How to know if AP is working

[Anne-Marie]

I started AP 1 week ago. I saw my GP yesterday and he was concerned because he say my ESR and CRP are normal at the beginning of treatment so he will have nothing to measure any progress by. Is the rheumatoid factor or anti-CCP affected by this treatment at all? I feel I need something to give him as he has never treated anyone on the AP before and it took some convincing to give it a try. If anyone has any information I would be very grateful.

[Maz]

[user=1218]Anne-Marie[/user] wrote:

I started AP 1 week ago. I saw my GP yesterday and he was concerned because he say my ESR and CRP are normal at the beginning of treatment so he will have nothing to measure any progress by. Is the rheumatoid factor or anti-CCP affected by this treatment at all? I feel I need something to give him as he has never treated anyone on the AP before and it took some convincing to give it a try. If anyone has any information I would be very grateful.

Hi Anne-Marie,

Well, I have my experience to share. In the beginning, all my inflammation markers for RA were very elevated (CRP, WBC neutrophils, anti-CCP and RF) …all except ESR, strangely.

When I began antibiotic therapy (for Lyme, which you can read about in my progress thread below my sig line), all these markers elevated significantly when I was herxing in the early months. My RF, which was around 125 to start, rose to the mid-500s and my anti-CCP (don't know what that was prior to treatment) was well above the upper parameter my lab gives for highly severe, swiftly progressing RA. My cardio CRP was 44 at its worst during herxing. This three month period of worsening wasn't pleasant, but it was after this that I began the 3 step fwd and 2 step back dance to recovery. It's taken 2.5 years, but my CRP is now 3.9, RF is 34 (was 18 last month – 16 is normal) and anti-CCP is a weak positive at 29 (below 20 is normal). I have no morning stiffness now and my joints only ache if I rick them at funny angles, but no constant pain like before…nearly there.

Being totally seronegative for RA can be challenging to a physician who relies on labs to mark progress, but essentially in these cases progress should be gauged on symptoms and the longterm improvement trend. Typically, RA patients will worsen in the period after starting AP, called a Jarisch Herxheimer reaction. This includes both physical worsening and worsening in bloodmarkers. Here is a little schpiel about this in the “Physician's Packet” on the main site, under Historical Protocol and “The Herxheimer Flare.”

https://www.roadback.org/index.cfm?fuseaction=studies.display&display_id=184#Anchor-The-51540

“Differentiating between a Herxheimer, an RA flare and an allergic reaction to the drug –

Laboratory tests can help differentiate between a worsening of disease (RA flare), a Herxheimer reaction to microbial toxins, and an allergic reaction to medication.

1. WBC will elevate in a Herxheimer and lower in a flare. [/*:77j8zeox]
2. A Herxheimer will also exhibit a coincidental elevation of SED rate, gamma globulin and total globulin, and a fall in serum albumin and hematocrit. Patients who exhibit this flare reaction accompanied by anemia, depression of serum albumin, elevated total globulin and gamma globulin are probably reflecting a more intense reaction pattern to anti-L substances than in hematologically mild cases. [/*:77j8zeox]
3. A marked increase in eosinophils (for instance about 30%) is an indication of an allergic reaction to the drug. “

[/*]
Might be worth printing out a copy of the Current and Historical Protocols for your physician, as this should help alleviate any concerns he may have.

Hope this helps a bit?

Peace, Maz

PS Herheimer flares at the start of treatment vary between people…for some it's short-lived and hardly noticeable….for others it can be very noticeable and last for months. Here is a link to a description of the Herx:

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

 

[Maz]

Anne-Marie…just thought of another resource your doc may like to see…it's a video of Dr Brown that was made in the mid-80s and was produced specifically for physicians wanting to learn about AP. Note the full body bone scans taken of one patient over a period of years and how the inflammation in their joints gradually decreases with time. This is a longterm therapy and may be confusing to physicians used to using antibiotics for acute infections and wanting to see results immediately. 😉

http://www.vimeo.com/3154687

Dr H in Guildford, Surrey, may be willing to consult with your physician, if your doc is open to this. Did I send you D H's contact info?

Peace, Maz

[maz.aust]

Hi Anne-Marie,

Glad to see you on the RB site.

If it makes you feel a little easier  – 
I too didn't have any abnormal blood results, all was normal, however I did have symptoms and my symptoms included pain pain and more pain – back in the beginning I didn't even have any inflammation and although I knew it was around the 6-10 wk mark I didn't really have any real indication of when the pain would hit.  It just would.  I could be sitting having a coffee and suddenly without warning I was in excruciating agony. 

So, for me, rather than have blood results to go off, I used the pain and the frequency of the the flares to gauge whether or not AP was working.  It took a little while, but eventually the time between flares increased and the intensity of the pain decreased .. that told me it was working. 

It has been 7 mths now since I had what I know to be a flare and I am counting down the time when I can celebrate my first anniversary 'flare free'.  That doesn't mean I am ache free, I am pain free!  As you know my goal is to get to remission in 3-5 years so I have a while to go yet.  However, I keep watching the progress of people like Maz and Kim and many others and remind myself that it can happen, you can get better and if you are lucky go into remission. 

 

 

 

Dec07: Diagnosed PRA, (CTD; Fibromyalgia; suspected Lyme):
Mar08: Diet to heal gut/bolster immune system (no gluten, dairy, sulphites or sugar)

Jan 2018: ABX Mon/Wed/Fri (started AP 2008)
1/2 x 150mg Roxithromycin(Biasig), 1/2 x 150mg Clarithromycin (Klacid),
1/2 x Fungillin, 1 x 250mg Cephalexin (Keflex)

All off days Probiotics

[m.]

I knew AP was working because I began to string together some hours where I didn't notice my joint pain.  I think this was about two months in.  I also noticed that I began to be a wee bit less stiff & achey in the mornings.  This continued to improve gradually, with less pain in my feet, less pain in my ankles, less pain in my knees. 

I've been on AP since July 08.  Since then, my CBC bloodwork has gradually improved, with everything coming in line/normal.

I'm not tracking much else at the moment, having to do with arthritis perse.  Working on optimizing thyroid, and sex hormones.

HTH

[lynnie_sydney]

Anne Marie – Palindromic RA has a different etiology than RA and it is usual for CRP and ESR to both be in normal range (except during the intermittent attacks). MIne have always been. I think I have also already mentioned to you that my RF was  normal too for the first two to three years that I had PR. When I started AP, I did it  through my GP also (a non-AP literate doctor) and I case managed myself. What I did, though, was educate myself as far as is possible. I read everything I could on the educational section of this site and The New Arthritis Breakthrough from cover to cover – which in my view is the essential starting point. So I knew what to expect. This is particulaly important in terms of the Jarisch Herxheimer response. Without knowing about this, you and your Doctor may well think you are getting worse, when in fact the temporary worsening of symptoms is a very good sign that the antibiotic is getting to its target. 

I have pasted a link to my testimonial from the main site. If you scroll through it, you will see a detailed description of my Jarisch-Herxheimer response (my “herx”), which also included my bloodwork. Good luck with starting the protocol. Lynnie

https://www.roadback.org/index.cfm/fuseaction/community.display/display_id/490.html

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)

[Anne-Marie]

Hi everyone,

Thanku so much for all of the information it is extremely useful. I havent been on-line for a while because I have had a flare, don't know whether it is a herx or an emotional response because of a relationship breakdown. Time will tell I assume.

 

[Maz]

[user=1218]Anne-Marie[/user] wrote:

I havent been on-line for a while because I have had a flare, don't know whether it is a herx or an emotional response because of a relationship breakdown. Time will tell I assume.

Anne-Marie, so sorry to hear about your relationship breakdown, especially when you're going through the wars with your health. Why everthing has to hit us all at once, I'll never be able to fathom. 😕 

It was a crazy time for me, too, when I became unwell 2.5 years ago. I got Lyme disease which made me very unwell, very quickly. At that time, my Mum was diagnosed with aggressive breast cancer that spread to her liver and passed away with 5 weeks, we had a car crash that nearly totalled our new car on Thanksgiving weekend during a heavy rain storm (by this point I was in agony and could barely move) and then our septic pump in the basement furnace room exploded when we got home that same night and we had sewage seeping everywhere in our recently finished basement….the following week, I was given the highly seropositive, very severe RA diagnosis. All this happened within 3 months. The irony in all this is that the septic pump really said it all – the s**t had really hit the fan. :doh:

Could be you're herxing, as you just started your AP, but stress will bring on a flare, too. So take care of yourself, Anne-Marie. You have some new friends here and we understand.

Peace, Maz

[maz.aust]

[user=1218]Anne-Marie[/user] wrote:

Hi everyone,

Thanku so much for all of the information it is extremely useful. I havent been on-line for a while because I have had a flare, don't know whether it is a herx or an emotional response because of a relationship breakdown. Time will tell I assume.

 

Hi Anne-Marie,

Maz is right, everything always seems to happen at the same time …

Not to worry whether it is a flare or herx – doesn't really matter right now, because stress can definitely create a reaction in itself.  Just try to concentrate on the things you can do something about.

Here is the hard bit (and yes I am not too good at taking my own advice) DON'T WORRY ABOUT THINGS THAT HAVEN'T HAPPENED YET!  Time is the only thing we have on our side – you can't really do anything about yesterday and you can only plan about tomorrow, today we have control over, so concentrate on today first.

Keep well and keep postitive,
Maz-Aust

 

Dec07: Diagnosed PRA, (CTD; Fibromyalgia; suspected Lyme):
Mar08: Diet to heal gut/bolster immune system (no gluten, dairy, sulphites or sugar)

Jan 2018: ABX Mon/Wed/Fri (started AP 2008)
1/2 x 150mg Roxithromycin(Biasig), 1/2 x 150mg Clarithromycin (Klacid),
1/2 x Fungillin, 1 x 250mg Cephalexin (Keflex)

All off days Probiotics

[Author]

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