Steriods…how did any of you come off, safely?

[2011Rio]

I’m on 20mg of pred. rt now and I want to start coming off. I just wondered how any of you went about coming off the steriods. I do have a dr. and will be working with him on it, too.
Thanks

Diagnosed w/RA 2011
Diagnosed w/Lyme, Ehrlichia, babesia, bartonella, ebv Feb 2016
metronidazole 500mg 1tab,3x a day M-F:
doxicycline 100mg 1tab 2x a day; Alliultra 360mg 2x a day;
Larrea; burbur; GSF 400mg 1tab 2x a day ; multi vit; b12 lozenge;
vit c 2000mg daily; Actemra 10/2015-present (may come off since
lyme diagnoses) Plaquenil 200mg 2x a day; Prednisone 4.5mg
(weaning off); Baclofen 10mg bedtime; Bentyl 10mg as needed;
fexodinadine 180mg daily; armour thyroid 45mg daily; omeprazole 40mg d

[lynnie_sydney]

Hi 2011Rio
If you use the search box at the top of the front page to General Discussion arrea (where all topics are listed) and type in “weaning pred” there will be alot of useful past discussion on this subject, including ways that people have managed this very difficult task – the last 5mg being the most difficult.

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)

[Patricia.Ann]

Hi 2011Rio 🙂

I have been on steroids for approximately two years and have slowly been weaning myself off them for about the last year and a half. At the beginning I was on 30mg and I am now on 10mg/7-5mg alternate days.

I have been doing this under the guidance of my rheumatologist. It isn’t easy but with patience and the love and understanding of those around us it is very possible. Of course, only we know, with our Doc, how we react as we wean.

What I have found is that every time I lower my dose I feel quite unwell, as though going into a bigger flare, more emotional and more fatigued. I find for me this last a good couple of weeks perhaps a little more before it settles and I then come back to the stage of flare I was at before, if that makes sense. Steroids have never taken all my pain and swelling away even at the highest doses. I have been very grateful for them though because they enabled me to get out of bed and walk!!!

My rheumy has always recommended me go down in 2.5mg increments on alternate days. For some this is too great a drop and a times I have thought it has been for me too but overall I have managed very well with it. The length of time I stay at any particular dose depends on how I feel. This recent decrease at 10mg/7.5 I have been doing for about two months. I will very shortly go to 10mg/7.5mg/7.5mg/10mg/7.5mg/7.5mg etc for at least a month perhaps two then go down to 7.5 everyday. It is really important not to rush it because it can have serious health risks 🙁

I know our instinct is to get off the pred as soon as we possibly can but we must proceed with caution. It will feel good when we no longer have to take it 😉 I am looking forward to a bit less weight and most of all a thinner face. To have my face back to normal will just be fab.

Hope this has helped.

Take great care.

Patricia x

[2011Rio]

Lynnie,
Thanks for the input. I did try to look this up, but I was using the word steroid vs pred. Maybe I will get more results that way.

Patricia,

That info. is very helpful, thanks for replying! I know what you mean about the thinner face, I too look forward to that! I definitely will take it very slow.

Thank you,
Tricia

Diagnosed w/RA 2011
Diagnosed w/Lyme, Ehrlichia, babesia, bartonella, ebv Feb 2016
metronidazole 500mg 1tab,3x a day M-F:
doxicycline 100mg 1tab 2x a day; Alliultra 360mg 2x a day;
Larrea; burbur; GSF 400mg 1tab 2x a day ; multi vit; b12 lozenge;
vit c 2000mg daily; Actemra 10/2015-present (may come off since
lyme diagnoses) Plaquenil 200mg 2x a day; Prednisone 4.5mg
(weaning off); Baclofen 10mg bedtime; Bentyl 10mg as needed;
fexodinadine 180mg daily; armour thyroid 45mg daily; omeprazole 40mg d

[lynnie_sydney]

Thanks for the input. I did try to look this up, but I was using the word steroid vs pred. Maybe I will get more results that way.

You definitely will – the last time I searched under ‘weaning pred’ a whole host of posts came up.

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)

[Valsmum]

Hi Patricia Ann and Rio,

I am coming off of prednisone too. My rheumy told me to go down 1 mg a month. So instead of the jump from 10 and 7.5 I just go between 10 and 9 for a month then 9-8 and for the next month month. It really depends on symptoms in my opinion. I am trying to get to 6mg this month. I have been trying really hard to wean 1mg a month and I am around 7mg but my knee swelled up so much 2 days ago I could not bend it & I had to go to 8mg for two days. My knee is back to normal now, so I will be back at 7 mg and hoping that the 6mg will not be too hard. Hope your weaning is successful, take care. -Sheri

[Patricia.Ann]

Hi Sheri,

How lovely to ‘meet’ you. I wish you well in your journey to reduce the prednisolone.

When we first start taking it we are so poorly the side effects don’t even come into our mind! Our symptoms are so great we just need a little relief. It feels good to be able to start reducing though doesn’t it? I am not sure if I will be able to get off them completely because I still have so much pain and swelling but would like to keep them to the minimum possible.

It would be soooo good not to be on prednisolone any longer than we have to be. Sending warm thoughts your way.

Patricia x

[mymissmary]

Congratulations on wanting/being able to wean off of prednisone. I have a love/hate relationship with that stuff for all the reasons everyone mentioned. I had to get off it quickly because the insomnia and depression were ruining me. I would take anywhere from 5mg.-30mg. from 2 days to months, on and off for the past couple years. I weaned off a few months ago. I think that one of the reasons my side effects were so terrible was because I was taking it on and off, so a proper wean is essential – especially if taken longer than 2 weeks! I recommend the 2.5mg route. I cut my dosage in half every week – 30mg., then 15mg, then 7.5mg, then 5, then 2.5, then 2.5 every other day, then none. I had terrible headaches, coffee helped! My doctor then put me on Cortef (hydrocortisone) 5mg. daily since my adrenals were asleep after all this and I had horrible fatigue. They also put me on a supplement called Adreset. I seem to be doing great now – sleeping normal hours, stable mood and energy. Every couple months I have to take 10mg. prednisone for 2 days to get over a flare, but now we are just injected the flared joints since I don’t want to use the prednisone anymore. So, I would suggest just decreasing it by 5mg. a week until you are down to 10mg, then decrease by 2.5mg from there, switching to 2.5mg. every other day your last week. Hope this helps! And again, congratulations!! 🙂

Mary

Rheumatoid Arthritis – 15 years (since age 12). Newly diagnosed Mycoplasma Infection – Minocyline 100mg. 3xday MWF (Aug. ’11)

[2011Rio]

Hi sheri, Nice to meet you 🙂 Thank you for your input. I know I have to take it slow, wish not though. So, exactly how do you divide up your dose during a week then? would that be taking 10mg one day and 9mg the next, then back to 10 and the 9 for two days, then 10 the next and then finally 9 for good? Well, so far i have decreased by .5mg going on my 4th day and doing ok. Thanks for the help you guys! :):) Hope you all are making progress.

Tricia

Diagnosed w/RA 2011
Diagnosed w/Lyme, Ehrlichia, babesia, bartonella, ebv Feb 2016
metronidazole 500mg 1tab,3x a day M-F:
doxicycline 100mg 1tab 2x a day; Alliultra 360mg 2x a day;
Larrea; burbur; GSF 400mg 1tab 2x a day ; multi vit; b12 lozenge;
vit c 2000mg daily; Actemra 10/2015-present (may come off since
lyme diagnoses) Plaquenil 200mg 2x a day; Prednisone 4.5mg
(weaning off); Baclofen 10mg bedtime; Bentyl 10mg as needed;
fexodinadine 180mg daily; armour thyroid 45mg daily; omeprazole 40mg d

[Valsmum]

Hi Rio,
Nice to meet you too. My freind that weaned off prednisone successfully used the following taper for a month:
DAY
1-3mg
2-4mg
3-4mg
4-3mg
5-4mg
6-4mg
7-3mg
8-4mg
9-3mg
10-4mg
11-3mg
12-3mg
13-4mg
14-3mg
15-3mg
16-4mg
17-3mg
18-3mg
19-4mg
20-3mg
21-3mg
22-3mg
Stay at 3mg for a week or so then try to wean to 2mg with the same pattern.

I am just passing on what worked for my friend so hopefully it will work for us too. In my expereince, alternating days doesn’t shock the body as much.
I hope it works out well for you, take care.
Sheri

[2011Rio]

Hi Mary, Thank you for your input, it all helps. Say, how is the abx working for you so far? Are you seeing progress? Does the mino cause any abdominal bloating for you? I’m on it right now, trying to figure out what is going on in that area.

Hi Sheri, Thanks for getting back with me on that. Good info to have.

Diagnosed w/RA 2011
Diagnosed w/Lyme, Ehrlichia, babesia, bartonella, ebv Feb 2016
metronidazole 500mg 1tab,3x a day M-F:
doxicycline 100mg 1tab 2x a day; Alliultra 360mg 2x a day;
Larrea; burbur; GSF 400mg 1tab 2x a day ; multi vit; b12 lozenge;
vit c 2000mg daily; Actemra 10/2015-present (may come off since
lyme diagnoses) Plaquenil 200mg 2x a day; Prednisone 4.5mg
(weaning off); Baclofen 10mg bedtime; Bentyl 10mg as needed;
fexodinadine 180mg daily; armour thyroid 45mg daily; omeprazole 40mg d

[Valsmum]

Hi Rio,
I got bloating for awhile when I was taking minocycline. It is weird when you are thin too, because it look like a beer belly. I don’t know what makes it go away. Do you notice sugar makes you bloated? Also I heard prednisone can make you have a bloated stomach too, something like a dissended stomach;as a wonderful side effect. Hope you get to the bottom of it. Take care.

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