What Does a Herx Reaction Feel Like?

[notabene]

I just started taking 100 mg of Minocin once daily in late October, plus 30 mg of Procardia. Other than a few jolts to my right hand the first week, I haven’t noticed any flu-like symptoms nor increased fatigue. In fact, I traveled from the US to Switzerland, and then from Switzerland to Indonesia, kept a full schedule, and returned without any more fatigue than usual. My feet and ankles were swollen after the Indonesia trip, but I did spend about 16 hours on flights. My chest and back skin felt a little more tough when I returned from Indonesia, but have softened now that I have caught up on my sleep. My husband thought my skin felt normal, or just part of aging skin. 😕

On a positive note, I can now make my left hand into a full fist, and my right hand is there but for the stiff index finger. I have had no blue/cold fingers, and the open sores on my right index and middle fingers have healed.

What should I be expecting, and when? I know that it is indeterminable, and depends on the individual, but what experience have you had?

I see my doctor on 19 December, so I am collecting my thoughts on what to relate to him.

Thank you – it’s good to have a knowledgeable and caring support group.

[lynnie_sydney]

notabene – you may want to have a look at this thread and my post in it on the subject of herxing in SD patients:

viewtopic.php?f=1&t=6660&p=57861&hilit=2005#p57861

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)

[kater]

Hi notabene
I have sd also, diagnosed in Aug 2011 and started AP 1oomg minocin daily and 1200mg clindamycin oral once a week on Nov 9, so I have just completed one month today. The two things that I have noticed that I think were herx were an arthritic type of aching in my finger joints (diff from the usual stiff and tight thing) and sore feeling skin above my right wrist. Both those things were brief and now gone. I just got results of a positive mycoplasma test and so increased the minocin to 100 twice daily and a couple of days after that I am feeling remarkable softening of my skin in my forearms, chest and neck. My hands are feeling pretty good–the Raynaud’s is the thing giving me the worst issues now as it is winter. So, I don’t have much experience with this, but these are my observations to date. I read your other post about the Minocin from Northwest pharmacy and would love to hear how that goes for you. I put aside 7 months of stock from local pharmacies but no idea what to do after that. Please feel free to post or send me a PM. Good luck at the doc!
kate

Systemic Scleroderma since 2010. Lyme and Myco P. AP and many other antibiotics and treatments since Nov. 2011. Presently mostly in remission other than fatigue.
Teva Minocycline 100mg a day. Dessicated tyroid, LDN 4.5, LDI, hawthorne, curcurmin, berberine,, caprylex, reishi mushroom, liver protect, zinc,, fish oils, magnesium, vit K2, d3, bcomp, E, C

[notabene]

Thank you for your response and the thread link Lynnie. I had looked back at Scammell’s Scleroderma book, which I read last March, but didn’t see any detailed definition/descriptions of JH.

I especially took note of Scammell’s comment in your link: “As for scleroderma, it’s not inflammatory, so obviously the herx, if there is one, would not present in the same way as in RA. I don’t know how a scleroderma patient would know whether he has ever had a JH reaction, or how he could be sure that he has not.”

That’s my circumstance. The question I need to sort out with Dr. K is whether I am progressing on the current 100mg Minocin daily, or whether the dosage should be increased to 100 mg twice daily.

The board posting states that “Scleroderma patients who do not exhibit inflammatory components to their disease generally do not report a Herxheimer of clinical significance.” But how does one know if they have ‘inflammatory components’? Yes, my hands are swollen in the morning, although to a lesser extent since starting antibiotics. I did have undue pain in my hands the first week, alleviated with some aspirin.

By the way, I didn’t see BID in the list of abbreviations, so wonder if anyone can explain. I have enjoyed a life blissfully unaware of medical terminology until getting scleroderma.

Kater: We have such similarities, including the drive to rid ourselves of this disease as rapidly as possible. Friends on Team Inspire who have benefited from AP encouraged me to start the protocol as soon as possible, but it took me so long to sort it out with my doctor here, and to finally decide that I needed the expertise of a US scleroderma AP expert.

I have also benefited greatly from myofascial therapy (dry needle). Back when I thought the swollen hands were due to whiplash and before I started taking any medication, my physiotherapist was able to soften and increase the flexibility of my right hand (the worst affected), also ridding it of a collagen ‘hump.’ The therapy also reversed the ‘frozen face’ I had in autumn 2010, and brought back the wrinkles. 😕 I have not been able to see him since July, and it really shows. I look forward to seeing the joint effects of AP and myofascial therapy when I start up after returning from North America to Switzerland in January.

Another Scleroderma AP friend whose symptoms started after a bout of whopping cough, as I did, said that she had ‘tingling’ sensations in her fingers when she started AP, but that they subsided soon after. I occasionally get a tingling sensation, but I wonder if it is a release of energy akin to neutralizing a trigger point. You can probably relate to my description of an electric storm cascading down my arm when the myofascial therapist neutralized a trigger point in my scalene muscle. The release was always followed by increased hand flexibility.

We should stay in touch – I’ll send you a PM.

Nancy (B, like another person on this Board)

[notabene]

Ah, good old Google. I Googled BID to learn that:

“Seen on a prescription, b.i.d. means twice (two times) a day. It is an abbreviation for “bis in die” which in Latin means twice a day.”

[Parisa]

Notabene,

My husband never truly followed the typical herxing patterns even though he definitely had inflammatory components in his swollen hands, finger joints, etc. also. When we hit upon an antibiotic combination that worked though he would have clear improvement and so his treatment was based more on improvement than on whether or not he responded with a herx reaction.

[Author]

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