CRP Gone Down !

[katieb]

CRP Gone Down !.
 
Hi Everyone,
 
            Got my monthly routine bloods last week ready for visit to Dr H. I had noticed my shoulders seemed to be hurting less when I took off pullovers etc, but was really surprised to see the C-Reactive Protein was down from 71 to 39 (normal is 0-7) !   :roll-laugh:
 
            I have been on the mino (generic) for 5 months, and my CRP was up to 70 in July, then I had a steroid shot for my vacation and it came right down to nothing, then crept back up to 71 by October. Now in November it?s down to 39 all on its own. Dr H asked if I?d had another shot and I was very happy to say ?No, just the NSAIDs?. From his records of his other patients it tends to jump about a bit, with the general trend being downwards, so I may have to expect it to go up a bit again, but this is great news and a boost to my confidence that it is working for me !!!
 
            Generally, I feel stronger ? for instance I can now close the trunk of the car with one hand again (instead of having to use my elbow), and other small things, but at the same time I had a sort of mini flare in my hands about 3-4 weeks ago, and now have a few more stiff fingers than before ? just the bugs trying to fight back ? they won?t win !!
 
            Dr H is mostly concerned about my weight loss and wants me to get thyroid checked, but I think it just may be the way I am reacting to RA ? loss of connective tissue ? my arms look more like those of a 75-year-old !
 
            Anyway, we are going to up the dose to 100mg Mon thru Fri, with the weekends off (I expect I will now get horrible herxes every weekend !). I won?t be needing any IVs the way things are going right now.
 
            By the way Dr H mentioned a teaching hospital somewhere in UK who have done some trials on the AP IV?s in conjunction with him, and are quoting 60% of patients improved within 6 months, which even Dr H thought was good !
 
            Very happy ! And thanks to everyone who helped me resist the mtx ? very glad I did now !
 
Katie 😀
 
By the way Lynnie ? his patient in Greece isn?t your friend the concert pianist.
 
           
 
 

[Maz]

Katie, what excellent news! You must be so heartened now, knowing you're on track. I know what a difficult, unnerving time it is in the beginning. It's pretty typical for inflammation markers to worsen in the beginning. Everything worsened for me with the herxing for several months before very slow improvements began. The timing seems pretty accurate for you, too, starting AP in June and having the elevated CRP in July. So difficult at the time to keep the faith, but this is exactly the pattern that Dr Brown describes in The New Arthritis Breakthrough….

…you're now well on your Road Back!!!!!!!!!!! YAY!

The study you mentioned…wouldn't happen to be the one at Charing Cross Hospital, would it that was done a couple years ago? Dr H isn't mentioned as a study author, but I'd be very interested to know if he was involved in this one, which is pretty much Dr Brown's protocol. Cheryl and I were discussing this study last week, because it's always good to have updated studies on the website.

http://cat.inist.fr/?aModele=afficheN&cpsidt=17489239

Here is the PubMed study link:

http://www.ncbi.nlm.nih.gov/pubmed/16465651?dopt=Abstract

And it's mentioned in the articles section on the main Road Back website, too:

https://www.roadback.org/index.cfm/fuseaction/studies.display/display_id/371.html

Would just be interesting to know if Dr H is affiliated with these studies. If not, we should be in touch with him to get info on this latest one to add to the site!!!!

I had to smile when you said you were able to close the hatchback with one hand again! I had a flashback to the same moment, too! It's one of those…”Hey, I can do that again!” moments that just take your breath away and bring you this amazing sense of wonderment!  It was a little backwards and forwards in the beginning..could do it one day and then not the next time, but eventually you're back to it just being second nature. I really do stop myself these days and make sure I'm appreciating those little moments.

So happy for you, Katie!

Peace, Maz

 

[katieb]

Hi Maz,
 
            Many thanks for these very kind words ! You are right, I mustn?t forget to appreciate these little miracles ! 😉
 
            I will email Dr H and see whether I can get some more info about the trial he mentioned.
 
Take care !  Katie  
 

[lynnie_sydney]

Wonderful news Katie! I know you've had a bumpy ride till now. Lynnie

BTW I found out when I was in London that the patient from Greece was not the concert pianist. But, having brought up the subject with my friend again, the (vicarious) interest in AP seemed to reignite. You never know!

 

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)

[Kim]

Well done, Katie!!!

[Patti D]

Katie
That is great news!!! I have been wondering how you are doing. Opening the trunk was just the beginning!!! Just today I was so grateful for being able to kneel on the floor again. I was actually painting 2 chairs and a small table while kneeling on concrete(with a small pillow, I'm not dumb!) for close to 3 hours. Just like you, I could not believe I was doing this again as it has been over a year since I could kneel at all.

Isn't life grand with these small miracles!!!

Happy days!

Patti

[Rockin Annie]

[user=467]katieb[/user] wrote:

CRP Gone Down !.
 
Hi Everyone,
 
  Generally, I feel stronger ? for instance I can now close the trunk of the car with one hand again (instead of having to use my elbow), and other small things, but at the same time I had a sort of mini flare in my hands about 3-4 weeks ago, and now have a few more stiff fingers than before ? just the bugs trying to fight back ? they won?t win !!
 
            Dr H is mostly concerned about my weight loss and wants me to get thyroid checked, but I think it just may be the way I am reacting to RA ? loss of connective tissue ? my arms look more like those of a 75-year-old !
 

 Hi Katie,

I am a newbie to AP only 6 weeks, but just had to reply to your post.  It is fabulous news for you and great for us to hear about your little miracles along your roadback!. Well done!. I loved to hear about you getting stronger and closing your trunk with one hand, I do the exactly the same, open/close with my elbows. It did bring a smile to my face thinking about how people must think we are odd by doing that ( especially at service station) :blush: .

Hope it keeps on getting better for you……………..Annie

 

Diagnosed with RA in 2004, after trying many conventional meds I changed to mino.
2015 changed to doxy 50mgs
2016 went off doxy, after getting double pneumonia and massive flare put myself on 250 mgs Zith & 50 mgs doxy, which I will increase slowly.
Supps, magnesium, NAC, vit c, krill oil, oregano oil, thisylin, turmeric, olive leaf extract, vit B, multi vit.

[Maz]

[user=467]katieb[/user] wrote:

I will email Dr H and see whether I can get some more info about the trial he mentioned.

Thanks so much, Katie. If we can locate these British docs who authored this/these recent, successful studies, we may be able to add some more decent AP docs to the list for others in the UK. Wouldn't that be great? I get really excited by the thought of this. :roll-laugh:

Peace, Maz

[katieb]

Well, it's been a month since I posted this topic, and since then a lot has happened. I had my rheumy appointment right after that, and she poured gloom all over my optimism by saying that my inflammation levels were 'unacceptably high' and I was running a 'big risk' by not having the mtx, and telling me a story of someone who refused it until it was 'too late' – but that person wasn't on AP !!

I was sufficiently frightened that I actually filled my prescriptions for mtx and folic acid and went and got my pneumovax and flu slots. All ready to start the mtx.

except…… I just couldn't bring myself to take it. The anticipation of my next blood test was just too much – I thought I'd wait and see and if the levels had gone up THEN I'd take the mtx.

except…. since then I've read all the various posts about MSM, (and also found a friend whose dog is doing well on it !!), and thought perhaps I could fool everyone by getting the ESR & CRP down a bit faster that way.

Anyway, today I got my blood results for December. CRP the same on 39, ESR DOWN from 35 to 29 !!!!!!!

So the mtx stays in the cupboard and I've ordered some MSM.

Watch this space guys !

By the way, miracle of the month, I can now once again close up the folding tables at church – involves squeezing a bar very hard with one hand whilst pushing the legs down with the other !

Maz : Sorry I didn't get a reply from Dr H by email. I'll ask about the IV study when I see him in Feb.

Patti : That is fantastic news that you are on your knees painting – that's just the sort of stuff I was always up to – lots of DIY. Your posts always seem to conjure up a lovely mental image for me. I have one of you paddling a canoe round a lake in some idyllic North American scene. Then the kneeling on concrete, paintbrush in hand, and now the snowstorm and you leaping into a snowplough ! Really great ! Long may the improvement continue !

Blessings everyone,  Katie

[Rockin Annie]

Hi Katie,

That is absolutely fantastic news for you, I know exactly how you feel about doing the Mtx thing especially when you have a doc with such negativity, urrrrg! Wow that is really great about your crp, its such a great feeling when you are waiting for those results and then they come in lower, show that doc something alright, I am actually going to my Rheumy on Monday to shove it in his face with my results :blush: I will never understand the way some of these docs think!.

Great that you have found MSM, I love the stuff, thanks to Jo, I noticed just the other day I can open my pool gate without flinching and lots of other little things that I can do that used to get me down. There is no stopping us now!.

Good on you Katie …………Annie

Diagnosed with RA in 2004, after trying many conventional meds I changed to mino.
2015 changed to doxy 50mgs
2016 went off doxy, after getting double pneumonia and massive flare put myself on 250 mgs Zith & 50 mgs doxy, which I will increase slowly.
Supps, magnesium, NAC, vit c, krill oil, oregano oil, thisylin, turmeric, olive leaf extract, vit B, multi vit.

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