Just got a letter from my doctor... I need help... | Arthritis Information
Ok, so I got a letter from the Rheumatologist. Went on the 7th and he took blood and put me on Celebrex 200mg twice a day. Said he wanted more blood work. Well this is what the letter says....
I have reviewed results from your recent tests. The test results have a mild abnormality. The rheumatoid factor test is positive, but only at a low level. One test that suggests inflammation was also midly high, the ESR. There is also evidence of a recent infection with streptococcus. This may be related to the symptoms. For now, I recommend you try the celebrex and watch to see how the symptoms do. If this isn't helping or if new problems again to reconsider long term treatment options.
My sed rate was 25 HIGH
Rheumatoid Factor 19.1 HIGH
antistreptolysin o Ab 349.36 HIGH
Parvovirus B19, IgG 4.8 HIGH
Everything else normal. I have only been back on the celebrex since Monday but so far it isn't helping. My arms elbows and shoulders feel like they have tourniquet on all the time with my hands, fingers, wrists, elbows hurting and my whole arms feeling like the are swollen and hurting.
I don't know what to think. He ran an ANA+ENA+DNA/DS+Anti-H+Centr... that was negative this time 35 where last time I had blood work done I had an ANA Choice that came back postive, however ANA by IFA reflex was negative.
I don't know what to think? I am so confused, it makes me want to cry more. Unless I am hurting max people can touch me, my joints and it is ok. Any advise?
Did they do a CCP test?Celebrex did not work for me. In fact, be leary of it b.c. just a few months back, it was off the market and now it's back. I too was on it for a year but took it only when I had minimal pain. Went to see an RA and he told me to take 2 a day (400 mg) each and by the fourth day I ended up with severe pain down my left arm and 2 weeks later Vioxx and Celebrex shortly thereafter were off the market. Now Cele is back and I will never take it again. Instead I had to start on pred with a combination cocktail of mtx and placquenil. It was alot to go through but I can tell you it did work for me. Your doctor has to find out what will work best for you and you must tell him/her immediately of any side affects that you encounter once you go on any of these meds. Be patient, and I know how hard it is, b.c. it's like you're never going to get better, but each day passes you will feel at times worse or at least better. You may have to change your diet. One of the things that I found out that helped me was to remove all sugars from my diet. I found white sugar was the culprit as the disease feeds off the sugar and then you will get the pain. Everyone is different so take note of the foods you are eating and see how you react after you have ingested that food hours later. You have to listen to your body and change the way you were eating. it will make a big difference. I pray for a speedy recovery and that you will encounter less pain in your days ahead. God bless. Pray.Well, somethings feeding off the sugar and it's probably that strep. Good Lord, woman, your strep titers are almost double what mine were (I think - head cold so I'm not going to look).
Please get another doctor. If everything is still kind of, sort of, negative - don't let this get out of control.
Pip
OK, I'm definitely sick -
Parvo can definitely cause RA like symptoms. That takes about a year to clear if its that. With all those kids, one of them could have brought it home.
Pip
I understand how frustrated you must be right now, but it seems to me your doctor is just trying to avoid putting you on some RA meds you may not need. Of course, you shouldn't have to live in pain, so tell him the Celebrex isn't working, but don't insist on RA drugs yet. Maybe a second opinion wouldn't hurt, but the blood tests are what they are. That doesn't mean you don't have RA, but it doesn't necessarily mean you do either. Maybe another doctor can give you additional information that will help you through this. The first order of business is to get out of that pain cycle. Hopefully a change in your pain medication will do the trick. Please let us know how you're doing. Got to clear any infection to make sure of what's going on. Celebrex is very good but I started turning slightly yellow and had to go off it. I'd call and see what sort of antibiotic you should be using.
Hi Lotof, I agree that I would get a second opinion. You may or may not have RA. In fact you may want to call your primary care and get a referral to a infectious disease specialist or your internist might be all you need to help you through the strep/parvo positive labs. I'd also be tempted to repeat the blood tests. Have any of your children been ill?
Celebrex will help inflammation in many cases and in some people there are problems but then there are problems with all NSAIDS. If Celebrex isn't helping then call your RD and your primary care. Make sure your primary care has a copy of the labs and the letter that you received. Keep us posted. Lindy
I have three pages of bloodwork here. He did CBC with Differential/Platelet all normal, Commp. Metabolic Panel all normal, My CCP says...CCP IgG Antibodies <1 with negative being 0-5 and Positive >5 but it is not flagged at all. My ANA+ENA+DNA/DS+Anti-H+Centr... was 35 (normal), my Parvovirus B19, IgM was 0.2 (normal), then he did Anti-DNA, that was 10 (normal) RNP Antibodies 21(normal), Smith Antibodies 9 (normal), Antiscleroderma-70 Antibodies 32 (normal), Sjogren's Anti-SS-A 8 (normal), Sjogren's Anti-SS-B 5 (normal), Anti-histone Abs 6 (normal), Anti-Jo-1 13 (normal) and Anti-Certromere B Antibodies 8 (normal)
I have to go look up what the heck Parvo and Antistreptolysin mean because I don't know and I haven't been sick other than the joint pain, my kids have not been sick, not even the flu so I don't get it don't get it at all. I have been to primary care doc he says my throat looks good etc etc. I use to get really bad headaches but haven't had those in over 6 months. So I am confused as to what this blood work means.
As of yet I have not noticed any food reactions.
So what is the course of treatment for Parvo, or antistreptolysin? A year to clear up if it is Parvo, PIP where do you get this info, I am trying to look up stuff and I don't feel like I am getting anywhere, a year feeling like this is not an option, what more can be done if it is just me feeling bad because of Parvo or Antistreptolysin stuff. I guess his letter just drives me nuts because he says these symptoms may be related to a recent infection but keep taking the celebrex. Why does he have me taking the celebrex? What is he calling this? ARRRG, I just want to scream! This is a doc that is not for prednisone. I could tell he didn't like people on steroids. Rather glad my primary doc had already gone there. I feel so much better than I did before the prednisone but not normal. My arms are giving me the worst trouble right now. My knees hurt and I get pains other places but more spread out now. My arms are certainly what are bugging me most these days.
Found this for you on the Infectious Disease Center site. Hope it answers some of your questions re: Parvo
Also found this on strep.
Damn, Lindy, you're good!
I have the cold from hell, can't sleep, can't think, so I'm wandering around on AI.
Lotokids -
I personally have not researched Parvo. There have been a ton of posts about it on the Roadback. One of the palindromic people was convinced she was not palindromic/RA and was exposed to Parvo from her child who had Fifths. As she came to grips with what was going on she would post, or others would post, info on Parvo. From that, and from multiple discussions over about 6 months on Parvo, I gleaned a bit about it. Parvo can appear like RA. This other woman was also sero-negative. Most people who had had Parvo as an adult all said about a year to clear. Some got away with 9 months.
The strep I'm very familiar with because that's what gave me my PRA. It's also one of the reasons I chose AP. Minocin is somewhat effective against strep but that's one hard to kill microbe. The penicillians are better. My doc added in Zithromax to my regime last October (got to update my signature) to address my rising strep titres.
Go to
www.cpnhelp.org and take a look at the 3 stages of strep that can live in the body and 'reactivate.'
If you do have strep - sitting around waiting for your bloodwork to go 'positive' is not going to help. Think about finding an AP doc familiar with strep induced RA. Have them run the required mycoplasma tests - most medical centers do not have the ability to do that yet. You need specialized labs. If you are indeed infected and are catching this this early, you have a darn good chance of beating this and going antibiotic free - which is what I consider a 'cure'.
Get the book the "New Arthritis Breakthrough" by Henry Scammell. That details a lot of information on strep.
If there is a chance you have Parvo and NOT RA (and you have a test which shows recent exposure) think about adding in probiotics to see if you can reboot your body into fighting it off. Go to Whole Foods and get the most strains and the most live cultures as possible. Start at 1 cap a day. Slowly work yourself up. Trust me on this - it can only help - RA or Parvo.
Hugs,
Pip
What is an AP doctor, not familiar with that term?
Is it Antibiotic protocol doctor? What do you look up to find one of those?
You can get a referral from www.roadback.org - but being positive for strep and parvo, it doesn't seem to me like you would need one.
My understanding - parvo is a virus, you wait it out, treat symptoms, right? Strep, on the other hand, has a treatment. I would get a second opinion from another dr. about getting that strep titer down. On a parent's board I go to, a mom got penicillin from her ped for her son's high strep titer, but their rheum was totally against it.
I don't think minocycline treats strep?
I think you are lucky they are identifying an infectious cause! I know you still feel bad and hope things will improve, but in my opinion that is so much better than unknown autoimmune. There is a cure for strep!!!
I saw your earlier post asking about Celebrex - that is an anti-inflammatory, it will hopefully reduce swelling and treat pain. It does not alter the course of the disease. I think he wants you on that to see if you will get over parvo and strep and return to normal without having to add 'big guns'.
Hi Lotokids - I would agree with everyone else - go to www.roadback.org or www.mercola.com and read about RA and anitbiotics. parvo and lyme disease can induce RA-like symptoms.
You don't need to have strep thoat to have a strep infection - when you're pregnant they usually test for Strep-B infection - do you remember if yours were ever positive?cdndream, I do think my last birth (11 years ago) wast positive for StrepB.
So...I called today and talked to the nurse. She said, give the celebrex another week and see where I am at. I feel better, not nearly as much joint pain. The main times I get the joint pain are if I extend my arms or legs to straight or bend them too much (if that makes any sense at all) and then my arms are swollen and hurt, feels like tourniquet's still on my shoulders and elbows making my arms swell and hurt and fingers and wrists hurt. Uncomfortable to miserable at times. Hard to fall asleep at night but once I am asleep it doesn't wake me. I also asked her if it shows evidence of a recent infection shouldn't I be on an antibiotic. She said,t he blood work show evidence from the last month. So sometime in that month I had an infection but if he didn't send me an antibiotic he didn't think I needed one. She said if I still have concerns next week then make an appointment.
I don't' know if it is my brain not working or what but I read those pages on Parvo and Strepp and I am not understanding, comprehending anything useful.
With my insurance I don't have to have referals so I can go to whoever I want but how do I locate a Antibiotic protocol doctor?
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