Steroid Withdrawal???

[MiniSpec]

Hello all,

I've posted on here before, but mostly in answer to other people's posts about PMR and Pred issues. This time however, I am posting about my visit to my rheumie last Thursday (5th Oct) which was only the second time I've seen a rheumie in 13 years.

I saw her first in May of this year, and at that time I was on 3mg of Pred per day. During that visit she informed me that because I'd been suffering from PMR for nearly 14 years and been on Pred for 13 years, I was no longer suffering from PMR!

I told her I have read on this forum that PMR can and does last a very long time for some people, and my experience bore that out. Anyway, she wouldn't budge and decided that I was suffering from osteoarthritis and if anything I had become steroid dependent. She then ordered up a Synacthen test and a Dexa scan, and I had both of those during June.

Between my first visit to her and the second, I tried reducing my Pred down to 2mg by going first to 2.5mg and then later to 2 1/4mg, before trying 2mg per day. When I got to 2mg per day in September, I was only able to last for 4 days before I woke up unable to move due to pain and stiffness in my neck and shoulders. The pain level that day was the same as it had been the day before I started on Pred 13 years ago. I've been on sick day rules since then to overcome the inflammation, and then rapidly reduced back to 3mg on Thursday, just in time for my second visit.

When I saw her on Thursday she told me that I no longer had any inflammatory markers according to the Synacthen test, and my bone density was good according to Mr Dexa, which means the PMR is in remission. So any pain or discomfort I experienced when reducing must therefore be put down to steroid withdrawal, and not PMR. !!!???

So I'm a Pred junkie it seems. A common or garden drug addict. Who knew?

She did offer me Naproxen as a way of getting off steroids, but told me I'd have to have something to protect my stomach when taking the Naproxen. I told her about the one and only time I'd taken an Ibruprofen tablet. It caused immediate and very painful stomach cramps, so anything like that would probably do the same thing. She then said that if I didn't want Naproxen there was nothing else she could offer me as a way of getting off Pred, and told me I'd probably be on Pred for life.

Anyway, that's the last I'll be seeing of her. She told me she'll give me a follow up phone call in 6 months to see how I'm going, but that's it, she's finished with me. She did however order some blood tests, presumably to confirm that my ESR and CRP markers aren't up, and I had the blood taken on Thursday, so I have no idea if or when I'll ever get the results of those.

Sorry for the very long post, but without the context the post would not have made much sense.

[SheffieldJane]

I am so sorry that your Rheumatologist seems to have abandoned you as “too hard” it is appalling really. Your case is complex yes, but surely that is precisely what a Rheumatologist, a consultant, is for? I agree that you need a fresh pair of eyes on your case. Please do not take on board the “ addict” imagery. If you are an addict then we all are and nobody warned us, so perhaps we should sue?

Has arthritis been diagnosed by separate tests? What tests have you had? Such as MRI, ultrasound, CT scans, X Rays?

Where are you in the country right now? I wonder if we could recommend a better doctor. Don’t lose heart. PMRPro was suffering PMR symptoms for 14 years and has been greatly helped by Actemra/Tocilizumab. There will be a solution and with our help you will find one. I just want to express my sympathy, others will be along. X

[MiniSpec in reply to SheffieldJane]

SheffieldJane, thank you for your post. I'm not downhearted about my situation. At least she's said it's up to me to control the level of Pred that I take, and I guess she'll be writing to my GP's surgery to let them know what she's decided.

I do hope to get off Pred altogether one day, because I have tinnitus that started the day after I took my first Pred dose. I'm hoping that if I can get off Pred then the tinnitus will fade away, but I'm not holding my breath about it. The quip about being an addict was meant lightheartedly, just as we're all addicts of oxygen and carbon, like it or not.

Currently I'm on 3mg of Pred per day, and I know that I can go down to 2.5mg per day without any significant increase in pain or discomfort, so I'll probably stay at 2.5mgs for a while, and see about reducing as and when I can.

The good thing was that I've passed my Synacthen test, so I'm not a complete failure.

Also, the Dexa scan showed that my bone density is fine, which is a good thing because in times past I had to have an MRI because there was concern about the bone density around my sacroilliac joints.

As to her pronouncement that my PMR is in remission, well that's her opinion, and as such it's no more valid than anyone else's. Judging by the way my body reacted to dropping to 2mgs per day, I'm of the opinion that it wasn't caused by steroid withdrawal, but by inflammation brought on by a lack of Pred. This seems to have been borne out by the fact that going up to 12mgs per day for a week has cleared out any and all inflammation, and I'm now back where I was before I reduced from 3mgs back in May.

Regarding osteoarthritis, I knew I had some spinal wear and tear because throughout the 80's I worked as a motorcycle courier for 10 years in Central London. Wearing a 4lb fibreglass crash helmet for 10 hrs per day, 5 days a week takes its toll. Along with that the constant jarring of the spine from sitting on a motorbike saddle on London's rather potholed streets hasn't done my lower spine and hips any good either. So I'm surprised that I've suffered as little as I have, and I'll keep myself active as long as I can, in order to keep up some quality of life. It's not the end of the world, and rheumie or not I'll keep trundling on till I eventually trundle off this coiling mortal, sometime in the distant future.

[PMRpro Ambassador]

It is a very ill wind that blows no-one any good. You seem to have successfully got rid of her ...

She is NOT taking into consideratiobn a lot of things about long term pred - and justbecause your synacthen kick of the adrenals showed the adrenals are working - it does not mean the entire HPS axis is in synch nor that the PMR is not being controlled by the dose you are on.

Prof Sarah Mackie is starting a campaign of correcting misinformation ...

[MiniSpec in reply to PMRpro]

It was an interesting experience meeting a rheumie, as I'd been ignored by my GP since the last time I had GCA, which was around 10 years ago. So finding out what the specialists now believe was something of an eye opener. For instance, when I asked what my ESR was she told me it's no longer used, only the CRP is used nowadays when considering inflammation. This was news to me, as I always thought the two measurements were used together to determine whether the body was experiencing inflammation or not.

So as you say, I seem to have successfully got rid of her. I'm sure she's a very useful person for other rheumatic ailments, but although she proved useful in that she was able to order up the Synacthen and Dexa tests, I'm not sure that her forthright opinion on PMR matches my own personal experience. As such we'll have to agree to differ. She can hold the opinion that I no longer suffer from PMR, and I can equally hold the opinion that I do.

[PMRpro Ambassador in reply to MiniSpec]

If I used my CRP only - never been any different except when there was a cardia thing going on. ESR does move, just not out of "normal range". It has been agreed in the past that ESR can be valuable in PMR/GCA. I think she is being a bit sweeping to say it isn't used, many DO still use it and it is important to decide what is best for a given patient.

[cranberryt in reply to MiniSpec]

My CRP has never been elevated… only ESR. I guess that’s why I don’t have PMR either according to the 3 rheumys I have seen. (Insert sarcasm here. My age is the only reason they give me as proof I cannot possibly have PMR.) At 1.5mg after 4 years and I am sure we both know the difference in withdrawal vs. PMR pain by now! Thank goodness she didn’t pull your prednisone prescription and will let your GP manage it all.

[RachelJDH]

So sorry how bxxxxy depressing are our visits to a rheumatologist. Just awful. Sadly I don't think you can have Actemra unless you have GCA in uk. Hang in there tho. I have had other auto immune related diseases that have suddenly gone away. Thinking of you.

[Hunter134]

Would be nice to know if your reads are up. I go to my reumy tomorrow and iam wondering what he ll say? I've been on prednisone for 4 and a half years.Iam only down now to 7 and a half.Everyone is different.

[BridgetBaker]

Hi, firstly I'm so happy for you that your markers have gone down, but sorry that you're experiencing steroid withdrawal.

Did your specialist talk to you about other ways to reduce inflammation i.e. anti-inflammatory diet, gluten free etc, turmeric, green tea etc.

My hubby had topical steroid withdrawal, which I appreciate is different in nature, but the focus on reducing global inflammation I imagine will be very similar.