Trying to say goodbye to prednisone – looking for some input

[raoptimist]

I haven't checked-in for a while since I thought I had really turned the corner on my RA.

Quick history:
– quit Enbrel and meth on 1/1/2010
– started on minocycline and LDN on 1/1/2010
– herxed like crazy, but fought through it
– in May I started feeling semi normal again with much less pain and fatigue — even started exercising again!

I went from 10-15 mg of pred per day down to 0 mg over two months.  I hate the way it makes me feel and look (puffy face, etc.)  Also, my Dr. really wanted me to get off the pred as soon as possible.  She was worried about organ damage.

I've tried to fight offf the inflammation and pain with Advil — about 750 mg three time a day.  This is only working marginally.  I'm mobile, but my ankles are killing me.  In short, I've regressed.

I take 200 mg of minocycline M W F.  Do I need to increase this?  Should I go for an IV treatment?

Should I take other anti-inflammatories that are stronger NSAIDs?

I really feel like I've made great progress and am close to kicking my RA.  Any help would be greatly appreciated — thanks!

-Kevin

[mschmidt]

Kevin,

Congratulations on getting off Enbrel, Methotrexate, AND prednisone!! That's an amazing accomplishment:roll-laugh:  I'm sorry that you are still experiencing inflammation and pain.  I have SD, not RA but, what struck me the most about what you've posted is that you are taking 200 mg 3x/week for RA.  Based on what I've read about others' experiences on this site with AP, particularly the RA folks, sometimes a smaller, pulsed dose is better than a higher dose of abx.  Inflammation tends to block the effectiveness of the abx reaching its' intended target so, getting the inflammation levels down is important.  I'm not suggesting any particular dosage, as I'm not a doctor but, I think some RA folks will chime in here with their personal experiences.  I take 200 mg bid, and have since 2008 without any problems but, most SD folks aren't as hyper-sensitive to Minocin as RA folks.  You're taking a hefty dose of anti-inflammatories, which seems to be helping, although not enough.  I'm not sure that increasing that dosage is in your best interest, as the side effects may outweigh the benefits.  Of course, you should discuss this with your doctor.  Have you tried MSM or other alternatives? 

Maria

[raoptimist]

I've read that higher doses of minocin are preferred as long as you don't herx.  Also, the minocin stays active in the body for about 48 hours, according to the literature.  This may not be the same for everyone, however.

So, you're taking 200 mg total each day, but spread out between AM and PM?

Anyone out there with RA following 100 BID as opposed to 200 mg MWF?

[judy cash]

Kevin,

I'll just give you my experience….not meaning to go against what Maria has said.         I went to see Dr. S. in Iowa and had the IV'S, which I think is a great boost to the AP, then I was sent home with a script for minocycline, 100 mg. twice a day everyday. I continue at that dose, and have done very well. I did get started on AP very soon after I received my diag. for RA, maybe that has made a difference,I'm not sure, but the higher dose has worked for me. I really believe the IV'S are worth it also, if you can get them. Hope this helps…….

Judy

P.S. I did herx like crazy in the beginning……

[raoptimist]

Thanks for the input, Judy.  I've had this suspician that my minocin dosage is too small.  It's only a feeling, however.

Could you send me the name/number of the Doctor in Iowa?  My email is kevin@symform.com.

[Parisa]

Hi Kevin,

How long were you on the prednisone?  It's possible you weaned too quickly.  You may need to add some prednisone back in (sorry!) and then slowly wean down a milligram at a time until you hit 5 mg and then from there about 1/2 a milligram at a time.  You can also get the body used to not having prednisone by taking your dose every other day.  So if you normally take 10 mg a day, you take 20 mg every other day.  It gives you a prednisone free day and helps wake up the adrenals again.  Getting off prednisone can be very delicate.  Unless you do it slowly you'll end up truly miserable and oftentimes back on it but at a higher dose.  Taking it slow while frustrating will eventually get you were you want to be.

[raoptimist]

Yes, I think you're right.  Thanks!

[linda]

Ditto what Parisa said, with the dose you were on 2 months is awfully fast. In the past 6 yrs I have been up and down on my prednisone dose, and have tried to get off of it permanently 3 times. Each time I had a rebound flare from weaning too quickly. Last Sept I was on 15mg, I'm now on 3mg but I have taken it very slowly this time and so far no rebound flare. I know it's hard to go that slowly, but it's the best way to do it if you want to get off of it permanently. Also, during your first year of AP you will have herxes, and they will be worse if you are decreasing the prednisone too quickly, and if you have a rebound flare the antibiotic won't work as well because there will be more inflammation around the affected joints for it to get thru. Slow and steady wins the race. As some here know, patience is not one of my virtues, as one of my favorite quotes is, “Grant me patience Lord, but hurry!” You're not alone, there are many of us who have fought this battle with prednisone, it's tough but you can win it.

One more thing, often people have better success with using the alternate day approach. for example, 10 mg Mon, 9 mg Tues; do this for 2 wks. Then for the following 2 weeks, do 9 mgs everyday. Once you've done that for 2 wks and are not flaring, go to 9 mgs Mon, 8 mgs Tues, for 2 wks, then do 8 mgs everyday for 2 wks. Continue until you get down to 4 or 5 mgs a day, at which point you may have to start reducing your dose by 1/2 mg instead of 1 full mg, or you may have to stay at 5 mgs for longer than 2 wks before you decrease it again. It becomes more difficult at this dose because our adrenal glands normally make cortisol equal to 5 mgs of prednisone a day, but they have not had to do that while you were taking more than that. They start coming back online when you get down below 5 mgs, but because they have not been active for so long they have atrophied and it will take them a while to get back to full function again. Just like a muscle that has been unused for a while, it takes time for it to get as strong as it used to be, and if you try to do too much to fast you can strain it.

Good luck with whatever you decide to do.

[Parisa]

Linda,

It's great to hear that you are down to 3 mg! 

Kevin,

My husband desperately wanted off prednisone and two times when he was somewhat stabilized he tried to come off too fast.  He couldn't believe that he couldn't overcome his body's dependency with willpower alone.  The subsequent flares and then the reluctant return to an even higher dose were devastating to him.  The third time he tried he was truly in a good place and he took it slooooowly. 

[linda]

Thx Parisa,

It has been a long road for sure, and as far as the PA is concerned I'm not doing well. But I'm no longer diabetic and my blood pressure is normal again, so I do consider it a victory. Unfortunately I have not had as much success with losing the weight I gained while I was on pred. I finally gave in 2 wks ago and ordered nutrisystem, I started last week but have not lost anything yet. I know everybody says you regain the weight when you stop the nutrisystem, but this diet offers much more variety than I can on my own, I don't cook much, and their food really is good (they're actually telling the truth!). In addition, you get 30 days worth of food delivered to your door, and since shopping has become extremely difficult for me, this is a God send. So I can't see myself quitting this even after I've lost the weight, it solves more problems for me than just weight loss.

But back to Kevin, weight gain is just another reason to get off the pred permanently, and initially I did lose about 15 lbs before it leveled off. You're doing the right thing, you just need to go slower.

[JBJBJB]

I hate prednison, I got off pred after few months on minocyclin. I was also on plaquenil 400 mg per day. It worked out very well. I got off that after I got off pred. Then I was totally “naked” without any anti-inflammatory med covered for over a year. I learned pain management and it has not worked. My X-ray showed my left fingers have some bone loss (erosion).

Now I take Aleve if I need it. In average I take 2 or 3 Aleve each 7 days, each time I take 1. It works out for me with low dosage Aleve.

I also bought MSM, it has not been working. I take 4,000 mg each day.

Hope you will find a way to control your inflammation. JB

[Kim]

Hi Linda,

Nice to hear from you and see that you've made some progress with all you have going on.  Great job on the Pred, blood pressure, and diabetes! 😉  Good luck on the N.S. diet ~ we'll look forward to your bikini shot. 🙂

Take care…..kim

[raoptimist]

Yes, going cold turkey from the Prednisone was a rookie mistake, I think.  I've fought this pain for two weeks now and its excrutiating.  I finally decided to go back to 5 mg per day to see if that stablizes the situation.  I'll pulse and taper from there.

It's interesting to me how sensitive one becomes to the body's ups and downs.  I didn't know that Pred causes weight gain, but it now makes sense to me.  I've gained about 10 extra pounds even though I haven't changed my diet.  In fact, exercising again should have burned more calories. Crazy.

Thanks to everyone who contributes their experiences and insights here.  I love this forum.

-Kevin

[linda]

Ohhhhh Kim, you are sooo funny! NO BIKINI SHOTS! But srsly, even tho the PA is pretty bad, it is so good to be down to this dose, and to have the great support from my doctor. I know how Kevin feels and why he increased his pred dose again, but for me it just is not an option anymore. It was too difficult try to treat 3-4 chronic illness at once, both mentally and financially, and I know that if I increase the pred again all I have to look forward to is weight gain, diabetes and hypertension. I am fairly miserable now, but not nearly as bad as I was when I had all of those conditions. But on a happier note, after 9 days on NS I have finally lost a few lbs. I hopeful that some of my back pain will decrease if I lose this weight.

But to catch up, a lot has been going on, mostly with my kids. My middle son is back in college (BIG:roll-laugh:), my oldest got a substantial raise but is still looking for a job in his degree field, he came out for Jared's grad and stayed a week, and my youngest, my fellow mathgeek, graduated from UT in May. His girlfriend is working on her masters in biochem and has been doing an internship in Sweden this summer, so for Jared's grad gift we sent him there for a few weeks. JB, you'll like this, he'll be back in a few days, but in a few weeks he'll start back to school at the Univ. of Northern TX located in Denton, where he was awarded a 4 yr fellowship in their Math PhD program! He'll also be working as a TA for 2 classes. I'm so proud of him! And very happy that he did not decide to go and do his post grad work on the east coast!!!:roll-laugh:

I should try to hang around more, I feel like I don't have much to contribute except for those in the pred wars. I've been selling AP with my facebook fibro group, may of whom have autoimmune diseases as well. We're a crazy group, the women who started our group did so because they got kicked out of another FM group for bringing up non FM topics and laughing too much. I had no part in that…well, maybe a little part, hard to believe, I know. Our group discusses FM but also things that are going on in our lives; problem with kids, vacations, good/bad doctors, etc. We have members from Oz, England, France, Egypt and Canada. And one lone man! They are good people like those here. I'll try to check in more often, if only to harass Kim!;)

[Kim]

Congratulations, Linda, on turning out some fantastic kids.  You are one proud mama, as you should be! 🙂

I love that you still have your sense of humor. :blush:

Take care……..kim

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