long term effects of AP

[foxy]

Hello I have been following this forum for some time and delighted that it is back up and running.I know it takes a great deal of effort to rum any forum,so a big thank from us.My wife has been diagnosed with sero rheumatoid arthritis in February of this year and has been on the standard drug treatment since them and is still has stiff hand and joints for most of the day.She is not due to see the rheumatoid specialist till 22 December when no doubt he will prescribed more or different drugs.I have been personally reading a lot about the AP for some time…Here in the UK through our taxes we fund the National Health Service and then all our medical needs are provided free.This although great can have some drawbacks like trying to find a specialist who will undertake to prescribe and treat patients with the AP
I have read on some Uk web sites that the AP treatment deals well with the symptoms but does not prevent further joint damage.
Obviously that point of view maybe will be from doctors who have little real knowledge of AP here in the UK.My obvious questions would be are there lots of people out there who have been on the AP for many years now and know through maybe xrays and tests that Ap has stopped further damage to their Joints?

I hope you in the USA have forgiven us Brits for the war of independence Ha

I would be grateful for any information.

Thank you

Foxy

[Kim]

Hi foxy, and welcome to the Roadback board, but sorry your wife is struggling.

We have another memeber, Ruth, aka “spacehoppa” (her user name) from the UK that will be able to give you some valuable information on how she has gone through the system with great success. Ruth is a mother with two young children and was a mess with her RA, but today is doing quite better. You might want to sent her a Private Message.

We always recommend you read, The New Arthritis Breakthrough, by Henry Scammell and you will also find a wealth of information in the Home section of the board.

Take care…..kim

[PhilC]

@foxy wrote:

I have read on some Uk web sites that the AP treatment deals well with the symptoms but does not prevent further joint damage.

That may be true if one considers only minocycline. The problem, as I see it, is that many doctors are not following the antibiotic protocol developed by Dr. Brown. It seems as if they have latched onto minocycline and have ignored the rest of Dr. Brown’s protocol. That’s if they even know about Dr. Brown. It’s quite possible that many doctors have never heard of him, and only know about minocycline because of the Minocycline in Rheumatoid Arthritis (MIRA) Trial (or related research).

Dr. Brown used NSAIDs and limited corticosteroids in addition to antibiotics. Based on a research study I found, it appears that the combination of antibiotic plus NSAID may help prevent joint damage.

See:
Tetracyclines suppress matrix metalloproteinase activity in adjuvant arthritis and in combination with flurbiprofen, ameliorate bone damage.

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[Maz]

Hi Foxy and welcome!

I recently spoke to one of the co-founders of the Road Back Foundation, Pat Ganger (whose story is documented in The New Arthritis Breakthrough by Henry Scammell, mentioned above) and she shared that Carol Lange, a longtime patient of Dr. Brown’s (20 years!) is still on a maintenance antibiotic therapy for her severe RA that has been in remission for years…she has no discernable joint damage, except for a clicking in one knee.

As Phil pointed out, the tetracyclines, quite apart from their antibiotic properties, have an incredible range of immune-modulating properties, including MMP inhibition, which blocks collagenase, the joint destructive enzyme that breaks down collagen. So, even if one doesn’t adhere to infectious theory, per say, the tetra class of antibiotics are wonderful for RA and other collagen-vascular rheumatoid diseases.

Couldn’t help but giggle at your comment about forgiving the Brits for the war of independence….I’m a green card-holding Brit/Canuck, living in the US…from Hampton, Middlx, and hubby from Maidstone, Kent. The Americans are a pretty lovely, forgiving bunch. 😀 Hubby’s company is based in Boston where the Boston Tea Party took place…they’ve even forgiven him up there for his cheeky British remarks and gave him a job. 😆

Foxy, would you like the name of an AP doc in Guildford, Surrey, who trained at Dr. Brown’s clinic? He offers both IV clindamycin therapy and oral antibiotic therapy to his rheumatoid patients. Would be happy to send you this info, if needed.

[foxy]

Thank you for the replies from all and now I really know we Brits have been forgiven.Ha Maz its seems we are southern Brits like you and your Husband,we are located in Romford with its Market which has been running since 1200Ad.I would be delighted if you could sent us the doctors details from Guilford.it would be great if he was NHS as patients over here have been given greater choice and I believe can asked to moved to another specialist .We are very lucky here as most healthcare is free at the point of contact and most Brits do not have the worry of paying medical bills.Our youngsters do not know how lucky they are
My wife finds reading to much about RA to overwhelming for her,so I do all the research and feed her information,She has been unable to most daily tasks as her hand are still stiff and painful for most of the day,The good news is that although she gets fed up with waiting up with stiffness in her body she is not the type to suffer with depression.
I am grateful to you all

Foxy

[Maz]

@foxy wrote:

Thank you for the replies from all and now I really know we Brits have been forgiven.Ha Maz its seems we are southern Brits like you and your Husband,we are located in Romford with its Market which has been running since 1200Ad.I would be delighted if you could sent us the doctors details from Guilford.it would be great if he was NHS as patients over here have been given greater choice and I believe can asked to moved to another specialist .We are very lucky here as most healthcare is free at the point of contact and most Brits do not have the worry of paying medical bills.Our youngsters do not know how lucky they are
My wife finds reading to much about RA to overwhelming for her,so I do all the research and feed her information,She has been unable to most daily tasks as her hand are still stiff and painful for most of the day,The good news is that although she gets fed up with waiting up with stiffness in her body she is not the type to suffer with depression.
I am grateful to you all
Foxy

Foxy, you’re a dear guy to be advocating for your lovely wife like this. I understand how difficult it is to do this for yourself when so ill. I hope that when she starts to feel better, she’ll know she’s welcome to post here and join in the chat. In the meantime, you’re always welcome, too! We have lots of spouses who post for their loved ones, kids of elderly parents, or parents of children…so everyone is welcome. 🙂

I’ll send you a private message (aka a PM) with Dr. H’s contact info…he has a bit of a wait-list, I believe, but when you call, if you ask to be put on his canceled appt list (if you can travel to him at short notice, that is), then you might be able to get in sooner. I am not absolutely sure whether or not he is taking patients privately or on NHS, so you’ll have to ask when calling. UKers are fortunate to have NHS, as are those in Canada, but ironically it also means there are a severe shortage of docs willing to treat outside current rheumatological standards of care. 🙁 Nevertheless, there was an amazing study that came out of Charing Cross Hosp in 2006 (which I think Dr. H was involved in?) that you might like to print for your files for any docs who may question your wife’s choice of treatment. This study was so close to Dr. Brown’s protocols, it beats MIRA in my estimation, though it was only a small trial:

http://www.jrheum.org/content/33/2/224.abstract

When I went to college in Nottingham, donkey’s years ago, a favorite hang-out was “Ye Olde Trip to Jerusalem,” touted as the oldest pub in England, buried right into the stone walls surrounding Nottingham castle. Bits of stone would fall into our pints (or in my case cider!).

http://www.triptojerusalem.com/

There certainly is some history in old blighty!

Foxy, to retrieve your PM with Dr. H’s contact info, just look to the top of this page and click where it should say (1 new message). Someone else had some trouble opening their PM yesterday, so if you have any trouble I may need to email it to you.

[foxy]

Maz I tried to send you PM but was unable to do so.. Thank you for your message with all the information about the Doctor in Guilford it was much appreciated.My wifes way of copy with her RA is reading books.she is on 400.mg Hydroxychlorogine daily and Methotrexate 15mg weekly plus 7.5 mg daily Prednislone .She has seemed to have made no improvement since starting treatment in May of this Year.Her rheumatoid doctor is a professor and I do not know his views on AP treatment.My Problem is that My wife is still keen to stay with the usual standard treatment for RA.I have just talk about this now with and she says she wants to give the standard treatment a go first before trying alternatives.whilst I spend .time reading about RA,my wife is the opposite and that her way of coping with her RA.I have to respect her feelings as it is her body and I know I must not bully her into something she is not ready to take on at the moment.However I take great comfort reading about AP And from reading all the articles, know there is another better way available
My wife before RA was a fit slim woman (still slim) and very active.This has made a huge change in our lives at the moment,however we try hard at all time to remain positive 😀 😀 I am still keen to learn more about the AP and have all ready got the book recommended by the foundation here.I am really pleased with yours and others posting here.

regards
Foxy

[Maz]

@foxy wrote:

Maz I tried to send you PM but was unable to do so..

She has seemed to have made no improvement since starting treatment in May of this Year.Her rheumatoid doctor is a professor and I do not know his views on AP treatment.My Problem is that My wife is still keen to stay with the usual standard treatment for RA.I have just talk about this now with and she says she wants to give the standard treatment a go first before trying alternatives.whilst I spend .time reading about RA,my wife is the opposite and that her way of coping with her RA.I have to respect her feelings as it is her body and I know I must not bully her into something she is not ready to take on at the moment.However I take great comfort reading about AP And from reading all the articles, know there is another better way available

Foxy, I’m sorry you had trouble sending a PM to me. You’re the second newcomer to mention this to me today, so I’m thinking it might be a software setting problem that needs to be looked at. If you post the problem in the Tech Issues thread above, Lynnie_Sydney may have a solution for you or will be able to ask the webmaster for assistance on your behalf. She’s been working very hard to sort out these kinds of software ‘running in’ issues for us all, being the more tech-minded amongst usa:

viewtopic.php?f=1&t=5232

It’s completely understandable that you want to respect your wife’s wishes on treatment choice. We’re just here to support those who do choose it or want to know about it, so when/if she’s ready to give it a go, then we’ll always be here for you/her if peer support is needed. 🙂

Should probably also mention that minocycline isn’t really “alternative,” because it is approved by the American College of Rheumatology as a DMARD (disease modifying anti-rheumatic drug) – not for its antibacterial props but disease-modifying props. So, it wouldn’t be like “asking for the moon” from a rheumatologist and they should be aware of this treatment, though they may believe it to be one of the least effective DMARDs:

http://www.rheumatology.org/publications/hotline/archive/0195minocycline.asp

Additionally, minocycline can also be used safely in conjunction with other rheumatologic drugs, so it doesn’t have to be an either/or situation. The goal of most people who arrive here, who are already on other RA drugs, is to start AP and then gradually wean off the other drugs (after the initial herxing). As an RAer, myself, I think most RAers would prefer to be on meds that cause the least harm to the body in the longterm, but so many aren’t even aware of this as a safe, effective, “approved” treatment option. I think one of the major reasons is because rheumies, in general, often prescribe too high a starting dose for most hypersensitive RAers (as per MIRA 100mg twice daily, described in the ACR article above), which in turn causes the paradoxical early worsening (herxing), and may not acknowledge this to be herxing, as RA is believed to be an idiopathic (of unknown cause) disease. Patients, themselves, may not understand this phenomenon, and therefore both uninformed patients and their rheumies will deem AP as only useful for mild, early disease and inadequate for swiftly advancing disease when it’s just early herxing from bacterial die-off that could be averted simply by starting in a low and slow fashion with dosing.

As you’ve already got the book, you’ll probably also know that Brown felt that the earlier RA was treated with AP, the swifter the turnaround. It can be a long old process weaning from the other drugs, but it can be done and many here have done it successfully.

Hope the above helps in some way, Foxy…we’re here when/if your lovely wife would like to try AP. 🙂

[lynnie_sydney]

@foxy wrote:

Maz I tried to send you PM but was unable to do so..

Foxy – have you set your preferences in your user control panel (to the left above?) If you go into that and click on Board Prefernces there should be some boxes to check such as allowing of Private Messages. If this isnt the problem, please let me know – if you post it in the technical issues thread that would be great because then others can see the questions and (hopefully!) answers. Lynnie

P.S. I am a pommie also, now living in Sydney. London-born and with family now all in Sevenoaks, Kent. My best friend came from Romford! If I mentioned the family team is Arsenal, would that stop a potential friendship in its tracks?

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)

[foxy]

Maz and Lynnie a good morning here from a bleak Grey overcast Romford.Bet you miss the winter weather here in the UK.Lynnie you must be kicking yourself for moving to Sydney.I think I have sorted out the PM now.My Son is Arsenal 100% and even has an Arsenal quilt cover on his Bed.When I first tried the RBF in September the site was not operating normally and I often did wonder if it was because of lack of interest or supporters.I was glad to see the site up and running again,I know that a lot of forums can be badly damaged by unchecked viruses and needs volunteers to help guard against these problems.
My wife stays in bed till late morning until her body feels a bit less stiffer.As she feels a lot better in the evening she tends to go to bed very late now now.We were planning to maybe go to Thailand in January for 2 months to avoid a bit of the English winter.We decided that perhaps it was not a good idea at the moment until Mai had stabilized enough to enjoy been away from home.Once we had made that decision it took the pressure of us both as after booking expensive flights, it would be always on our minds wondering if Mai would be fit enough to travel.We are due to see the Rheumie on the 22 December and the truth is it a date we live for wondering what the Rheumie will do.I will keep you informed.I am converted to the AP personally and would elect to have this treatment if it was my body
Anyway again thank you for such as responsive and welcoming posts.Maz your postings are very informative and you obviously know your subject well

[lynnie_sydney]

@foxy wrote:

Maz and Lynnie a good morning here from a bleak Grey overcast Romford.Bet you miss the winter weather here in the UK.Lynnie you must be kicking yourself for moving to Sydney.I think I have sorted out the PM now.My Son is Arsenal 100% and even has an Arsenal quilt cover on his Bed.When I first tried the RBF in September the site was not operating normally and I often did wonder if it was because of lack of interest or supporters.I was glad to see the site up and running again,I know that a lot of forums can be badly damaged by unchecked viruses and needs volunteers to help guard against these problems.

Foxy – you’ll be pleased to know that we are in a major La Nina weather cycle here and it’s been rain, rain, rain since about June, so you neednt feel too envious. The upside to this is that the whole of the state is now out of drought for the first time in 12 years. The Forum has been extremely busy for most of this year. The late September issues were posted on the Forum – loads of people shut out including most of the Volunteers and many, many regulars. That software was becoming increasingly unstable with virtually no tech support any more so we decided to change software and it was a much longer process than anticipated.Glad you didnt decide to jump ship early! 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)

[Maz]

@foxy wrote:

My wife stays in bed till late morning until her body feels a bit less stiffer.As she feels a lot better in the evening she tends to go to bed very late now now.

We were planning to maybe go to Thailand in January for 2 months to avoid a bit of the English winter.We decided that perhaps it was not a good idea at the moment until Mai had stabilized enough to enjoy been away from home.Once we had made that decision it took the pressure of us both as after booking expensive flights, it would be always on our minds wondering if Mai would be fit enough to travel.

Foxy, the pattern of sleeping in and going to bed late is exactly the pattern I got myself into when I was so sick in the beginning, too. It was hard getting up in the morning, not just because of the pain and unbearable stiffness, but because of the depression and, basically feeling pretty useless, as I couldn’t see what the point was in getting up when I couldn’t do anything worthwhile, anyway. So, I’d stay up late, when the pain was lessened and make the most of those wee hours. Of course, no one else in the house was up at that time, so I was basically living in another time zone from the rest of the family. This bad habit has persisted and I’m still a night owl, as a result, made worse by mid-life hormones now that keep me awake and buzzing at night. Oh, what fun, eh? Well, you sound like the kind of loving hubby who just ‘gets it’ and is supporting Mai all the way, bless you.

Must have been disappointing to postpone your Thailand trip, but can definitely see the wisdom in doing so. I used to live out in the Far East and it’s one heck of a flight out to Bangkok. The up and down barometric pressures in planes is something rheumatics have a hard time coping with. Flares are pretty common when folk get home from vacation…maybe due to dips in Vit D when after being in the sun? With my weak western stomach, too, I was always getting bugs. Well, hope Mai feels better soon and the trip can become a reality for you both.

[foxy]

Maz I have just read your posting to mai and she agreed with everything you said.it so nice to read your posts.Thank you again for your help and advise.
Some ask what has the new president of the USA done.If what I have read is true then he has opened up Medical care to millions of Americans and that must be a great legacy for him.My heroes are not sportsmen and pop stars but people who discover new drugs that relieve human suffering.The Frenchman who discovered vaccinations and saved millions from the ravages of small pox was truly a great a man.

Regards

foxy

[foxy]

I must ask this question before I forget again.A lot of Ra sufferers have lyme disease as well.I check out lyme disease on goggle and it says its caused by a tick bite Please forgive my complete lack of knowledge on lyme disease and RA,but are Ra sufferers just very unlucky to be bitten by a tick that causes lyme disease ?
I would be grateful for any information on this subject.

Regards

Foxy

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