Occasional steroids for flares vs biologics

General Medications
1

I have had Psoriatic arthritis for 20 years, though just got diagnosed a few years ago. I believe my disease is moderate.

I have been on Hydroxychloriquine for 3 years, and Mobicox. It helped for a year - amazing improvement, but now the disease does not seem to be controlled by it. I have had a number of flares in the past 2 years.

My Rheumy added Sulfa to the regime this Dec, which I stopped taking after a week (long story see sulfa thread). Then I had a 5 month remission. Yippee.

I am now in a very bad flare, and have started on a rescue prednisone taper (20mg for a week, then 15 for a week, then 10 for a week). I am guessing my Rheumy may suggest biologics next, as I now have axial involvement/pain, and she is thinking I may have AS (or axial SpA). I see her again in 3 weeks after the prednisone and spinal xrays.

Anyway, here's the thing....in 20 years and many flares (and other xrays and MRIs), I have had NO destruction of bone, tendons, etc. NO radiographic changes in the spine or joints. I almost never swell. My defining symptoms are morning stiffness, pain - usually where the entheses are, GI stuff, and now pain stiffness all down my spine and ribs/chest, and sciatica (nasty).

I want/need to stop the flares as I have no quality of life and running my business is extremely difficult (OK impossible), but I am not certain I want to take on the risks of biologics (I am already a high risk for cancer and heart disease and already suffer from unexplained neurological symptoms).

Is anyone here just using NSAIDS, alternative therapies, and only when absolutely necessary, rescue prednisone to stop unruly flares? I have only used prednisone once before, but it stopped the flare - and I am already feeling much better after 3 days this time).

Do you think biologics are warranted when there is no bone/tendon destruction?

Any thoughts advice would be appreciated.

2

Well the bios won't do you a darn bit of good AFTER you have permanent damage....... The idea is to prevent it. Its ltlle bits that add up over time that lead you to say one day Holy Crappola I'm screwed.............. I went prolly 30 years before I got all the pieces put together........ Figured it was jumping out of airplanes to hike in South East Asia. Even after I lost my career, I figured it was jumping out of airplanes to go hiking................ AND I should have known better (for lots of reasons - including my former career)

If you are a business owner, I assume you know numbers. The NSAIDS have a stronger risk factor than ANY of the BIO's. Study the cancer numbers. Except for one form of cancer found in Teen age Boys (primarily) you actually have the same or lower risk as anyone.

I'm not rying to sell anything. Just look at things some different ways. We can't go backwards as those of us who have had multiple "repairs" (surgery) even after starting treatment have learned the hard way. Think of the big meds as a long tern investment................. It doesn't sound to me like what you are doing is working BTW. You shouldn't be in a position where you are worrying about your business because of PsA. That actually makes the PsA worse.

In the meantime nothing like a low dose predi taper to get things moving. I would ask you doc about Burst though. Sounds like a three day burst would be just as effective for you.

3

Thanks for your input. I have spent the past few weeks reading the studies and researching the stats, and generally, I am pretty logical in my approach. I totally get why most people take them...it is a no brainer in my opinion for someone with severe disease. After 20 years and no damage - none - I just don't think I have a destructive form of the disease, and taking any med that causes me to be in just as much pain as the PsA is just not on. That is why I stopped the Sulfa. I have no side effects from the Hydroxychloraquine nor the Mobic, nor the occasional taper - so for now, that makes the most sense to me - IF the taper actual stops the flare. If it comes back once I stop, I guess I will have to try either adding another DMARD, or the biologics. I have full coverage, so money is not an issue - quality of life is though. If you can tell me where you found the cancer stats that would be great, because the studies I have been reading don't quite line up with that, and in fact, some of the newest studies are suggesting a cautious rethink on the use of biologics. Anyway, any info you can throw my way would be good. I am a total analyzer and the more info the better for me.

BTW, I had not heard of the burst until yesterday when I was reading about the newest thinking on prednisone, and you are correct, a high dose, fewer days, and no taper is now what is recommended for rescue.

Thanks again for your input.

tntlamb said:

Well the bios won't do you a darn bit of good AFTER you have permanent damage....... The idea is to prevent it. Its ltlle bits that add up over time that lead you to say one day Holy Crappola I'm screwed.............. I went prolly 30 years before I got all the pieces put together........ Figured it was jumping out of airplanes to hike in South East Asia. Even after I lost my career, I figured it was jumping out of airplanes to go hiking................ AND I should have known better (for lots of reasons - including my former career)

If you are a business owner, I assume you know numbers. The NSAIDS have a stronger risk factor than ANY of the BIO's. Study the cancer numbers. Except for one form of cancer found in Teen age Boys (primarily) you actually have the same or lower risk as anyone.

I'm not rying to sell anything. Just look at things some different ways. We can't go backwards as those of us who have had multiple "repairs" (surgery) even after starting treatment have learned the hard way. Think of the big meds as a long tern investment................. It doesn't sound to me like what you are doing is working BTW. You shouldn't be in a position where you are worrying about your business because of PsA. That actually makes the PsA worse.

In the meantime nothing like a low dose predi taper to get things moving. I would ask you doc about Burst though. Sounds like a three day burst would be just as effective for you.

4

Heres the old teach giving you a "challenge" instad of answers (you are clearly smart enough not to believe me anyway)

First of all and you may have done this acquaint yourself with Google Scholar, it gets rid of a lot of Google anecdotal Junk:

https://scholar.google.com/scholar?start=10&q=cancer+risk+with+biologic+arthritis+medication+studies&hl=en&as_sdt=0,27&as_vis=1

You will also want to do a two tail analysis: keep in mind active disease (psoriatic arthritis) increases you cancer risk substantially anyway. Few of the studies I have seen have factored this against actual numbers as most are concerned with RA (afterall thats where the money is

Heres some google stuff to get you started:

https://www.google.com/webhp?sourceid=chrome-instant&ion=1&espv=2&ie=UTF-8#q=risk+of+cancer+with+Psoriatic+arthritis

5

Thanks - I do use google scholar exclusively when researching medical stuff. I also wanted the stats regarding the heart disease/cancer risk of untreated inflammation vs the meds, but could not find anything useful.

A lot of the conclusions in the RA studies in the link you provide (I have read them all) suggest there is no increased risk of cancer - from one biologic to the other - but the meta analysis I read says, "Conclusions There is evidence of an increased risk of serious infections and a dose-dependent increased risk of malignancies in patients with rheumatoid arthritis treated with anti-TNF antibody therapy."

Anyway, I will keep reading, wait to see how I feel at the end of the 3 week taper, and go from there. I have spinal xrays tomorrow, which as usual, will show nothing :-)

6

Have them do your hand......... The pencil in a cup thing will show up there first. This one will get you started: http://www.medpagetoday.com/meetingcoverage/aad/47129

Also you want a break down of the malignanacies. I think you will discover that they are including in that list far more than blood lymphoma. They also include melanomas. which are both preventable and very treatable. You art a higher risk of the melanoma from a number of meds because of sun sensitivity. Be sure and look at age groups and gender as well

7

Corrie, the general mention of increased risk of malignancies is one that always givesus the willies. Usually, though, the conclusions don't specify who (age groups, gender) tends to get the malignancies, nor what kind of malignancies they get. I think that's significant information, and I don't know enough about it to speak authoritatively. Maybe someone else can.

8


Hand? Pencil in cup??
tntlamb said:

Have them do your hand......... The pencil in a cup thing will show up there first. This one will get you started: http://www.medpagetoday.com/meetingcoverage/aad/47129

Also you want a break down of the malignanacies. I think you will discover that they are including in that list far more than blood lymphoma. They also include melanomas. which are both preventable and very treatable. You art a higher risk of the melanoma from a number of meds because of sun sensitivity. Be sure and look at age groups and gender as well

9

Yup your hand. Unless you have the spondylitis type, the damage appears first in your hands or occasionally, first in your feet. It may not even be painful..... it's called pencil in cup because thaty's what it looks like.

https://www.google.com/search?q=pencil+in+cup+x+ray&oq=pencil+i...

I don't mean to be crass, but if it shows up in your spine, you are pretty much screwed.

10

Hi Corrie, from one skeptic to another, except I'm a former skeptic, the biologics, in my opinion, are safer than prednisone. I realize you're thinking an occasional prednisone taper or burst isn't harmful. I think it is harmful. I had a couple prednisone tapers when my PsA was getting to where I couldn't handle it anymore. I had been diagnosed in 2008, my rheumy said my disease would probably continue to progress slowly as it had been to the point of diagnosis. By 2012 I was having continuous P.T. for the pain and stiffness in my back--thoracic and lumbar spine--and neck. I don't like meds and didn't take much of anything--naproxen sodium eats holes in my stomach and I'm afraid of pretty much every med. I had two prednisone tapers in 2013, which made me feel so good I told my physical therapist I felt like I was walking on air. When they wore off, though, I felt worse than before. I begged my rheumy for more prednisone, and he flatly refused. He told me it wasn't safe to keep taking the prednisone tapers. I finally had to cave and agree to go on a biologic because I felt so lousy. I was 60 and at that time I honestly felt like the PsA pain was eating away at my body and was sure I wouldn't make it to 70. (I had already refused Sulfasalazine and Mtx.) I started Enbrel July 3, 2014. It was the best thing I've ever done for myself. I don't think my joints were showing any damage (other than a couple fingers and toes), but my back and feet are damaged and especially my feet are causing me some pain now. I'm pretty sure the damage was happening while my PsA was active--I had slight swelling, which wasn't really apparent to me until after I went on Enbrel and the swelling went down.

I don't have any SEs and I don't get sick any more than I ever did. I've had two colds and strep throat once in 2 years--the strep cleared up with 10 days of penicillin.

You will know when you're at the place where you just can't handle it anymore. I can't even imagine going back to feeling like I did in the couple years prior to starting Enbrel. Good luck!

11

the thing is, I have pain, but every time they send me for MRI or xrays - and I have had it done many times, it shows NO damage. I just had yet another set of spinal xrays done today...we will see what they say, but mark mu word, they will be normal.

tntlamb said:

Yup your hand. Unless you have the spondylitis type, the damage appears first in your hands or occasionally, first in your feet. It may not even be painful..... it's called pencil in cup because thaty's what it looks like.

https://www.google.com/search?q=pencil+in+cup+x+ray&oq=pencil+i...

I don't mean to be crass, but if it shows up in your spine, you are pretty much screwed.

12

You can see pictures online of the pencil in cup fingers. Beware, though, if you've never looked at PsA damaged fingers/toes/etc., it is depressing.

I think, but not sure, if prednisone makes such a difference, there's definitely inflammation. So, if not PsA, then what are those terrible symptoms?

I hope you get some answers soon!

13

GrandmaJ, Not every one with PsA will have involvement in their fingers (peripheral version).

I have axial spondlyoarthritis (non radiographic to date and "working" diagnosis is psoriatic due to nail involvement), which started in my large joints (Shoulders, hips, occasionally knees), and now my spine. It affects mostly my enthesis and tendons - so I get little to no swelling, and in 20+ years, have experienced no bone changes (spurs, joint damage, cartilage deterioration, etc). My blood NEVER shows inflammation (hapens in 50% of the Psa cases), and xrays and MRIs have been normal to date. If the axial involvement is confirmed - the diagnosis may change to AS, but treatment options are the same same - though generally, biologics are reccommended. The prednisone has helped, and always does, as did the Plaquenel and NSAIDS for the last few years.

What I find interesting is that the inflammation can cause so much pain, yet not show up in markers or cause damage.

14

Hi Corrie,

[warning...long post!]

like you I have no inflammatory markers for the disease and I didn't show signs of damage on x-ray.

I started biologics about three years ago because my disease, inflammation, pain and fatigue were preventing me from living a normal life. Also, I decided that I didn't want the damage I can see and feel (although not visible on x-ray) in my joints, tendons and tendon attachment points to get any worse.

I know how great prednisone can make you feel. I have a complicated relationship with it. I also know that using prednisone led to a terrible rebound flare for me last year which took about 6 months to get over. No kidding. And that was WITH biologic medications to help, too.

I travel to East Asia for work for three weeks every summer--not a vacation but intense work that happens to be overseas--and I take a low dose of prednisone while overseas to help keep the fatigue at bay. Last year I tapered off at the usual rate but my body thought it was too speedy hence the rebound flare. The flare caused massive fatigue, weight gain, and prevented me from walking more than a few steps each day. It was debilitating and lasted for months. And because of how badly I felt and how long the flare lasted I now take a daily anti-inflammatory and a new DMARD (Otezla) on top of the biologic.

I recognize that this is my experience and in my own experience prednisone can quite literally be a lifesaver. But you can't ignore that prednisone has its own set of complications and risk factors, some of which do and some which don't show up in the research. What I mean is that while a flare isn't the same thing as a risk of cancer, for example, for what it can do to derail your life it is still no joke.

You sound like a really smart and careful consumer and I applaud you for that. I don't think there's anything better than taking all your research to your rheumatologist for an informed conversation. You might not be a good candidate for biologics. But maybe a DMARD is a good way to go for you.

15

Corrie said:

What I find interesting is that the inflammation can cause so much pain, yet not show up in markers or cause damage.

For sure, Corrie. I had terrible foot pain for years, while my inflammation markers and my x-rays were normal. So my PCP insisted that there was nothing wrong with me. It was only when (6 months after the last set of x-rays) new x-rays showed damage, that I was diagnosed with PsA. Later, in a matter of six months or so, my hip suddenly went bone on bone. Markers were slightly elevated, but nothing alarming. When the orthopedic surgeon did the hip replacement I lost 2L of blood because the joint inflammation was so severe that the whole pelvic area had vascularized.

So neither pain from inflammation nor damage from it necessarily correlate with raised markers. The scary thing thing about PSA is that all of a sudden, after having inflammation but no damage, it can all go horribly and permanently wrong.



16

Thank you for this. It is true - I know - re the steroids.I will discuss the biologics with my Rheumy in Sept. I am glad to hear that they will even consider giving it to someone with no visible signs of damage, and no markers. The pain is debilitating at times, as is the fatigue from fighting chronic inflammation. I am tapering off now, and already a significant amount of pain is back. Sign. Hopefully I will not experience what you did.

I do take a DMARD - Hydroxychloriquine, and the NSAID Mobic. I have been on them for 3 years. The first year I had no flares, the second a few short ones, this year - not so good.

janeatiu said:

Hi Corrie,

[warning...long post!]

like you I have no inflammatory markers for the disease and I didn't show signs of damage on x-ray.

I started biologics about three years ago because my disease, inflammation, pain and fatigue were preventing me from living a normal life. Also, I decided that I didn't want the damage I can see and feel (although not visible on x-ray) in my joints, tendons and tendon attachment points to get any worse.

I know how great prednisone can make you feel. I have a complicated relationship with it. I also know that using prednisone led to a terrible rebound flare for me last year which took about 6 months to get over. No kidding. And that was WITH biologic medications to help, too.

I travel to East Asia for work for three weeks every summer--not a vacation but intense work that happens to be overseas--and I take a low dose of prednisone while overseas to help keep the fatigue at bay. Last year I tapered off at the usual rate but my body thought it was too speedy hence the rebound flare. The flare caused massive fatigue, weight gain, and prevented me from walking more than a few steps each day. It was debilitating and lasted for months. And because of how badly I felt and how long the flare lasted I now take a daily anti-inflammatory and a new DMARD (Otezla) on top of the biologic.

I recognize that this is my experience and in my own experience prednisone can quite literally be a lifesaver. But you can't ignore that prednisone has its own set of complications and risk factors, some of which do and some which don't show up in the research. What I mean is that while a flare isn't the same thing as a risk of cancer, for example, for what it can do to derail your life it is still no joke.

You sound like a really smart and careful consumer and I applaud you for that. I don't think there's anything better than taking all your research to your rheumatologist for an informed conversation. You might not be a good candidate for biologics. But maybe a DMARD is a good way to go for you.

17

Thank you for sharing that. These stories play a huge role in helping me decide what to do. I appreciate it. I am so often amazed that I do not have damage, given the intensity of the pain I feel sometimes.

Seenie said:

Corrie said:

What I find interesting is that the inflammation can cause so much pain, yet not show up in markers or cause damage.

For sure, Corrie. I had terrible foot pain for years, while my inflammation markers and my x-rays were normal. So my PCP insisted that there was nothing wrong with me. It was only when (6 months after the last set of x-rays) new x-rays showed damage, that I was diagnosed with PsA. Later, in a matter of six months or so, my hip suddenly went bone on bone. Markers were slightly elevated, but nothing alarming. When the orthopedic surgeon did the hip replacement I lost 2L of blood because the joint inflammation was so severe that the whole pelvic area had vascularized.

So neither pain from inflammation nor damage from it necessarily correlate with raised markers. The scary thing thing about PSA is that all of a sudden, after having inflammation but no damage, it can all go horribly and permanently wrong.

18

Corrie, I know we've all said this directly or indirectly before but pain is NOT a good indicator of whether or not your PsA is active, inactive, causing damage or not.

Maybe I'm a wimp but I prefer to live with as little pain as possible for as much of the time as possible and that helped inform my decision to proceed to a biologic as soon as I qualified for one, before PsA robbed me of anything else. Unfortunately it wasn't soon enough to save my career ... I had my own business so it was a passion not just a job. Nor soon enough to give me my full walking ability back.

I've got signs of damage in joints that have never hurt and equally joints which hurt like hell are undamaged. I have never responded very well to steroids, although I've never had a high dose burst or extended treatment (just short courses of low dose oral or intra-muscular/intra-articula injections), but I can't conceive living my life (such as it is already limited by my PsA) going from one flare to the next and only fighting the fire not the cause of the fire.

Before I started Simponi (golimumab) each flare got longer, more severe (along with the consequences) and harder to get under control. At least now I feel that whatever my disease progression turns out to be I have thrown everything possible at it and optimised my quality of life and physical function for as long as possible. I hope I never have to look back and think "if only".