My rheumatologist said yes!

[Jeni]

Hi All,

It's been about two weeks now since I visited my family doc and she wrote to my rheumatologist to ask her why she refused to give me minocycline. Well, finally, my rheumatologist said yes! At first she told me no, but now she says yes! In her letter to my family doc she mentions that  she was worried about the whole lupus inducing thing with mino. Does anybody know anything about lupus induced by mino? All the research that I've done indicates that if you develop lupus from the mino it is totally reversible. I wonder what the real statistics are???? Actually, I think that she just didn't want to let me try the mino! Her letter mentions how sad it is that I have erosive RA and ulnar deviation. When I first asked her about the mino, she said no because of vasculitis, I guess from lupus induced by mino. Now she says that she is totally fine if I try it! She makes me sound so sad, but in reality I think that she is always so mad that I am not in more pain! After all, I did just get my black belt in karate at 41, so I am not too bad off! I have to say that I have found that exercise and avoiding dairy and wheat have helped me a lot! It just goes to show that it's good to be a “rebel” and a “trouble maker”!

I am going to try the actual brand name mino this time because when I went on the generic, it killed my stomach! I also got a horrible yeast infection. It finally occurred to me to try doubling my probiotics and the interesting thing is that my bloating from dairy and wheat has been so much better. I can actually tolerate eating a little bit of both of them and not bloat. My other thought was that maybe the oral anti-fungal I took actually did something? Anyway, I am so hoping that I will be able to tolerate the brand name mino. I kind of feel like this is my last chance since I've had RA since I was 24 and now I am almost 44!

I will try the brand name “stuff” and let you all know how it goes! In the meantime, thanks for everyone's help and support!

jeni

[Parisa]

Jeni,

Happy to hear your primary was able to bring your rheumatologist around.  It's great that you have your primary on your side, it really helps!  VSL30 is a very good probiotics, it's expensive but you don't have to take as many capsules as some probiotics so it works out.  ALso, it's a good idea to rotate different antibiotics.

[Jeni]

Hi Parisa!

Where do you order the probiotic that you mentioned? I'll just Google it and see what comes up.

You mentioned rotating antibiotics-I have never had a problem with azithromycin. I am pretty sure that I have seen people that have posted that they use it too. Do people generally use more than just the mino? I think I have also seen people post that they take two antibiotics at once. Anyone have any thoughts on this?

Thanks for the tip on the probiotic!

I like your Persian art! Persian miniature artwork is really cool!

Thanks,

Jeni

[Parisa]

Hi Jeni,

I meant to say VSL3 instead of VSL30. My husband is on a Lyme protocol so he has taken many types of antibiotics and has rotated them as well as the probiotics.

As far as the avatar, well, my husband is Persian and my daughter took Persian dance for many, many years.  It is a beautiful dance form (and she's a beautiful dancer) and I have many happy memories of those years.

[Jeni]

Thanks Parisa!

My boyfriend is Persian, so I tend to notice everything that is also Persian! 🙂

Jeni

[Maz]

[user=1749]Jeni[/user] wrote:

It's been about two weeks now since I visited my family doc and she wrote to my rheumatologist to ask her why she refused to give me minocycline. Well, finally, my rheumatologist said yes! At first she told me no, but now she says yes! In her letter to my family doc she mentions that  she was worried about the whole lupus inducing thing with mino. Does anybody know anything about lupus induced by mino? All the research that I've done indicates that if you develop lupus from the mino it is totally reversible. I wonder what the real statistics are????

 

Hi Jeni,

This seems to be a common excuse for not prescribing minocycline, unfortunately, and yet DILE (drug-induced lupus erythamatosis) is pretty rare. Studies I've seen out of UK suggest a 1 in 10,000 risk for developing it (the study links were posted somewhere here on the discussion forum a while back). However, even if it was as low as 1 in 1,000 that is still pretty good odds. And you are absolutely right, if DILE should occur, then it is very simple to diagnose and completely reversible. In fact, if your doc is that concerned, she could monitor your bloods for DILE and you could switch out before noticing symptoms. If you click on my Progress Thread link in my sig box below you can read about my experience of this. In fact, I was diagnosed with DILE in June and all my bloodmarkers for it are now completely normal and my symptoms resolved very soon after stopping minocycline. I switched to doxy and having no issues now.

Interestingly, one of the warnings on the TNF blockers is also DILE, so it makes no sense that this is being used as such a common argument against trialing minocycline. In fact, I spoke to a lady down south last week who has been taking Humira for about 5 or 6 years for psoriatic arthritis and she developed DILE and must now find alternatives to the biologics. Now I'm sure that DILE from the biologics is equally as rare as it is on minocycline….so go figure?! 😕 Why don't rheumies share that concern when writing a biologic script?

DILE can be caused by any number of medications, including thyroid and blood pressure medications, as well as some antibiotics and biologic drugs, to name just a few. It is just the way a certain individual's body metabolizes certain drugs and usually they are “slow aceytylators,” meaning that the persons affected have a problem eliminating certain drugs from their body quickly enough, so the drug builds up to toxic levels and mimicks lupus-like symptoms. As soon as the offending drug is stopped, however, the DILE signs and symptoms quickly disappear. It's also usually the result of chronic use, meaning after one has used a drug for a long period of time. In my case, I had been on low dose minocycline for about 16 months when symptoms first arose. When reported to my doctor, however, it was easily diagnosed by blood tests and not a problem after that. Obviously I was annoyed I could no longer take mino, as it had brought my RA to almost complete remission by both physical symptoms and bloodwork, but I'm working with a very good doc who knows his antibiotics and he's working hard with me to find the right mix that will just as effective. 😀

An added thought here is that AP docs are prescribing minocycline (including Dr T in Boston – a rheumy) to lupus patients! Real lupus is very different from drug-induced lupus, the latter of which is very much a drug metabolism-related issue.

Anyway, Jeni, this is longer than necessary, but just wanted you to know that DILE is a very poor excuse to stop someone from trying minocycline for their rheumatic disease, especially when there are other more commonly used rheumatic drugs that can also cause this issue and rheumies don't twice about prescribing those. Antibiotics are relatively benign and safe by comparison when gut health is carefully maintained. It's a good job you have your GP who is so supportive and covering your back for you. If you'd like, you're also most welcome to print off my Progress Thread to show your rheumy, as she (or your GP) can then incorporate the DILE labs into your regular bloodwork monitoring to keep tabs on this for you. 😉

Peace, Maz

 

[Jeni]

Hi Maz!

Thanks for all the information! I really appreciate that you took the time to give me a thorough understanding of DILE. I didn't even know that it could be referred to as such.

You're right-my Enbrel warns about a lupus-like condition that can occur! It was so weird how my doctor said “absolutely not” and then that she was “fine” and happy that I might add something to my Enbrel. It was such an about face change in attitude!

I am glad to know that doxycycline has worked for you. If the mino doesn't work at least I will have something else to try!

Jeni

[whaleharbor]

Jeni, 

Like you I've had RA for 2 decades and Mino has worked amazingly well for me and I'm only on 100mg every other day.

I can only tolerate it with meals.

Probiotics have helped tremendously.

There's hope even for us that have long standing RA!

xoxo

— whaleharbor

Minocycline 100mg every other day with food...lots of food: Zydus brand. Celecoxib 200mg twice per day: Greenstone brand.

[Jeni]

Hi whaleharbor,

Thank you so much for telling me that you are very similar to me regarding the RA and the mino! I can't tell you how discouraged I get sometimes. Actually, I am sure that you already know how it is! It really makes me feel hopeful to know that even after twenty years that the mino still works. A lot of the info on the web indicates that it is mostly the newly diagnosed that are helped with antibiotic therapy. My family doctor pointed that out to me even though I have been trying to ignore it! She still is very willing to help me and for that, I am so thankful!

You can bet that I will be eating major probiotics from now on! I'll check out the brand that you suggested too.

Are you taking brand name mino or generic? I would really be interested in knowing how people have handled the two. I especially want to know if people with sensitive stomachs do better on the brand name stuff.

Thanks!

Jeni

[whaleharbor]

The only mino available to me at Walgreen's is a generic.

I take it with food and often with dairy.

I don't follow the rules very well and voila!

In the beginning, I had a tough time tolerating the Mino but thanks to probiotics, lots of encouragement from my friends here and my rheumies…

As far as I was concerned I understood that there are no guarantees but if it worked for one it will work for someone else and I figured I'd have to give it a good try.

I responded both very quickly and very slowly…the Mino isn't going to make a big difference in a day or a week or a month…but over time slowly, slowly things got better for me and  my blood work shows it.

It's never too late to be well.

– – whaleharbor

Minocycline 100mg every other day with food...lots of food: Zydus brand. Celecoxib 200mg twice per day: Greenstone brand.

[Jeni]

Hi again!

It sounds like it took you some time before you could tolerate the mino. That is also very encouraging because I have been worried that since it upset my stomach I might not be able to get used to it. I am hoping that when I try it again that my stomach won't be as upset. I am going to try 50 mg 3x a week to see if that doesn't work out better than the 100 mg did. Also, I am going to try the non-generic mino. I guess if it doesn't work maybe I can try doxycycline. At least my family doc is willing to help me out here!

Thanks again for sharing your experiences. I really appreciate it!

Jeni

[lynnie_sydney]

Jeni – as I note you have had RA for close to 20 years, your body may be hyper-sensitive to oral abx. Here is a par from the Education section of our main site re starting doses in these instances:
https://www.roadback.org/index.cfm?fuseaction=studies.display&display_id=184#Anchor-The-14210[/quote]
This is also addressed in the Dr McPherson Brown video for which there is a link at the top of this Discussion area of the Forum: http://www.vimeo.com/3154687 and, of course, in The New Arthritis Breakthrough By Henry Scammell (in various places, including Chapter 31).

If you have stomach issues arising from taking oral abx, which can be the case when alot of NSAIDS and other drugs have been administered over years, then you may need to start really, really slowly on oral abx and, perhaps, even consider starting with IV's (to by-pass the gut) if that is a possibility.

Alot of folks on this Forum buy their brand name a great deal cheaper from online Canadian pharmacy http://www.buylowdrugs.com – you can do a search to find lots of posts on this subject.

One last point: I do know that Dr S. in Ida Grove is happy to consult with other docs regarding AP protocols and any problems encountered. Maybe you could consider this as an option for either your Family Doc or your Rheumie. 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)

[mj47]

hi jeni,

just wanted to chime in w/ my husband's experience.  he's been taking teva brand generic mino for about 4 weeks now.  since he's taken a slew of various meds over the years & we know that he's very sensitive to meds, he started out at 50mg on a literal every other day schedule.  he has found that he tolerates the mino best 2 hours after dinner (as that's his largest meal of the day).  when he takes it after lunch, he often feels kinda wonky in his head.  so after dinner it's been!
he increased to 50mg twice one day last week & he had a heck of a week…i believe it was a major herx (migraines, new neck pain, pain increase all over & a feeling of getting sick – though he never did get sick).  he couldn't even think of continuing on that dosage, so he's been back to 50mg every other day. 
he is feeling much better than last week, but still has some residual pain from that flare.  so my advise to you (to quote a few here on the board) is low & slow!

best of luck to you!!! 
~j

[Jeni]

Hi Lynnie,

I read through the link that you posted. I am so glad that you pointed the information out to me! I was really excited to see that working up from very small doses of mino even once or twice a week can work. I have been really lazy about doing enough research lately into helping myself! I received a microbiology degree about 20 years ago and I should be using it! I think I got so caught up in family stuff-death and caring for both my mom and dad, and now a divorce from an abusive spouse, that I have largely ignored caring for myself. Things have calmed down more and now I am able to take more time for myself.

Anyway, the info was really interesting and gives me more hope! Thanks for posting it. I really appreciate the support I have received from you all.

I have been following the John Hopkins thread and find it really hopeful and exciting!

Thanks again!

Jeni

[betsyr]

Hi Jeni,

I'm new to posting here but wanted to say “congratulations” on winning your Rheumy over – it's no like you're trying to get her to come to the “Dark Side” OR something, especially since A/P is so much safer than treating w/ toxic drugs.

I'm meeting w/ my Dr in 3 days for our first discussion of treatment since confirmation of Dermatomyositis by a muscle biopsy a few weeks ago, I also have Sjogren's syndrome and MS, I also might possibly have Lupus but no one seems to be 100 % on that and I don't think I do??

  I'm really really hoping that A/P will work w/ this particular combination of diseases and my doctor that I met w/ for the first time about 6 weeks ago MIRACULOUSLY was recently added to the list of A/P doctors that I requested from RoadBack Foundation! It was a huge relief since there are only several on the list here in Ohio and she is w/in 20 miles of my house!

Please keep everyone posted on your progress w/ Mino, if I'm allowed to use Mino I'll take your advice and ask for the brand name instead of generic and let you know how my treatment progresses 🙂

[Author]

Posts