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I've been riding this RA roller-coaster and never know where it's going from one hour to the next. Herx or flair? More than RA? Do any of us ever really find out what's really going on? Always seem to be many more questions than answers.
March blood tests showed my RF down from 362 to 100. Great!
We've tried various doses of mino. My Dr consulted with Dr S in Iowa to get the 'recipe' and I started on 100 mg mino a month ago. The herxing has been pretty bad, but I'm getting through it most days, with a little help from some Darvocet since the OTC pain meds weren't helping much and I can't really handle Oxy. I start the Clindy IVs this coming Monday, twice a day for five days.
Gave myself my last shot of Enbrel April 10th with no difference in the pain and stiffness. I do believe it what little benefit I received from it ended back the end of January anyway.
Again, I'm so glad I researched and found this board! I have high hopes and am both excited and scared, but very ready to start the IVs. I “think” my Dr plans to use a new IV needle for each and am a bit concerned about this. My husband is going with me at least the first day and my Dr is going to try to teach us both how to do the IVs so I can finish doing them at home.
My husband is being very supportive, most of the time, as his Mother had RA, although it struck her after he was already in the Navy so he didn't actually 'live' with it. I've found that almost all that have not experienced one of these diseases, either themselves or someone close to them, have very little understanding. I'm now avoiding any discussion about it. One of the more annoying things I'm finding is when I can walk well enough to shop, I feel awful about moving so slowly; then when I feel the need to use a power shopping cart, I dislike and am embarrassed by the responses. I've considered using a cane sometimes, but typically when my legs are that bad, so are my hands. I used to be a fast walker and and 'expert' at weaving my way quickly through any crowd and I miss that. I'm always amazed at how fast this can move to different parts of my body, and involve my whole body. My hands and feet are now always in some sort of ache or pain, but it's really nasty when my neck and/or jaw(s) flare and/or the knees 'crunch' and don't want to work or support me. It is interesting to feel various parts of my body get 'hot' as they flare and when different parts decide to 'tic' for a while. I do enjoy the hottub and Epsom salts baths.
What differentiates the terms “Mild”, “Moderate”, and “Severe” RA?
How many have “Mild RA” for years prior to a flair that causes a test?
[user=756]DiamondTNT[/user] wrote:
I've been riding this RA roller-coaster and never know where it's going from one hour to the next. Herx or flair? More than RA? Do any of us ever really find out what's really going on? Always seem to be many more questions than answers.
March blood tests showed my RF down from 362 to 100. Great!
WOW, Diamond…your RF came down by 262 points within 7 months of starting AP?? That really is phenomenol news! Thank you for sharing that. 😀
Sounds like you're working with a really open doc, too! How great he was willing to consult with Dr S and that you are starting IVs soon!
Boy, do I remember those days of looking at the wheelchairs in stores and wondering if I should get one or not. :crying: Thank goodness those days are gone!
It's interesting that you say you have neck involvement. Have you ever considered Lyme disease? More often than not, the spine is spared in RA. I've also had the migrating, palindromic-like pains…it's as if the bugs are being rooted out and looking for new ground to settle. My herxing was very much in this pattern and it went on for a very long time. I still get occasional recurrances, but nothing like in the beginning and it's more phantom-like now.
Here are the ACR Criteria for diagnosing RA, its severity and remission:
http://www.hopkins-arthritis.org/physician-corner/education/acr/acr.html
The anti-CCP test is also used as a prognostic indicator for severity in RA (though this number often falls in response to AP!). Quest actually has references ranges for negative, mild, moderate and severe, but not sure how other labs do this. Have you ever been tested for anti-CCP? The strange thing about this test is that it can be positive for a long time before symptoms ever present. Without checking, I think it has a 95% accuracy rate and 5% of people will be considered false-positive.
Good news, Diamond, and hang in there! I reached the 50% mark at about 1 year and about 85% at the 2 year mark. I'm at about 95% at 2.5 years. Some people take a little longer, but as long as the longterm trend is forward moving, this is the main thing and definitely looks like you're moving in the right direction! It's very hard to decipher herx from flare in the beginning and I could only tell after the fact, as herxes were shorter-lived. Flares will continue, but over time they reduce in severity and duration, too. 😉
Peace, Maz
Diamond – that is great news – a truly dramatic fall in RF in 7 months! The fact that you started AP relatively early after your diagnosis may well be the key here. Maz makes a good point about Lyme as the cervical spine is indeed not usually involved in RA. I was also wondering about palindromic RA (comes and goes generally). I agree with her that it would serve you well to check this one out. Lynnie
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)Update:
Tried to get the Clindy IVs started Mon, 05/04, but Doc couldn't get the needle into the vein. Doc decided to order different kind of IV catheter needles and try again the next week. I went home with a swollen right hand from the IV we at first thought was going into the vein, but wasn't, and 5 additional needle holes that didn't find a vein.
Monday, 05/11, we started again with the new catheters and were successful. Only one that day and later I chatted with a phlebotomist (sp?) neighbor about finishing these at home. She was agreeable, so I did 2 on Tuesday with my Doc and brought everything home to start with my neighbor on Wednesday. She only missed a vein once and even found others that could not be seen, but she could feel. It was such a relief to be able to do these at home. Had to add Fluconazole for the yeast flare along with the refrigerated probiotics.
Last one was Saturday morning. So far, I feel pretty good with very little herxing or flaring. Back on heavy mino now, but will chat with Doc tomorrow about backing off for a while so I can do some travelling with my 92 yr old Mother in June, hopefully without heavy pains.
I'm set with everything needed for another set of IVs when the time is right. For now, I'm on 100 mg Mino 2 Xs a day and herxing was a problem on this dose prior to the IVs, plus vitamins and minerals and probiotics. So good to be off the Enbrel which I think had stopped working for anyway… if it had actually helped at all.
I hope I can be one of the 'poster kids' for AP!
I don't think my Doc has tested me for Lyme yet, and I will bring that up again tomorrow.
Another item I noticed was the diarrhea almost immediately stopped during the days of the IVs, but is right back again now. Strange.
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