Antibiotics

Starburst

Good morning!

I was thinking about this last night and thought I'd post about it to see if anyone else has had the same experience. I've noticed that after being on antibiotics, my RA improves drastically. I had a wisdom tooth infection (ouch!) and they prescribed strong antibiotics. I finished them a few days ago and as I always do after a course, I feel fantastic. I've noticed this pattern and wondered if anyone else had. Of course it might be coincidence but it happens every single time. I've read a bit about antibiotic therapy for RA and wonder if perhaps this is something I should look into.

Anyway, thanks for reading my rambling ponderings on a Saturday morning!

dreamdaisy

Yup, same here. When on anti-bios I stop the meth and humira and I used to feel great on just the abs and the steroids. Now I'm off the steroids the difference isn't so noticeable but I'll settle for any port in a storm.

There is a strain of thought that RA can be treated by taking anti-biotics (I think Patiricah knows a lot about this), I think it happens in the USA but as the long-term health implications of taking that type if medication are not fully known or understood there is some debate about it. Meanwhile, roll on the next chest infection - I want to feel better for a while! DD

earthspirit

im totally with you on this one. also the fact that you had gum inflamation means bugs floating around in your system, which from the research i have been involved in, are totally connected to flares. low level infection

i read about antibiotic therapy in the usa and spoke to rheumatologist about this and that is why he prescribed me sufasalazine, as sulphur is used in many types of antibiotics - sulphur kills and apart from some caves somewhere, nothing can live in it.

antibiotics are not good for the system as technically all they are doing is suppressing disease but with RA i am convinced there is a way to make them sing in tune and wipe out some of the effects of our disease
just imo :? :?

frogmorton

Hi Starburst

I feel like I haven't seen you for AGES!!!

I too have heard this said before on here - anyway I hope you continue to feel better Enjoy it

Love

Toni xxx

Starburst

Thank you for the opinions. I'm going to mention it to my rheumy, to see what she thinks. I am aware that long-term ABs are not great for you but then again, a lot of the DMARDs have nasty side effects. I don't see that it can hurt to run it by my rheumy when I see her in September.

Hello Toni, I do lurk and post occasionally. How are you doing? I've been busy working and looking after my mum who is now much better, so I have more time on my hands. I was feeling great....until I tripped and now have an even dodgier ankle. Of course my other one is now really unhappy too, as are my knees. I mean why should they feel left out?! More ice, co-codamol and a nap for me.

PatriciaH

Hi Starburst

This site may be useful for you:

http://www.roadback.org/

It is the site I hit on about a year and a bit ago that gives loads of information about using tetracycline antibiotics (minocycline and doxycycline) to treat inflammatory types of arthritis. Have a really good read through all the old posts and you will see a lot of people have had great results using this method.

I decided to give it a go and am about ten months down the line!! I felt I had nothing to lose. My inflammatory arthritis is really bad, in every joint just about and at my worst I was completely debilitated in bed only able to move my head. It was just the most excruciating pain ever. I was put on 30mg prednisolone (steroids) and oramorph. I then tried sulfasalazine and hydroxychloroquine both with awful side effects. I have to say the sulfa was probably too much too soon and looking back I may have been having a toxic effect and if I had reduced the dose may have been okay. If the mino doesn't work out for me then I may well give sulfa another try because it is actually an antibiotic and some sort of acid like asprin.

I can tell you that I am by no means 'cured'. I would like to present a 'balanced' view to you. However, I am down to 7.5mg prednisolone and the terrible, terrible fatigue is a lot better. My swelling and pain are still there but my bloods mostly remain stable (even though my steroids are much reduced) and this time, about a month ago, my crp had dropped down to 12 which has been unheard of before for me so my rheumatologist at this point wants to keep the minocycline going. He has given me another six months before I see him which I think is a good sign.

It is a treatment that is a long slow process. However, as you feel a lot of difference when you take antibiotics anyway you may well be one that responds quickly. Wouldn't that be good?? From the information I have read it would appear that the tetracyclines do not build up resistance with the body as other biotics do and are therefore okay to take long term. Of course, all drugs have their problems so we must be aware of anything that is different happening to us. Also to remember to take good doses of probiotics to counteract. I take Prescript Assist and PB8 For Life also Vogel Milk Thistle Complex (Liver Detox) and Solidago (Kidney Detox).

Hope this info is a little help to you. The website I mentioned has so much information and also a volunteer Doctor who you can email for advice. I have found everyone on there to be very supportive and kind.

With very best wishes

Patricia x

PS: DD - thank you for remembering me I hope all is well with you and life is treating you kindly....x

dreamdaisy

Hello Patricia, long-time no hear! I am so pleased to read that you have been able to reduce the steroids (lovely, gorgeous, wonderful but evil little pills) and that the utterly drianing fatigue is improved. There is still a great deal to learn about not only the causes of this disease but the things that can be effective in treating it - hats off to you for doing what you're doing and I am pleased that your rheumatologist is supportive. As for remembering you - well, that's not hard because, as far as I am concerend, you're balzing a trail. Last October a rheumatology nurse told me last that it's utter nonsense using anti-bios to treat arthritis, I told her to go and do some research. That didn't go down well. DD

stickywicket

That's interesting info, PatriciaH. Thanks for taking the trouble to write it all down. I'm another who usually feels better on, or after, anti-bios.

Starburst

Thank you for that detailed and informative post, Patricia. Also, thank you for giving me a balanced view. If you don't mind me asking, did you have to ask your rheumatologist or did he suggest it? I see mine next month and as I have active RA, it's looking like we need to do something.

PatriciaH

Hi DD - Aww I haven't ever thought of myself as a trail blazer - lol! I do think it is the kind thing though to share our knowledge to help others. You do that in bucketloads on here. Always the first to welcome the newbies and give support and a 'helping hand' to all who need it sharing your experiences to help others. Thank you for that I agree about the steroids. Don't know where I would have been without them but so want to get off them. Slow but sure is the way. I remember reading your journey of reducing steroids. You did brilliantly to get off them. Takes great determination and strength of character because it ain't easy is it??? The rheumatology nurse is obviously stuck in her tried and tested ways!!! Glad that you could point her in the right direction!!! Take care DD and hope all is well....x

Stickywicket - You are very welcome. Hope the information helps a little and that perhaps you could look at this kind of treatment

Starburst - I am very, very happy to help I had to ask my rheumatologist for the minocycline. At first I went down the normal route. Couldn't take methotrexate because I have autoantibodies to my liver, all part of the autoimmune illness, and methotrexate would not have been good for me to take. I took sulfasalazine and hydroxychloroquine with awful side effects and in the meantime I started researching and came across the Roadback. My rheumy is very open to letting his patients make their choices over treatment, as long as he doesn't think it is detrimental, and had no problem prescribing for me. I do think NICE guidelines still list minocycline as a dmard so your rheumatologist should be able to prescribe no problem. Trouble is some just don't want to because they see methotrexate etc as the quicker solutions. I just felt that minocyline was actually helping attack the bugs, if you buy into the infection theory, and I believe also has some immune modulating properties to help stop deterioration in the joints. I have had no further deterioration since going on mino but I must stress it is not a quick fix. Of course, I can only speak for myself and you must make sure you get regular blood checks and check ups from your rheumy. These tetracycline antibiotics are the ones they give to teenagers for acne. They also take it long term.

Any Doc can prescribe these for you Starburst. Your GP can if you are on good terms with him. Read as much about it as you can. The Roadback website is brilliant for that. There is also a private Doc down in Guildford who is reasonable for price I am told who will prescribe if you have problems. If you go to the rheumy armed with all your information and willing to take 'responsibility' to lead your treatment then there is no reason really why your rheumy can't work with you.

Good luck and I hope all goes well for you....x