Testing whilst on AP

[hotspur2904]

Can anyone tell me what kind of tests I should be having whilst on AP?  I've noticed a lot of people on here quoting numbers and counts which seem to have decreased since their AP.  I've never got this far into the facts and figures so they dont really mean anything to me

Can I also ask anyone in the UK if they know whether Dr H is on holiday. I have sent 2 emails to him, both of which he has read yet I have had no response.

Thanks in advance

Simon

[Joe M]

Minocycline can increase liver enzymes, so regular liver function tests would be appropriate, in my opinion.  Minocycline can also induce lupus, so regular ANA tests would also be something to consider.   You should be able to find all the side effects associated with long-term minocycline use by doing a quick search on the internet.  Good luck!

[m.]

I'm paying out of pocket, so I'm forced to budget, perhaps unconventionally.

I do a CBC with differentials, plus Serum Iron and Ferritin about every two months. I've been having some trouble with anemia, off and on, so we keep checking this to monitor progress.

I've also had several thyroid tests done, trying to optimize thyroid. On deck is sex hormones and another GI test.

I just repeated the mycoplasma antibody test from TARCI as well. http://www.tarci.net

[Kats]

The ones for monitoring rheumatoid disease activity are:

ESR, CRP, ANA, Anti-CCP, ASO, RF

I asked the board this same question a while back, and Lynnie_Sydney directed me to this helpful section:

https://www.roadback.org/index.cfm?fuseaction=studies.display&display_id=184#Anchor-Appendix-7638

I also go regularly to this site to look up the specifics of lab tests.  This site is very informative:

http://labtestsonline.org/

Hope this helps!

Katie

[Maz]

[user=1526]hotspur2904[/user] wrote:

Can anyone tell me what kind of tests I should be having whilst on AP?

Hi Simon,

Hopefully one of the other support forum users with Psoriatic Arthritis will arrive to share the lab markers they monitor frequently for their progress.

I believe PsA is quite different from RA in that you will not be testing for RF (which is almost always negative in PsA) nor for anti-CCP, which is specific for RA.

SED (sedimentation rate) is specific for systemic inflammation, however, as is cardio-CRP, so these are two numbers which should be showing improvement over time with PsA while on AP. There may be initial worsening for several months, which is classic for the herxheimer reaction, but then then SED and cardio-CRP should begin to fall. Of course, there are always variances in these numbers, so there is no one-size fits all, but this is the general course. If, by about 8 months, if no improvements in numbers are seen, then it may be time to readjust and tweak the protocol.

http://emedicine.medscape.com/article/331037-overview

Interesting that this link actually mentions a possible pathogenic link to PsA:

“Infections

• The temporal relationship between certain viral or bacterial infections and the development or exacerbation of psoriasis or psoriatic arthritis suggests a possible pathogenetic role for these organisms.”

[/*]

While on AP, the bloods you'll want to have done regularly are a complete blood count, liver & pancreatic values (enzymes) and kidney values (Bun), along with the SED and cardio-CRP (inflammation markers).

You may also want to get a baseline ANA test, but this probably doesn't need to be monitored regularly as I believe it is also usually negative in PsA (see list of conditions in link below for which ANA may be positive). Drug-induced lupus from minocycline is extremely rare from the use of this antibiotic and its safety profiles are so good that it is prescribed every day to teens with acne. Some articles I have come across on this have estimated a 1:10000 chance of developing minocycline-induced Lupus. There are many AI conditions in which the ANA is elevated, but PsA is unusual in this regard and why it can be difficult to diagnose. My MIL waited 3 years for a definitive PsA diagnosis, though this was about 15 years ago and diagnostics may be better now. So probably the only reason to check ANA would be to get a baseline (for a possible differential dx) and then to recheck it at intervals, as determined by Dr H. Actually, when you had your initial rheumy workup, you may already have had this test done to check for other rheumatic possibilities, which you could go back to look over if you have kept copies of your labs. If not, highly recommend keeping photocopies of all bloodwork in a folder at home. Apart from being useful if you change docs at some point, it's just nice to be able to watch one's own progress over time and to feel better informed about asking questions of one's doc. 

http://health.yahoo.com/lupus-diagnosis/antinuclear-antibodies-ana/healthwise–hw2297.html

Dr H will no doubt fill you in on the blood markers he may feel specific to your case. 😉

My Lyme doc checks all my bloods every month as I was particularly severe, but I do like that he is so vigilant as it's been fascintating to watch progress while on AP so closely like this.

Hopefully, another PsAer will chime in with the labs they have done for you, Simon. Not sure why Dr H hasn't got back to you by email, but I wonder if it may be better to put a call through? Katieb or Rosemary may be able to let you know if he's a bit slow on the old email or if he's just on holiday.

Peace, Maz

 

[Kats]

Oops…I mistakenly thought your diagnosis was RA too.  Better listen to Maz!

[lynnie_sydney]

Simon – it could be that your emails to Dr H went to straight into his junk box as your email address is an unknown at this point and, being a doctor he would likely get alot of unsolicited email. That has happened to me when I've emailed a doctor who didnt personally know me. I agree with Maz that a call to his offices may yield a better result.  

In terms of liver panel tests, I only required an annual blood test for these over the 5 years I was on mino – and this is supported by the ACR's own recommendations in terms of follow-up bloodwork after initial ones taken (in those links I posted for you the other day). RF, ANA, C-RP and ESR are the usual ones taken to monitor rheumatoid diseases, not sure if there are others necessary for PsA. Have a look at the appendix re bloodwork that Kats gave you the link to in her post.

Also, confirming what Maz said, the incidence of mino induced lupus is exceptionally rare. And it is not even lupus per se, it's a “fake” form of it which resolves as soon as the drug is taken out of the equation. With a 1 in 10,000 estimate, I really dont think you need to be concerned about this. After all, dont forget, doctors prescribe mino longterm for teenagers with acne. It is recognised as an extremely benign tetracycline. In terms of regular blood tests for your PsA, Dr H will know excatly what you and he need to be monitoring. And do ask for copies of the tests. An infectious diseases doc told me this many years ago. It not only helps you partner in your own healing, it gives any new docs that may come into the frame at any time a detailed picture of your history. Hope you've got some things to work with from these answering posts. Best, 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)

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