Time Frame for Improved Bloodwork

[Cangirl]

Could anyone tell me an approximate time frame to see improvement with blood work? I am in week 15 of the AP. My ESR started at 7 then on monthly workups went up to 10, down to 6 and my latest lab is now up to 15. It is the same with my CRP. It started at 1.3, and has gone up each lab, 6, 8 and now 12.
I go to my rheumatologist tomorrow and am afraid that she is going to tell me that the AP is not working and try to put me on something else. I did explain to her in the beginning that the numbers may go up before coming down, but it is still unnerving to see them myself.
I have had good blocks of days and not so good, and unfortunately I am on a round of not so good and am also worried she will see that as well. I had one of my worst days yesterday since starting AP and am hoping that I will be able to improve enough by tomorrow so that she doesn’t pick up on the discomfort I am in. I feel I am whining when others have had and still have a much tougher battle than mine, but it is scary when you don’t have a doctor who supports this treatment. I appreciate all your support and thoughts.
Thanks,
Kelee

[Maz]

Kelee, are you still on mino 100mg on just M and F? Have you had a chance to speak with Dr. S. about your dose and how to titrate it?

It’s still relatively early days, but as you’ve been on AP now for a few months, it might not be a bad idea to connect with Dr. S. to talk about dosage. It could be that you’re not yet on a therapeutic dose for you.

Sorry to hear you’re feeling rough…AP is not immune suppressive and labs will fluctuate for a while, because flares are commonly experienced until remission is reached. It’s just that they should be getting fewer, spaced further apart and less intense as time goes on. Sometimes it can take a year or more until noticeable benefits are seen in some folks…Brown gave an average of 2 to 5 years for remission to be reached. This, bearing in mind that he used a wide-array of anti-microbials and expertly titrated doses to patient tolerance.

Try not to worry about your rheumy. Just a suggestion, but if she wants to add something to the mix, then why not add plaquenil, which has some nice anti-inflam props and is also anti-protozoal? It’s probably one of the ‘better tolerated’ DMARDs, too, and can be used for short periods until improvements on AP kick in. Adding a second DMARD (if she considers Mino a DMARD, that is), might give you some lee-way time with her? 😉

Do you have Dr. S’s contact info? I’d be happy to send it in a PM, if you’d like. 🙂

[lynnie_sydney]

Kelee
it is quite common for bloodwork to “herx” the same way as symptoms do – something that most rheumies do not understand. My bloodwork worsened when I had tests run at around the 8 week mark and it was a further 5 months before they started to come down. My symptoms improved before the blood work did. However, this can work in the reverse for others – responses are very individualised. I think Maz’s point about consideration of whether your dose needs to be increased is a good one and her suggestion of some input from Dr S is a wise one.This could also provide you with a suitable response for your rheumie.

My Blood work also herxed
A couple of weeks later, I went back to my G.P. feeling wonderful and very excited. Then I got the results of my blood tests. My Rheumatoid Factor had increased, up from 511 to 692! My CRP and ESR were both still in normal range (as they had always been), but I now had a positive ANA result which was speckled. I came down with a crash. What was going on?? ……..

5 months later, I went back to my GP for another round of blood work and another prescription for minocycline. This time, I was truly ecstatic. My ESR and CRP had fallen to even lower levels. And my Rheumatoid Factor had plummeted to 311 – falling by 381 points in just 5 months. Finally, my blood work was following the way I felt, which was wonderful!

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)

[Maz]

Kelee, thanks for updating your signature line. As you’re slowly increasing your dose, it’s very possible that you’re still in herxing mode, as Lynnie described. 😉 Any change in dose or abx can elicit more in the way of herxing….the purpose of slowly increasing is to just keep the herxing tolerable. It may well be a very good thing you did it this way rather than starting out on the higher daily dosing, as the herxing may have been quite tough for you. Just speculation on my part, so would still connect with Dr. S. for his insights on your current dose. He may suggest waiting till you stabilize before you increase again or he may not, but it will be good to have his insights and confirmation that you’re on track.

[A Friend]

@Cangirl wrote:

……..
I have had good blocks of days and not so good, and unfortunately I am on a round of not so good and am also worried she will see that as well. I had one of my worst days yesterday since starting AP and am hoping that I will be able to improve enough by tomorrow so that she doesn’t pick up on the discomfort I am in. I feel I am whining when others have had and still have a much tougher battle than mine, but it is scary when you don’t have a doctor who supports this treatment. I appreciate all your support and thoughts.
Thanks,
Kelee

Kelee, most of us can probably identify with what you are going through. It’s good for you to ask questions and look for specifics about your symptoms and progress. The timing is different for each of us, but I still remember having a rough first 3 or 4 months; and then about the 4th month, I could again raise my left arm up over my head. I saw that as real progress… and besides that, I was feeling a bit more like “me” again.

Also, on hindsight, if you are not doing something to specifically support the liver, you might consider determining a good supplement for that (silymarin, etc). However, if there is a place in your schedule of meds/supplements where you might work in the drinking of the whole lemon/olive oil drink, this has appeared to be a great help for the liver with its duties of detoxing the toxins it must deal with on a continuing basis. Our livers can get real “cranky” (and sometimes fail to detox acidic wastes our bodies need to excrete — and then these wastes can get stored in our bodies). There is probably a good bit of information on this drink in past posts if you do a search on the first page of the General Discussion board, in the little search window.

I notice in your list of supplements, etc. in your signature lines is that a B-Complex with all the B vitamins is not there. From study I’ve done, even more recently about how our B vitamins serve as enzymes/co-enzyme facilitators in our metabolic detoxification system, I believe a complete B-Vitamin Complex is needed whether we are taking single B vitamins or not… but especially if we are taking single B vitamins.

You probably are on overload with your reading at this time, but the research and papers by Dr. Garth Nicolson have been a good source of educating myself over the past many years, about what is going on and being found in chronic illnesses. This is a link that should take you to many topics and articles on his web site:
http://www.immed.org/illness/treatment_considerations.html

Best of luck to you… we’re so fortunate on RBF BB to have such knowledgeable moderators and patients.

AF

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