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hi everyone,
can a herx last just a few hours? i have been feeling sh*$%y but in the morning from about 4 am to 1 pm really bad then it subsides a bit and it's just my usual bad. what is going on here, or is this a pattern some of you have? also stopped mtx 1 month ago, could I being paying dearly for that?
sue
Hi Sue,
RA is often worse in the mornings, altho that is a long time to be sore. Is it stiffness, pain, or both? I also stopped mtx about a month ago, and I can feel the cruddies creeping back, but I'm not yet back on abx.
linda
mornings have never been this bad for me,stiff but after up and about a bit it's okay…not this i am very stiff and hurting…my skin hurts so i don't know what to think. why aren't you on the abx? seems we both stopped that mtx about the same time, i hope we get thru this.
sue
[user=64]sue/ra[/user] wrote:
can a herx last just a few hours? i have been feeling sh*$%y but in the morning from about 4 am to 1 pm really bad then it subsides a bit and it's just my usual bad. what is going on here, or is this a pattern some of you have? also stopped mtx 1 month ago, could I being paying dearly for that?
Sue, your post took me back to where I was this time last year through to about December….and this was when things started to look up (a year in). Prior to that, I was in pain all the time, pretty much everywhere, and the improvements were so slow, I often didn't notice till after the fact.
What you describe is similar to what happened for me. As things started to improve, I'd wake with the usual morning stiffness and pain…some old and some new type of pain….and then it would be gone by about 2 or 3pm (instead of being a constant all day thing). Over time, this improved and now I wake with no stiffness and maybe just a little pain/weakness in my knees coming downstairs first thing in the morning. It gets better….it really does. It's just hard to imagine it will when you're going through it. :crying:
My own theory about this crappy morning stage is that the liver dumps during the night at around 3 or 4am. We also get somewhat dehydrated while we sleep, so there are a lot of toxins floating around in the body first thing when we rise in addition to the gel-effect that takes place in the joints. After we get ourselves rehyrdated and the lymph is moving, as we begin to move about, the toxins get flushed out and we feel better….only to begin the next round, the next day. Oh yes…and my skin hurt, too. Usually felt like I had battery acid flowing through my veins.
Are you taking the lemon/olive oil drink every night before bed? This might help, too…sort of a mini liver flush. You could also be right that coming off the mtx is causing you to herx/flare more…with less immunosuppression going on, your body may be killing off more bugs now.
Are you daily dosing or pulsing? If things don't begin to pick up in a month or two, you could ask your doc if you could change up your protocol. I started mino (with rifampin), in December, on daily dosing and it just about did me in…I then checked with my doc and lowered the dose to 100mg MWF (bid) and things have just got better and better from there. Adding zith in early March sent me into another tailspin…again, too high a dose and some more new symptoms, so lowered it and am continuing to improve. Someone wisely said to me, it's like “dialing your dose” and they were right….like tuning a radio to find the right station.
Hang in there, Sue…I know it may sound easy for someone to say, but I've been there, too, and I know all kinds of weird and not so wonderful things happen that are confusing and depressing at times. It does get better and you may find you just need to turn that dialing knob to find the radio station that suits your makeup.
Peace, Maz
thanks maz i appreciate your post. in march i was feeling quite good so now to go backwards again is such a bummer:X. i am trying to think of other things that i have done to cause a backpedal….i don't sleep well, wake up to go to bathroom and can't get back to sleep so i cut out all liquid after 6:00, maybe you are right and to much toxins roaming around. if it comes down to no sleep or pain i guess, i guess i won't sleep;) thing is my surgery incision isn't healing properly and doc said that's because of the ra but i think it is because i don't sleep. anyway the other thing that i did differently the last couple of days was start a supplement…i was off everything except probiotics) i started turmeric force, do you think that could cause this? i am not going to take it today. i dose 100 mg minocin 2x mwf and sunday. i don't have a good ap doc to tweak things with, at this point she is agreeing with my rheumy that i should go on enbrel.
have a good day,
sue
Sue – How long have you been on AP? It might help if you put some details in your signature section (e.g. how long you've had RA, how long on AP, other drugs). Click on 'Profile' and you will see this section at the bottom. Your info will then come up each time you post, so save you putting it in each time. It may also help others to give you helpful answers.
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)sorry lynne can't figure out how to change or add to profile, i can only seem to view it.:doh:
ra 2 years methotrexate, prednisone 2 years, ap 13 months.
sue
Hi Sue – just edited mine by clicking on My Account, then Profile and what came up was 'Edit Profile'. See if that works for you.
I can see that, after 13 months, it may not be a herx from mino and, indeed, may be stopping the methotrexate. You may need to taper off and consider some other pain relief. There may be others who have some good suggestions for you – paticyularly those who've been on the mthx. Hope you find some relief soon. 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)[user=64]sue/ra[/user] wrote:
in march i was feeling quite good so now to go backwards again is such a bummer:X. i am trying to think of other things that i have done to cause a backpedal….i don't sleep well, wake up to go to bathroom and can't get back to sleep so i cut out all liquid after 6:00, maybe you are right and to much toxins roaming around. if it comes down to no sleep or pain i guess, i guess i won't sleep;) thing is my surgery incision isn't healing properly and doc said that's because of the ra but i think it is because i don't sleep.
Hi Sue,
I see how it would be harder for you without an experienced AP doc, but there are other things you could try before hitting the big guns, as your docs are suggesting.
I'm kind of confused as to why your doc would say your slow wound healing is due to your RA. Uh…what about the mtx possibly causing this? Mtx is designed to suppress the immune system, so wound healing after your surgery is bound to be slower. Even though you came off it around that time for the surgery, it takes a while to recoup lost immunity. Also, how can it make sense to them to put you on Enbrel when you currently have a wound that won't heal? Isn't that one of the major contraindications of the biologics?
Coming off the mtx only a month ago could well be producing this rough patch for you and some sort of anti-inflammatory might help you through this, as Lynnie suggested.
Also, only a suggestion, but Lori may be able to share her experience with this. She was just mentioning in a recent thread that Dr Sinnott prescribed daily mino after having IVs in Ida Grove. She came off mtx cold turkey and said she hasn't experienced any whiplash effect, at all…was concerned, in fact, that she hadn't had a herx. Everyone is different, of course, but as you don't have an experienced AP doc, perhaps you could call Dr Sinnott for a phone consult and see what he might be able to suggest? Or, even better, if there is any way you could get to him or another AP doc for IVs, this might give you a bit of a jumpstart. Just trying to think of possible options here.
I haven't heard of tumeric causing this type of reaction…it's more an anti-inflammatory than an anti-microbial, I think. Given what you've said, just from a fellow patient's vantage, it sounds more likely an after-effect from surgery and whiplash from coming off of mtx.
The only other thing I can think of that might help is to keep everything moving in your gut in as healthy a way as possible….lots of hydration, doing some gentle exercise to move lymph (even if sitting in place), detox drink, lots of roughage in the form of fresh fruits and veggies. Do whatever you can think of to move out the toxins and support your immune system…it's probably still in recovery mode and any surgery always slows up the gut.
Anyway….sounds like your gut is giving you a good heads up in many ways…. Listen and trust that cause I think, in your shoes, I'd be confused with the mixed messages from the docs, too. 😉
Peace, Maz
thanks maz, so many good suggestions. i am feeling so much better today, so weird. i think you are right about the hydration tho, i stopped drinking after 6 so maybe that wasn't such a good idea. would dr. s. talk to someone over the phone….i can't get my doctor on the phone EVER, what a caring man he must be.
hugs,
sue
[user=64]sue/ra[/user] wrote:
would dr. s. talk to someone over the phone….i can't get my doctor on the phone EVER, what a caring man he must be.
Yes, although I haven't spoken to Dr S, myself, I believe he does take phone consults on certain days/times of the week. If you jot a note to Diane at apdoctors@roadback.org, I'm pretty sure she has the info for this…definitely worth a shot. 😉
Peace, Maz
Dr. S will speak to you over phone on MTWand F between 12:30 and 1:30 central tme. I have spoken with him once. The office suggested I faxed any recent labs I had so he could look at tehm while he's speaking with you. Hope this helps.
😉
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