I feel like a bewildered child of divorcing parents! My lovely Rheumatologist seems to think that I should stop fretting about the 5 mg a day that I am down to: it’s taken nigh on three years! And to be honest I think he would have been quite prepared to have me stop tapering at a significantly higher dose.
On the other hand my gastroenterologist sighs and looks sad and says things like “we’ve got to get you off this pred” and “if you’re not careful you’ll lean against a walll in ten years time and your spine will crumble” ( or words to that effect!)
My neurologist just smiles and sits firmly on the fence...
Does this sound familiar to anyone?
Lots of love to you all
Bon x
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Bon1
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Love your analogy! I wish more doctors recognised that sometimes they need to consider us as a flock of dependant ducklings, not a list of mature adult patients.
Generally I filter doctor's advice a bit. So a surgeon will frequently propose a surgical solution, because that's what they know best, and suck their teeth at non- surgical options. Same goes for rheums and gastros. Your rheum will care much more and know much about your bones than a gastro. A gastro will view things from the position of their effect on your digestive tract, and osteoporosis is not their speciality.
Everything I've read suggests that longer term use at 5mg and under carries a low risk. Obviously the lower the better, but you have to balance your risks and benefits. Perhaps ask for a DEXA scan to be sure what condition your bones are in?
Yes and No. My Rheumy put me on 5mg of Pred as I had to stop Hydroxychloroquine (itching like crazy), and I’ve some issues about MTX. She sent me off for a bone density for a baseline. The result was not good (genetics) - so I weaned myself off the Pred, now taking nothing and not feeling great, but I see my Rheumy in 2 weeks.
However, I had a discussion with my GP. 5mg is “low dose” and in someone who’s bone density is good, may not necessarily be a disaster. I have a friend who was taking quite large amounts for PMR, who’s bone density has only been marginally affected, and she’s 70yo - now down to 5mg/day. Obviously, for me, who’s only 62yo and has a problem with bone density, 5mg/day may be too much.
So, ask yourself the question as to whether you have sufficient information to make the decision for yourself and feel comfortable about it. The basic information needed is: bone density, diabetes risk, blood pressure and cataracts, along with weight gain. That’s the list I went through. I’m sure there will be thoughts offered by others, all the best, cheers Deb
My problems is my rheumatologist retired 1 year after my diagnosis. She had a plan which she shared with me...... MTX and steroids in the short to medium term and monitoring. New rheumatologist comes along....throws up her hands in horror at the steroids and starts me on a steroid taper. I left her consultation room feeling as if I had been chastised for being on steroids !. She doesn't seem to have a plan other than getting me off steroids and I'm floundering at the moment.
Low dose prednisilone , 5 mgs or under , does little damage medium term.
The alternative is often left out of the equation when running down steroids.
Your first rheumy was actually more on top of it. New research actually recommend low MTX+low pred for a period up to 6m especially when newly diagnosed. So here we are in the hands of different doctors and different treatment methods that really can make a big difference!
I believe my old rheumatologist was more focused on relieving my symptoms and giving me a quality of life. I'm seronegative , no flammitory blood markers , but have an aggressive RD (apparantly).
New one focuses on blood results which are fine apart from low WCC. Lower drugs , get moving ...whilst I'm hot, flu like , throbbing feet and hands ...physio won't work with me for now until I'm stable.
I'm in the process of organising a private consultation at the moment. Weary of it all.
I can only imagine how hard it is trying to make sense of it all as in fact specialists themselves are bewildered in many ways. Low mtx 10 mg + low pred is not only for symptom relief it has in fact been shown to be more efficient against progression and erosion!
It was my Rheumatologist who strongly advised that I came off steroids. Over a period of 30yrs I'd on and off prednisone. Now my spine is collapsing. It was a succession of GPs who put me on Pred, short term it helped, sadly long term it has come against me. The Rheumatologist wasn't happy that I hadn't been monitored, that I was kept on steroids for so long. I have friends who are on maintenance doses of prednisone and it's carefully managed. Pred does a good job, but not for as long as I was on it. Both specialists have a point, the key thing for you is what difference taking prednisone makes to your life.
I was put on steroid injections 3 x a week when I was dx age 6 in 1971. These continued until I was 11. Since then I've taken oral steroids and had Depomedrone injections now and then and in 2009 was on 5mg Prednisolone for 3 years. I don't have osteoporosis. There's a lady in our village who has had a kidney transplant and will be on Prednisolone for life.
I agree it would if nice if all our medics sang from the same hymn sheet with regard to steroids - it's all so confusing and I'm very easily confused these days! Five or six weeks ago when I was in a bad flare, I got an 'on the day' appointment with GP who prescribed a week's course of Prednisolone 30mg. but told me to check with Rheumy Nurse helpline before taking it that they had no objections to this (because he knew I was waiting to start on a biologic). I said that I thought that sounded like a high dose but he reassured me that it was not and I could just stop it suddenly after such a short course. Luckily, Rheumy nurses always ring me back within 24 hours and I was advised to take only 15mg. daily and let them know how I was a week later. I was little improved, so they advised upping the dose to 20mg. for the next two weeks, at which point I already had an appointment at their Biologic clinic. Flare was 75% better by then, so I was told to reduce Pred back down to 15mg. daily (then just stop them when Biologic arrived) and they asked GP to prescribe. When I collected script from pharmacy, GP had arbitrarily added in Adcal-D3 calcium tablets! There was no explanation for this from the GP, but Pharmacist advised it was to prevent bone density problems, so I reckoned there was no harm in taking them, even though my Dexa bone scan was normal. I've had one earlier short course of Pred but wasn't given calcium then. As it's turned out, I started suffering severe heart-burn with the steroids so made the decision myself to reduce the Pred to 10mg. and, hey presto, the heartburn's stopped and the flare had not returned. I'm going to reduce them again to 5mg. next week then stop them completely before I start on Benepali. Not exactly looking forward to Benepali, after reading very recent posts about how it can sting! I've had no issues at all with giving myself the MTX via Metoject pen for the past 18 months, though Rheumy is adding in the biologic because of my frequent bad flares. I'm anti-CCP and RF positive BTW.
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How much weight do letters from Rheumys and doctors have with a successful PIP application?
Still have PMR...now RA added on (maybe) ...wanting to know why long term, low dose prednisone as monotherapy is an issue.
Pip
Should I go to Doctor?
