Need help explaining side effects

[kayleen]

Hello everybody.  I need help explaining minocin to my family — they're having a hard time grasping the idea that a drug can make you better while still having such bad side effects.

I've only been on minocin about 10 months but feel it's helping.  The side effects are unbelieveable, though.  At times, my insides feel as though they're on fire.  I know from my doctor (Dr. F in Riverside) and from this board that I should expect this kind of thing and even much worse, but when I try to explain this drug I can't seem to do so in a way that people can understand.

Does anyone want to take a stab at it?  I'm determinded to stay on minocin, but wish I could get more support from family.  They're suspicious of a drug that  is “helping” yet making me completely miserable at the same time.  How do you all explain it to others?  Thanks in advance.

 

 

[steph-sclero]

Kayleen,

I think you're referring to 'herx' which is not actually a side effect of the minocin itself. A 'herx' or flare-up as most people will understand that term better is simply caused when the minocin kills the bad critters that are inside you and in doing so leaves behind a toxicity from the die off. This of course is in it's very simplest of forms and leaves out a lot of detail and clarity but most friends and family don't need these details and might become lost in it all. So, drug kills bad guys, bad guys die and give off toxins that then in turn cause your body to be toxic for a while, the toxins will flush over time and your 'flare-up will cease. Then the process begins again at some point and so on until most if not all are dead at which time you will be considered to be in remission but will need to remain on a level of this drug always to maintain your remission. Hope this does it for your support team, mine come closest to grasping this explanation. Sorry to hear you're family is not very supportive but unfortunately this happens all too often. The lack of support/understanding is exactly why this board is such a blessing. A lot of experience and knowledge as well as compassion and a genuine deep level of empathy can always be found here. Hope this is helpful. Yes, guy's I left out a lot of detail etc. but was trying to keep it in it's simplest form or you loose a lot of people in translation along the way.

Take Care,

Steph

[Maz]

Hi Kayleen,

Not sure of your diagnosis… Most RA patients will herx, but not all scleroderma patients say they do…although this is questionable, as herx symptoms may simply be entirely different for those suffering from scleroderma and some do indeed get worsening in the early months. Many, however, whatever the diagnosis will experience some worsening, in the beginning as well as intermittantly thereafter, and there's really not a lot I can add to Steph's great post that she's done so well to simplify! 😉

If it helps further, though, you could go to the Education section on the main website and in the Physician's Packet section, under the sub-header, “Historical Protocol,” you will find some information on the hypersensitivity state and herxheimer reactions you could print off to show your family and friends. Sometimes it's easier on us to just give people a “handout” than to have to try to explain ourselves. Then, all you can do is leave it to them to read it, hoping they will have a clearer understanding of what you're experiencing.

https://www.roadback.org/index.cfm?fuseaction=studies.display&display_id=184#Anchor-The-51540

Unfortunately, we can't make others understand what we're going through, because they aren't in our bodies. Nor can we make them listen to our explanations. If they 'prefer' not to understand after explaining or offering the info, then all we can do is ask them to respect our treatment choice.

As Steph says, if you have no other support at home, you will find plenty here. We all understand what you're going through in a very intimate and profound way. So although we can't be there in person for you, we can be there to uplift you in spirit…and really it's that part of us that hurts when no one else understands. :crying:

So, hang tight, Kayleen!  Any time you're afraid, uncertain or just need a smile…you know someone will be here for you. Sometimes I log on when I'm feeling rough and the first post I open will have just the perfect message I needed to hear, even though it was intended for someone else. Amazing how that happens sometimes, but I guess we're all more interconnected in ways we rarely ever imagine sometimes. 😀

Peace, Maz

[kayleen]

Thanks so much for the repy.  I am just amazed and how loving and supportive you all can be.  I'm realizing also that I need to back off and quit trying to force my family to understand — it's so true that I can't make them.  I'll do my best to explain, and give them the great information from this website to read, but then I have to let it go.  Thanks for helping me to see that!

 

[kayleen]

Thanks so much for the reply!  I appreciate your condensing things so that it's easier to understand.  I think one thing that makes herxing difficult to pin down is that it seems to be such an individualistic thing — a little different for each person.  For me the issue hasn't been “flaring” as much as things like burning muscles, a wired feeling, muscle twitches.  I feel that minocin has greatly improved my mood, similiarly to an anti-depressant, but my doctor said I'm the first to report this side effect.

Anyway, it seems to be a very complex drug with complex side effects.  Your posts were so very helpful, not just for the info but also because I feel very supported!  Thanks so much!

[lynnie_sydney]

Kayleen, dont think you're the first. With me, in the middle of the herx (joints all over my body sequentially hurt) I suddenly felt an increase in energy levels. That in itself greatly lifted my mood, that plus realising the migrating pain was a textbook herx. So, by week 4 or 5 I felt like singing! 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)

[kayleen]

Thanks for the reply — it's good to know I'm not the onlyy one.  Isn't it interesting, how we humans are always so afraid to be the one person on the face of the earth experiencing something?  At any rate, it helps so much to know I'm not alone in my symptoms!

[John McDonald]

I feel that minocin has greatly improved my mood, similiarly to an anti-depressant, but my doctor said I'm the first to report this side effect.

This is the first thing that I noticed too. It took 8 glacial months for me to realize that I was indeed much improved on AP, but I got to take away the mood lift during the first week.:)

[kayleen]

Thanks for telling me — I'll mention to my doctor that maybe I'm not the only one who's noticed this after all!  I call minocin my “happy drug” because it affects my mood to such a great extent.

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