Is it realistic to only be on antibiotics?

[tbird2340]

I've been wondering this.. I'm been here for about a month, reading up a lot.. I've read many a member's signatures, posts, etc..

It seems like almost everyone is also on other prescription drugs in addition to the AP abx they are taking..

I am currently just taking naproxen as needed. Was dx'd about 3/4 months ago and immediately put on sulfasalazine coupled with naproxen.. After my 30 days on that I tested high for liver enzymes and was taken off it. He wanted to put me on mtx but my wife and I are trying to conceive so he wanted to put me on something else..

Anywho, long story short.. I'm not taking what he told me to take and I'm going to my first AP doc appt in 11 days. All along in my head I've been telling myself that I'm not going to take the toxic drugs.. Am I fooling myelf? I see most are taking other drugs (not saying you shouldn't be, just saying)..

Also, I don't know which drugs are bad and which are REAL bad (well I think MTX is REAL bad) so I may just be paranoid..

Any advice / replies would be great.

Thanks! 🙂

[katieb]

Hi tbird,

I can only tell you my own experience.

I have been on mino 5 months now, (I started it very early in my illness) and adjusted the dose from time to time, had some horrible herxing, and had to make the very difficult decision not to go on Methotrexate.

I switched from ibuprofen to a stronger nsaid, but with the help of people on this board, and a lot of prayers, I really feel now as though I am getting better.

This was verified by a blood test last week showing a good reduction in my CRP.

So now I feel so happy that I resisted the toxic drugs, and that it is definitely realistic to believe you can get better with just AP, and some painkillers. I think a bit of diet modification can help too, and a few supplements.

No you are not fooling yourself – grit your teeth and go for it !

Good luck !!  Katie

[lynnie_sydney]

tbird – many (in fact most) people who post alot on this board are new. Which makes sense, because it's new people who require the most help and support. However, that tends to give a slightly skewed view of an AP regime. Many newish people are weaning off more heavy hitting drugs that are giving them problems or that they (like you) have decided they dont want to take or be on forever. Others are taking something for pain relief while they are managing the worst of the herxing or trying to get inflammation down. Abx penetrate better when inflammation is reduced. For my own part, I took just mino orally by itself for 5 years with great results. I am only now triallng a combination low-dose abx protocol because my AP doc suspects additional pathogens (chronic Lyme). Good luck with your upcoming appt, my guess is that you'll do just fine on AP, particularly as you are dealing with it so early after diagnosis. 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)

[stwig]

Hi tbird,
I have been on minocycline for 10 months now. During the first month I was also taking prednisone and nsaid. I no longer take the prednisone, and find myself taking less and less of the nsaid. It has been a slow progress, but I'm definately making progress !

Methotrexate is toxic swill and should not be given to humans. I worked for a biotech company that did research with it in the 80's. I quit the job because I could not justify all the animal suffering in the “name of scientific research”. It caused tumors and horrible unspeakable things to the animals.

When my rheumatologist told me that methotrexate was my first option, I just about fell out of my chair with disgust. I could not believe they wanted to poison me in order get rid of my illness.

I'm glad that I found AP and stuck to my guns about getting the prescription for it.
Starla

[Kim]

I did quite well on abx only.

[marg]

Hi TBird,

When my daughter was diagnosed with sudden,very severe RA she was put on MTX for 3 months. It did help the inflammation, also her hair started to fall out. At her own request she was put on Minocin and her rheumy did not allow her to take MTX or taper down at the same time.

My daughter did very well, quite quickly, taking only over the counter n-saids for the first while. Then she took Minocin only. Two and a half years later she takes the Minocin and a good probiotic and she is symptom free.

[MaryP]

I'm a minocin and clindamycin girl. once in a while, a naproxen.

[tbird2340]

Thanks for all the replies everyone! 😀 I REALLY do appreciate it and I think it's REALLY great how everyone shares.. It's very important and encouraging!

Hugs to everyone!

[awesomemb]

🙂 I have had Scleroderma 23 years. I am doing well on Mino. I only take mobic for arthritic pain and then xanax to help me relax at night because of all my calcium deposits. The mino seems to have helped w/ reflux, digestion, pain and I have more energy. I don't like taking a lot of pills. Regards, MB

[JBJBJB]

I've been on AP since April. My AP doctor told me not to take off plaquenil right away until I saw good numbers of my blood work. I have bad lung problems which is a main concern. After 3 months on AP I completely weaned off plaquenil.

Now I am totally “naked”, only take 200 mg minocyclin daily. I have some good days and few bad days. I take pain killer once in a while when it is unbearable.

Recently I can hardly move my shoulder joints. I have a hard time to put my clothes on. My fingers and hands are swelling again. I don't know what's been going on.

Today I started my first 10 IVs at home with the help of home care from the local hospital. I hope this will help to get rid of the pain and swelling I have.

JB

 

[A Friend]

Hello Tbird,

For the first 7 years on AP, as far as meds, I only took Minocin twice daily on MWF.  After the first 4 or 5 months, I rarely even had to take an ibuprofen.  No other prescription drugs.  However, I had been carefully watching my diet, rarely eating any sweets, and I did walk regularly. 

A few problems were accidentally discovered on scans, but on repeat scans about 6 months later, improved homeostasis was found — so the problems were iimproving during the several years I'd been on AP. 

So, this may not be true for everyone, for that period of time, it was true that I took no other meds, but did have Cleocin or Clindamycin IVs every 6 months. 

(It was my belief that several years before I was diagnosed with RA or MCTD, that two years of constant medication had actually caused much harm, and I believe perhaps even caused me to develop the rheumatic diagnoses because of the resulting gastro problems.)

Good luck to you,

AF

 

[Patti D]

Hey Tbird,
I too have been only on minocycline for just about 1 year. I am much better but not yet 100%. Only by the grace of God did my xrays come back normal, so you see my little dose of mino has worked just great. I never took the heavy hitters like methotrexate. I still take aleve every day, but am down to 1 per day unless it rains or we have a drastic change in weather . Then I am consistently achy, and tend to complain quite a bit!!! I am pretty non-compliant as well on any supplements. I am just not a pill popper.

I would much rather have a glass of wine!!!!

Have faith. This really does work. Sending well wishes your way!

Patti

[Parisa]

My husband was started on high dose prednisone before we became educated enough to know what was going on.  He found an AP doc but because of his lung issues the doctor wanted him to do a course of Cytoxan.  That was a big mistake.  I believe it cost us time and health.  Thankfully, a year into this disease we found out my husband had Lyme disease with coinfections.  It has taken us nearly another two years to reverse the immune suppression damage caused by the first year of treatment. 

So my advice is to stay away from the immune suppressing drugs, take the antibiotics and look into other therapies to control the inflammation and pain.  Do treat the pain and any sleep issues you might have.  The body simply cannot heal if you don't sleep or are in too much pain.

My husband had to take Vicodin and sleeping pills off and on for about a year or so.  He hasn't had to take either for about 5 months now.  He didn't like taking them but at the time it was necessary.

Keep researching and asking questions!

p.s.  Regarding the liver enzymes.  My husband's liver enzymes have been borderline high since he first got sick.  They finally bounced back in the normal range while he was treating with IV Rocephin, IV flagyl, malarone, plaquenil, ursodiol, etc.  You would have thought all of those drugs would have made him worse but I think they cleared infection possibly in the liver thereby lowering his enzymes.

[Rockin Annie]

Hi tbird,

You have had a lot of great advice and would also like to add my 2 cents worth. When I was DX I knew a fellow dancer that also had RA for 20 years, she told me she took a miracle drug which just happened to be Mtx, she had no problem with it, no deformities, and still worked as a truck driver doing heavy lifting.  When my Rheumy suggested Mtx to me I didn't hesitate ( he was the professional). To cut a long storey short, it didn't work, so he just kept adding more and more meds, so in the end I ended up in hospital with a very bad infection and had to have a lung precedure which scared me very much.  I decided then to educate myself and look for an alternative instead of going on to another biologic.  I have been experimenting with conventional meds for 5 years and still no relief and damage was progressing at a fast rate.

I am now weaning off meds very slowly which I have been on for years, and probably take years to undo what they have done, and still finding out how deadly they are. You have been Dx early and know about AP and this board with so many friends to help you, which is a huge bonus, I think you will find you will do great on AP and just wish if I had only known about it before taking all these other meds I would have saved myself so much misery and pain. At least now I have something to look forward to, that is getting well, before it was, how long will it be before I can't do anything for myself and was seriously contemplating taking one big pill to end it all.

Hope you appointment goes well and good luck, I will be thinking about you…………..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.

[etheredgec]

Hi RockinAnnie,

I'm new to everything – using antibiotics for my RA, using this bulletin board – everything, and feeling quite overwhelmed by it all. 

My rheumatologist has had me on Prednisone and Methotrexate.  I told him I wanted off the drugs asap and, to his credit, he has told me to wean off Pred, which I've done, but increased the Methotrexate.  I want to start of AP, but need to find a doctor who will administer it.  I live in Coffs Harbour, NSW.  I want to find out if I need to get off the Methotrexate before beginning AP.  Any ideas?

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