Starting Remistart Process & Remicaid vs Prednisone safety. Which is worse?

General
1

Hi everyone !

I hope you all had a nice Thanksgiving ! I did, because my doc put me back on a prednisone burst/holiday and I will be on 10 mg instead of 5 at the end of it till I see him in January. I will remain on 15 mg of MTX weekly until then. If I am not better, I will try Remicaid. I plan to have my infusions at the rheumatologist's office.

I wonder which is safer, staying on 10 mg of prednisone every day or being on Remicaid. If both are dangerous drugs, which is worse ? I know prednisone is CHEAP and it works like magic for me at 20 mg per day.

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Can't speak to the Remicade, but the other biologicals I have taken.never produced anything more than a slight annoyance. BUT THATS MY EXPERIENCE, no one is the same.

In regards to the predi in those amounts....After 7 days of prednisone, your adrenals shut down and the prednisone is going to take over, leaving your body completely dependent on it. It's will suppress your immune system so, the inflammatory process will slow down considerably which is a good thing. BUT it will make you vulnerable to infections (far more so than the biologics due to its different mechanism. Great drug for injured tissues and organs due to inflammation and in high doses great drug to treat cancers.

For that length of time - 2 months if I read your post right) some of the other unwanted side effects will rear their ugly head: water retention and increased appetite (weight gain), unstable moods, photosensitivity, high blood sugars, moon face (round, puffy looking face), buffalo hump on the back of neck, stomach aches, INFECTIONS, mouth sores, joint pain, depression, peptic ulcers and the list continues.

You may not experience all side effects but, you will experience some. BUT the very worse is the withdrawl syptoms when it all comes to an end and NO a taper doesn't help all that much It takes a while for th4e adrenals to restart (and sometimes they don't) I have had withdrawl from opiads and predi. I'd take the opiads.

All that being said it might be worth it........ Good luck. If it was me I'd ask your doc about a 4 day 20 mg busrt with at least 10 - 21 days between, depending on your adrenal strength and blood sugar if it at all elevated I'd skip it (but again thats me) I'm, sorry but predi spooks me but I do have a bottle of it in my arsenal - maybe once a year I HAVE to do a short burst.

3

For what it's worth prednisone scares me too. I am willing to take Remicade but not prednisone unless I had something I had to do. Like a once in a life trip or a crisis. I don't use it at all.

4

Which is worse? I haven’t taken Remicade, but I’ll still go out on a limb and say prednisone.

Whist it can be fantastic in the short term, in the long term, not so good. I did get moon face, weight on the belly (though lots of willpower prevented me actually gaining weight - it was just a redistribution), and worst of all, I needed more of it to actually work (because of course my own adrenals stopped functioning).

None of this happened quickly - I didn’t have any of these effects at first at my peak dose of 15mg, but after 8 months of continuous use at an average of about 12mg per day, slowly and insidiously, they started to creep in. Not to mention that I’ve already lost bone density in my spine.

I’m pleased you’ve been able to take it “on and off” which means you’ve got a much better chance of not seeing the effects for longer.

I’m currently on 5mg and weaning - because I now have Enbrel which works well enough. All I can compare the weaning experience to is giving up cigarettes - wouldnt wish it on my worst enemy!

5

I am on Enbrel now and may have to switch to Remicade in January as the Enbrel is not working well any more. It seems to be similar to the other biologics in s/e except that possibility of allergic reactions during the infusion. I am not afraid of it at all. But prednisone I am afraid of. I have taken care of so many patients who are terribly osteoportic like there made of a twig that will snap and no muscle mass and complete invalids who can no longer do anything for themselves like even brush their teeth or eat. They were all RA pts who have been on prednisone all their lives as that was all that was available before these new drugs. The only drugs available back then was gold and prednisone. Then mtx and now biologics. I am also very excited about the new drugs coming out in the next five years. We truly are living at an exciting time if you have to have this awful PsA.

Mimi I will support you no matter what you decide. We all have to decide on what treatments are for us. These are my very honest thoughts. I will continue to send you warm hugs and prayers as you navigate your difficult decisions. M

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You are very welcome Mimi. I too believe in the power of prayer. It also resets my brain! When I described some patients I have seen I negected to describe that their brains were fine. They were just caged in a body that no longer functioned at all. They all looked like they had been starved due to the muscularture wasting. Really sad but there are so many new drugs that won't happen tous. My wishes and prayers will be with you.

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Everyone should read this Post from:

http://forums.spondylitis.org/ubbthreads.php?ubb=showflat&Number=244695&nt=2&page=1

I thought I'd write an update on my steroid status, as I've noticed that quite a few people here are using prednisone fairly frequently. Steroids seem like an "easy" fix for all the pain we deal with, especially when nothing else is working yet. I know I was pretty desperate when I started it! But I wanted to share one particularly serious consequence of taking steroids - so that you all can seriously consider your options, and decide how much risk you are really willing to take. Some of you will remember my earlier posts.

I've been on steroids for over 2 years now. It all started pretty innocently (just for 2-3 weeks). But due to developing chronic scleritis that was not responding to steroid eye drops, the oral dose became high and longer-lasting.

As a result, my adrenal glands have stopped producing my own cortisol. Right now, if I stop taking steroids, I die. If I get very sick or have an accident, I can die if I don't promptly receive an emergency injection of extra steroids and IV fluids. That includes just getting the stomach flu. This is a deadly serious condition.

I'm working with an endocrinologist in a final attempt to wean off the steroids and "kick-start" my adrenal glands. He switched me from 7 mg/day prednisone to 30 mg/day hydrocortisone (HC). The HC fluctuates more in the bloodstream throughout the day, which encourages the pituitary and adrenal glands to "wake up", and chemically it most closely duplicates our own cortisol. And, yes, my pain levels increased after being taken off of Pred, as the HC has a lot less anti-inflammatory action, and even 7 mg/day of Pred was helping a little.

My endo believes I can recover, BUT only if I can tolerate the weaning process. Frankly, it's torture! And this torture could last 1-2 years... if I'm lucky enough to succeed. I could go through all of this, and still fail.

I've been instructed to reduce my daily dose by only 2.5 mg HC each month (that's only about 1/2 mg of Pred!). After 4 months of this microscopically slow weaning, I'm now starting to experience the terrible low cortisol symptoms that I must endure for many months, if I hope to succeed.

My temperature at night plummets well below normal - often 95.4 F, or even as low as 94.7. No matter how well I bundle up at night, I wake up freezing cold. Time to get an electric blanket, I guess.

I often get dizzy when getting up, from low blood pressure. Today, it was down to 87/54. There is overwhelming fatigue with this, too. Along with headaches, and chronic nausea with lack of appetite. And, of course, some increased pain - though I still rarely need to use any pain meds, fortunately. All of this will go on for months! It's so difficult, that's why many people quit during the process and stay on steroids for life.

And this weaning process means that I have to skirt being on the edge of experiencing a critical adrenal crisis the whole time. So I have to be extremely careful with my dosing and paying close attention to my symptoms so I can try to prevent a crisis, but still continue to taper. Frankly, it's pretty scary and extremely miserable.

On top of this, if for any reason my PsA ever flares badly again, I can't even take narcotic pain meds without risking an adrenal crisis.

I know other members here are dealing with their own side effects from steroids. Ann now has permanently tissue-thin skin that frequently tears open with the lightest glance. I had another friend with that issue, and it was truly terrible to see.

There are times we definitely need to take steroids. Most of us have been there. But I encourage you to seriously consider other options, if there are any. I am going through hell, and don't want any of you to join me! Best wishes.
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Psoriatic spondylitis, became severe within 3 years; on disability. Single, age 55. Hydrocortisone (25 mg/day) for adrenal issues. Failed Humira, Remicade, and methotrexate. Can't take NSAIDS. Currently using diet/lifestyle changes and exploring using Functional Medicine to reduce inflammation. Not using any immune-suppressants or pain medication.

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Thanks for the information Lamb. I am scared of prednisone for those very reasons. But I have felt so good on it in the past it was like getting my old body back. But not worth the risks for me.

9

I have always taken the advice of my rheumatologist…not to use them unless absolutely necessary and to use pain meds sparingly.
One of the Renal Consultants I work with gave me a lecture on steroid and pain meds when he heard of my diagnosis…basically that I’m too young (??? I’m 50) to take these meds yet and may do more harm so early on in my disease…diagnosed in 2010, but tendon pain since my 20,s!
I’m lucky that’s so far I’ve been able to hold off from steroid meds but some times its been a very close thing when I don’t think I can cope anymore. I’m acutely aware that I have this disease which will always be with me and maybe there is worse to come, so count steroids as big guns I’m keeping in reserve.

10

I take 2-4 vicodin every day with my rheumy's blessing. I have had PsA at least 30 years but perhaps from birth when I had a bent foot that they casted when I was born. I was not diagnosed until 2008. I save the morphine and fentayl till later, for end stage. I don't know if I will dare to take steroids then or not.

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It is a tricky one, but as with all the decisions we have to make…if we have all the relevant information we can then make an informed choice. One based on us personally, we’re the only ones that can choose what’s right for us.

12

When I have weaned before it was at the 10 mg a day when I start getting symptoms of PsA again. I flare terribly as the dose is reduced from there. I believe if I reduced it over months I would have any easier time weaning but prednisone frightens me. I also experience terrible anxiety as it is reduced perhaps as I am feeling all of the PsA in all it's flare glory....

13

It was started at 20 mg a day for 2 days then the weaning began. It was reduced by 2.5 mg a every 2 days until I was at 5 mg then I stayed at 5mg for a week then to 2.5 mg for a week then done. But it was hell. Talk to you Rheumy's office before attempting. Really.

14

I do think that would work but I really think you should run it by your Rheumy or his nurse. My Rheumy has "Triage Nurses" in her office. I can always get a same day call back when I need to run something past them. How are you feeling on 10 mg a day? What are you scheduled or commited to in the next week or so?

15

Yes but you can tell them it does not seem to be helping an it is one of "the big gun" drugs you would rather not be on if it is not helping. Right?

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Tell them you have now done your research now! You are a blonde right :-) Big smile and LOL, I even do great mouse heads <3, <3, <3!

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I think so too, for what it is worth. I am sorry about the Blonde joke but I could not resist. Come to think of it maybe I am a blonde now too. My roots are completely white so maybe!

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I don't want you or anyone to be hurt by my silly jokes. Lamb gets in trouble here sometimes but I can hear him as he says it and is very funny. You never know what voice people hear in their heads when they read what one writes on e-mail. Seems to cause great discord at times.

19

Prednisone versus biologics....

With prednisone you know it's going to hurt you. Everyone who goes on prednisone long term gets side effects. With biologics most people who go on them are just fine, a few people on them have side effects sometimes bad, but bad side effects are rare.

So there's your choice. I'm on Enbrel, I think the stuff is great. My wife has a cold and I didn't stay away from her. I might get a cold, I might not. It's not particularly worrying to me.

20

I hope it goes well for you. I still haven't figured out why the medrol dose pack my Rheumy gave me had no effect but 10-20 mg of prednisone has such an impact on my pain and mobility. It is suppose to be less dangerous than prednisone tapers but had absolutely no effect on me. I got a call to schedule the Remicade infusion! Keep your fingers crossed it works for me. mimi- Are you at all familiar with a tv series called, Criminal Minds? there is a character named Penelope Garcia and for some reason I am convinced she is like you. Garcia is sweet and kind and always sees the good in everyone. I imagine her voice when you write on here. Despite the series name this is a compliment!