Some advice needed

[ablegirl]

Dear fellow Forum users,

My name is Jane and this is my first post although I have been reading others posts for a while. I have RA, diagnosed 1998.
I have been taking Minocin (self prescribing since July). I was unable to obtain the Minocin here in the UK without a prescription. I first asked my GP doctor for Minocin in 2010 but he said he had never heard of this therapy and of course recommended Methotrexate which is the standard protocal here. I finally managed to obtain Minocin myself in another European country. it is brand Minocin and only costs me 5.00 euros a pack (a pack is a months supply). Anyway to cut to the chase I noticed an improvement after two weeks, less swelling and pain. i have continued to improve. My story is quite a sad one which others may be interested in hearing at some stage, I think everyones journey offers hope and experince for others, especially those people recently diagnosed. I have been in a very bad way since 2008 when I made a very bad choice re: my treatment. I went umedicated for many years leading a full life after my initial diagnosis but after a very stressful peiod I visited a Rheumatologist and took a course of steroids. High dosage for six weeks. In my ignorance I stopped the steroids dead and went into a massive flare. I have stayed that way and unfortunately sustained a lot of physical joint damage. But as they say its not over until the fat lady sings. In March 2010 ESR was 80, CRP 21, and RF factor >700. January 2011 ESR 49, CRP 19. RF 643. Started Minocin July 2011, tested bloods beginning Sept, ESR 41, CRP 18, RF 577. latest bloods Nov 2011 are ESR 30, CRP 11, RF 587.

I know this email is very fragmented but as you can see from blood works, since starting Minocin there is a definite improvement in bloodworks. I told my GP (the one who hadn’t heard of antibiotic treatment for Rheumatoid) that I had been taking Minocin since July and the improvement I have felt which is being borne out in blood results. He looked quite taken aback. After a lof of waffling what I wanted to ask is if the ESR and CRP have fallen to relatively low levels from previous ones, I’m confused as to why the RF factor is still high and should I be concerned. As I mentioned I have very definite disability and must take very positive steps to limit further damage. Definitely do not want to start on conventional meds having come this far and seen such an improvement on Minocin in only five months. I am assuming lowering inflammation levels mean less damage being done to ones joints.

I will stop writing now before I bore everyone but I just wanted to say how much comfort and support I have got from reading posts and responses on this website.

Look forwarding to receiving any responses.

Love for now

Jane

[Patricia.Ann]

Hi Jane 🙂

Really sorry to hear that your GP wasn’t so supportive regarding AP 🙁 It is very difficult here in the UK to get that support I think. I wanted to let you know though that I am prescribed Minocycline from my Rheumatologist so if there is ever a time you are unable to self subscribe the possibilities are there for you on the NHS. You just have to find a Rheumy who is more open to listening to his/her patients!!!

There is a private Doc in Surrey (you will be able to get the details from the site) who also does consultations at reasonable cost, so I have been told, if you needed extra support. He would be able to give you good advice regarding your blood work no doubt. Someone experienced on here will also chime in I am certain of that. This is such a caring forum 😀

I empathise fully about your long term flare. I have also been in a full body flare since 2009. Only long term steroids and morphine up to now have helped. They bring with them their own set of problems. I really don’t want to go on the heavy duty drugs and I guess that is why we are all here helping each other.

I hope you get some answers here very shortly.

Take great care.

Patricia x

[Maz]

@ablegirl wrote:

In March 2010 ESR was 80, CRP 21, and RF factor >700. January 2011 ESR 49, CRP 19. RF 643. Started Minocin July 2011, tested bloods beginning Sept, ESR 41, CRP 18, RF 577. latest bloods Nov 2011 are ESR 30, CRP 11, RF 587.

…what I wanted to ask is if the ESR and CRP have fallen to relatively low levels from previous ones, I’m confused as to why the RF factor is still high and should I be concerned.

Hi Jane,

Is it four or five months since starting mino? Just wondering as we’re just half way thru Nov and you may have begun AP mid-July? A month is really neither here nor there, as this is a long-term therapy, but usually when there is a lot of inflam, all labs will worsen initially and take a bit of time to start coming down. If you check out the graph of my labs in my first year in my Personal Progress thread (link in my signature line below), you’ll see a pretty large spike in my labs within the first 3 months, after which point they began to decrease in a wavy-like fashion…up and down, but the general trend being down.

Interestingly, although you were not taking anything (except for the high dose pred-pak), your labs were on a downward trend anyway prior to starting AP. I wonder if this might have been due to going into a flare after the pred and then things starting to come down after that? I don’t think you mentioned when you took the pred, so just surmising on this.

So, yes, some labs may worsen initially, but the very positive thing is that your inflam numbers are coming down! It is inflam and swelling that causes damage and although the antibody markers for RA (rheumatoid factor and anti-CCP) may be prognostic of disease severity, these can be elevated for a while before RA kicks in and RF can also be elevated if one just has a passing infection. Thing is, RF may waver up and down until remission is reached, but the general trend over the longer term should be one of going down. CRP and SED and more reflective of disease activity in the now and CRP can change on a day-by-day basis with SED seemingly being less sensitive in this regard. So, getting labs run fairly frequently should help you to determine how you’re doing on the therapy so you can take a retrospective glance at your progress over time.

It’s important to remember for anyone only on AP and no other DMARDs that flares can and will still occur until remission is reached. The tetracyclines are not immune-suppressive, but immune-modulatory in this sense and the goal with straight AP is to slowly re-train the immune system, over time, to function more normally. Dr.Brown often said that it could take between 2 to 5 years on average for RAers to reach remission. During flares, he would recommend IV clindamycin to knock them out. However, there is a DMARD that can be supportive of AP if inflammation is unbearable – plaquenil. This anti-malarial has some surprising anti-inflam properties in addition to its anti-parasitic props (designed originally to treat malaria). It is not believed to be immune-suppressive (otherwise, how would it work to treat an overwhelming protozoan infection like malaria?). So, it’s not a bad stop-gap drug to use either, if inflam is making life difficult while waiting for disease symptoms to reverse on AP. Interestingly, clindamycin has similar anti-parasitic props and is also used in the treatment of malaria, so maybe no wonder both work so effectively for RA?

Yes, it is very sad to hear that you have sustained damage as you weren’t taking anything for so long. AP can’t reverse damage that has already been done, but the tetras do have some terrific props that interfere with collagenase, the enzyme that breaks down joints. So, hopefully it won’t be long till all your inflam is gone and you can prevent further damage from occurring.

There are some fantastic ways to reduce inflam that involve learning how to detoxify your body. It is circulating antigen (toxins), (bound with antibody, called immune complexes) that causes oxidative damage to the joints and organs in RA and causes all the inflammation. So, by reducing the antigenic load through detoxification, one can also lower the oxidative stress on the body. Brown believed that it was the toxic substances, called antigen, released from pathogens to which rheumatics developed an allergy (called, “bacterial allergy” or “bacterial hypersensitivity”) that was the root cause of rheumatoid diseases. So, if you stick around here for a while you will be an expert in no time, learning how to support your AP with these detoxification methods. You can also run searches in the search box at the top of the General discussion area to look for past threads on this and other topics.

While you have been case-managing yourself, have you been taking a good probiotic, Jane?

Also, if you have a copy of the Scammell book, try to read it a few times and keep it to hand when you need a boost. I must have read it 5 times in my first year and learned something new each time as the terminology became more and more familiar.

There is a Dr. Brown video on the top of the forum, too, that is worth watching. It’s about 50 mins long and the thing I found most fascinating was when he presented the bone scans of one patient over the course of 3 years. This sort of speaks to how/why AP is a long-term therapy and what time-frames to expect.

Hope something above can help to answer some of your concerns. Don’t be afraid to ask whatever you need, as someone will always be around with some experience to share with you. We don’t have any medical professionals here, just hard won experience to share. 🙂

[ablegirl]

Dear Maz and Patricia thank you both for your posts.

I wanted to ask what level of inflammation would be considered clinical remission by a Rheumatologist. I understand for my age that a normal sed rate would be about 11 (I am 44 yrs old). What I am trying to ask is what would be the best case scenario if you were to use conventional Medication, what would a Rheumatologist think was a good result. My sed rate seems to be decreasing by 10 every 3 months. I’m hoping if it does I could have s sed rate of about 20 by Feb 2012 (heres hoping). Maz, I finished steroids May 2008, took them for 6 wks only but high dose(both oral and intramuscular) and have left myself unmedicated until starting AP beginning July 2011 (In hindsight not the smartest move). Before starting AP my sed rate but not the CRP, or RF had begun to fall which was I think in part to the body beginning to recover itself from the steroid treatment and also to following an anti inflammatory diet. Prior to taking steroids I had unmedicated RA for 10 years which I controlled through diet and lifestyle and lived a life pretty symptom free life. Christian Barnard(the surgeon who performed the 1st heart transplant in the world suffered from RA and controlled his through diet and spoke of almost totally absence of clinical RA. From my experince I cannot advocate diet enough. Although we are all different and there isn’t a one cap fits all scenario to RA as we know. My RA started after childbirth which I’ve heard is quite common. I think anytime the immune system is suppressed or compromised RA can flare. It would make sense that suppression of the immune system would allow pathogens to spread uncontrolled.

I have read some information from the Arthritis Trust of America which agrees to a pathogen being the cause for lots of Rheumatic disease, although they talk of a specific pathogen and some different medications.
For now I am going to continue with Minocin combined with the best diet I can. May consider adding the plaquenil.

Many thanks for your support. Just having someone to bounce ideas of helps a lot.

Jane

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