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I?ve just seen my rheumatologist who has agreed to put me on Minocycline instead of the Humira she proposed last time I saw her. Her concern is that I could suffer joint damage whilst on AP and has suggested a maximum timescale of 6 months. I explained to her that wouldn?t be long enough and we have agreed on a year before we discuss Humira again
Now my problems start
I have PSa not RA and I am looking for advice from anyone who has been down the same route.
I?m in a lot of pain as my last steroid injection is wearing off and I stopped taking Leflunomide 3 weeks ago.
However I do have a very positive attitude! I?m taking cod liver oil and MSM together with Diclofenac and Lansoprasol and I am also going to start on daily probiotics. What I would like to know is what else I should take when I go on the Abx to make life easier.
My other question is that I have been prescribed 100mg Minocycline twice a day. Is this too much?
My heads in a spin and whilst excited at the prospect of improvement, I?m also apprehensive about what the future holds.
Thanks to everyone for their help and kind advice to date.
Simon 🙂hotspur, I can only speak for me but to give you perspective. I had RA for almost 20 years before I started AP. I felt better in a month. Within 6 months all of my blood work was “excellent.” (according to my rheumy) At a year “almost” normal (according to my rheumy). I believe that my body reacts quickly to medicine (all meds).
You don't have to believe for it to work. It doesn't work for everyone but if it has worked for others why not you….only you can decide if it is worth a try.
I was initially prescribed 100mg twice per day which seems to be the Harvard Protocol – – I was seen by the head of Rheumatology at Harvard and was prescribed that very same dose. I could not tolerate that much but many people do. You can search for that on the boards and throughout and see that for yourself. I guess like with all meds, things sometimes have to be tailored to the individual.
As for joint damage, well, I have a lot of it…from almost 20 years of virtually untreated RA – – I took only nsaids and pred – – I refused methotrexate and biologics (which weren't even initially available) because of the potential cancer risk. That was a very personal decision and one that distressed my rheumy very much.
My joint damage is not “pretty” but I've come to terms with it, I think. I am very grateful to have found AP.
I know that other more experienced members and volunteers will chime in with pointers, tips etc…
You are in my prayers.
— whaleharbor
Minocycline 100mg every other day with food...lots of food: Zydus brand. Celecoxib 200mg twice per day: Greenstone brand.
Simon
My psoriatic arthritis attack started very suddenly in Dec 2007, with a pain level that was not tolerable and I could not sleep laying down and only briefly in the recliner. It started in both hips, quickly moving to both shoulders and spinal column. I started on Diclofenac(Volteran) and then added Prednisone and Methotrexate. The Methotrexate did not allow me to get off Prednisone. In June 2008 I started on 100mg twice daily genaric Minocycline and continued the 50mg Diclofenac. I stopped the Methotrexate the day I started Mino and was off Prednisone in 30 days. The high level of Minocycline worked well for me and was necessary, since my pain level increased to an unacceptable level whenever I tried cutting back the dose level. I felt relatively normal very quickly at the high level of mino and was back to normal activity and playing golf again. I did not experience any herx at the high level of Minocycline treatment. I assume your rheumatoid factor is negative. Do you have symtoms of skin Psoriasis also? My scalp and nail psoriasis only started after the initial arthritis attack.
vinny
Psoriatic Arthritis: 100mg Minoz Minocycline TABLET daily; twice daily 400mg Pentoxifylline;125mcg Levotyroxine: Have been using some level of Minocycline since 2008
Hi Simon,
What GREAT news for you!! I know how worried you were about your task of convincing your Dr. about AP. You obviously presented the case well. Congratulations!!
I know I am nowhere near being an 'experienced' APer, but when I first trialled with minocycline back in February, after 4 1/2 weeks @ 100 mg twice a day, I tolerated the dose, but started to get greyish/brownish patches of hyperpigmentation on my cheeks. Not really attractive. 😛 I personally did not have any herxing at that dosage, but……in reading the entries on this board, you can immediately see the variability of reactions to this amount, and much , much, less.
In a recent post I indicated all the supplements I take and other members actually have them listed in their signatures. I really think that my copious amounts of flaxseed oil, cod liver oil, borage oil, and Omega 3 capsules have assisted me over the years—on or off minocycline.
Good luck!!!! I'm anxious to hear about your progress.
So is it 6 mos. before you see your Dr. again??Nickie
Simon – great news that you got your rheumie onside….and negotiated 12 months, no less! Gold Star for your negotiating skills, my friend! :dude:
My other question is that I have been prescribed 100mg Minocycline twice a day. Is this too much?
That 200mg daily regime is fairly typical from a rheumatologist who (admittedly)doesnt really understand this approach well. Whilst that dose is fairly commonly rxd for SD patients (many of whom dont herx in the same way as those with inflammatory rheumatoid conditions), that is a huge dose to start with. And it could well induce a mammoth herx, particularly as you have said your pain levels are pretty high right now.
Also, the prescribing of daily dosing at this level is thought by many to be more anti-inflammatory in its action versus targeting pathogens. Pulse dosing at lower amounts is generally prescribed more by those docs who subscribe to the infectious origin. This is counter-intuitive to the way most conventional docs view the prescribing of antibiotics and the American College of Rheumatology's view of minocycline as (merely) a DMARD. So, it really depends on your point of view.
You'll also need to ensure that inflammation is sufficiently under control to ensure that the abx is able to reach its target. You'll probably need to monitor your level of inflammation and find what works best for you. Were you having regular steroid injections? If so, I imagine your rheumie would have advised a slow weaning off.
All I can tell you is that, if it were me, I'd at least be be starting low and slow. 100mg MWF is the historical dose rxd. Even this is sometimes too much at the beginning for some hyper-sensitive people and may need to be reduced at the beginning to make herx symptoms tolerable. If it were me, I'd also still be aiming to consult Dr H at some point- he has many, many years experience in prescribing AP and in tweaking regimes to suit the individual. Alternatively, you could choose to further consult with your (now onside) rheumie and tell her you'd like to start more slowly.
However, all these decisions can only be made by you, Simon. Maybe read up some of the several PsA AP testimonials that are on the rheumatic.org site to see what worked best for them. Whatever you decide to do, you're on your way now. I wish you all the very best and there'll be lots of people here to support you. 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)Lynnie
I generally agree with your analysis, but if I had followed your advice with respect to Psa, I probabaly would have quit AP before I had used it very long. I got immediate relief from 100mg twice daily Minocycline and a lower level did not work for me. I continue to put forth my case which was very severe and the high level of Minocycline was required in the beginning. I experienced immediate relief and no herx reaction. I was not successful in backing the level of Mino down until after a year at the 200mg level. My experience says that for Psa, start at the recommended 200mg and only back off if a herx seems to increase pain rather then getting symptom relief.
vinny
Psoriatic Arthritis: 100mg Minoz Minocycline TABLET daily; twice daily 400mg Pentoxifylline;125mcg Levotyroxine: Have been using some level of Minocycline since 2008
Hi Simon,
You've already had some great replies to the dosing issue. The only other fellow patient recommendation I'd add follows on from what Nickie said about hyperpigmentation.
Vit C taken daily seems to help some people avoid the gray/blue hyperpigmentation issue get while on minocycline. This discoloration benign if it occurs (it doesn't occur in everyone) and is reversible upon discontinuation of mino, but nevertheless most people don't like getting it! On the other hand, mino does seem to give some people a rather nice California-like tan look.
There is some info about this under the Current Protocol of the Physician Packets on the main site. When taking Vit C, it's best to take it with meals and to also take a buffered variety (with rosehips) so it's easier on the stomach. People with sclero do not take Vit C normally as it contributes to collagen buildup of the skin, but is somewhat collagen protective in people with collagen breakdown in joints.
There really isn't any clear reason why this gray/blue hyperpigmentation occurs with mino and not other tetras, like doxy. However, I came across a study a year or so ago (I think done in UK) where biopsies of these blue/gray marks contained large amounts of iron. All the tetras are chelative in action…they bind to metals/minerals. This is why you mustn't take them along with supps containing these, as they bind to the antibiotic in the gut and render it useless. I rather think, therefore, that mino tends to bind more strongly to iron (as does Vitc C!) in the bloodstream (mino has angiogeneisis props) and it just causes a build-up of iron, forming these skin deposits.
It also seems that people on lower, pulsed doses are less likely to get the blue/gray hyperpigmentation than daily doses…clearly due to higher levels of mino in the blood.
Anyway….just thought to mention Vit C (buffered), as you asked about any other supps you might want to consider. 😉
Congrats on getting your mino, Simon! Way to go with your negotiating skills to at least give mino a yearlong trial…bearing in mind that some people can take a year or two to turn the corner. Your rheumy might even be open to watch the Dr Brown video, which shows joint scans of a patient over several years…this therap takes time and patience.
Peace, Maz
Hotspur, vit c doesn't agree with me…and while I'm not a smurf yet (blue cartoon creatures seen in the US)…should I become a smurf…so long as I feel good…I figure hey, smurfs are cute.
I may be mistaken but I think the blue marks can be lasered off.
😉 wink!
— whaleharbor
Minocycline 100mg every other day with food...lots of food: Zydus brand. Celecoxib 200mg twice per day: Greenstone brand.
Thanks to everyone for all their kind words and help!
Vinny to answer your question, I dont have visible Psoriasis which is probably why I initially didnt believe my diagnosis. I have a slight pitting in my nails and do get dry skin/scalp from time to time.
Can I be a nuisance and ask another question! I understand that you have to take Minocycline on an empty stomach (i.e. 2 hours after eating) but what about drinks during this time. I read somewhere that you should only drink water not coffe or tea?
Take care all
S 🙂
Well done Simon!
thats a real breakthrough and you have to keep educating your doctors for them to understand the lengh of time it can take. I have always been allowed to say what dose. Although seeing Dr H who changed my abx from doxy to mino he has said 100mg mon-wed-friday. I hope it gets working really quickly for you theres no reason it can't stay positive Good Luck!
Rosemary :roll-laugh:
Simon
Minocycline is the most effective on an empty stomach. I take one as soon as I get up with a full glass of water. I take the other one 2 hours after the evening meal. I would not take Minocycline with coffee, tea or juice that would add more acidity to your stomach. I would continue with the Diclofenac through the initial phase of the trial, which will keep inflammation low and help the Minocycline effectiveness.
vinny
Psoriatic Arthritis: 100mg Minoz Minocycline TABLET daily; twice daily 400mg Pentoxifylline;125mcg Levotyroxine: Have been using some level of Minocycline since 2008
The only way I can seem to tolerate the Minocycline is with food. I take it at night with dinner and don't worry about whether or not I have dairy with it. So…I guess I continue to “break the rules” but it works for me.
— whaleharbor
Minocycline 100mg every other day with food...lots of food: Zydus brand. Celecoxib 200mg twice per day: Greenstone brand.
hotspur2904,
Just thought I would add my 2 cents worth!!! I am new to A.P. I drove over 700 miles to see a very experienced A.P. doctor.
I was given 5 days of I.V. treatments, now I am in my 6 th week of 100 mg. minocycline twice a day. It has not been easy, “But”, I talked to my A. P. doctor this morning and He is very glad with my progress. I am too. I am getting better, but I know that I am not well yet..
He told me that if I could ,he would like for me to take the minocycline on an empty tummy, but that if I couldn't , he would rather me take it with food , than not be able to take it at all. He said it would make it less effective, but less effective is better than not at all…Also I read somewhere that it is good to take it with green tea, because green tea helps with the effectivness of the antiboitic. I have been taking it on an empty stomach, with no problems.
Hope this helps, Judy
R.A. approx. 2 years. only diagnoised less than 6 Mo.
Good for you, Simon!
Just wanted to let you know, as a veteran of PsA, of the differences between RA and PsA. The most important one is that PsA usually does not damage joints as quickly or as seriously as RA, that's the good news. The bad news is that PsA is often more painful than RA, because it causes inflammation in the joints and the connective tissue surrounding the joints, even the bones; this is why toes and fingers get that “sausage” shape when affected, instead of just the joint looking swollen. So don't ignore your pain or think you're being wimpy if it seems to be very painful, because it is. I've used alternative therapies like acupuncture for pain with great success. I wish you good health and hope that you see results soon!
linda
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