feeling disheartened

[ablegirl]

Haven’t posted for a while but read posts here everyday.

I have been on Minocin for 7 months now and have noticed very significant improvement. However have just had my latest blood test results and there hasn’t been any further improvement since last blood test and in fact numbers have increased slightly.

November 2011, ESR 30, CRP 11, RF 577
February 2012, ESR 32, CRP 13, RF >700

Obviously worried about further joint damage, I have just had some very bad x-ray results for both knees and both ankles. Coming under pressure to go on conventional meds by GP and just about everyone else. Are these very high levels and am I at risk of further damage. My ESR and CRP were 80 and 23 respectively back in March 2010, so things have improved but need to protect myself from significant further damage. I currently take Minocin 100 mg, MWF. Very much on my own with this treatment would be grateful of some advice.

[kali]

Hi Ablegirl,
I understand your fear and that you are looking at some tangible results that don’t look so good. However, if you put this in perspective you are still at a very early stage of your treatment. If you haven’t done so – watch Dr. Brown’s video. You will see at the end, a bone scan of a patient that Dr. Brown follows on a yearly basis. It take 5 years before you really see the bulk of her RA clearing from around the joints. It really put things in perspective for me when I saw this. So – even though you may feel better – it may take some time for test results to show the same. Brown wrote that often the test results would improve before the person did – but sometimes the person would improve and it would take some time before the test results improved. Many times, the very effects of the abx causing die-off will make test results worsen. So lift up your heart and have faith in the process since you are feeling better – other things are soon to follow!

Kali

[Maz]

@ablegirl wrote:

I have been on Minocin for 7 months now and have noticed very significant improvement. However have just had my latest blood test results and there hasn’t been any further improvement since last blood test and in fact numbers have increased slightly.

November 2011, ESR 30, CRP 11, RF 577
February 2012, ESR 32, CRP 13, RF >700

My ESR and CRP were 80 and 23 respectively back in March 2010

Hi Able,

Did you manage to get baseline labs run just prior to starting your minocycline 7 months ago? If so, any improvements in labs since July/Aug?

Were you on (still on) any treatments from diagnosis to when you started your minocycline?

Unfortunately, damage that may have already occurred (i.e. from diagnosis to beginning AP) will be irreversible. Also, while waiting for AP to kick in, damage can also occur, especially if one has had untreated or inadequately RA prior. While conventional meds can prevent/slow damage, I have chatted with a good number of folk for whom conventional meds have not stopped damage from occurring. So there aren’t any guarantees with any med and each person will be unique. The thing about low dose minocycline is that it is not immune-suppressive, so flares can and will continue until remission is reached and Brown often gave the ball-park number of 2 to 5 years for remission (see Kali’s post above!). The purpose of low dose AP is to slowly re-train immune function over time to respond more normally to bacterial antigens. Also, much can depend on what is occurring on the day of the blood draw, especially if one is in the middle of a flare or has some other infection going on, with regards to CRP and SED. However, it would have probably been more encouraging at this stage to have seen some reduction in RF. This can be further elevated in the first few months from herxing, but some signs of reduction is good to see at this point.

All this said, 6 to 8 months is a good place to go back to the drawing board if there are concerns about progress. Your dose may need to be tweaked. Some folk actually do better on higher, daily dosing. Adding a second and even a third complementary abx may be needed, too, depending upon a person’s pathogen load. Brown would likely have suggested intermittent rounds of IV clindamycin to boost the therapy. Lots of people respond well to minocycline alone, but others need to use a combination approach. Untreated strep, for instance, was believed by Brown to stall out progress. Or, as many are finding here, untreated Lyme and coinfections or chlamydia pneumoniae, for example. Working with an experienced AP doc can make all the difference to one’s success with AP.

Also, have you been able to do anything with regard to detoxification? It is free-radicals, caused by inflammation in reaction to antigens (toxins), that cause the damage in RA. So, reducing toxin load can go a long way to reducing inflammation and free-radical damage. Diet and leaky gut can also play a big part in rheumatic disease. Are you using daily probiotics?

Here are a couple links on the main site that may provide further useful info to you and something may strike a chord. Even using a particular generic may be the problem.

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

https://www.roadback.org/index.cfm/fuseaction/education.display/display_id/131.html

Ultimately, how a person is feeling and if they are feeling better on AP is a reasonable litmus test and, in some instances, improvements can be felt before labs follow:

https://www.roadback.org/index.cfm?fuseaction=studies.display&display_id=184#Anchor-Laboratory-45656

“Laboratory Tests (toc)

Patients stay on medication until all laboratory tests return to normal. Some patients indicated they began to feel better long before their laboratory results improved. The converse can also be true. (See Appendix B)”

This is not much comfort, though, I know, when waiting for AP to kick in. 🙄 So I think my best suggestion would be to either do what you can to see an experienced AP doc or even just begin by sending an email to Dr. S. in Iowa. He is so kind to respond to patient queries about the therapy. I can send you his contact info if you would like to give this a try? Thing is, if your rheumy isn’t too supportive of AP in the first place, it’s not too hopeful that he/she will help you with combination orals or IVs or other ways to support the therapy (like supps, diet and detox). Writing to Dr. S., however, should help to provide you with some insight on how to move forward with tweaking your AP.

https://www.roadback.org/index.cfm/fuseaction/education.display/display_id/123.html

Wishing you well, Able, and hope something here will help in your researches!

[ablegirl]

Dear Kali and Maz, thank-you very much for your replies.

I think I’m in shock as I was definitely expecting better blood test results than I got. My GP was prepared to be proved wrong if bloods showed improvement, so I really needed this for him to continue to support me. The fact that there has been an increase in the RF factor means he will be pushing for me to go on MTX (in the UK or definitetly in the part I live you need to fail on MTX before you can have a biologic). Are my numbers very high, I don’t have anyone to compare against to gauge how serious my RA is.

I did see a doctor here in the UK. Dr H in Guildford (Maz you kindly gave me his contact info) it was only a couple of weeks ago before I got latest blood test results. He suggested increasing the dose of mino to 100 mg Mon, Tues, Wed, Thurs, Fri, weekend off. Maybe I will give this a try for another couple of months to see how I go. I have been under some stress so maybe this has had an effect too.

This disease certainly seems to be doing its worst with me. You know how important support is. Thank you both.

[PhilC]

Hi,
@ablegirl wrote:

I currently take Minocin 100 mg, MWF. Very much on my own with this treatment would be grateful of some advice.

Are you taking any other medications?

Phil

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

[ablegirl]

Hi, Phil

No I am not taking any other medication. Not sure now if this is wise. As obviously having to wait for mino to take effect and of course running risk of further joint damage. I have never taken any Meds during the 14 year course of this disease apart from a 6 week period of steriods back in March 2008 and the mino now I am now taking.

[PhilC]

Hi ablegirl,

It seems like you already knew that taking only minocycline may not be enough to prevent joint damage:
Minocin may not stop joint damage in RA

Now read this message I posted over a year ago:
Re: long term effects of AP

Finally, read my reply to jlynne:
https://www.roadback.org/forum/viewtopic.php?p=59327#p59327

I hope that helps…

Phil

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

[Patricia.Ann]

Phil, these are brilliant links. Thank you for posting them.

Your information gives me great reassurance regarding my treatment plan. I am on Celebrex and Prednisolone (been on it for eighteen months at high doses unfortunately 30mg – 10mg) BUT as from this week have been reducing from 10mg to 7.5mg alternate days, alongside my minocycline (am hoping this means the mino is starting to work for me) – so your posts give me hope that I am doing all I can for reducing joint damage. I do realise everyone is an individual and all we can do is our best – sometimes our bodies have other ideas!!!!

Just wanted you to know Phil that I really appreciate all your well researched info and help 🙂

Kindest regards

Patricia

[dixiegirl]

Some folks might think this is crazy, and I’m used to all the folks who have “the magic pill”–they’re all annoying. But from my two years with RA, I have discovered without a doubt that protein allergies can cause RA. I improved incredibly when I removed gluten and casein from my diet. I don’t want to be annoying, but it might help you! If you try to remove foods, go on a vegetable fast (only eat veggies) for at least 3 weeks. If you feel better, get yourself tested! It has made a WORLD of difference for me. It’s not a solution (that’s why I’m on here hunting for more help) but it’s kept me mostly pain-free for two years. Just a thought. Hope you find help!

[Marybeth]

Dixiegirl,
I have gone the diet route with the exception of fasting. I believe it has helped but it definitely is not the “magic bullet” for me. I started AP last week and will continue on with the diet. I would do a 2 week elimination of certain foods and then reintroduce them. I had a hard time determining what specifically bothered me since I was never quite pain free. I just try and stay away from the foods that are considered triggers. My pain of RA is more of a backseat driver (annoying 😡 ). It is yet too early to comment on my AP experience. Although last night I did have flu like symptoms. I have my fingers crossed.

Marybeth

[Author]

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