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Hi, I am new to this forum, as I am searching for help and hopefully some guidance. I was diagnosed with reactive arthritis in April of this year following a streptococcal infection. I have received two large steroid injections, the first helped, but the arthritis returned with a vengeance some 8 weeks later. A second injection did nothing. I am now on 10mg of Prednislone per day, which again, is largely doing nothing, plus a load of painkillers.
In the space of 4 months, I have gone from a distance running, full time working mummy of 3 gorgeous little children, to a hobbling shadow of pain. I can barely walk across a room, let alone run after my babies.
Does anyone have any experience of this antibiotic treatment working for reactive arthritis? I have read a number of case studies that would indicate it could help.
Thank youHi HDobs,
Nice to meet you, but sorry to hear about your ReA that followed on the heels of a strep infection. I used to get horrid repeated strep throat infections accompanied by arthralgias and myalgias as a young adult.
Did your rheumatologist check you for rheumatic fever and were you also tested for the HLA B27 genetic haplotype? Rheumatic fever is a manifestation of chronic strep infection whereas HLA B27 is a marker that shows up in some people that points to a genetic predisposition to ReA.
When you get a chance, try to download and read a copy of The New Arthritis Breakthrough, by Henry Scammell, from Amazon.com. Scammell, a medical writer, wrote the book for Dr. Thomas McPherson Brown, the rheumatologist for whom Road Back Foundation was founded (to preserve his research legacy). The book describes in some depth how strep infections can lead to rheumatic manifestations and, seems that you have already done your research and found this connection! In the next month or so, a new ReA Research section will be uploaded, describing all the common infections that can cause ReA and the antibiotics used to treat it.
Although rheumatic fever is relatively rare these days with swift-result in-office testing, sometimes it is missed. Here are a couple links for you to see if anything rings bells for you:
If you’d like a list of medical providers for antibiotic therapy (aka AP or antibiotic protocols), just jot a note to the following email address and include your location (and whether you’d also like a list of the “most experienced” docs in the US), phone number (only used if we are notified that emails are not received), and your rheumatic disease type.
You can also use the search box at the top right of this forum to look for others with a history of strep here and past postings on the topic by using key words.
Hi Hdobs,
I am a fellow rea patient too after a most probably stds never been caught up to date.
My knowledge is not so broad for strep related rea.
However,I read somewhere rea with after strep infection can be treated with long term penicillin use.
In this forum friends use different antibiotics or combinations of antibiotics to trat many diseases like rea, ra , lyme and etc.
You can search for the articles about penicillin use for long term rea online.
Before that as Maz suggested before try to eliminate other diseases with your doctor.
CheersReactive Arthritis+ tachycardia+ prostatitis. 2015 till now. Just a short remission 4 months.
NAC, vit e, krill oil, vit b 1000 mcg daily, vit d 2000 iu daily and quercetin 500 mg twice a day.Hi,
Thank you for your helpful comments. My infection was streptococcal B, and it was the result of a tiny cut on my foot would you believe, rather than as a result of rheumatic fever. Would that make a difference as to whether I should be tested for rheumatic fever?
Unfortunately I am based in London, so I am not sure whether you would be able to offer me details of any helpful doctors to speak too? My current rheumatologist is very nice, but believes the only “cure” is steroids or other DMARDS, the latter I do not wish to touch.
I moved on to a gluten and dairy free diet some 3 weeks ago – I cannot work out whether this is helping, or whether the steroids might be working, but I definitely feel a little better. I am also in the middle of a parasite detox with herbs (I am trying everything) to see if this will help.
If you could give me some guidance on whether I still need the fever tests, I would be grateful, and whether you happen to know any open minded doctors in London. Thank you.Hi HDobs,
At the following link you will find some research correlations with Group B Strep and RA.
There is one AP doc in Banstead, Surrey, not too far from London, if you’d like his contact info? As Eagle mentioned, antibiotics with bacteriocidal properties, like penicillin or clindamycin, are likely the sort of abx that would help and hopefully the doc in Banstead can help.
That is amazing, thank you – and yes please for the doctors details in Banstead, that is really close to us in South LONDON.
Thank you so much, it is so nice to find someone that actually understands and can help.HDobs, have sent you a private message with the doc’s contact info. If you could let me know you got it okay that would be lovely.
Pleasure and look fwd to chatting further as you get started on your road back to wellness.
Dear Maz,
I can’t ntacted the doctor in Banstead and am on a waiting list for an appointment in two weeks. I will let you know how I get on.Thank you
Fingers crossed for you, HDobs! Putting it out there that Dr. E. will be able to help you back to wellness and look fwd to your update. In the meantime, you might want to get acquainted with the Henry Scammell book and info on the website. We are all here if you have questions in the meantime.
Hi Maz, I hope this message finds you well.
I went to see the doctor in Banstead. It was so nice to sit and actually have a proper discussion with someone that understands my pain and symptoms. The doctor has initially put me on a very restricted diet to try and control the reactive arthritis. I am on day 3 of this diet, and I have to say, I feel terrible – my symptoms are worse, I am losing so much weight (I now weight 116lbs), I am exhausted, I am hungry, and have had to resort to more painkillers and my NSAID to get through each day at work. Is this normal? I have to stay on this diet for 2 weeks and return to the doctor for a further evaluation. I also need to do a stool test. I have also gone down with yet another cold which does not seem to be going away.
Do you think I should ask to be put on antibiotics when I return to the doctor?
I would be grateful for any advice.
Thank you
HannahHi Hannah,
If it were me, I wouldn’t wait to start abx, but I do see the rationale for cleaning up the diet, too. Reactive Arthritis is a funny one, because food sensitivities can be more obvious. E.g., starches or nightshades. What kind of duet did Dr. E. put you on? If it was some sort of detox diet, then, yes, it’s possible to feel wretched for a while. I’ve just been doing a Paleo diet detox cleanse and it is quite horrid for the first few days. Hard to know if what you’re experiencing is this or if you are flaring due to your current infection….maybe both?
Aside from the stool test (which is great, because he’s prob looking for common infections associated with ReA), has the doc blood-tested you for any infections? Maybe he is waiting on results before starting you on an individualized protocol?
Sorry you’re feeling so rough and hope it’s not long before you start your AP, bearing in mind that early worsening, after you begin, is very common. So, it’s worth getting as informed as you can about how to detox at home. There are some very easy things one can do immediately, but always worth cross-checking supps or modalities (e.g., far infrared sauna, hot baths with epsoms and hydrogen peroxide, etc) first.
We are here when you get started on your AP, Hannah, and so feel free to ask any questions you might have.
Hi Maz,
Thank you for your reply.
The diet consists of restricted meats, some white fish, certain vegetables and certain fruits. So, for example, I am allowed game meat and turkey, but no chicken or beef. I can eat vegetables such as courgettes, sugar snap peas and swede, but no carrots, no nightshades. I am allowed berry fruits and passion fruit, and I am also allowed seeds which surprised me. From all the AIP diets I read, seeds are a definite “no”. The doctor has requested I stick to this diet for 14 days and then see how I feel.My concern is that I think some doctors confuse reactive arthritis with rheumatoid arthritis. The conditions, in my mind, are very different, and I am not sure that the treatment should be the same (ie. the diet). Would this also be your view?
Could I ask what you use the hydrogen peroxide for?
Thank you again
HannahI am curious as to how you know it was from a cut on your foot. I was accidentally stabbed with a knife in my foot. I really took care of it and did not seem to get infected. I did not get a tetanus shot. The next day my fatigue really kicked in all though I was already having rashes and hair loss. I have always wondered what part my injury played. Good for you that you at least know what and why!
Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes, etc.
RA Factor 71 in Jan 2015 down to 25 as of September 2017
DR4/DQ8 HLA...biotoxin illness
IGG food allergy to wheat, egg, and dairy...probably all grains
Vit. C&D, probiotics, milk thistle, turmeric, fish oil, methyl b 12, methyl folate, digestive enzymes, Candisol, Ubiquinol, berberine, chlorella, Moducare, LDN, monolaurin, Triphala, Patriot Greens, Paractin
MTHFR compound heterozygous
Igenex IGM positive Lyme, minoMWF
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