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I haven’t posted for a while, haven’t really had any good news to share. Well just had some bloods done two weeks ago, got the results Friday. My ESR is now normal, CRP didn’t give me figure but told me it was better than last which was 11, I’m hoping it might be 8. But the news I found to be the best was the RF factor is now 356 although this is still high it was greater than 700 and has previously refused to budge. I visited a Rheumatologist beginning Feb and he presecribed a combo of plaquenil, methotrexate and Prednisolone. Having resisted these drugs for so long I didn’t want to take them but was feeling under pressure as the RF was 577, ESR 32, CRP 11. Although to be fair he was basing this drug combo on clinical assessment as well. I have a lot of joint damage and am struggling to walk but I have had high blood markers for a long time and this disease for 16 years. Am I placing to much attention on blood markers and can disease progression still be going on even with these low markers. I am sure th RF factor will continue to fall over the next couple of months, hopefully into double numbers. Is this remission? These Rheumatologists make me laugh as when I have high blood markers they use them as reasoning for taking the drugs then when they fall they still want you to take them too. Anyway in my book low numbers must be better than high.
Anyway just wanted to share my good news, although not quite out of the woods.
@ablegirl wrote:
I haven’t posted for a while, haven’t really had any good news to share. Well just had some bloods done two weeks ago, got the results Friday. My ESR is now normal, CRP didn’t give me figure but told me it was better than last which was 11, I’m hoping it might be 8. But the news I found to be the best was the RF factor is now 356 although this is still high it was greater than 700 and has previously refused to budge. I visited a Rheumatologist beginning Feb and he presecribed a combo of plaquenil, methotrexate and Prednisolone. Having resisted these drugs for so long I didn’t want to take them but was feeling under pressure as the RF was 577, ESR 32, CRP 11. Although to be fair he was basing this drug combo on clinical assessment as well. I have a lot of joint damage and am struggling to walk but I have had high blood markers for a long time and this disease for 16 years. Am I placing to much attention on blood markers and can disease progression still be going on even with these low markers. I am sure th RF factor will continue to fall over the next couple of months, hopefully into double numbers. Is this remission? These Rheumatologists make me laugh as when I have high blood markers they use them as reasoning for taking the drugs then when they fall they still want you to take them too. Anyway in my book low numbers must be better than high.
Hi Ablegirl,
Nice to see you again! Can you remind us when you began AP? Was it back in Nov 2011 when you joined here and are you still on 100mg MWF? Have you made any lifestyle modifications, like detoxing, diet and/or hormone therapy? Are you using probiotics?
Did you get labs drawn in Feb, too, prior to starting the MTX, plaquenil and pred? Just wondering if your labs are more reflective of your progress on AP or if they have come down due to the addition of the other drugs? I’m not too clear on that part.
Remission is defined in a few ways – there is drug-induced remission, where a person’s symptoms are completely resolved, but they remain on their meds (labs may still be elevated, but are masked by drugs). Then there is drug-free remission, when all labs and symptoms are resolved and normal after drugs have been stopped. Depending on the labs you’re using (I use Quest), a normal anti-CCP would be >20 and a normal RF >16 with SED rate and CRP also within range. Thing is, a person can have an elevated anti-CCP and RF for many years prior to disease onset, so it’s possible that these may remain elevated when all inflam has resolved. It’s nice to see those normalized, too, though. Interestingly, when I went on high dose Moxatag (extended release amoxicillin) for my Lyme, my anti-CCP came down in 40 point increments every month for the 8 or 9 months I took it! That indicated to me that anti-CCP was driven (in my case) by a cell-walled bug of some sort.
Labs can be really useful in determining progress on AP and my doc checks them every 2 months (every month while I was on IV clindamycin or certain other abx). The docs who adhere to infectious causes see the RF and anti-CCP as markers of infection rather than autoimmunity, so they are more apt to use other classes of abx as therapeutic probes to try to budge those labs. Clearly, drugs that mask symptoms and reduce inflam in the body will have some effect on SED rate and CRP, but not necessarily on RF or anti-CCP. My doc also uses these labs to determine when it’s time to change up my protocol, if things have plateaued out. Flares can and do happen along the way with abx therapy, though, but over time these should be becoming less frequent, less intense and shorter in duration. If not, then it’s time to go back to the drawing board and reassess the abx protocol we’re on by either tweaking dose or adding/subtracting from the protocol.
Your inflammatory markers are not too bad at all, so this is a good sign you’re getting the inflam under control. 🙂 Unfortunately, damage done prior to remission can’t be reversed, but it is possible to attain a pain-free state when inflam is controlled.
It would be helpful if you could add when you began AP and if you’re changed your dose at all, because if you’ve been on the same dose for the past 2 years without much progress, it might be time to consider consulting Dr. S. in Iowa (he’s really kind to answer patient emails) to see if a tweak in dose or the addition of a second abx may speed things along for you. E.g. Some patients with a history of strep or elevated strep titers might need to consider adding a second abx, like azithromycin or, if pulsing, a penicillin (which shouldn’t be taken at same time as mino).
In any case, glad to hear you’re feeling better and that you’ve made some progress! 🙂 Thanks for coming to share it with us!
His Maz, Thamk you for your reply. Sorry I may have confused things. I am not on any drugs the Rheumatologist wanted me to take Metho, plaquenil, Prednisolone but having travelled so far I didn’t want to. So my reduction in inflammation is due to being on the Minocin, I started in July 2011 and the last three months on very strict diet, juicing etc. MY ESR is 5, CRP 10.8. So not bad at all. Just waiting for my body to feel as good as my bloods. Just been to Doctors’ for Orthopaedic Referall, which will include an MRI, so hopefully I’ll know whats going on with my knees. I think that as my bloods have only recently improved so much there is still inflammation in my tissues so that may well improve with further detoxing, ie sauna, moderate exercise.
Anyway as you know to get to this point of is such a blessing, even if I have some joint damage to be nearing remission is a miracle. I thank everybody on this forum for their guidance and support. Wishing everybody improved health.@ablegirl wrote:
Anyway as you know to get to this point of is such a blessing, even if I have some joint damage to be nearing remission is a miracle. I thank everybody on this forum for their guidance and support. Wishing everybody improved health.
Ablegirl, thanks for clarifying your protocol for me. It sounds like you’re doing lots to cover those AP-supportive corners. In under two years, you’ve done really well, but if you get to a point where you want to tweak things further to try and speed up progress, then there is always the opportunity to do that (either consulting Dr. S. or seeing an experienced AP doc). I couldn’t agree with you more about RBF and sending all good wishes your way for continued improvement, too. 🙂
All the best with your knee MRIs – let us know how you get on!
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