Advice need for tapering please
Posted , 10 users are following.
As most people start by saying - I've been reading your posts but I've not written any myself to date. I need to cut a long story short but the background may help with context....
November 2014 I started to feel very unwell within about 3 weeks - all the symptoms of PMR but no real stiffness, just flu like, debilitating pain. However, I also had a breast lump so when I saw the doctor, all the focus, rightly, went on treatment for breast cancer. I had chemotherapy Jan - May 2015 and Radiotherapy July 2015. Then, the PMR symptoms really kicked in again by the November (stiffness included) and I saw a rheumatologist who put me on Prednisolone - increasing up to 30mg! I am only a very small, 50 year old woman and my oncologist was shocked at this dosage! I was determined to taper down and got to 5mg in November 2016 when I had a massage flare up. Felt suicidal, horrendous pain.... you all know how it is! So, on the GP's advice, I went up to 11mg and have been pretty stable since then although I've been studying and being sedentary each day makes me feel quite toxic and shaky. When I move about a bit more, I feel better.
So, since finishing my studies at the end of April, I decided to start the 'dead slow' tapering guide found on here. I've been doing it so gradually between 11 and 10 mg for the last few weeks. However, this last week, the pain has returned and I am now really, really struggling. I am going away for a few days break on Friday and I am trying not to feel desperate! I had been feeling so well (and obviously made the mistake of being super busy!) so I'm quite sad that such a gradual reduction over a few weeks should lead to me feeling like this :0(
Wondering what your collective wisdom would be? Stop tapering? Increase by 1mg in the afternoon to give me a boost and stop the pain to enable me to go away? I know withdrawal itself can cause pain but when I pressed through last November thinking that I could make it, the pain become almost unbearable.
Another thing, I'm not entirely confident in my rheumy as he had written on my notes that I might have Fibromyalgia without telling me (a nurse read the comments to me)! I tried to ask him about this and why he had prescribed Prednisolone, as I understood it wasn't effective for Fibromyalgia, but he was evasive. However, after my last flare up, and increasing the dosage, my symptoms were relieved after a few days, suggesting PMR? My inflamatory markers have always been raised but I am aware that I have also just come through cancer so this can cause the same blood results.
Anyway, very sorry, that was a lot of information...... hope you can help, lovely people!
0 likes, 16 replies
pat38625 Rudivl
Posted
Regards Pat
Rudivl pat38625
Posted
Thanks so much Pat for your encouragement. I will keep you posted! I wasn't sure about posting here but there is so much collective wisdom from you all, it made sense to pitch in finally!
EileenH Rudivl
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Using the dead slow approach is meant to avoid the feeling awful part of reduction! I don't like the sound of your rheumy - I object to dx's I'm not told about! And you are quite right - if pred worked, whatever dose, it wasn't fibro. You can of course have both if you are really lucky!
The being really really super busy is enough to lead to it all - lesson learned????
And if you are going somewhere for fun - don't be silly, go back to 11mg at least and MAYBE day or two of a bit more to clear things out first. But however slowly you reduce you won't get to a lower dose than you need to manage YOUR inflammation level. And at present - that appears to be 11mg at least. It doesn't mean you won't get lower - just not yet. You ahve done it before and you will do it again.
Rudivl EileenH
Posted
Thank you, Eileen. Good advice and yes, I hear you about being super busy. It was just so good to feel back in my skin and I had a lot of catching up to do! Lesson learned! It's about pacing, I know ;0)
I think I may try a top up of 1mg in the afternoon to see if I can calm the flare down. My husband is so looking forward to this trip and has been planning it for ages. With me feeling so much better, things were looking up! It seems crazy that this tiny reduction - only 1mg on a 6, 5, 4, day regime - could make such a difference? I will stay on 11mg at least til I get back..... Many thanks :0)
Anhaga Rudivl
Posted
Your comment about the 1 mg top up made me think perhaps you'd do well with making a split dose like that a regular thing for a while. It depends, of course, on the daily cycle of your pain. If you feel really horrible in the morning, then it's not a bad idea to take part of your daily pred at suppertime or so (not too late so as not to disturb your sleep). On the other hand if you are feeling wretched by the end of the day your total dose may not be quite high enough. I'm sure there are people on the forum who have tried various ways to take their dosage and they'll be able to offer better advice. I understand that the standard dose splitting, which people tweak to their own ideal pattern, is to take 2/3 pred in the morning, and 1/3 in the evening. They start by having a day with the full dose in the morning, then 1/3 that evening, followed by 2/3 the following morning, and so on.
Only once your pain is under control should you consider tapering again. And perhaps only by .5 mg at a time?
Hope you feel better soon, and can enjoy your well earned break.
EileenH Anhaga
Posted
And exactly WHEN the second dose is best depends on YOU and YOUR PMR. Some people can take pred before bed and it doesn't affect their sleep. others need the top-up bit much earlier in the day, not to help the pain but to be able to get a good night's sleep. Some find just 1 or 2 mgs is enough as the second dose to manage the mornings better. And others never need to split - we are all different!
Rudivl Anhaga
Posted
Thank you Angaga, yes, I've split the dose when I was tapering last November. I will try that before upping the dose again :0)
donna25417 Rudivl
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Rudivl donna25417
Posted
amkoffee Rudivl
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I found success by splitting my dose. I'm? on the same dose you are on and I reserve 2 mg to take in the evening and then take all the rest of it in the morning. So that's 8 mg in the morning and 2 mg in the evening. For some reason that just worked. Also I only dropped by .5 mg at a time
Rudivl amkoffee
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Thank you, Amkoffee - I'd love to drop by 0.5mg but I can only get 1mg tablets (UK). Do folk cut their tablets? They are SO tiny!
Anhaga Rudivl
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You can cut tablets provided they don't have an enteric coating. A simple pill cutter will do it, other people use knives or even their thumbnails, although I don't know how! I found using my pill cutter was a bit of a learning process, but now I almost always get two good, uncrumbled halves.
EileenH Rudivl
Posted
Instead of cutting tablets to get 0.5 - though it is possible to get a pill cutter that will do it with some practice - you can use this method of spreading the change in dose over a longer period. It is being used by rheumatologists in Leeds in a clinical study and has worked for many many patients already:
https://patient.info/forums/discuss/reducing-pred-dead-slow-and-nearly-stop-method-531439
If you are in the UK you can also get 2.5mg tablets, Actavis make the following doses: Prednisolone 2.5mg, 5mg, 10mg, 20mg, 25mg and 30mg Tablets. Then down to 2.5mg you can get half mg doses by using a 2.5mg plus 5mg or 1mg plain tablets (available from other suppliers) to make up the rest.
EileenH Anhaga
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The thumbs trick for breaking tablets is to place a biconvex tablet (rounded on both faces) on a hard surface and press on opposite sides. It doesn't work for tablets with a flat face though.
Rudivl
Posted
Follow up: I have posted the comment below to another thread as I was interested in a comment Eileen made but, I thought I'd also post it here as it is the continuation of my PMR story! Thanks guys!
''Sorry to hijack your thread, Andrea, but I’m really interested in your comment Eileen - ‘you need at least 5mg above where a flare happened if it was due to reducing too far.’
I’ve been on 11mg since a flare up last November when I had reduced (a little too quickly perhaps!) to 5mg. Since November, I’ve been OK, definitely not completely pain free, but coping well and energy back, no stiffness. I wrote a while back as I knew I’d been doing too much, started feeling ill again with pain levels rising. However, that time (May) I managed to rest for a week and things returned to ‘normal’ again.
These last 2 weeks, I have begun feeling unwell again. Pain levels rising in my shoulders and hips (feel it in my buttocks). I also have tendonitis in my arms. This week I am now beginning to stiffen and feeling like I am shutting down in terms of what I’m able to do. I have been completely resting but, unlike in May, it does not seem to be working and it’s definitely the PMR kicking in big time!
My questions are:
Should I increase my dose without consultation with the doc - I don’t see him again until September. I was thinking about asking for a blood test but I know these don’t always show raised markers as it takes time for these to catch up with inflammation.
If yes, what should I go up to, as I was doing ok for 7 months on 11mg and had really wanted to begin tapering (DSAS method, obviously!), not increasing!
I was interested to read recent comments about the dangers of leaving rising inflammation and wondered if this indeed was good wisdom instead of soldiering on in pain. Particularly, I am concerned about the link between inflammation and cancer as I have just been treated for breast cancer and the PMR arrived at the time of my diagnosis. Too much of a coincidence, perhaps?
Sorry for the long post. Well done to those who have kept reading!
R x ''
EileenH Rudivl
Posted
And I said there:
"There really is no point in soldiering on in pain - you have to have the relief to balance out the downsides of pred.
I have to say - if your PMR arrived at the same time as the BC are they sure it isn't linked?
Where are you? In the UK? How helpful is your GP? I would ask for a blood test - you never know, it might show something. But PMR can flare because of increased activity in the underlying autoimmune disorder as well as because of reducing too enthusiastically. And you could try a few days of a higher dose - if it works you can present the result of the test to your doctor. If it doesn't - there may be something else going on."