Advise, please

[niteowl]

Hi everyone,
Does anyone have any experience weaning off prednisone? I have resumed Minocycline50 mg every other day. I am tolerating it well. I feel better within the hour after ingesting it. I am having some issues with weaning off the steroid but really need to get off them as soon as possible. I have no healing or rather very slow healing ability. If anyone has any advice or experience with this I would like to know how you succeeded!

Diagnosed with RA in 2012
Fifth Disease in '03
Lyme? in 2000?
Had radioactive ablation of hyperactive thyroid in 1997
autoimmune thrombocytopenia resolved
Anemia resolved with treatment of RA with Minocycline
Blood type: B neg

Meds:
Minocycline 50mg once a week
Levothyroxine .88mg
Liothyronine 5mg
Methotrexate 20 mg once a week

Folic acid
B12
B6
Vit D
Biotin
Biosil
Cbd balm
Flexaril as needed
Aspirin
Benedryl
Ventolin inhaler
Lactibiane probiotic

[PhilC]

Hi,

How long have you been on methylprednisolone?

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[niteowl]

Hi Phil,
Two years this time.

Diagnosed with RA in 2012
Fifth Disease in '03
Lyme? in 2000?
Had radioactive ablation of hyperactive thyroid in 1997
autoimmune thrombocytopenia resolved
Anemia resolved with treatment of RA with Minocycline
Blood type: B neg

Meds:
Minocycline 50mg once a week
Levothyroxine .88mg
Liothyronine 5mg
Methotrexate 20 mg once a week

Folic acid
B12
B6
Vit D
Biotin
Biosil
Cbd balm
Flexaril as needed
Aspirin
Benedryl
Ventolin inhaler
Lactibiane probiotic

[aboyer]

Why did you quit the doxycycline? Is the Minocycline helping your inflammation? As far as a weaning off Prednisone have you tried lowering your dose to 5mg

Diagnosed with severe RA 12 years ago
Tested positive for M. pneumoniae and C. pneumoniae

Current meds: Kineret 100mg, doxycycline 50mg, cbd oil, and celebrex

Supplements: fish oil, vitamin b12, folate, b6, iron, selenium, zinc, vitamin c, and biotin

[niteowl]

Hi Aboyer,
I am down to 6mg, now. Doxycycline caused me to have a severe reaction although it also could have been from the Mino from 2012 – 2017. Symptoms included: generalized rash on arms am torso, pitting edema in lower extremities, terrible muscle aches, difficulty bearing weight due to sharp pain in knees upon standing, shortness of breath without exertion and no relief from inhaler, just generalized pain and swelling in every joint. I had been told to increase my mino dose to twice a day every day, by my now retired from AP protocol Dr. I was taking Teva brand Minocycline.

Diagnosed with RA in 2012
Fifth Disease in '03
Lyme? in 2000?
Had radioactive ablation of hyperactive thyroid in 1997
autoimmune thrombocytopenia resolved
Anemia resolved with treatment of RA with Minocycline
Blood type: B neg

Meds:
Minocycline 50mg once a week
Levothyroxine .88mg
Liothyronine 5mg
Methotrexate 20 mg once a week

Folic acid
B12
B6
Vit D
Biotin
Biosil
Cbd balm
Flexaril as needed
Aspirin
Benedryl
Ventolin inhaler
Lactibiane probiotic

[Spiffy1]

Did your pitting edema ever get better ?

Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes, etc.
RA Factor 71 in Jan 2015 down to 25 as of September 2017
DR4/DQ8 HLA...biotoxin illness
IGG food allergy to wheat, egg, and dairy...probably all grains
Vit. C&D, probiotics, milk thistle, turmeric, fish oil, methyl b 12, methyl folate, digestive enzymes, Candisol, Ubiquinol, berberine, chlorella, Moducare, LDN, monolaurin, Triphala, Patriot Greens, Paractin
MTHFR compound heterozygous
Igenex IGM positive Lyme, minoMWF

[PhilC]

niteowl wrote:

Two years this time.

There’s no way to get off of methylprednisolone quickly if you’ve been on it that long. In the past, people who’ve been on prednisone or another corticosteroid for a long time found that the key to getting off of it successfully was to go slowly, and that weaning off of the last 5 mg of prednisone (equivalent to 4 mg of methylprednisolone) was the most difficult.

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[lynnie_sydney]

If you type in something like ‘weaning off pred’ into the search box alot of posts re this will come up, some of them from people who have successfully done this. It seems that a stepped aporoach to the last 5mg has worked well for some. Probably because it takes a while for the adrenals to wake up and for the body to go back to producing its own.

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)

[niteowl]

Hi Spiffy1 – yes, the edema went away within 2 days of starting the methylprednisolone.
Thanks, Phil and Lynnie. I have done alot of searches on tapering off. I was just wondering if anyone here had experience with it. I will have to tuff it out as I am no longer healing. My blood sugar was within normal range but my body is healing like a diabetic, sigh.

Diagnosed with RA in 2012
Fifth Disease in '03
Lyme? in 2000?
Had radioactive ablation of hyperactive thyroid in 1997
autoimmune thrombocytopenia resolved
Anemia resolved with treatment of RA with Minocycline
Blood type: B neg

Meds:
Minocycline 50mg once a week
Levothyroxine .88mg
Liothyronine 5mg
Methotrexate 20 mg once a week

Folic acid
B12
B6
Vit D
Biotin
Biosil
Cbd balm
Flexaril as needed
Aspirin
Benedryl
Ventolin inhaler
Lactibiane probiotic

[Lynne G.SD]

Hi Niteowl;
It took me about 6 months to finally get off pred.Went from 5mg to four for a few weeks then 3 etc By the time I got to 1mg and not feeling any worse I dropped it in a couple weeks.Doc put the fear of God into me as pred is well known to cause kidney failure in those who have SD.I also have Lyme,it is immune suppressing and adding pred just made a great big party for the bugs.One doc told me to use the pred,the other scared the crap out of me.Wish I had known about all ths before ever starting it.

[niteowl]

Thanks, Lynne G.SD!
That gives me a better idea of a timeline.

Diagnosed with RA in 2012
Fifth Disease in '03
Lyme? in 2000?
Had radioactive ablation of hyperactive thyroid in 1997
autoimmune thrombocytopenia resolved
Anemia resolved with treatment of RA with Minocycline
Blood type: B neg

Meds:
Minocycline 50mg once a week
Levothyroxine .88mg
Liothyronine 5mg
Methotrexate 20 mg once a week

Folic acid
B12
B6
Vit D
Biotin
Biosil
Cbd balm
Flexaril as needed
Aspirin
Benedryl
Ventolin inhaler
Lactibiane probiotic

[Linda L]

When I was being poisoned with Methotraxate and Prednisolone for many years and the healing of a small scratch was slow the only thing which was helping me immediately were probiotics.

RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
AP from April 2014 till August 2015. No luck.
Current medications: Natural thyroid, Mobic, supplements,
vitamins and minerals.
MTHFR heterozygous

[rawarrior]

Hi Niteowl,

I was on 5mg of prednisone (Rayos) for 3yrs so I had to ween off very very slowly. Took me 8 months to ween completely and have been officially off prednisone since last Oct. or Nov. My Dr had me reduce the amount of prednisone by 1mg every month. If reducing it by 1mg was ever too much I would have to go back up 1mg for a month and then the next month reduce it by only .5mg and stay on that amount for a month before trying to reduce it by 1mg for a month again. Once I got down to a daily dose of only 1mg for a month successfully the last month I was reduced to .5mg and stayed there for a month and then I was done. I was very determined to ween off the prednisone so there may have been times that I pushed through when maybe I shouldn’t have. For me, dealing with RA, Hashimoto’s, Lyme, etc… it is very hard to tell where my symptoms are coming from so there may have been times that I thought my thyroid was causing extreme fatigue when it was actually my adrenals suffering? I’m not really sure. My Dr said it can take a year for your adrenals to recover completely so I’m still in the recovery phase. That being said I am currently dealing with a setback that I can’t seem to shake and wonder if maybe I should’ve stayed on the prednisone a little longer since I was doing so well while I was taking it. I had to break down and take a medrol dose pack a few weeks ago but of course that was just temporary relief. My RA is affecting my hands and feet terribly and doesn’t seem to be easing up. I have currently increased my mino dose to 100mg 2x a day so hopefully I will start feeling a difference soon. My Dr only wants me to change one thing at a time so that we can really tell what works. If this doesn’t help I will for sure be back here screaming for help, lol! I can’t really give advice, but can share my experience and hope you can get something out of it.

Diagnosed with:
- Hypothyroidism in 2001
- Hashimoto’s in 2011
- RA in 2013
- Adrenal Fatigue 2015
- Secondary Raynaud’s & Sjogern’s
Lab results show past Mycoplasma, Lyme, EBV, Coxsackie infections. Also have 2 heterozygous MTHFR gene mutations
Current Medication:
- NP Thyroid 120mg/day
- Sulfasalazine - 2000mg/day for last 3yrs
- Minocycline - 100mg 2x a day
- magnesium - 500mg in evenings
- probiotics - taken daily (amount varies)
- Ibuprofen - 800mg as needed
- Celebrex - 200mg (

[niteowl]

Linda L and RA Warrior,
Thank you for sharing your experiences. I’m starting to think prednisone has very long lasting effects. Even longer than a year.

Diagnosed with RA in 2012
Fifth Disease in '03
Lyme? in 2000?
Had radioactive ablation of hyperactive thyroid in 1997
autoimmune thrombocytopenia resolved
Anemia resolved with treatment of RA with Minocycline
Blood type: B neg

Meds:
Minocycline 50mg once a week
Levothyroxine .88mg
Liothyronine 5mg
Methotrexate 20 mg once a week

Folic acid
B12
B6
Vit D
Biotin
Biosil
Cbd balm
Flexaril as needed
Aspirin
Benedryl
Ventolin inhaler
Lactibiane probiotic

[Author]

Posts