I first posted in 2018.. Since then I have managed to reduce from 20mg with pain and flares to 7mg. I am having nose bleeds and the ENT Consultant has told me to ‘get off’ the steroids.
I have for the last 10 days 1/4mg daily reduction. It has been agony. Shoulder and upper leg pain, brain fog and feeling tired and unwell. I don’t know what to do. As with many of us ‘oldies’ responsibilities of home/husband as well a daughter of 56 staying with us with brain tumour and other illness.
My GP is fairly relaxed about the pred but still encourages to reduce when I can.
Any advice would be appreciated.
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Pmrmolly2018
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The brain fog, and generally feeling unwell could adrenals stuttering especially as you are now down to the dose you are - have a look at this, and very slow tapering with small drops as you are doing is really the only way to get through that -
Nose bleeds aren’t that uncommon on Pred, have you had then all the way through or is is a new symptom? How is your blood pressure, that can be another cause.
If the shoulder and leg pain has only started since you reduced - that could be a flare…as you have probably realised.
Your GP sounds sensible in not rushing you, but perhaps he does need to make sure it is all down to PMR… you do seem to one of those unfortunate patients that has a stubborn version of it.
Thank you for your response. The nose bleeds started in November. Blood pressure checked and all ok. ENT this week with camera in nose (ugh!) found nothing wrong…just age. I have looked at your very very slow reduction plan and marked in my diary, I will try this. It is so surprising the problems from just 1/4 reduction.
Good nothing wrong with nose, but unhelpful comment from ENT consultant - do they think we really want to be on Pred…
As I said if you have a stubborn type of PMR then many have found that a very small reduction does makes a big difference.. and you do have a lot going on at home.
Excuse me bringing this back to me! I just wanted to say have you found, over the years, many cases of 'stubborn type of PMR'? If so, does it ever eventually start to move. I know I've only had this condition for just on 2 years, but I reckon I'm one of those people you describe and it's getting me down, tbh.
At the moment, I'm on 10 mg. Am just starting to v slow taper to 9.5 mg. I thought I was having a flare a few weeks ago but have decided now that it wasn't the case. I did up the Pred to 15 mg and have v gradually come down to 10 mg. I can function ok on 10 mg but God am I uncomfortable in bed at night and when I get up. My whole body seems to ache and is quite painful (not like actual PMR pain, thank heavens). I just am beginning to think this will never end😌
Many thanks, DL. Will do that. Btw, I was meaning, even though it appears to be stubborn and one gets stuck at a certain level of Pred (sounds like pmrmolly2018 may be stuck on 7mg for eg), do the stubborn cases EVENTUALLY start seeing light at the end of the tunnel and as you say it moves 'as in it goes'? I can see some cases are more stubborn than others and try to remember that you and PMRpro continue to reiterate that 'you will get there in time, just not yet'. Some days, it kinda feels never ending.
Unless you are very unlucky… for most people PMR finally goes into remission… and even PMRpro who seems to have had for so long, her’s is mainly manageable…
PMRpro, I s'pose during that amount of time, you have varied hugely on the amound of Pred you are taking? Also, have many of your rheumies have pushed for you to reduce too quickly, in your opinion.
I started at 15mg, miracle in 6 hours. I struggled for 4 years to get reliably below 10mg, eventually got to 4mg and then had a big flare taking me back to 15mg. No, been lucky with rheumies. They have a whole different outlook here - QOL is paramount and if you are struggling because the dose is too low, they encourage you to sort it out. There isn;t the same desperation to get you on MTX or something in any attempt to get you off pred. My rheumy is a world name in the field, has always said that he has other long term patients just most of them are at far lower doses of pred. There is gentle encouragement to get lower, No strong arm tactics or bullying. I'm no on Actemra - but still can't get under 7mg pred. So now, we will try less Actemra to see how low I can get on that and stay at 7mg.
Good question, after 1.3 years on pred (needed 30- 35 mg to get it under control last summer), so far I cannot get under 17.5 mg. I am attempting 16.5 starting today. For 2 days at 15 mg it all came back about 4 weeks ago - so I upped it back to 22.5 mg and now on 17.5 mg again. So sick of the yo-yo-ing..and now my knuckles are starting to hurt (just 1 though, so weird). I am guessing I am a stubborn case!
Needing such a high dose to control symptoms and so much difficulty in reducing the dose is often a sign that this ISN'T PMR at all but often an inflammatory arthritis with a polynyalgic presentation. And the knuckle starting to hurt may be the start of a more typical presentation.
I see the rheumy on Monday. They ran all the other blood tests last November, what tests should I ask for them to run again? It is the base knuckle of the middle finger, it is not red or swollen or anything, looks normal, hurts a bit when pressed or massaged very hard. Thanks
Don't know really - the trouble is there is next to nothing that is specific for anything, Rheumatoid factor isn't conclusive - can be positive and you be healthy, negative and you have a sero-negative arthritis. ACCP is better - positive you have or will have RA at some point later, but isn't so reliable for other sorts of arthritis. It all remains very reliant on the clinical picture.
But I'd say you are a candidate for trying methotrexate - you are really struggling to reduce your pred dose and MTX is the first-line gold standard approach for inflammatory arthritis. It is patients with an incorrect PMR diagnosis who probably do best on it.
Thanks, he offered it back in November (I then said I wanted to wait a bit to see if I could reduce without it, but that I would definitely think about it). Then didn't mention it at all again in March. They also refuse to get me 1 mg pills as I mentioned in a previous post. I think that would be worth a shot, going down 1 mg every 4 weeks maybe.
Honestly, compared to my neck, this knuckle pain wouldn't even bother me. It's not constant. I do knock on patient's doors with this area of my hand 100 times some days, it could be from that, I suppose.
Thanks for all of the help, you are DL are godsends!
Nope, on the non-coated ones. No justification other than they want me to go from 17.5 mg to 15 mg straight away. I see him tomorrow, so I won't leave until he agrees. I cut mine best I could into 1/4s last night (so took 16.25 -roughly - and I did a lot this weekend - gardening and a campfire/fishing, so sitting on unkind chairs - and so far feel decent. Granted, it usually takes 2-5 days for me to see if it isn't enough. If going more slowly doesn't work, I will try the Methotrexate.
That one knuckle pain is gone, I think it may be from knocking on so many doors at work..over and over again for many hours. I am off 4 days in a row this week, so that'll be a good "test" for that.
1/4 mg reduction daily is a lot. So you are going down1 and 3/4 each week and that is a lot at your level. I have found it better to go a lot slower. Working it out that would be reducing by 7mg a month.
I fear the ENT consultant is in cloud cuckoo land - it is going to take a fair time to get off pred now even if your PMR is fully gone since your adrenal function will be pretty compromised.
Since you have problems at home that require YOU to be able to function, if it were me I would ignore the ENT chap who is only considering HIS part of the picture rather than the overall view and stick with your very reasonable sounding GP. But I would also talk to the GP about what help you may be able to access at home.
Thank you. Your comments appreciated. I do have some help with shopping and some cleaning and GP aware of difficulties at home.
I have not been too worried about 7mg until ENT chap. He (didn’t speak very good English) was pretty scathing about the damage this can cause…..but I am 77 and need/want to live some sort of life…not zombied out.
Problem with some doctors they have this irrational aversion to Pred.. probably because they don’t fully understand it nor how beneficial and necessary it is to some patients.
7mg is okay-ish, but sure most doctors would say 5mg (if you can get there ) is better.
It is what I am aiming to stick at - at 7mg pred I am stable in terms of muscle pain, at 6mg after a couple of weeks I develop muscle pain in biceps and the left elbow bursitis flares up. The rheumy is perfectly happy at that. I have only achieved 7mg pred because I am also now on Actemra/tocilizumab (I don't live in the UK). I have been on pred for over 15 years, a lot of it at above 10mg/day, but we can't identify any lasting damage from the pred. I have no signs of diabetes or osteoporosis due to pred. But in that 15 years I have been able to lead a next to normal life and was able to care for my husband for the last 2 or 3 years of his life which put a lot on my shoulders.
I would ignore the ENT chap - and tell your GP you would prefer not to see him again if that is all he can come up with. QOL is crucial.
As others have said nose bleeds and bleeding more if you cut yourself can be common on steroids because of the fragility it can cause to the skin.It's very easy for the ENT Consultant to suggest getting off Pred quick but not as easy to do.
All that doctor has interested in is his part of the issue , it's often the case , but then they comment without thinking about your other medical needs which can often be more serious.
Plus, if you still have the condition that you are taking steroids for you have to assess the risks of having a nose bleed against the benefits of treating your inflammation and other health needs.
Really , that is far too fast , especially if you are still having flares and your PMR is still active, particularly as you are also having to cope with being a carer.
Go with DLs tapering advice instead.
What he should have done , if everything appeared normal was to give you some advice about reducing the risk of a nose bleed.
This can mean trying to ensure you move your head more slowly when bending up and down , picking things up or turning your head from side to side. Take care not to bump your nose or head .
It may mean making changes in moving or the exercises you do such as not using weights or carrying heavy shopping. Or not doing exercises were you quickly move your head down and up like touching toes . Try exercises with slower movement and keep your chin up and face straight ahead.
Drinking more water and having a diet rich in protein , vitamins and Iron can also help improve how fragile you skin can be.
Try not to blow your nose too hard and catch a sneeze when it's coming. If you have allergies , try and antihistamine to reduce the chance of sneezing and coughing . Rub your nose gently if it itches instead of scratching it.
When you wash your hair do it gently with your head face forward , no rapid rubbing and waggling , and gently towel dry while seated with your head face forward not bending down. Shaking of your head as you do these things can cause a nose bleed either at the time or a few hours afterwards.
Take care in using hair driers or brushing too.
Also try not to be to vigorous or aggressively move your head as you clean your teeth or wash your face.
Try not to get too hot or too cold , especially in your head . Excessive changes in temperature that happen quickly cause a quick spike in how strongly your blood pumps to those tiny fragile capillaries which can cause a break and a little bleed.
It's why some people get a nose bleed on hot days after coming from a cold shop or if they jump in a cold swimming pool after being out in the sun.
Warm up or cool down slowly instead so your circulation has chance to slowly build up to what it needs to do and the capillaries aren't forced so suddenly to the skin surface.
Keeping your head and shoulders gently supported on pillows so your airways are more open at night helps.
Doing gentle breathing exercises , especially if you feel overheated , have a bit of head pain , feel snuggly or you are stressed for a few minutes also helps you to relax and keeps your blood pressure . High blood pressure when you are tense or overactive can also cause nosebleeds because of making your blood vessels pump harder too.
If you take the precautions , just as you do to take care about not bumping or scratching your skin, the nose bleeds should be less common or stop altogether whilst you still get the benefit of taking your Pred when you need it and can taper at a speed that suits your body and your needs , rather than one that suits your ENT Consultant!
Thank you for your helpful tips. Certainly food for thought! Enjoying a good book earlier in bed…a lie in as not good weather and…..as always out of the blue, another nosebleed. They take up to two hours to stop with pressure…been to A&E three times since January. By the time they see me the bleed has stopped. It’s the insecurity that is stressful…and unpredictability…..and mess.
Sorry to hear of your dilemma. It's not easy trying to balance it all. I've been on 5mg pred for years. They tried reducing it but it wasn't worth the pain in the end. If my rheumatoid flares up, I put myself on 10mg for 2/3 weeks, till it settles, then slowly reduce back to 5mg. I've had regular bone scans. I'm 75. Hope this helps.
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