Just an update…1 1/2 months on Mino

[jlynne]

I’ve got to say, I’m finally feeling like I am getting better. 😀

I started out with 100mg MWF. After a month, I decided to go 100mg Monday thru Friday. I started this last week. Not having it on Saturday and Sunday, I felt a little worse.

The dreaded neck pain has eased up! That makes me so happy. I will tell you, when my neck is flaring, my days are horrible. I still have some neck pain but not near what it was.

I’ve had some pains in areas never affected before, but it’s there one day, gone the next and not very painful at all. My right hand has been flaring as well as my right foot. I can tell it’s a flare because it hasn’t eased up but not as painful as it has been in the past.

I’m worried about damage in my hand. My flare has lasted longer in that hand than usual.

Overall, I can live with this if it never gets better than it is now. I can function! I’m praying that it gets a bit better day by day. 🙂

[Parisa]

Sounds like you are making some good progress!

[Svetulka]

jlynne,

I am very happy to hear that you are getting better. I started Minocin 3 weeks ago, first week at 100mg MWF and now switched to 2X100mg every day. Ever since I switched the dosage, I have been having horrible flare in my neck and back. It has been very difficult to function at work with this horrible flare and no NSAIDs are helping. As a matter of fact, I stopped taking NSAIDs, because what is the point….the pain is still there. The weird thing is that mentally, I feel much better, maybe it is the placebo effect 🙄 Now, when I have flare in my neck, I no longer think that there is something structurelly wrong with my neck, but consider the posibility that the Mycoplasmas are releasing toxins. That thought encourgages me to keep moving and enjoy life with my family. However, this flare has been lasting longer than before and I keep my fingers crossed that Ap is working. My biggest hope is to feel better like you and not have such a bothersome pain in my neck!

[PhilC]

Hi Svetulka,
@Svetulka wrote:

I started Minocin 3 weeks ago, first week at 100mg MWF and now switched to 2X100mg every day. Ever since I switched the dosage, I have been having horrible flare in my neck and back. It has been very difficult to function at work with this horrible flare and no NSAIDs are helping.

It sounds like you increased your dose of Minocin much too quickly. Consider starting over and taking things more slowly.

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[ablegirl]

I am going into my 9th month on mino started off 100mg MWF, I only last week increased my dose to 100mg M-F. I reckoned that maybe now I could possibly tolerate an increased dose and obviously interested to see if I could improve further. I have improved dramatically already so fingers crossed. I almost didn’t want to post as I don’t want to tempt fate too much. I did really well on 100 mg MWF so for people just starting out I wouldn’t rush things too quickly. I’m hoping to go to the 1 year mark and re-assess. I’m hoping I might be able to stop AP therapy then but not sure if this is a fix for me or an ongoing therapy.

I would recommend everybody to keep going but this isn’t a quick fix and definitely takes a while for the small gradual improvements to add together before you suddenly realise how well you are now in comparison to before. I have just started swimming again.

[Maz]

@ablegirl wrote:

I’m hoping to go to the 1 year mark and re-assess. I’m hoping I might be able to stop AP therapy then but not sure if this is a fix for me or an ongoing therapy.

Great to hear of your rapid improvements on AP, Ablegirl! 🙂

Just a thought to pass along…duration of disease will usually come into the equation when deciding whether or not to stop AP (you mentioned at the one year mark) when remission in symptoms/labs is reached. Fifteen years would definitely fall into the “longstanding disease duration” bracket, in other words. Most folk won’t want to risk relapse when reaching remission, so will either remain on their same dose or gradually lower to a smaller pulsed “maintenance” dose and keep it there for a good period of time to maintain their remission. Some will remain on their maintenance dose for life, but those with milder disease may then consider stopping altogether to see how they go. Brown’s goal was to get patients off their AP eventually (as mentioned briefly in the book), though some needed to remain on it for life (more severe disease). It’s probably a matter of weighing risk/benefits and, as mino in small, pulsed doses is very benign, most just prefer to ensure their remission sticks.

[Author]

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