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Hello, i see different options of the protocol. Which is the right one, the better? I am going to discuss it with doctor, not a rheumatologist. What treatment to discuss- only Mino or combination?
Hi Kitty,
Which rheumatic disease are you dealing with and do you have much in the way of measurable inflammation? It can have a bearing (see FAQs) on which protocol to do. Also, are you on any other meds?
I have rheumatoid arthritis. I use only sulfasalazin and methylprednisolone (from a week). My rheumatologist prescribed me methotrexate and methylprednisolone but i refused the treatment. I had temperature in one of the joints of the arm but now i’m ok. CRP – 1,24.
I see things clear now. Is it possible to use AP with sulfasalazin and prednisone(if i feel bad) and later without them or sulfasalazin is not okay with this treatment?
Thanks, Kitty. The following website is useful for checking medication interactions. If you click on this link, you will find there are no known interactions for sulphasalzine and minocycline, so they can be taken together. As both have some effect on the gut, most APers replenish good gut bacteria with a good quality probiotic, spaced at least a 2-3 hours away from antibiotic doses.
Drugs.com Interactions Checker: Minocycline and Sulphasalazine
People with a lot of pre-existing inflammation tend to herx commensurate with RA severity. In those cases, it’s better to start low and slow on a pulsed dose (100mg once a day on Mon-Wed-Fri). Some people can tolerate higher dosing (100mg twice daily on Mon-Wed-Fri). The purpose of starting low and slow is to gradually titrate dose to individual tolerance. Starting too high can result in heavy herxing (which is basically an increase of existing disease symptoms, plus a few others, like heavy fatigue). Rheumatologists, if open to prescribing minocycline as a DMARD, will generally prescribe the full dose (100mg twice daily, every day) and this can be unbearable for some….for others who are already well-covered on another DMARD or biologic medication), they may tolerate it just fine. The goal is to find the most tolerable dose and less can be more in this scenario. It’s far easier to dial up one’s dose over time than to start high, feel bad, and then have to dial the dose back, if that makes sense?
Yes, if you read Dr. Trentham’s article on the website (he ran the minocycline trials for RA), he says minocycline can be taken with any other available RA med, and the hope is to eventually be able to taper off the other med(s). AP is a very slow therapy, so this isn’t a quick process and it may take up to a year or more to really experience a sustained run of good days.
Clearly minocycline can provide adjunctive therapy for RA. In other words, minocycline can be combined with any other available agent. There are no exceptions! Examples include Plaquenil, methotrexate, Arava, anti-TNF compounds like Enbrel & Humira and the new intravenous drug, abetacept (Orencia). Decreased doses of one or both agents may help to avoid gastrointestinal side effects. This regimen usually reflects a desire to obtain additional improvement or to gradually convert to the safer drug, minocycline. Examples include 1. Not having to increase the dose of methotrexate and 2. By increasing the dose of minocycline additional improvement and /or stability may be gained. Perhaps use of two oral drugs might preclude the necessity for an injectable and more expensive drug. Obviously judging the net effect of either drug is difficult or impossible. The same impasse may arise if a clinical or laboratory side effect occurs.
You might also find it helpful to read the Pulsed Protocol Physician Packet under the Resources tab on site:
I saw in FAQs section countries where i can buy Mino, i am from Bulgaria. Today i will ask my doctor is it possible to find it here, if not, i will try to find it in Greece or Romania,but if it’s not a possible option, is it dangerous to use Doxycyclin? i know that ihe medication is in the protocol, i am just afraid from experiments and want to be sure what i am doing.
Yes, before minocycline was launched, Dr. Brown used doxycycline and, before that he used tetracycline (first generation tetra). Doxycycline was developed before minocycline, but like minocycline, is a second generation tetracycline and in the same class of antibiotics. Patient experience shared here has been that Minocycline seems to be more effective for RA in lower doses as it has superior tissue penetration (5 times greater lipid solubility, which means it can penetrate the outer lipid layer of cells more effectively).
I can’t find words to say how thankful i am for your help. Thank you. 🙏
So, if doxycyclin is the only option, the right dosage is 100 mg once a day three times a week or twice a day three times a week? What do you think as we have in mind the better effect of Minocyclin This is my last question i promise.
Hi kitty,
Please feel welcome to ask any questions you may have – it’s what this forum was set up for, so no problem or limit I’d imposed, and others are always welcome to chime in with their shared experience, too. In fact, to attract attention to your doxy question, you can start a new discussion to ask how others have fared with doxy. I never found it as effective as minocycline.
Yes, people generally use the same dosing protocol for doxy as for mino to start, but if response is poor, slowly titrating dose up is sometimes needed.
As mentioned in FAQs, if response is poor by around the 6 month mark (no change in labs or symptoms), it’s time to rethink the protocol. If doxy alone is not enough, for example, some docs will add a second complimentary antibiotic to the protocol in a pulsed fashion (e.g., in the macrolide class: clarithromycin or azithromycin. Of course, as long as no other meds interact. In Europe, roxithromycin is a good option and has been studied for RA). You can run searches online to find RA and roxithromycin studies.
You’ll find some of this research in the RA Research section on site:
Hello again. I met my family doctor and he gave me support. I will take doxycyclin 5 days and medrol – 1 tabl, 2 days i will rest and i will start the 3 days scheme with 1/2 medrol. I don’t know if sulfasalazin works for me but i will continue to take it. Before, my crp was 0.10 but i had a reason to stop it for 3 months may be 4 and now i feel bad and my crp is 1.24…my rheumatologist said sulfasalazin doesn’t work for me anymore but i’m not sure so i will take it.. I write this because it may be helpful for someone but we always have to talk with doctor before new treatment and we have to receive support. Thank you for your help again. I am very happy that i have hope for better life.
`Hi Kitty,
How great your GP will help you! I have heard that a clinic in U.K. uses the same protocol (100mg M-F with weekends off. Dr. Brown pulsed the tetras for RAers (as described in the Scammell book) in order to allow for periods of normal protein synthesis.
Do you have the lab reference range for your CRP? Does your doc also test SED rate? Just asking as your CRP seems very low – in normal range – as per the usual US lab reference ranges. Also, do you have any positive RA markers (e.g., RF, anti-CCP, ANA)? These can be helpful to monitor progress over time, too, and having baseline tests when starting AP is a good way to measure progress. Sometimes these labs worsen in the early months with herxing.
After the 5 day period i will continue the treatment the way it is described in the protocol. I don’t know is it the same in UK but i hope it works. Doc said won’t give more than 100mg once a day, i still think what is right. Anti CCP was 24.5 when i found that i have arthritis. Here the normal reference for crp is 5. Sed rate is ok, everything is ok-comete blood count and liver. I don’t know if that matters, i am 31 years old and i have arthitis since 2017 but i take sulfasalazin since 2018. I was 40-41 kg, now i am almost 50. I am sorry it is possible misunderstanding because i don’t speak english well.i feel bad if i don’t take methylprednisolone, i have temperature in one of the joints and everything hurts. When i use it hurts but not so much. I know the wheather is the reason but this time i am scared because of the temperature in the arm. If crp is more than this i can’t imagine the pain. I think that if we have more than 1 desease or moment infection crp could be higher.
Unfortunately, prednisone has the effect of causing weight gain. 👎 Have you had your thyroid checked? If you do, it’s worth noting that prednisone artificially suppresses (lowers TSH) thyroid labs for a couple weeks after stopping it.
Yes, CRP and SED rate are just measures of inflammation so can increase with acute infection, as well. It’s unusual to hurt so much with a lack of measureable inflammation. Do you have a history of infections? E.g., dental, UTIs, chest infections, Lyme disease, strep, etc. Figuring this out early on can help with individualizing protocol, especially helpful when one hits bumps in the road.
With AP, it’s a winding journey rather than a straight or swift path to the finish line. There are so many things an RAer can do to support the therapy and maintain overall health, though, so if you keep reading here, you will be an expert in no time, as well as finding what helps or doesn’t. Things like diet, supps, hormones, detoxing, etc. So hang in there, Kitty!
Your English is fantastic by the way! I always admire those who speak other languages.
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