And finally I resort to Steroids

General Support
1

So, totally in tears, I have finally given in and accepted a prescription for steroids. I am experiencing the most massive flare I've ever had and in constant pain, I could barely walk, and was struggling to complete a day of work.

I refused heavy pain drugs, but had a stronger anti-inflammatory. 24 hours later I get a call from my GP that my Rheumy had reviewed my bloods and has referred me to a Prof (only senior specialists can prescribe biologic s in Australia) While that is good news - I had a message on the answer machine that I am to ring in the morning to find out when my appointment is - I never wanted to take steroids having heard all the horror stories.

I have started on Prednisolone at 5mg 3 times daily. I am assured this is a medium dose that shouldn't give me any issues, other than chipmunk cheeks and other standard weight gain issues. but I couldn't go on as I was.

I am devastated. I feel like I have given in, - I guess failed almost. I have spent the last 2 hours reading through articles on steroids and can't find anyone here who was totally against them then tried them. I have only taken 1 dose so far, but already the edge is off the pain.

So anyone else been in this boat?

2

What a difficult place to be in!

I would never recommend steroids for long term unless it was absolutely last resort, but…

I took them for about 9 months before I could get biologics. And I have no doubt that without them, I would have lost my job, and possibly even my grip on life.

In fact I’m taking humira right now that’s generally doing a good job - but I’ve had terrible fatigue, minor pain, general feeling of unwellness, and a mild temperature for a couple of weeks now that culminated in me sleeping 14 hours today (I was supposed to be working from home due to the G20 in brisbane). So I took 15mg ‘rescue’ pred today,(and slept through that, hmmm) and am trying to decide if I will take some more and have a nice weekend… Or muscle through.

A comment I would make in terms of the dose though is that if you keep taking it 3 times a day (what they prescribed to me - like its a standard NSAID), you are most likely to experience difficulty sleeping within a few days. If that happens, it is worth considering 10mg on waking, then 5mg at lunch, so you are winding down at dinner and ready to sleep.

I am pleased to hear the first 5mg is genuinely taking the edge off - chances are you’ll get a great pred holiday like I did when I first took them!

Ps. Yep - almost unable to walk - had to rest at the bus stop between my carpark and work - it was only a block. I’m familiar with that boat, as I am sure many on this site are and would prefer not to be… I kept my job, got promoted, and most of the time don’t think anything of the walk from the carpark to work except how nice it is to be outside on such a beautiful day.

Pps. It’s not just belly fat and chipmunk cheeks (though that too). I’ve got osteoporosis of the spine like an 80 yo (I’m under 40), that’s what my family is susceptible to - ducked pretty much everything else (including weight gain) except the mood swings. The largest impact on bone density is made in the First Three Months. So think really hard if your docs try to claim it’s not terribly harmful ‘as long as it’s not high dose’ to stop you from moving to biologics. My understanding is that Pred is a poor DMARD - it shouldn’t be used for any length of time as primary medication - only as an occasional rescue med. but you need to discuss that with your Rheumy, and understand the pros and cons (or Prof - by the way - my rheumy prescribes biologics, so I’m not sure that they are communicating with you clearly on the need for the prof in the biologics prescription process?)

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Hey, I'm against them. Two weeks ago I was taking 60/day and by IV.

The problem isn't streoids. They are a miracle drug when you need them. The problem for us is when they are used as a solution for a long term problem. They are a short term solution for a short term problem ONLY.

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Thanks guys, you are all so helpful Yes my doc told me they would be doing bone density, checking my sugar etc etc. GP seriously explained all possible side effects. My current Rhumy is Sth African, and not yet full recognised for specialisation. Will be in a couple of months. He wants me to see someone he respects hence the referral to the Prof. Just found out my appointment is in a week, so well happy with the emergency bump up. Will keep you posted.

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Oh AND I seriously understand “roid rage”. Instant anger, just add protagonist!!

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Oh, Becstar, I’m so sorry to read this. I know, it kind of feels like a defeat, but it’s not, really. With any luck, it will tide you over until you get some relief from the more aggressive therapy. And that is a very good thing.
I would make the same comment as Jen made about the three times a day dosing. Check with the pharmacist or your doctor about adjusting the timing if necessary. When I was on it (just for a few weeks) I was told to take it only in the morning, otherwise it was more likely to interfere with my sleeping. Just a thought …
Best warn your nearest and dearest about “'roid rage”. I had it, had it bad. It wasn’t pretty. Probably just as well, because the other effects of the steroid were quite seductive. It was like a lubricant and a stimulant. Mmmmmmm…nice, but only for the short haul.
Good luck with it, and with getting quick and more permanent relief.

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I just started on a taper of prednisone today- 20mg for 3 days, then 15 for 3 days, then I'm supposed to stay on 10 until I go in for an appointment in December. I have had more energy today, and can breathe better than I have in ages- I've had a lot of inflammation in my rib/sternum area.

My prescription is for morning only, because it's "activating," according to the nurse I spoke with. I needed some activating, to tell you the truth. :)

I really, really didn't want to do prednisone, but they thought it was less dangerous than letting things go the way they were going. I get why they wanted to do it... but I don't want my face to get chubby, or to get a "buffalo hump" of fat on my shoulders.

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Hi Becstar. I doubt your rheumy will keep you on a big dose of prednisone for very long.....and, if you're like me, you'll wish you could have more of it. I had a prednisone taper about 2 years ago. I felt like I was walking on air. I remember telling my Phys Therapist I didn't need P.T. anymore. My mind was also extremely clear and I didn't have any if the usual SEs. In February I begged my rheumy and internist for some more prednisone and they bluntly refused. I felt totally helpless against them and my PsA-both were in control of me! It all turned out good in the end. This forced me to do something I never thought I'd do, which was go on a biologic. Don't let biologics scare you like I did. I really thought if I took them I'd just be setting myself up for tons of SEs, constant doctor visits and who-knows-what down the road. They might be the "big guns" but they are much more safe than prednisone. Enbrel is all I take and it's been a life saver for me for over 4 months now. My rheumy had had enough of me and my untreated PsA and he put his foot down and forced me to do something smart. So, hopefully you are feeling much better now, but if your rheumy suggests a biologic instead of continuing the prednisone, trust him-he knows what's good for you.

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Thanks Grandma J - I really don't like how I feel on these steroids. I am hoping they WILL try a biologic. I have heard so many great stories that I am convinced this is what I need. I am dealing with family issues (My Mum just moved to aged care accommodation) . I am the closest child (literally 6 doors down the road) so the brunt of the packing and preparing the house to get it on the market to pay for her care falls to my husband and me. This last few days I have had most of my sisters working here too. Obviously it is a major stressor that I don''t need, but on top of that I don't need this massive flair that I have never had the likes of <sigh>

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Wow, Becstar! You have a lot to deal with--and if you're like most everybody else with PsA, people do NOT understand how horrible you feel. It's amazing what you're doing and someday, once you're on a biologic and feeling more normal, you'll look back and wonder how you did it. I hope you get the right meds (biologic) soon. If the prednisone isn't helping let your doctor know. No sense putting it in your body unnecessarily.

I'm sure you're very much appreciated at home for all you are doing--at least you should be! Do your sisters understand what you're going through? I'm putting a plug in for Enbrel! Good luck!

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From what I've read, Humira and Enbrel are the biologics that have been around the longest and still in use so they have a good history. Some people have had success with them for 10 years! Sybil, don't you hope we do, too? Oh, I guess I have to switch to Remicade when I turn 65 and go on Medicare....UNLESS--I keep working and I can stay on my private health insurance (I think). But, anyway, I've heard good stuff about Remicade and a lot of other biologics, too! Becstar, there is hope!

sybil said:

And I've had great results with Humira. I too heard so many good reports and a part of me thought "Oh yeah, but what are the chances it'll work for me ...." and lo and behold, it's a sea change. I was okay-ish before, most of the time anyway, but the Humira experience so far is very like not having a disease. I do hope you get your chance and soon.

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OK - quick update.

After a less than stellar start to my trip (error in booking had me booked with a gastroenterologist!!) The special clinic found a Rheumy Registrar to come and do a full work up - and I mean FULL. Her attending then drove 1/2 hour accross city to see me, then I had full blood work up, chest xrays etc etc etc.

Basically I fulfill all the criteria for biologics (joint count + fail on previous drug combos) except my inflammatory markers are not high enough. The plan is to try and induce a flare and get my markers up as a new baseline (!!!)

I am currently on a 3 week taper from steroids, and most of my DMARDS, to try and induce that flare. I have twice weekly bloods ordered , then return to the city for MRI's, CT and US scans and a follow up with the team (and this time the Proff should be there)

So 4 days in and already not feeling wonderful .I'm off work for that 3 weeks, luckily, because my sleep patterns are already shattered. Wish me luck - this is going to be a long 3 weeks.

13

That sounds horrendous, and unnecessary considering that this disease doesn't produce high inflammatory markers for half the people that have it! I am so sorry, and I hope you have a lot of support around you for these weeks.

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Beccy, what a dreadful “assignment” you’ve been given! The three weeks off: is this holiday or sick leave or what?



Rosen, you snatched the words about half of us not having high CRP or ESR, out of my mouth.



But Beccy, you have to jump through whatever hoops that you must. (As if you could jump at all!) I’m hoping that your inflammatory markers go nuts without your feeling too awful.



REmember that we are here for you, Beccy. Whine and cry here if you need to – we’ll hold your hand (gently) through this ordeal.

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The Australian form for PBS (there are other alternative depending on ones private insurance:

http://www.humanservices.gov.au/spw/health-professionals/forms/resources/4158-1007en.pdf

The inflammatory markers ar not terribly high and in fact are numbers most regular physicians would blow off. However the Australian reasoning is NOT terribly off base. Psoriatic Arthritis Study, involving 1306 patients with PsA, CRP values of >1 mg/dl were found in only 52.9% of the patients. As the agents mainly responsible for CRP production are pro-inflammatory cytokines, mainly interleukin (IL) 6 but also IL1 and tumour necrosis factor, and as these cytokines are usually found at low levels in the synovial fluid of Y\PsA, the effect of the biologicals is pretty questionable as they bind to those interleukins. There are more dependable tests coming out in the next few years to measure the binding effects..

Now I have heard that if one has their ESR taken on day 20 of their menstrual cycle their progesterone levels are highest which raises their ESR and that one should avoid things like bouillon the day of their blood draw which raises albumin levels as that also can raise ESR levels. I can not IMAGINE what a lunch of Chicken bouillon, potatoe chips and a couple days of no NSAIDS and Aspirin would do. There have been people who indcated they were taking NSAIDS which lower ESR levels when in fact they have not. There is a space on the form to note patients are taking them. Of course this is all just internet chatter.....

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Hi Beccy, steroids is the answer you need in the box Sybil referred to. We could never get a high esr or crp on me, so Rheumy wrote “patient has been on long term steroids”. I believe in Aus, that anywhere from 6 weeks to 3 months and onwards is considered long term.

My understanding is that it is possible for the steroids to continue dampening any inflammation markers for some time, hence the reason medicare seems to accept this reason. How long have you been on steroids - is it just this three weeks?

Also, the thing that finally prompted my rheumy to prescribe biologics (he didn’t want to give them to me) was essentially showing that I was at high risk of harm from the steroids if we continued them (dexa scan of spine showed me at borderline osteoporosis at age of 36), combined with the likely loss of my job without better disease control.

Because of Australia’s rather archaic system, it is possible you are going to have to look at steroids for a 6 week - 3 month period (then you need to demonstrate unacceptable side affects - but you can certainly present with the often - real psychological side effects. I really hope none of this is required and you get the ESR flare they are hoping for. I’m so sorry - I can’t believe wishing a flare on anyone - I just hope the numbers go up for you!

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Wow guys, thanks for all the support.
It has been a tough few days, because not only am I dealing with all this, but my Mum has just gone into aged care and we have just finished packing up and selling off all her stuff and putting the house on the market, which will enable us to pay for her accomodation in the aged care home. (Yes another Aussie requirement). Fortunately that is now in the final stages. The cleaning crew come in tomorrow and the Real Estate team come for photos on Monday next.
OK. Here in Aus biologics are in the $35-50,000 per year price range. If it can be demonstrated to the govt overseeing group, the PBS (Pharmaceutical Benefits Scheme), that it is necessary for me to take the drugs, then I will only have to pay $30-40 per month per prescription, as I do for most other meds. If I was a pensioner that price would be $5.5@ per script. Once you reach a safety net amount determined each year, I get my scripts at the pensioner rate, and pensioners get theirs for free.
Re the hormone thing, that is a thing of the past. All my womens bits are long gone. I have no idea when my hormonal cycles are so that is not going to work, but happy to work on any diet advice - thanks for that.
At this stage I am using up a chunk of long service leave, and I have 20 years worth, so there is still about 3 months leeway there for me, and if I get on top of things I can build that up again onpver the next 5 years.
All in all, I just hope it is all worth it, because I have only once had a high (ish) reading. Thanks for the support
xxx

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OH - and - On the plus side, I have my GP's personal mobile number, the Registrar's direct contact and a fast track access to any medical support I need in the next few days.

20

I am extremely impressed. It seems to me that your rheumatologist is putting together an application that they cannot refuse. I notice on the form that your assessment has to take place within four weeks of stopping other treatment. So you are stopping and going back in three weeks. At that point they should have plenty of evidence for an iron-clad case. Clearly, these people are on your side. Thank goodness for that. Unfortunately, Becstar’s got the hardest job in this one: you have to ride this out, but it looks like they are giving you a safety net.

We’ll be thinking of you.