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07/29/2011 12:26 PM

Sed rate???

nmarie
nmarie  
Posts: 32
New Member

Hey guys! I am just curious what your sed rate and crp are? I don't know what my crp is yet but I'll post it here as soon as I get it. My sed rate is 3! And I'm not on any anti inflammatories. But my chest still hurts, I am curious what everyone else's numbers are. Is it normal to have low numbers but still have chest pain? Yes the pain is less but still there. Let me know how your numbers correspond to how you actually feel 3)
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07/29/2011 03:12 PM
Hazeldee
Hazeldee  
Posts: 259
Member

Hi there nmarie!

Sorry I've been MIA lately. I had a long recurrence in the month of June and have just been having fun with my son since feeling better. Sometimes it's exhausting to post over here for some reason. I think I like to ignore this section of my life unless I'm in a recurrence. : ) As for sedrate. My has been staying around 6 lately. My CRP the last time was 1.2. Personally, my sedrate doesn't seem to go up much during the recurrences like the CRP does. I am of course still on prednisone, so I am a different case entirely than you. I forget which one, but when I was really bad and needed the initial surgery, one of those numbers was around 135! I know the other one was up there as well. These numbers are just markers though, so while they can be helpful at showing that there is indeed an inflammatory process taking place, they aren't always in line with what you are actually feeling. Your sedrate at 3 is well within the norm. What is your CRP right now? Anything else elevated? How bad is your pain? Is it always there or does it go away? Luckily, I have been feeling good. I got my blood drawn just to see where I stood since I had to go up on prednisone with my last recurrence. Turns out my numbers were fine. Oh and another thing to mention, the numbers can lag, so you can have symptoms before your numbers actually go up. Was the blood drawn when you were having pain or before? That's just another thing to consider.

How are you doing otherwise? Have you seen a rheumatologist yet? What is your plan? It was you who posted about the maximized living, right? My husband and I have completely changed our diet and we're both feeling SO much better. I am less tired despite all the meds. I love that healing cuisine recipe site you linked to! I use it a lot! Following a stricter anti-inflammatory diet. Oh and I have been going to the gym regularly too!! I decided to stop worrying about when the next recurrence would strike. I am just doing what I want (within reason obviously) when I feel good and resting when I don't. I figure these recurrences keep happening pretty randomly, so I don't think there's much I can do to stop it. I feel better mentally this way.

Ugh. So stressful that you are dealing with this still after feeling good for so long. On the bright side, it's great that you aren't on meds! Do you feel like you need to be on something? I hope you start feeling better!

Take care,

Hazeldee


08/05/2011 11:26 AM
Peri2007
 
Posts: 3
New Member

Hi NMarie -

I had a follow up appointment with my rheumatologist on 7/27. Since it was a month since my last relapse he tested my sedrate and CPR to get a benchmark. The results were:

Sedrate 48

CRP 1.0

I was feeling a bit run down on 7/27 but other than that I was feeling pretty good. I got my test results on 8/1 and I had a relapse on 8/2 (still going through it). In hind site, I should have taken my NSAID on Monday.

I'm hoping this relapse is short lived because we are celebrating my Grandmother's 85th birthday on Sunday. I've missed Mother's Day, Father's Day and my dad's birthday this year. The way my relapses are occuring, it looks like I do not want to see my family. LOL! Luckily, my family (and friends) are supportive and understanding so they have learned to go with the flow.

Peri2007 (Renee)


08/06/2011 03:29 PM
nmarie
nmarie  
Posts: 32
New Member

Hey guys!

My pain is relatively low but goes up with any activity. I am still hopeful it will just eventually go away! My CRP is 0.2. I am happy it's so low, I think that is a good sign. Hopefully my pericardium will catch onto the fact there is nothing wrong and stop "freaking" out! I haven't seen a rheumatologist, my doctor hasn't talked about referring me to one and I'm not sure that I'm willing to see one because I really don't want to go on any immuno-supressents. I am waiting to see a more holistic doctor (not a naturopath) but this guy will look at different imbalances in my body and see if balancing them out will help, because most people should heal from this easier than I am Smile

Hazeldee, how wonderful you have been mentally "freed" up. That makes the most difference. I really believe positivity makes a huge difference in health or healing in general. It must be nice to go to the gym Smile I am glad the diet is helping! I had to really twist my husbands arm to do it with me because I can't do the grocery shopping. Although he is a naturally fit guy, he has realized how crappy eating makes you feel crappy, we just never noticed it before. I totally understand not always wanting to be here, it's a reminder that there is something a little off with health Sad I do it too!

Renee, Sorry to hear you had another relapse. Sometimes my pain gets worse before I go see my in laws. lol. Seriously!


08/31/2011 11:05 AM
kli
kli  
Posts: 64
Member

I rely on the sed rate and hs-crp rates for my daughter. Hers was as high as 27 (normal for her age is 1-10) and her hs-crp has been up to over 1.5 (normal below .80, I think)

Right now she has a sed rate of 5 (yay!) and a hs-crp of .80. She is not having any pain or attacks right now. She has been on a constant high doses of ibuprofen and colchcine.


09/08/2011 10:32 PM
Hazeldee
Hazeldee  
Posts: 259
Member

Hi nmarie,

Just got blood work back from 8/24/11. I thought I may be feeling a little something, but no chest pain or other symptoms. I had my best numbers yet with a sedrate of 5 (it had been 7 for a long time) and a CRP of 0.1! I was so excited!

Was it you that was looking into a medication not yet approved by the FDA to treat pericarditis? If so, what is the name of it again? I just contacted a doctor here who does some alternative treatments and he said he would recommend oxidation therapy for pericarditis. He has treated one other person successfully. Have you heard of it? He is going to give me a free consultation since none of it will be covered by my insurance. I take what I can get. I would LOVE to be off the prednisone, methotrexate, ibuprofen, and colchicine! Knock on wood!

kli, I am so sorry that your young daughter is going through this! (and you too!) How utterly frustrating. I would never wish this on anyone and I would hate to see my child with it. I am glad she's feeling good now. I think it's a good sign if she is doing so well while only taking ibuprofen and colchicine! I wish that was all I was taking. I can't get off the steroids and it has been almost 2 years now.


09/14/2011 01:51 PM
kli
kli  
Posts: 64
Member

Thank you, it is hard to see a child deal with this. I had never heard of it before. Wow, talk about an education. She just had more blood tests done, things are going up sad to say. She has started school again, they have no air conditioning and it's been in the 100's. It is really getting to her, chest pains now for over a week. Mostly mild.. but had one day that it really hurt and it scared her. Her sed rate is up to 10, which is the highest for her age in the "normal" range. I was so hoping we had it beat after 2 years of constant pain and medicine and worry.

09/14/2011 02:07 PM
Hazeldee
Hazeldee  
Posts: 259
Member

Oh kli,

I am so sorry. I know how terrible pericarditis is and I could never imagine watching my child go through it. You must feel so helpless.

What kind of doctor is monitoring your daughter? What is she taking for the pain? I just found out about an alternative therapy called "Oxidation Therapy". You can find info about it here: http://www.medical-library.net/ hydrogen_peroxide_therapy.html The doctor I saw has successfully treated one person with pericarditis, but more with inflammation disorders. He thinks it will work for me. I am on prednisone and methotrexate which go against the treatment by weakening my immune system, so I have that whole thing to deal with, but if your daughter is on such minimal meds., it seems like she would be a good candidate to try it. There aren't really negative side effects. It can be expensive since it isn't covered by insurance and the trick is finding a doctor who does it.

If you can avoid prednisone and methotrexte, do!

Hazeldee


09/15/2011 09:27 AM
kli
kli  
Posts: 64
Member

Hazeldee, it is such a helpless feeling, not being able to take her pain away or help her. Some days it is just so overwhelming. She has lived with this since she was 12 years old. She currently takes ibuprofen (at one time she took 1800mg per day) and colchicine and zantac for her stomach. I have been corresponding with a doctor in Italy and he says that when she is not in pain and her inflamation markers in her blood work are normal, that I start reducing her ibuprofen very slowly, 200mg per day every 90 days, so now we are at 1200mg per day, but her pain is coming back. She sees a pediatric cardiologist, but I have called twice this week, and not heard back from him. I am feeling somewhat abandoned. She at once time was on prednisone and she also had to take lasix for the fluid build up. At first, she wasn't diagnosed until after dealing with this for 6 whole months, by that time, alot of fluid had built up around her heart and she was suffering heart failure. Thank goodness I just kept being persistant and going to different doctors, or she would have died. She had alot of problems initially with fluid coming back. The doctor in Italy says to stay away from any steriod and all the research I have done also says that. Wish I had known that then, when they put her on them. Thanks for the information, I will sure look into it. I am constantly looking for new answers. She cannot stay on ibuprofen forever. Colchicine is an immune system suppressant, so we have to really be careful. I am considering trying a different cardiologist and a rhumetologist. It's just so frustrating sometimes. She used to play softball, be a cheerleader, very active. now she can't do too much or the inflamation comes back. Thanks so much for taking time to speak with me. I will look at that website. all new information is very welcome.

Take care.


09/22/2011 08:18 PM
nmarie
nmarie  
Posts: 32
New Member

Hey guys!

Hazeldee, I hope I'm answering the right question but the med I got prescribed is low dose naltrexone. It indirectly boosts your immune system. You'll need an open minded doctor to prescribe it and make sure you do your research on how it works. Smile

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