First visit to Rheumatologist…easing off Prednisone?

[JoAnnC68]

At this time I am on 100 mg Minocycline 2 times a day Every day and 5 mg Prednisone every day. I take a handful of herbs and vitamins and lots of Probiotics every day, drink a lot of water, drink the Lemon-Olive Oil drink abt 3 time a week, soak in Epson Salt 2-3 times a week, do the coffee enema every now and then, etc….since I started on AP Aug. 31, 2012.

Results so far has been great!! No achy hands/fingers when I get up in the morning, strength in my hands are coming back, what swellings/flames/flare-ups I have only last for a little while then goes away, still have some sweatie/hot/cold feeling moments but that okay. The last few days and today, I have a heavy feeling in my right knee…I think this is herx, since my knee has never bothered me before.

I had a blood test done on the day I got the subscription for the mino, I started the mino that night…my doctor’s nurse called a week or so later to tell me that my RA factor had gone up and the dr wanted to see me. He wanted me to go to an Rheumatology to get help ASAP….

On Oct 30, I have an appointment with a Rheumatology. I almost hate to go since I’m doing so good!!!!
I really don’t want to get on any of the hard drug/medication for my RA, but I don’t want my RA getting out of control either.
My main concern at this time is to get off of

Diagnosed with RA Jan 2012
Oct 2015- RF has dropped to 19!!! Isn't that Great! ?! I'm feeling wonderful! I'm still taking Mino 2 x daily...if I don't forget!
Oct 2014 RF has dropped to 23.1!! Taking Mino 100mg 2 x daily. No Pains & doing great!!
Oct 2013-RF has dropped to 40.9!!! Feeling Wonderful!!
7-17-2013 I'm going Great!! Still taking mino 100mg twice daily. No pains or Complaints!
5-9-2013 RA Dr said I was doing good, I could stop taking prednisone since I dropped to 1/2 mg...so will

[Kathy1465]

I have not taken LDN, so I can’t offer any help there. I will say to please go slowly easing of the prednisone. I was feeling really good with the minocycline as well and got a little to ambitious trying to get off prednisone. Ultimately, I ended up in a flare and set myself back months trying to get to feeling well again. The last 5 mgs are the hardest to wean off of. I am down to 4 mgs currently and it has been a hard fought battle to get this far. I have done it by getting a script for 1mg tablets of prednisone and lowering my doseage only .5 mgs at a time. Then I wait until ALL the withdrawal symptoms pass before lowering it again. This can take upwards of three weeks to a month before I am able to lower it again. My doctors have always encouraged me to drop prednisone more aggressively – like one mg at a time, every two weeks. That is just how I got into a flare the first time. Now, I am much more cautious. Listen to your body and take your time. It can be a process for some of us. Wishing you all the best!

Kathy

[JoAnnC68]

Hi Kathy!

Thank you so much for your valuable information. As you suggested, I’m gonna take it nice and slow, I know we tend to get impatience sometimes, especially when we start to feeling so much better.
Is there anything that we need to be taken for our adrenal glands while easing off of Prednisone?
Kathy, are you taking anything else with the minocycline to ease your pains? I’m hoping I can get by without having to take anything. I had blood test done yesterday, I’ll find out in a couple of weeks what the Rheumatogist has in mind, and fingers cross that my RF has come down and everything else is good.
Thanks again, and I hope things goes smoothly for you too!!
Jo Ann

Diagnosed with RA Jan 2012
Oct 2015- RF has dropped to 19!!! Isn't that Great! ?! I'm feeling wonderful! I'm still taking Mino 2 x daily...if I don't forget!
Oct 2014 RF has dropped to 23.1!! Taking Mino 100mg 2 x daily. No Pains & doing great!!
Oct 2013-RF has dropped to 40.9!!! Feeling Wonderful!!
7-17-2013 I'm going Great!! Still taking mino 100mg twice daily. No pains or Complaints!
5-9-2013 RA Dr said I was doing good, I could stop taking prednisone since I dropped to 1/2 mg...so will

[lynnie_sydney]

Jo Ann – you may find this article helpful – link to it below:

http://fourfoldhealing.com/2007/11/08/getting-off-steroids/

Also, if you go to the front page of General Discussion (where all topics are listed) and then type in ‘weaning pred’ to the search box at the top, alot of past discussion on this subject will come up, including alot of helpful info from others who have successfully weaned themselves off it.

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)

[gratefulgirl]

Hi Joanne, Lynnie posted a terrific article there. I do know that because of the battle that ensues between the antigen release from angry bugs when Minocycline is doing its job and the subsequent battle our own body dishes out with our antibodies fighting the bugs, that inflammation and other herxing symptoms are typical.

So, what to do about that: it’s important to have something like a very low dose Pred. (below 5 mg from what I’ve read in these discussions & Dr. Browns wisdoms — please do a search here as Lynnie recommended for OK Prednisone doses while on AP) or a gut friendly NSAID such as Relafen/ Nabumetone in our systems while we take AP/ Minocycline. I’ve found 750 mg Relafen twice a day to be effective for me. Starting doses are 500 mgs.

So, not sure if one can go without those aids while on Minocycline. Please chime in all!!! I think they are necessary and what works for one will not work for another. It’s a matter of gaining as much knowledge as possible, as you’re doing Joanne, then seeing what works best for you!

Best of luck to you!!! GG

[gratefulgirl]

Oh, and as far as your question about LDN. It’s done wonders for me, and seeing that you’ve been on AP for about two months, that’s a good head start that is usually best prior to getting going with LDN. Please see my post, recently updated about LDN, if you’ve not already. From what I’ve read, it’s a mixed bag, it works for some & not for others so much. But what a wonderful thing when it does work. I’ve been on it for a month now and feel it’s been a great assist to my AP. I think the boost of endorphins from the LDN must be working for me. Hope that this is of help to you!

Hugs, GG

[JoAnnC68]

Thank you Lynnie for the link about getting off of Prednisone/Steroids, that was a very helpful article. I want to check-into the Drenamin and Adrenal Cortex Extract that was mentioned. I did a search here on RBF, but there wasn’t very much feedback on them. I notice that the Vitimins/Herbs market had different kinds of Adrenal supplement listed. Is there anyone using any of these, or find that a certain one helps more than the other?

GG, I’ve been following your postings on LDN…this sounds like something I want to discuss with my Dr. along with the Relafen/Nabumetone, thank you for the info. I’m so happy that LDN has worked great for you! We just don’t know if some medi is going to help or not until we try it and sometime we have to take it for a while for it to help.

I’m so happy that I found RBF like so many of you! Being on AP for the last two months has certainly being an answer to my prayers. I’ve still got a long way to go on this road but the future is looking better and brighter every day. I’ve been coming here on a daily basic, I’m still learning, I have found loads of helpful informations and some of the most wonderful people here.
I want to Shout….If you are new to AP and thinking about going this route…go for it, you will be glad you did!!
Thank You RBF and each one of you So Much!! 😉

Jo Ann

Diagnosed with RA Jan 2012
Oct 2015- RF has dropped to 19!!! Isn't that Great! ?! I'm feeling wonderful! I'm still taking Mino 2 x daily...if I don't forget!
Oct 2014 RF has dropped to 23.1!! Taking Mino 100mg 2 x daily. No Pains & doing great!!
Oct 2013-RF has dropped to 40.9!!! Feeling Wonderful!!
7-17-2013 I'm going Great!! Still taking mino 100mg twice daily. No pains or Complaints!
5-9-2013 RA Dr said I was doing good, I could stop taking prednisone since I dropped to 1/2 mg...so will

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