Pulse dosing again- How do I move from daily to pulsed and not suffer?

[Patti D]

Hi All,
I feel like I keep repeating myself on this one but I am still unclear on how to do this correctly. I have been on daily minocycline for 1 year. I am now really beginning pulsed dosing but am very afraid that I will have severe joint pain without 100 mg 2x daily. Today is my very first day in over 1 year that I had no minocycline. I went to the archives and the physician packet section and both say Monday,Wednesday & Friday so my question is should I slowly go down to 3 days a week or try to go two days without mino and begin the Monday -Wednesday_Friday right away.
I just don't want to go backwards. I am feeling so good. My doctor is agreeing to the pulsed dosage with a followup to my bloodwork in one month.
Dr. Brown advised that dosage should be decreased once bloodwork returns to normal . The website does not tell us what bloodwork needs to be normal. Is it sed rate &CBC or is it CBC,sed rate, Rf,anti-CCP ,ANA & CRP? Any help is greatly appreciated.

Thanks
Patti

[Maz]

Hi Patti,

Great to hear from you!!!!! So happy to hear you're doing so well, too!!!! That is just awesome news. :roll-laugh:

I understand your desire to lower your dose and the concerns about worsening as a result. Thing is, any dosage change – up or down – may induce herxing. This isn't necessarily a bad thing, except in terms of the anxiety that herxing can bring…worrying, “Is this herx or flare?”

Some might say, why change what is working? Others might say, herxing is good! So, going into this, knowing you could experience herxing might at least help you to “gird your loins,” so to speak, and to not be too surprised should this happen. 😉

I think if my doc agree for me to lower my dose from daily dosing and left it to me to figure out, I'd do it very slowly. For the first couple of weeks, I'd probably take 200mg for two days and then 100mg on the third day, 200mg the next two days and 100mg the sixth day…and so on. Then, in the next two weeks, lower it to 200mg one day and 100mg on alternate days. Then, in weeks 4 to 6, I'd take it down to 200mg every other day, with 50mg alternate days. If all was well at the end of 6 weeks and herxing was still tolerable, I'd take it down to 200mg with nothing on alternate days. By week 8, if all was well, I'd shoot for MWF with weekend breaks. Really depends how low I planned to take it.

It might be you won't experience herxing at all, which would be fantastic! But, the idea with pulsing is to herx, just at a tolerable level. So, the good part is that if you do find yourself herxing, you can always increase the dose again in a “play it by ear” kind of way.

My inference from the comment that “all bloodwork needs to be normal” is that all inflammation markers and anything disturbed by rheumatic disease is within normal reference ranges. This is different for everyone, but things like anemia or elevated WBC, but also inflammation markers, like CRP, SED rate, RF, anti-CCP, ANA, etc, as you indicated above.

Of course, this bearing in mind – and assuming – that some of Dr Brown's were likely already on pulsing, so in those cases, the inference is that he would lower the pulse when these numbers were normal. So, say a patient was doing well on minocycline 100mg twice a day on alternate days, the goal would be to lower that to a manageable/tolerable maintenance dose….say 100mg or 50mg on MWF.

This is just my interpretation, though, and probably how I'd tackle the dose-lowering thing. Of course, in the beginning I was quite mad and tried to increase my dose way to fast and lowered it to 100mg bid on MWF and have done quite well on that dose since. Your hypersensitivity levels were probably not as bad as mine, so you were able to manage daily dosing very well.

The other thing to consider is that, with lowering the dose and the possible herxing it could bring, blood markers might worsen for a few months.

Challenging choice to make, especially when things are going so well. 😕 The good part is that if herxing becomes intolerable when the dose has got down a level or two, then it can always be raised to the next highest dose level again. When things stabilize again…then attempting to lower again is always an option. Playing it by ear and just taking it really slowly would probably be the way I'd go with this to find my ideal “size” that way.

All the best with this, Patti!!! Maybe others can share how they've done it and what has worked for them.

Peace, Maz

 

[Kim]

Hey Patti,

Great to hear you're doing well and understand your concerns about mixing things up, so good luck with that.  Are you thinking of doing this now, or waiting until after the holidays?

[Sierra]

I have tried twice this month to lower my dose to 100 mg. a day but my joints immediately screamed NO! I had anxiety about damage and about messing up two great years on AP so I upped my dose again. I'm thinking of consulting with an AP doc; my rheumy knows little about this treatment; I'm her only patient on it.

Sierra

[Trudi]

Hi Patti–

Glad to hear you are doing so well.  Good luck in your pulsing!!  I wonder, too, as Kim asked–are you going to start before or after the holidays?

For more than a week now, I am no longer taking my morning dose of pain medication (Indomethacin).  Signs of improvement–yeah!!  I have also started, very slowly, spending some time on my recumbant bike.  My knees are not back to normal, but I think it is doing them some good.  I haven't been able to go on any antibiotics because my CRP (inflammation) is way too high; right now I'm on herbs, supplements, and homeopathic extracts.  I tend to herx by way of fever and flu-like symptoms and almost always in the evening.  Oddly enough, I've noticed the worse I feel the night before, the better the next day–go figure??

I hope you continue to be pain free!!

Take care,

Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[Maz]

Patti…also thought to add that when Dr Brown talked about “tests returning to normal” and lowering to a maintenance, he likely also included mycoplasma testing in that picture. If memory serves, in the The New Arthritis Breakthought, he commented that he would watch those mycoplasma titers until they returned to normal and stayed that way for a period of time before lowering the dose.

Orchid started a mycoplasma testing results thread here and M. (Michelle) just quoted from Dr B's “Overcoming Athritis” which is very relevant in this context – thanks M!:

http://www.rbfbb.org/view_topic.php?id=1847&forum_id=1&jump_to=15055#p15055

Peace, Maz

[Patti D]

Damn,
I must be having a bit of brain fog.( Maybe I was nipping at that vodka mentioned on the Holiday gift list) I wrote out all of these nice notes and poof, I erased them.So here goes again.

Thanks everyone for your help. I read the words of the wise and caved in. I figured if I was so freaked out and stressed over the change, that in itself could cause trouble so I took the mino this morning( my security blanket)and mentally I feel better. I woke up feeling really good today, so no problems really. The way this disease came on with me has me a little gun shy on everything.

Maz, so glad your feeling so great . You are my beacon of light!! When I read your posts I think you are either a teacher, a private eye, work in research or are a medical librarian. You could be a journalist as well. Spare me, which is it!!! smily face!

Kim,
I crack up at some of your posts. I absolutely love your sense of humor .Oh man, to think you conquered man's worst fear, giving your own shots. Way to go girl! You rock big time. Hope you are feeling much better on your new lyme protocol.

Sierra,
I am glad I share the same fears with you over changing my dosage when I don't want to mess things up. I will get there just like you, but I really don't want to feel that sick ever again. We all know what 1 year or two years means in this treatment, and no one wants to go back to those first few days. This takes a lot of mental and physical energy to get well.

Trudi,
Way to go!!! I am so glad that things are finally turning around for you. It sounds like things are going in the right direction. How are you feeling about the -29 degrees today. Yuck!!!!

Thanks everyone. I still have it on my list to complete “my story” on the board this year. I was waiting for my recent doctor visit so I can speak in the positive with some real conviction!!! I had this on my” get back my health list” as well as my being able to sew and refinish some antiques while kneeling on the floor again. Guess what guys, that I did complete. My two 100 year old antique wicker barrel chairs are now a really cute red color with the cushions in a bright red, black and lime green floral. My husband did have to use the staple gun, but we did a shared project this way. Did I mention, he hates these chairs and says they are too girly for his sweet behind!! lol. What a guy!

Happy days!
Patti

[Patti D]

Hey Maz,
Yes, that is where I read about the testing. I did not test for mycoplasma so, can't compare to that. But all of my inflammation markers are normal, but as I mentioned before, that RF is still 104 and anti-ccp is 231, so I do have a ways to go.

It is -29 here today, just a wee bit nippy. I am trying to stay warm by going to cruise websites. Actually, I am just trying to avoid cleaning my trashed house. All are home from college and all we are doing is gabbing , giggling, and munching! Yuck! My two girls and I sent my husband upstairs so we could watch Mama Mia. We laughed so hard as he tried to get the two male dogs to go with him but apparently, they like show tunes as well!!!!

Patti

[Rockin Annie]

[user=287]Patti D[/user] wrote:

It is -29 here today, just a wee bit nippy. I am trying to stay warm by going to cruise websites. Actually, I am just trying to avoid cleaning my trashed house. All are home from college and all we are doing is gabbing , giggling, and munching! Yuck! My two girls and I sent my husband upstairs so we could watch Mama Mia. We laughed so hard as he tried to get the two male dogs to go with him but apparently, they like show tunes as well!!!!

Patti

Hi Patti,

Great your doing so well on AP, and good luck with your changes, and hope its doesn't cause too much herxing for you!.

You made me giggle with this post as my 2 girls and myself + our new puppy and my daughters puppy all sat watching Mama Mia, what a great movie, I have watched it 3 times already, such a nice feel movie!.

Have a wonderful Chrissy ……Annie

Diagnosed with RA in 2004, after trying many conventional meds I changed to mino.
2015 changed to doxy 50mgs
2016 went off doxy, after getting double pneumonia and massive flare put myself on 250 mgs Zith & 50 mgs doxy, which I will increase slowly.
Supps, magnesium, NAC, vit c, krill oil, oregano oil, thisylin, turmeric, olive leaf extract, vit B, multi vit.

[Patti D]

Hi Annie,
Thanks for the kind words. Isn't it funny that half way around the world from me, you & your girls are doing the same thing>I loved Mama Mia. I had my daughters dog here too plus our two dogs so I may have had you beat with all of the furry friends.

It is very cold here and to try and stay warm I was looking at cruises on the internet. Lots of great deals to Australia & New Zealand. Oh to be in warm weather right now!!!!!

I always enjoy reading your posts as you too are so positive. That helps so much in the healing process. A few good giggles daily also keeps us”normal”

Merry Christmas to you too and may your New Year as well as everyones' New Year on the roadback be blessed with good health & happiness!!!

Patti

[JBJBJB]

I also started pulsing. I started with Monday Wednesday Friday Sunday Tuesday Thursday Saturday Monday…..I did it after my 5 day IV boost. I might have done it too early and my fingers became very swelling.

Then I did this way,

Monday (200 mg), Tuesday (100 mg), Wednesday (200mg), Thursday (100 mg) Friday (200 mg) Saturday (100 mg)……

Just recently I feel a little better.

JB

 

 

 

[Patti D]

JB
That is what I am going to do. Sunday 100mg, Mon 200mg, Tuesday 100 and so on. That sounds like it may be a good alternative for me as I am afraid to go to just mino 3 days a week. Thanks for your input.
Happy holidays!

Patti

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