- This topic has 14 replies, 4 voices, and was last updated 9 years, 5 months ago by
.
-
Posts
-
I just got my CRP results, and it’s the highest reading I’ve had so far. It’s 14.9 and the normal range is (0-5). Prior to starting AP my CRP had went from 10.3 to 7.8. I’m pretty down about it. I’m eating a strict diet of no meat, no sweets, no dairy, no nightshades, etc. Any thoughts on why this happened after starting AP and what I can do about it?
Thanks for any feedback.
@Ariel wrote:
I just got my CRP results, and it’s the highest reading I’ve had so far. It’s 14.9 and the normal range is (0-5). Prior to starting AP my CRP had went from 10.3 to 7.8. I’m pretty down about it. I’m eating a strict diet of no meat, no sweets, no dairy, no nightshades, etc. Any thoughts on why this happened after starting AP and what I can do about it?
Thanks for any feedback.
Hi Ariel,
It can feel very unnerving in the early months, but this is very normal, especially in the early days! Labs can and often do worsen initially with herxing. Mine got very high initially (44) and then started to come down after 3 months on abx. There have been folks here with a CRP well above 100, so you’re still on the low end of the scale for RA though, of course, we’d all prefer to have none. 😉 CRP is not very specific for RA either, because even a passing infection can cause it to elevate.
The other thing to remember is that AP is not immunosuppressive, so flares can still occur. These should become fewer, less frequent and less intense over time and all the usual things can be done to prevent these from occurring (detoxing, diet, keeping stress down, etc).
Hang in there!
Thank you, Maz. I’m at Disney right now and getting these results while on vacation made me feel sad at the happiest place on earth 🙁
I will continue to forge ahead.
Hello Ariel my CRP went up and so did my SED rate when I first began AP. It was at the 6 month mark that they all came back down into normal range. I hope this eases your mind and you can get on with enjoying your holiday. The funny thing is ( or perhaps not so funny) is my RA symptoms all began in 2013 during a trip to Disney land Paris 🙁
Lemons, Sorry to hear your RA started at Disneyland Paris 🙁
They didn’t test my SED rate this time, so I just assume that’s high as well. When my CRP was 10.3, my sed rate was 47; so I’m assuming it’s also higher than my highest reading which had been 55. I know these inflammation readings can fluctuate, and quite honestly the day I went for lab work last week, I was stressed, so I’m sure that didn’t help me.
Thank you for the reassuring words about the 6 month mark. I’ll keep my sights on April.
Maz, Thank you for giving me an example of your CRP level at one time as well as letting me know there are others with higher numbers. It helps put it in a little better perspective for me.
I was able to walk yesterday, because the day was arranged to allow for so many times to rest. The worst time was the Christmas Parade. Stood a little too long, so I won’t do that again. Wearing support socks and taking prednisone are allowing me the chance to walk and not use a wheel chair so far. So, I am thankful for that.
Only lasted 45 minutes at Epcot and had to get a wheel chair. It was a bit overwhelming coming to that conclusion, since it’s the first time I’ve needed one. But now that I’ve done it, it’s not as bad as I had thought, and it sure is helping me. My ankle and legs feel like they are on fire. Can’t imagine what it might feel like without meds.
I do have a question. The veins in my fingers (palm side) are really showing. Is this normal? My hands didn’t used to look like that.
@Ariel wrote:
I do have a question. The veins in my fingers (palm side) are really showing. Is this normal? My hands didn’t used to look like that.
The heat of Florida perhaps? A touch of Raynaud’s going in and out of AC to heat? Prednisone also causes thinning of skin and this might cause veins to be more visible.
Maz, I don’t think I was real clear. I had the vein symptoms in my hands probably about two weeks before coming to FL. So, does that mean Raynaud’s? Does that always happen with RA?
Another question…. Is it typical with RA to have your symptoms be much stronger on one side of your body than the other? My left hand is much worse than my right hand and has been since all of my symptoms began. My left leg and ankle have had a lot of pain on this trip but nothing in my right leg. Is this typical?
Also, is it typical with RA to have like a burning feeling in your leg if you’ve walked too much? Just trying
To understand what’s typical with RA.@Ariel wrote:
Maz, I don’t think I was real clear. I had the vein symptoms in my hands probably about two weeks before coming to FL. So, does that mean Raynaud’s? Does that always happen with RA?
Sometimes, yes, folks with RA can have a touch of Raynaud’s and it usually resolves as progress on AP is made. Does your skin look thin and shiny in these areas?
Another question…. Is it typical with RA to have your symptoms be much stronger on one side of your body than the other? My left hand is much worse than my right hand and has been since all of my symptoms began. My left leg and ankle have had a lot of pain on this trip but nothing in my right leg. Is this typical?
Yes, RA hops around the body with flares occurring in one joint and then moving to another. It’s not uncommon for one elbow to be worse than another or for one knee or hand, etc., to feel better on AP before the other side. Just depends how entrenched the infections might be in one joint or another.
Also, is it typical with RA to have like a burning feeling in your leg if you’ve walked too much? Just trying
To understand what’s typical with RA.If there is inflammation and swelling and nerve impingement due to swelling or inflamed blood vessels, then this can cause a sensation of burning. There are many other causes for peripheral neuropathy, though. Were you tested for Lyme through IGeneX, by any chance? If not, it might be a good investment when you get home to run this test. It may just provide enough info to determine if you need to take a slightly different abx approach.
Maz,
Yes, my palm and fingers look somewhat shiny. What does that mean?
I was tested for Lyme last Tuesday, but I don’t have the results back yet. It’s not the IGenX one, it’s just the regular Lyme test. I’ll see what those results are, and then may do the IGenX one.
I’ve had edema in both ankles since doing the IV treatments in Ida Grove, but I only have burning pain in my left ankle and left leg since being at Disney.
@Ariel wrote:
Yes, my palm and fingers look somewhat shiny. What does that mean?
I was tested for Lyme last Tuesday, but I don’t have the results back yet. It’s not the IGenX one, it’s just the regular Lyme test. I’ll see what those results are, and then may do the IGenX one.
I’ve had edema in both ankles since doing the IV treatments in Ida Grove, but I only have burning pain in my left ankle and left leg since being at Disney.
Well, I’m just a patient, too, and it is worth following up with a doc when you get home if it’s worrying you, Ariel. It could just be swelling in the hands and the neuropathy also perhaps due to impinged nerves, especially as you’ve been walking about in the heat. These can also be Lyme symptoms, which is why I asked about the testing. Definitely worth pursuing the IGeneX test if the standard two-tiered tests (ELISA and western blot) return negative. Just good to have an idea if it’s in the mix as abx protocols would be different.
Try not to think about this too much and just enjoy the rest of your vacation if you can. I know…easy to say but not so easy to do. 😉
Ariel,
I had that burning sensation in my right leg /calf/ and no doctor knew what it was /GP and rheumy/ When I started to follow a diet seriously /no gluten, no dairy, no sugar/ it disappeared. Also after some food /watermelon for sure/ I had that burning pain which didn’t allow me to walk. Now I don’t have it. Maybe try to watch your diet and experiment.
Have a fun in Disneyland!
Linda L.After 7 months on Mino on my recent blood test CRP went down from 60 to 39. At the same time SED /ESR/ has gone up from 52 to 63. A big surprise is RF which is now 67 and was in August 126. I don’t feel better yet, but some results look better.
Linda L.Maz, Thank you for the reply. I plan to follow up on the Lyme results when I return home. I am having a great time with family…lots of laughter, which has been wonderful. It’s difficult to not think about my health issues since I’m sitting in a wheel chair in the parks and feeling constant burning in my left leg. However, that being said, I’m glad I made the trip. It’s snowing back home today, and it’s 80 degrees here 🙂 It’s been good to get away.
Linda, I have been following a very strict diet since September. I have fallen off a bit while being at Disney but not a lot. I have been able to stick to it about 90% of the time, which is better than I thought it might be. I had done the ALCAT sensitivity test and a mini-elimination diet prior to coming, so I know some of my food triggers. The ALCAT had shown I have a sensitivity to white potatoes (not sweet potatoes) and last night I ate a small amount of mashed potatoes and within a few hours my fingers became much stiffer. I knew better 🙁 I’m a big believer that food triggers some of the symptoms. I believe the burning sensation could be the result of overdoing it the first day at Disney. I didn’t fall of my diet that entire day. I walked several miles and shouldn’t have. It was just so hard to realize I needed a wheel chair 🙁 Not sure about the possibility of a Lyme symptom, since I don’t have results back yet. Thanks for sharing that you had leg burning as a result of food. I will definitely watch for that in the future as a possibility of a food trigger.
So thankful I have this Road Back group to communicate with as things arise. It’s helped to put my mind in a better place while I’m here.
You must be logged in to reply to this topic.