Prednisone while on Mino

[Maz]

@Robert wrote:

HI Maz……….does the word cryolilnemia ring a bell to you or your brother,,,,or vasculitis,,,,jee am trying to remember,,,,,,will come across it again,,,,anyway its important to ms,,,,will find it,,,,anyway does it?

Sorry Robert, I don’t know what you mean. ❓

[Lynne G.SD]

Good morning everyone.
Robert please post the info you have as I certainly would like to read that link and know several researchers who would love to see it also.
I have not posted lately as I am very,very busy.Always busy but summer is a killer as I always have 3 times more work than in winter.

[jasregadoo]

Looking back, I see that I’ve been on prednisone for 5 months now. I was at 10 mg for quite awhile, then 5 mg, then 2.5. I’m now taking 1.25mg, but would like to get rid of it entirely. The problem is, I feel my pain and discomfort coming back. I thought I was doing better. I am doing better. But not great, not yet.

Also, I’ve been on naproxyn (aleve, 220 mg 2x daily) for I don’t know how long. 10 months maybe? It’s not a high dose, but I do worry about damage to my gut and stomach.

I want to get off of both of these. I kind of wonder if the reason so many people with RA have sensitities to gluten and dairy is because these drugs have done damage to their guts. I don’t want that. I’m trying to get better without dietary changes if possible. There are eating disorders in my family, in my house (not me), and I don’t like the idea of restricting my food and perhaps triggering someone.

I see online that both prednisone and naproxyn are bad with long terms use. But what is long term? 2 months? 6? a year? More? I don’t know what to think.

[lynnie_sydney]

jas – my AP Doc (somewhat alternative) states that pretty well all people with chronic diseases have Leaky Gut. My dietary changes (in my sig line) made a BIG difference to me within a short change of time. And, (with the exception of less than 2 years on sulfasalzine) I have never been on conventional DMARDS, NSAIDS or pred. Yet I showed up as having sensitivities to a lot of things. I don’t think, from my understanding, that pred is indicated in damage to the gut. But it has a lot of big downsides with longterm use. You can google those under long-term prednisone use. Having seen what terrible damage longterm use did to my Mother, I am angry that it is even able to be prescribed as a longterm medication.

Coming off prednisone is always very difficult because the adrenals need to ‘wake up’ before they start producing their own steroids again – the reason why the pain is so great when trying to wean off it. Most people say the last 5mg is the worst. There’s lots of good history in terms of posts on how people have managed to do this and what helps to wake up the adrenals. You should be able to find a lot of them by using the search function and typing something like ‘weaning’ pred’ into the search box .

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)

[Linda L]

Jasregadoo,
I kind of wonder if the reason so many people with RA have sensitities to gluten and dairy is because these drugs have done damage to their guts.

So Maybe it is like that. We were fine before and then when we started taking those terrible medications they damaged our guts.
Maproxyn was too toxic to my stomach, I switched into Celebrex. I am on 1.5-2 mg of Prednisone. Yes, it is very difficult to get rid of it.
Lynnie, please let me know what dose was your mother on for how long.

Linda L.

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

[lynnie_sydney]

Linda

I kind of wonder if the reason so many people with RA have sensitities to gluten and dairy is because these drugs have done damage to their guts.

No that is not true. Whilst NSAIDS are known to do damage to the gut, that is not true of every medication and it is not the case for those people who have never been on NSAIDS. That is my case, yet I have sensitivity to both gluten and dairy. See my post above. It is easy to make a one-size-fits-all conclusion, but there are many factors involved in all this.

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)

[jasregadoo]

I gave up gluten and dairy for awhile, but felt no difference whatsoever. My diet wasn’t terribly restrictive (because of eating disorers, I really try not to restrict if I can help it.) I was tested for sensitivity, and nothing came up. I do know that a lot of the tests are not very accurate, but I at least had what I could done.

I have friends who give up gluten (or dairy, or both) and their pain goes away within a couple of days. And if they eat some, they suffer fairly quickly as well. This was not the case with me.

Thanks to you both for your input. It’s helpful.

[lynnie_sydney]

jas, everyone – it takes about 3 months of giving up gluten for the full effects to be noticed, because of the half life that hangs around in the body.

In my case, I started to feel a difference in about 6 weeks. And it has to be ALL gluten too. For a while I was eating well but feeling hungry all the time and my AP doc told me I was probably getting some hidden gluten from somewhere. And she was right. Turned out the chocolate sprinkle on my morning cappuccino contained gluten!! You also have to read packets avidly. There’s gluten in the most unlikely products, primarily because it’s the world’s cheapest binding agent. Even most instant coffees use wheat in the processing but don’t have to declare it because it’s not ‘an active ingredient’. (Moccona/Dowe Egberts is the only one that doesn’t use wheat). It can be overwhelming at first. But, for me at least, after a while it became a non-issue, just a way of life.

And whilst it took quite some time for me to feel the effects of no gluten in my body, these days if I inadvertently eat some, the effect is immediate – my stomach swells after about an hour, so that I look about 5 months pregnant 😀 😀 😀

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)

[Author]

Posts