Hi all, my rheumatologist has had me on quite a fast taper, I started on 60mg at the beginning of September and now I’m on 2.5mg (Pred). I’ve now lost my appetite, often feel nauseous, I’m so tired all the time and there isn’t a part of my body that doesn’t hurt, though I do have Fibromyalgia as well apparently. I was due to have an appointment with Rheumatology about now but hadn’t received anything and eventually after leaving 2 messages I’ve now got an appointment in June, I did mention about how I was feeling but they just said I can discuss that on my telephone appointment. It’s so difficult to know what to do for the best. Sorry but just need to put it all out there as I know you will all take it seriously, rather than me being made to feel like a complete time waster.
Tapering: Hi all, my rheumatologist has had me on... - PMRGCAuk
Tapering
Oh dear, you’ve had it all haven’t you? What you’re describing may be poor adrenal function. No matter what other steroid sparers you’ve been put on they don’t help with regaining adrenal function. Due to the high doses of Pred and anything above above 8mg your adrenal function is switched off because you don’t need it to work. Take away the Pred and it really needs to and take away the Pred too fast, the adrenal glands don’t have enough time to catch up. It is a common problem, even in those not reducing as fast as you. Adrenal insufficiency can really make one feel so unwell. I remember feeling nauseated, weak, emotional, so fatigued and needed sleeps in the day. It can be life threatening and can creep up and you’re quite unwell before you know it. Do speak to your GP and perhaps bring up this topic as many docs seem to forget this bit or underestimate it. Some don’t think it exists after Pred but any website on adrenal insufficiency will state steroid therapy as a cause. Why are you having to reduce so fast under 10mg? Have a read of this healthunlocked.com/pmrgcauk...
My rheumatologist is very insistent that I reduce this fast, to the point of stating that if I didn’t stick the plan then there would be no point of continuing with TCZ. Like you I could just lay down no go to sleep right now and I’m someone who has never napped in the day or ever felt the need to. I’m lucky in the respect that I have a really good GP but unfortunately she is on holiday until the end of next week.
Perhaps your GP can do an early morning cortisol test? Easier than an Synacthen test in hospital and will give some of an idea as a starter. GP’s should be able to spot adrenal insufficiency. Perhaps see another GP? I have had Fibro on and off for years and it was particularly bad until my adrenal glands started doing something useful.
The beginning of the taper is fair enough - it is the reduction from 7.5mg that is the problem where adrenal function must return and not everyone will cope with that speed of reduction. TCZ does nothing to encourage adrenal function itself although the shorter the time you were on pred, the quicker it is likely to return as the amount of pred falls. But we aren't machines ...
I don't like the reports I hear from this group that are next to blackmailing patients to do what they dictate.
It was a cross between blackmail and bullying and when I got upset he decided I must be depressed so therefore I had Fibromyalgia and not PMR.
But depressed mood is a feature of PMR - in fact, almost all inflammatory disease.
Yes exactly and the Bly reason I was upset was because he was having a go at me that continued for about 10 mins. He definitely will see a different side of me if he does it again.
No doctor would do that to me without a complaint being made. And he seems to be making a habit of temper tantrums.
I think the trouble is in those situations we are so shocked that it is happening that the brain doesn’t get itself into gear to say, “excuse me chum, what right do you have to speak to me like that”. The already assumed power balance by their very position, which shouldn’t be the case, makes one try to appease. One gets home and the and the kicking self begins.It might be controversial but seeing rude or dismissive doctors in action during my career, one thing that was common in nearly every case was a female patient and/or over 50, especially with anything that involves pain.
That is so true, we are brought up to respect professional people and yes I came out of there in total shock as to the way he had spoken to me. When I came out and starting to really take on what had just happened, I actually wanted to go back and give me a piece of my mind and now that I’m on medication that only the hospital can prescribe he has me over a barrel and yes I definitely fall into that category. Do you mind me asking what your career is/was?
A nurse working in various departments in hospital, then palliative care in the home, then community, agency nurse all over the place, then GP nursing. Latterly I was a manager of a cancer help centre where we supported those with cancer and in the end, other life shortening illnesses that didn’t get a look in elsewhere. I trained initially as a scientific officer specialising in pharmacology and biochemistry but that was so long ago.
Wow you’ve certainly worked in some really interesting roles and with your training you probably have a very good understanding on symptoms and treatment
But not with GCA or PMR prior to diagnosis. Knew how to diagnose GCA but after that it was a blank. PMR was a vague thing that popped up now and again but that was it. As for steroids, I saw people on them quite a lot and knew that taking blood from them was often difficult and caused problems with skin and wounds. As for the experience of taking them, not a jot.
I think you should talk to your GP about Adrenal insufficiency. You have the classic symptoms and the aetiology. You need to have a Synacthen Test to see if your Cortisol production is capable of recovering. If your Adrenals are in trouble it could lead to an emergency - Adrenal crisis - so it must be treated as a priority. It is a simple painless procedure ( I have had it twice). A cannula inserted, bloods taken before and after an Adrenal stimulating chemical is introduced and a half an hour wait - then you can, take your Pred.I failed my first test and was given an emergency Hydrocortisone injection kit, in case of collapse. The second test showed signs of recovery. The test takes place in hospital in the Endocrinology department. It is good to involve an Endocrinologist at this stage. Mine was lovely and still keeps in touch for future needs.
As Snazzy and SJ say - all those symptoms would point to adrenal insufficiency but since I assume you were diagnosed with GCA originally, I wouldn't be surprised if there isn't a degree of PMR as a symptom of the GCA as well contributing to the all-over pain. Some people have PMR as a symptom of GCA, some don't - and some develop it late in the journey as they reduce the dose into PMR dose territory. When did the "hurts all over" start - dose I mean?
All very well saying you can discuss it at the June appointment - but you could be at risk of an adrenal crisis if you were subjected to an emergency in the form of accident or illness or even emotional trauma. It may be worth speaking to your GP - if that is an option, GPs seem to have become rare birds - but definitely write a note that you have been on steroid therapy and are now at a low dose to carry with you and pin on the fridge. This is just in case - but if you do feel really unwell don't hesitate to call 999 and tell them the situation and that you are concerned about an adrenal crisis. Paramedics are trained to deal with such things.
After I was diagnosed with GCA I developed other symptoms that they said were PMR but when I had my last face to face, my consultant decided I have Fibromyalgia and not PMR. The real major fatigue, nausea and all over pain has been at it’s worst this last couple of weeks from when I started alternating 5mg one day and 2.5mg the next and then just 2.5mg a day from Wednesday. I would normally go straight to my GP but she’s on holiday till Thursday next week but I will be getting an appointment with her as soon as she is back. She has been in touch with Rheumatology on my behalf as I appear to have now developed neuropathy in my feet.
No wonder your adrenal function is struggling reducing at that sort of rate under 10mg! Tapering at more than 1mg per month is predictive of relapse in PMR. They are crackers!
And how does the consultant distinguish between fibro and PMR - especially in a situation where PMR is far more likely? When I finally got close to knowing what I had, the differences between fibor and PMR were so small that only a trial with enough pred showed the difference. Fibro doesn't respond to pred, it isn't an inflammatory condition, Nor does it lead to raised blood markers as a result. The so-called trigger points in fibro coincide with the trigger points found in myofascial pain syndrome and it is more common in PMR patients although it can occur on its own.
You are far from a time waster. How long is it until your telephone appointment? 2 weeks? 3 weeks? 4 weeks? If you feel it would be detrimental to wait you might consider writing a respectful letter over the weekend to your rheumatologist or your GP as has been suggested ( keep a copy) stating what you would like to happen. I had a positive response when I did that several weeks. I gave my reasons for disagreeing with a tapering plan suggesting my own. In your case it would be adrenal concerns. The feeling of being dismissed is stressful and frustrating.I hope you gets answers soon and send my best wishes.
It’s 2 weeks till my appointment, I stupidly thought that as my rheumatologist was one of the leading consultants on PMR/GCA I would get brilliant care but unfortunately that is not the case and they do not like you questioning or disagreeing with their instructions or even phoning with queries or concerns.
There are a few people on the forum with the same experience! I wish I knew why this person has started doing such strange tapering ...
Yes so do I as it goes against on this forum which I know he helped set up.
How old is he?
Same age as me I think.
He’s not young but then neither am I. The first time I met him I was with one of his research fellowes who I found to be pretty good and he popped in just to discuss something though nothing important and he seemed really nice, the 2nd time I was again with another one of the research fellowes and that time he was very, I don’t know the right way to put it but he basically ignored me and all he said directly to me that he hadn’t met be before. The one to one with him was just horrendous, I dared to ask him a question and his answer was “interesting” and that was it. I dread it is I have to see him again.
I'd say that is concerning. I know the covid situation has made this more difficult but maybe it's possible now: arrange for a family member or close friend to come with you if there is a next time. The stated reason is of course our usual one, to help you remember what he says and provide general support.
Oh dear, because I think I was advised to taper too quickly by GP and private consultant and things getting worse rather than better I wanted advice from "a" leading specialist consultant rather than a general rheumatologist, so I set up a virtual appointment. I am really worried by Helipad's post. (Very sorry to hear about your difficult experience, H.)
Before I didn't understand enough before to ask meaningful questions - I just did what they told me. Now I want someone informative and supportive I can talk things through with. Not "they do not like you questioning or disagreeing with their instructions or even phoning with queries or concerns".
I don't know if it is the same person but I know they are connected with PMRGCA... I will go ahead but perhaps I should frame the consultation as a review for general advice rather than ongoing treatment plan.
As SnazzyD has link my post re adrenals, won’t add anything, but undoubtedly what it is, and caused by too fast a taper from10mg down. But, have to say the whole tapering plan sounds suicidal....and dismissing your concerns saying they can be discussed later is not on!
I’m totally with you on that one.
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