Home Forums General Discussion Flare up – what to do

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  • #301894
    Claretta
    Participant

    All,
    I have been on AB since October 2007 and OMG what a result :roll-laugh:!!! I quickly went back to normal, I stopped all anti inflammatories and I was only on Minocin 3 times a week 100mg. As I said poly-arthritis was a thing of the past :D!! It has been a month now that the arthritis is slowly creeping up on me. My right knee is massive and I can feel the inflammation  slowly moving on to the other knee. If this is a repeat of 3 years ago I will be immobilized in 3 or 4 months !! I have started taking anti-inflammatories, but I do not really know what to do with the antibiotic. Do I take a higher dose ? Is this a flare up? Did the antibiotic really work or the inflammation just happened to disappear byitself 10 months ago ?!? I am really concerned and I don't know what to do. I will try to be stricter with my diet as recently I did let go a bit. One thing is for sure I won't get upset and depressed this time otherwise it will be the end !
    Any advice on this will be very much appreciated as my GP does not believe in this treatment and I am getting the AB shipped over to the UK from Italy (my home country)
    Thank you so much in advance to you all.
    Wish you all good health.
    Clara

    #326474
    Maz
    Keymaster

    [user=325]Claretta[/user] wrote:

    All,
    I have been on AB since October 2007 and OMG what a result :roll-laugh:!!!

    I have started taking anti-inflammatories, but I do not really know what to do with the antibiotic. Do I take a higher dose ? Is this a flare up? Did the antibiotic really work or the inflammation just happened to disappear byitself 10 months ago ?!?

    I am really concerned and I don't know what to do.

    Any advice on this will be very much appreciated as my GP does not believe in this treatment and I am getting the AB shipped over to the UK from Italy (my home country)

    Hi Clara,

    As you are still shipping your mino in from Italy, I'm guessing you must still be on 100mg MWF Minocin since Oct 07? Is your diagnosis of the “Non-specific Inflammatory Polyarthritis” variety or have you been given a diagnosis of RA (seropositive or seronegative)?  

    I know you'll understand that as we're all just fellow patients here, we can't really give you any dosage advice, as that's really the realm of a physician. I can give you the contact info for Dr H in Guildford, Surrey, however, who will be able to help you through this flare with either IV clindamycin, an adjustment in your dosage and/or the addition of a second oral antibiotic. He is a very experienced AP physician who trained under one of Dr Brown's colleagues. Let me know if you'd like this info and I'll send you a private message, Clara.

    In the meantime, here are some articles on the main Road Back website that may help figure out what is going on here. The first two are self-explanatory…the third is a guideline that was written to help people who might not be responding to their AP, as there can be many other factors going on. For example, raising the dose during a flare could make things worse depending upon what is going on, as you might have to deal with a herxheimer reaction on top of the flare. In others, however, raising the dose might be what is needed. Really only a good AP physician who knows his stuff can help with this.

    Understanding the Painful RA Flare

    https://www.roadback.org/index.cfm/fuseaction/education.display/display_id/90.html

    Jarisch-Herxheimer Reaction

    https://www.roadback.org/index.cfm/fuseaction/education.display/display_id/91.html

    Things to Check if You are not Seeing Improvement on Antibiotic Therapy

    https://www.roadback.org/index.cfm/fuseaction/education.display/display_id/89.html

    The following link includes descriptions of both the Historic and Current antibiotic protocols in which you might find some some nuggest of info, too:

    https://www.roadback.org/index.cfm/fuseaction/education.sub/subgroup_id/30.html

    Clara, after a few years, sometimes patients find they plateau out on their antibiotic and they need a rotation to a different tetracycline (usually doxy) for 6 months or so, before going back on their mino. Other patients find the addition of a second antibiotic or a kickstart with IVs helps get them back on track. Navigating this alone can be a very lonely place, so my very best suggestion would be to go see Dr H for a consult and see if he can figure out your best course. I don't think Cambridge is a very great distance from Guildford, is it?

    Hope some of this helps…let me know if you want Dr H's info!

    Peace, Maz

     

    #326475
    Claretta
    Participant

    Hello Maz,

    Thank you so much for your reply. Three year ago I was told I had a case of seronegative poly-arthritis. I don't get pain as such, my joints swell up and then they became incredibly stiff (all day long). Last time my knees, ankles, wrists, elbows were affected.
    I would very much appreciate if you could pass me on the details for Dr H in Guildford.
    It would be good to see a doctor who can support me with this treatment.
    I just wanted to say that all of you at RBF are fantastic !! I just wish this kind of info could be spread to non English speaking countries too ! I have been passing on info on the AB treatment to people in Italy but it is a little difficult as all literature is in English and many people don't speak the language. If you guys ever decide to translate parts of your web in other languages you can count on me !!
    Again thank you  very much for your help and assistance.
    Clara

    #326476
    lynnie_sydney
    Participant

    Claretta – great offer, thank you. Meantime, there are various AP doctor's protocols translated into other languages on the http://www.rheumatic.org site which also advocates for and educates about antibiotic protocols. If I remember, there is one in Spanish and in Portuguese, dont think Italian. Here is the link. Lynnie

    http://www.rheumatic.org/docs.htm

    Be well! Lynnie

    Palindromic RA 30 yrs (Chronic Lyme?)
    Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
    rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
    Diet: no gluten, dairy, sulphites, low salicylates
    Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

    #326477
    Maz
    Keymaster

    [user=325]Claretta[/user] wrote:

    I would very much appreciate if you could pass me on the details for Dr H in Guildford. It would be good to see a doctor who can support me with this treatment.

    I just wanted to say that all of you at RBF are fantastic !! I just wish this kind of info could be spread to non English speaking countries too !

    If you guys ever decide to translate parts of your web in other languages you can count on me !!

    Hi Clara,

    I will send you Dr H's info in a private message, dubbed a PM around here. 😉 To retrieve it, all you do is go to the top of this page and click where it will say, “You have 1 new message.” If you have trouble, let me know.

    Clara, what a kind offer to act as a volunteer translator for RBF! You never know, we may need your services to help translate the main website one day soon! 😀

    RBF has discussed one day having an eBook version of the books for people to purchase directly from the site, which could then be translated using translation software into pretty much any language. However, attaining publication rights for a project like this can be challenging and costly, as Road Back does not hold ownership rights to the books. As you may know, Road Back is run entirely by volunteers and donations from patients like yourself. In recent years, donations have been dropping precipitously so important projects like this have had to be shelved, though outreach is one very important focus for Road Back in terms of keeping it all alive for us all.

    Another area of concern is the lack of AP physicians worldwide enabling patient access to AP. Dr H, in England, pretty much serves Europe (you're so fortunate to be so close to him!), so we are constantly on the look-out for patient feedback in case new physicians have been found that can be added to our list to help those abroad. We get requests from people as far away as Pakistan or Eastern Europe. The physician packet (under Education on the main website) was designed to help people who could not find an AP physician to help them, but may have an open doc local to them and willing to try. Having these translated into various languages would certainly be a great asset to help many more people worldwide.

    The website is in the middle of a complete revamp from some old software to HTML. This, too, has been a costly project, but it should result in easier navigating for everyone. All these things require endless financial resources, unfortunately. So keep those donations rolling in everyone!

    Clara, will send the PM to you in a few mins!

    Peace, Maz 

    #326478
    katieb
    Participant

    Hi Clara,

    How are you ? I have had a busy Easter, but was thinking about you & your visit to Dr H last week. Was he able to help you much ? I would love to hear how you got on down in Guildford if you are feeling well & have time to post !

    Katie x 😀

    #326479
    Claretta
    Participant

    Hi Katie,
    Hope you are well and had a good Easter.The visit to Dr H was very positive. He is a very nice, considerate and people-orientated man. Like you said he told me about his patients improvements, about the patient who is now scuba diving etc !;) ( I did think about you when he started talking about it !)
    Easter was a very busy for us, we had visitors so I did not manage to do much and I only had a chance to leave a post here a couple of days ago. I am not sure I am placing my posts correctly as they do not tag along the previous ones !:P
    The village the doctor is based in is very pretty I enjoyed the drive. The appointment lasted 30/40mins. The doc has told me that I am following the protocol correctly and no changes are needed. He strongly recommended to stop taking NSAID which I have immediately ! He explained that as it is not even 2 years I am on AB it is natural that every now and then I will experience mild and shorter flare-ups. He checked my right knee and said that I have a thickening of the sinovyal tissue, it will go back to normal… eventually.
    The whole experience was very positive, reassuring and highly motivating to carry on. I will see him in 6 months (if nothing drastic happens !)
    I have tried taking the MSM and wow !!!:roll-laugh: It works and I am not taking it every day. THANK YOU SO SO MUCH for all your help and advice.
    My flare up is slowly slowly going down and so is my ESR, on the other hand II have been struck by cold  booooooo !!:crying: I am spending a beautiful sunny Sunday in bed with Lemsip !
    Hope you are well too and things are looking up. The invitation for a detour to Cambridge on your way to Dr H always stands !

    Have a lovely Sunday afternoon and thank you very much for everything.

    Clara

    #326480
    katieb
    Participant

    Hi Clara,

    Just to say I am so glad that you got on well with Dr H. I think one of his best qualities is that he manages to put people's minds at rest because he listens, and has great faith in the AP – well he has seen it work plenty of times !

    Did you see Rosey's post ? – she is starting her IVs with him on June 1st.

    Very sorry to near a cold laid you low at the weekend. Do hope you are up & about now – it's a shame to miss this lovely spell of weather we are having. If things go as usual this will be our 'summer' and it will rain from June to August 😉 , so make the most of it now !!

    Hope the flare carries on subsiding !

    Keep in touch !

    Katie x 😀

    #326481
    Claretta
    Participant

    Hello Everyone !!
    It has been a while since I last posted here.
    A brief update following my visit to Dr H in April: still taking AB 100mg Mon-Wed-Fri, MSM & probiotics.
    My right knee is still swallen but other than that OK. I have full mobility and doing plenty of exercises.
    Two weeks ago I was in Souther Italy to visit my family, I went to see a GP over there to discuss the AB treatment. I was positively surprised to hear that in Southern Italy GPs and Hospitals do use Dr Brown's and otherprotocol  to treat arthritis !! The GP I spoke to said that this is not yet a conventional treatment over there either but they are happy to use it with their patients and they follow up everything and every patient on the NHS. I was amazed !!! This is really great news for anyone who lives in Southern Europe.
    The doctor I went to see advised me to stop taking the AB for 2 to 3 months to give a rest to my stomach and then start again, this because I am doing extremely well. Has anyone stopped the treatment briefly and then re-started it ? I am a little scared that if I do so I might go down hill !!
    Hope you are all doing well and enjoying the summer.
    Love
    Clara

    #326482
    lynnie_sydney
    Participant

    Claretta, nice to see you and thanks for the good news update and the interesting info about docs in Italy being willing to prescribe AP. If it were me, I would not dream of stopping the mino at this point – whatever the Italian doctor advised you – without first referring to Dr H. Can you perhaps have a phone consult with him? Unless, of course, there was a good reason for him to suggest this. Was there? Like stomach issues? If yes, even that is more likely to be related to any pain medication (esp NSAIDS) than the mino – and I would look at those first. Have your blood markers all returned to normal? That is another reason why a doc might advise stopping the treatment, if it is in conjunction with no symptoms whatsoever. 

    Dr Brown recommended rotating the antibiotic after 4 to 5 years of treatment (maybe for 6 months or so) – so that the body did not have an opportunity to build resistance to it over time – but that is not an issue in your case, having been on AP for under 2 years. BTW, I was on the same dose of mino, same MWF pulse as you for 5.5 years – with no issues – stomach or otherwise arising from this.  

    IMO, you are on a relatively low and pulsed dose of what is an extremely benign drug and you are also on probiotics. I cannot think why this regime would present stomach issues, unless they were present before therapy began. It is generally accepted that a 2-4 week break from abx is usually not a problem. But 2-3 months is a very long break. If it were me, I'd continue until/unless I had a consult with Dr H on the basis that I wouldnt want to risk losing any gains I'd made – and they've been great ones! Lynnie  

    Be well! Lynnie

    Palindromic RA 30 yrs (Chronic Lyme?)
    Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
    rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
    Diet: no gluten, dairy, sulphites, low salicylates
    Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

    #326483
    m.
    Participant

    [user=30]lynnie_sydney[/user] wrote:

    IMO, you are

    #326484
    Kim
    Participant

    I totally agree that a 2-3 month break on the antibiotics would be taking a big chance.

    Take care…..kim

    #326485
    Maz
    Keymaster

    Claretta, so nice to see you back visiting! Very interesting that antibiotic therapy is being used in Italy. Would love to hear more details on the protocols used, if you ever get a chance to learn more details.

    I ditto the thoughts of the others….in the same situation I'd personally play it safe and would wait until remission (all bloodmarkers normalised and symptom-free) has been reached for a good long period of time. Even then, I'd probably remain on a maintenance dose. 😉 Having been to hell in a hand basket with RA, the thought of going back to that place is waaaayyy too scary, so I fully equate with your fears about this, Claretta.

    Peace, Maz

     

     

    #326486
    Claretta
    Participant

    Thank you all for your comments. Following your advice I will definitely not take a break from Minocin ! So far I haven't had any side effects, no stomach upsets no yeast infections, I haven't had any blood tests done though. (is there anything in specific I should get tested for ?)
    The doctor I went to see in Italy explained that Minocin can cause the prolems I have just mentioned that's why she felt it would have been a good idea to break up every now and then. To be honest with you all I'd rather have an upset stomach than being confined to my bed ! 😀

    I am due to see Dr H in october for a follow up visit so I'll wait until then for any changes or anything as such.

    Wish you all good health 🙂

    #326487
    sierrra
    Participant

    I've been taking 200 mg/day, 7 days/wk. for three years and am doing well. When I decrease the dosage, I feel it!

    Sierra

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