I had my second appointment with the rheumatologist and left feeling confused. I’ve been taking 20mg prednisolone for two weeks and the improvement has been amazing. I no longer waddle when I walk and I’m not being kept awake every time I move in bed. I can reach up to open a window when I wake up and can get out of bed without having to slide over the side and roll. All good. This I tell the rheumatologist who says my bloods are still not showing signs of inflammation so maybe it’s not pmr and he wants me to stop the preds for two weeks and have a pet scan. I say I’m feeling so well I just want to continue with the steroids and get on with my life. He then talks about steroids as though they are going to ruin my life and he wants me to start to taper off in 4 weeks….15mg for 4 weeks, 10 for two weeks then stop. Reading other posts that seems a bit drastic but should I try it or go for the much slower taper that others have had success with. I feel so mobile at the moment I don’t want to go back to pain and stiffness and are steroids going to ruin my life if I stay on them for a few months.
confused: I had my second appointment with the... - PMRGCAuk
confused
oh dear, well if you were one of those who don’t show raised markers and being on a dose of Pred that is dealing with your symptoms beautifully, you’re not going to get them raised, are you?
Regards the taper, if you don’t want to stand your ground you will have reduce fast like they want and have a PET scan. It will also add some weight to your argument if your symptoms come flooding back. You mention “successful” tapering plans and being on steroids “for a few months”. PMR doesn’t burn itself out in a few months, it is more like years so these successful plans cover this kind of timescale. The steroids don’t treat the PMR like antibiotics treat and infection, they are just safety net to stop the inflammation doing harm while this autoimmune condition rages on. The idea of tapering after you have had sufficient high dose to normalise the inflammation levels initially, is to find the lowest dose that you need as an individual that copes with your current level of autoimmune activity.
It might be worth asking the doctor to explain specifically how steroids are going to ruin your life. Things like diabetes and weight gain can be prevented with a very low carbohydrate diet. Also, immobility has big risk factors and so do the large doses of alternative pain killers you will have to consume to get by if they work at all. Only steroids are really effective with PMR.
Well, if it IS PMR - and the evidence so far is pointing that way - a taper like that will do zilch except let all the symptoms back. If you didn't have raised markers to start they are not likelu to rise while you are on a decent dose of pred that is controlling symptoms - it does that by combatting the inflammation. Does he not know how it all works?
Actually. after only 2 weeks you don't need to taper like that, you can just stop or at most have 10mg for a week, 5mg for a week and stop. Higher doses than that are used for similar times for chest infections and then patient can stop as there is no effect in that time on adrenal function. If you do that and have the PET scan you will have your answer - but why he didn't do that to start with is a good question to ask. It is always best done with a steroid naive patients.
But PMR doesn't last for a few months - it is more like a few years. However, I have an unusual form of PMR which is still there after 18 years, I have been on pred for 14 years, my bone density hasn't changed any more than you would expect at my age, I don't have any sign of diabetes, I am overweight but I have been all my life and I can lose weight even on higher dose pred if I am really strict. Now my pred dose is low thanks to Actemra, I have lost 4kg in the last few months. I had gained weight with untreated PMR - I didn't gain more when I started pred and I lost a lot of it when I went low carb. Nor do I have cataracts due to pred - they are starting to appear now but I am 70, not surprising.
All I can say I am gobsmacked at the seeming lack of knowledge of your rheumatologist. They seem to be assuming you do not have PMR even though the steroids work, based on normal inflammation on blood tests. If the steroids work of course the inflammation levels should be OK. You may even be one of the 20% whose blood levels never get raised.
I felt so positive seeing him for the second time with the steroids making me feel so good as he’d said the two week trial was a good test for pmr and I’d felt it was a success. His negativity made me doubt things but I’m going to continue with the steroids and if the pains and stiffness continue to stay away I’ll feel confident I’m on the right track and there is nothing more scary going on. I know the rheumatologist is doing things by the book but I feel he hasn’t had a whole lot of experience
In fact a lot of people manage without a rheumatologist and not much help from their GP. If you continue to receive steroids, with a bit of common sense and this site you probably could taper quite happily.
thank you Piglette for that. Reading comments re rheumatologists I cancelled a first appointment to see them. I rarely see /talk to a doctor, when I did he didn’t seem knowledgeable so I told him to Google it!! It’s this forum that has guided me through my 6yrs of ups and downs and given me confidence to self medicate. Thank you all so much
Sadly I'm not in the least bit surprised - I'm in that 20% club and they really don't like it !
Sadly it seems a lot of medics are not aware. Seems amazing to me.
Bit more than a few months, but three years on, no, they are not at all necessarily going to be ruining your life. Side-effects are a list of maybes, some more common than others. I actually haven't had any discrete physical ones, bar some moulting at 20 mg. Limited energy and emotional volatility, but as Snazzy says, even if you do get weight gain or (pre) diabetes, that's controllable.
On the other hand of course, my life would be devastated without Pred. Sometimes I wonder how the odd - very odd - medic reported at this forum gets to be considered fit to practise.
Like Mayadill I do sometimes wonder how some clinicians we hear about get passed fit to practice. Those little white tablets, rather than destroying my life, gave me my life back. From being carried into hospital to leading a relatively normal life in a few weeks. Possible side effects are just that "possible", some sufferers get some, some get very few, if any, and some unlucky people get more. Even those that people do get can usually be mitigated by changing diet and/or lifestyle. I've never had a Rheumy, been managed perfectly well by my GP's.
I’ve could have written this post myself. Told to taper off. I’ve been in agony ever since. The dosage I was on isn’t even helping atm. My CRP level was normal but blood viscosity high. Dr’s appointment again today 😞
You say 'he wants me to start to taper off in 4 weeks….15mg for 4 weeks, 10 for two weeks then stop'. So, you will have been on 15-20mg for 6 weeks, then 10mg for 2 weeks? I'm not a medic but if you have been on Pred for 2 months and then suddenly stop, you could find yourself having to deal with sudden steroid withdrawal and possibly an adrenal crisis.
I didn't have abnormally raised blood markers so my GP said that I could try steroids for a week or possibly 2 and then, if the pain and stiffness didn't go away, I could stop. It did go away and I was on Pred for nearly 3 years. All fine now though.
I would be confused too. I needed to be on my initial dose of 20 mgs before beginning a slow taper. This went well until 7 mgs when I got stuck for a year. Something shifted and I was able to get down to 6.5 mgs and then gradually to 3 mgs. I experienced no flares on my PMR journey. I was then diagnosed with GCA/ LVV and this has been more fraught. I doubt that significant inflammation would have shown up during my Pred treatment.
Your description of untreated PMR is text book, I would know it anywhere. The response to Pred is a diagnostic factor. This doctor does not appear up to date with treatment protocols. I would be seeking a more enlightened opinion.
It's a difficult call because in likelihood you will be on steroids for a very long time but if you can get down to 5mg then it significantly reduces risk. I tried lots of things but one steroids worked for me. The initial euphoria of pain/stiffness relief has been muddied by poorly managed dosing and the side effects are equally debilitating. My advice is to trust your instinct, keep a record of your symptoms. This his wonderful forum has proven to more reliable than any GP/rheumatologist for me to date
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