldn't help as I didn't have any joint deformation. He said it was infections that were triggering the arthritis so he sent me back to my GP to find out why I keep getting infections. My GP blamed ME/CFs for weakening my immune system and sent me to an ME specialist at the Infectious Diseases clinic. He did lots of tests, said there was nothing wrong with my immune system and offered to refer me to an ME clinic for group therapy! I pushed him and he said he would refer me to Immunology but the Immunologist refused to see me because I'd already had tests to exclude primary immune deficiency. I guess they must have forgotten to say that I had an auto immune disease.


    I've been pretty poorly for the past 12 months. I've either had an infection, been recovering from an infection or been in the middle of an arthritis flare. In April I had 2 weeks where I felt quite good but in May I was very poorly with what turned out to be a pelvic infection. I was in excrutiating pain, they thought I had appendicitis. I had surgery, spent 4 days in hospital and took enough antibiotics to kill an elephant! After I finished the antibiotics I immediately got a cold with a bad sore throat and 3 weeks later the arthritis flared up again.

    I went to the doctors and was prescribed naproxen and lansoprazole for my stomach. That didn't help much and I had to upgrade my codeine for tramadol. After a week that wasn't working so I got prescribed gabapentin. I went back after 2 weeks to see the GP who gave me the naproxen and after talking to the lovely people on this forum I asked to be referred to a rheumy who specialised in reactive arthritis. I told him I'd had flares like this over the past 20 years and that I thought my ME was actually reactive arthritis. He wrote the word Molkosan on a slip of paper and said take this, it will put you back in balance. He said it was a powdered drink and would get me better. I asked again about a referral and mentioned that the NHS website said the next step was to take DMARDs and he said that was a bit drastic, just take the drink.

    I left the room and burst into tears. I couldn't believe it! The receptionist asked if I was ok and I blurted everything out to her. She arranged a metting with the practice manager and I explained everything to her. She called me back the next day to say that there was a rheumy in Nottingham who saw people with reactive arthritis and asked if I would like to go see him. I said yes so now I'm waiting for an appointment. I hope he can help me because I can't go on like this.

    Clair
  • belinda1
    belinda1 Member Posts: 4
    edited 30. Nov -1, 00:00
    Hello Clair

    I am sorry that you have been so unwell and I hope the Rheumy in Nottingham will be helpful and get you on some long term treatment that improves things for you. May be you need to be on permanent antibiotics now to prevent all these recurrences. Personally I think some ME is recurrent streptococcal infection and streptococcal arthritis but not everyone gets properly diagnosed because doctors tell people its "viral" and don't give antibiotics. No one can get well from this with psychological "therapies".

    I have been on penicillin since January when I got diagnosed with chronically recurring streptococcal infection and streptococcal arthritis and my health has improved a lot. Last year I was very poorly, in a lot of pain and very stiff. I saw a Rheumy last June who diagnosed cervical spondylosis and started me on diclofenac, co-dydramol and physio which was helpful, but the ESR was raised at 48 and he didn't investigate it, so I asked for a second opinion. I saw a Rheumy in London who was really helpful and got me on permanent penicillin as soon as I was diagnosed. I also had gastrointestinal symptoms which I am sure was streptococcal as I had the same symptoms after tonsillitis, along with post strep arthritis once before, and the gastroenterologist said it was streptococcal.

    The consultant who diagnosed me with ME 20 months ago knew my ESR was high was said it "didn't matter", but fortunately my GP was supportive in getting me the Rheumy referrals. The ESR level fell from 54 to 17 after I started the penicillin.

    I have found a demivegitarian diet helpful, low sugar, low saturated fat and rarely alcohol or caffeine. I also take multivits, vit C and echinacea to support the immune system. Like you, I was also told there was nothing wrong with other parts of my immune system, I just have a problem with strep. I have had problems with this bacteria for 27 years since I was 21 and training to be a nurse. I was told I had glandular fever so I wasn't given penicillin until I devloped complications (erythema nodosum and arthritis) and was diagnosed with streptococcal infection. I think when you have this autoimmune reaction to the bacteria, it damages the immune system and the infection keeps coming back.

    I have also found it really helpful to take someone with me (my husband) to hospital appointments, because it can be intimidating, especially when you have been ill for a long time you need someone who will support you. Do you think it might help you to take someone with you? I also kept a diary of symptoms and made a list of things to go over with the consultant, otherwise I would never have remembered it all.

    I hope this helps.

    Belinda
  • clairc
    clairc Member Posts: 90
    edited 30. Nov -1, 00:00
    Hi!

    I'm not sure what's going on with me or whether antibiotics would help. This current flare came on after a virus I got immediately after I stopping taking metronidazole, doxycycline and cefalexin. My flares seems to be triggered by bacterial infections, viral infections and stress so antibiotics would only help keep the bacterial infections under control. I guess 1 out of 3 is better than nothing but I'm not sure if the risks outweigh the benefits for me.

    I guess the problem really lies with the way my immune system works. The infections are the trigger but it's the immune response that causes the inflamation and pain. The inflamation can leave me open to getting more infections so I'm in a catch 22 situation.

    I too have a healthy diet and use supplements. I bake my own bread with half spelt and half wheat flour, I make my own live yogurt and I cook the majority of my meals from scratch (with help from my PA). I don't take echinacea as it upsets my stomach and I've spent a small fortune on vitamins over the years that have done absolutely nothing.

    I always take someone with me to appointments, I wouldn't be able to get there otherwise! Over the years the illness has made me more and more disabled and I can only walk around 50 yards on a good day before I keel over. When I go out I use a wheelchair or mobility scooter . I can't drive so there is always someone with me when I go to appointments.

    I am writing down a short description of how flares affect me and describing the pain I get. I keep notes in my diary of how I am but I don't think a doctor would have time to read pages and pages of symptoms.

    I haven't had the appointment thorugh yet but I hope it comes soon. This flare is getting worse not better and it's been 3 weeks now.
  • belinda1
    belinda1 Member Posts: 4
    edited 30. Nov -1, 00:00
    Hi Clair

    It's really hard for you that things are so bad at the moment. You are obviously doing all the right things to help yourself, but as I know from my experience sometimes nothing seems to work.

    When my son was 2 and I was a full time mum in 1998 I was so ill after tonsillitis that I could hardly walk across the room. I felt like I had been hit by an express train! It went on for about a year and then things gradually improved. I think the strep bacteria has got more virulent and it feels like a never ending battle for anyone with a problem with it. Then in 2003 I had another severe tonsillitis and it was the same thing all over again. That time I had a really bad chest infection and looked like I had aged about 20 years.

    I think that doctors are working in the dark with this because the research isn't really there and they are a bit out of touch with what's happening with this bacteria. I hope you get the help you need so things can improve for you.

    Belinda
  • marion1952
    marion1952 Member Posts: 996
    edited 30. Nov -1, 00:00
    Hello Belinda and Clair

    Just to say I am finding this very interesting. I had no idea about streptococcal infection causing reactive arthritis - although I had heard about food poisoning/gastroenteritis causing it.

    I have RA (and OA) myself - the RA came on suddently just 2 years ago and I am convinced it was hormonal related (I am mid-fifties). I am stuck with it now for life as I have a positive Rheumatoid Factor.

    I was interested that you mentioned your near-vegetarian diet Belinda, as I definitely find my joints are much better if I stick to a simple diet, low dairy, low sugar, no meat, no processed food, no tomatoes or oranges, no alcohol, no coffee. I have 'slipped' recently and been indulging in cakes and coffee and I think I am paying the price by having a bad flare up at the moment...

    I wish you both all the best.

    Marion
  • helpline_team
    helpline_team Posts: 2,252
    edited 30. Nov -1, 00:00
    Dear Claire,
    I am sorry to hear that you are having such a difficult time at the moment, but it’s good to see you’re getting such useful support and information from the online community. Do remember that you can always contact us here at the helplines for a detailed chat, particularly during this difficult whilst waiting for an appointment.

    I am aware that there has been a discussion on how diet affects arthritis, you may find our ‘Healthy eating and arthritis’ booklet useful, which you can access by following this link: http://www.arthritiscare.org.uk/PublicationsandResources/Listedbytype/Booklets/main_content/HealthyEatingbookletOct09.pdf

    I do hope you get your appointment soon
    Best Wishes
    Adele
  • belinda1
    belinda1 Member Posts: 4
    edited 30. Nov -1, 00:00
    marion1952 wrote:
    Hello Belinda and Clair

    Just to say I am finding this very interesting. I had no idea about streptococcal infection causing reactive arthritis - although I had heard about food poisoning/gastroenteritis causing it.

    I have RA (and OA) myself - the RA came on suddently just 2 years ago and I am convinced it was hormonal related (I am mid-fifties). I am stuck with it now for life as I have a positive Rheumatoid Factor.

    I was interested that you mentioned your near-vegetarian diet Belinda, as I definitely find my joints are much better if I stick to a simple diet, low dairy, low sugar, no meat, no processed food, no tomatoes or oranges, no alcohol, no coffee. I have 'slipped' recently and been indulging in cakes and coffee and I think I am paying the price by having a bad flare up at the moment...

    I wish you both all the best.

    Marion

    Hello Marion

    Thanks for your response. I also find acidic foods can make symptoms worse especially first thing the next morning. I get on well with organic skimmed milk, live yogurt and calcium enriched soya milk but for a while I didn't seem to get on with diary products. I think it was more the fat content of some dairy products that could aggravate symptoms though.

    Did it take you long to get diagnosed with RA after the onset of your symptoms? It took me 16 months and 3 consultants to get diagnosed with streptococcal infection and reactive arthritis. In fact 4 consultants if I include the gastroenterologist as I had gastrointestinal symptoms as well and was investigated for possible Crohn's disease. Still, at least my GP was understanding!

    Streptococcus can cause reactive arthritis as can the bacteria that causes Lyme disease. Both bacteria can also cause neurological damage and carditis as well - so they can be rather nasty if you happen to be affected by them and if you are, you need antibiotics. At first I was told I had ME but I had a raised ESR showing chronic infection or inflammation , so I battled on to find out why it was raised. Now I am on permanent penicillin, diclofenac and co-dydramol and things have improved quite a lot

    I think you are right that hormones affect arhtritis as well as some foods. I hope your flare settles down soon.

    Best wishes.
    Belinda