Muddled thinking: Hi, James here. Hoping for some... - PMRGCAuk

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Muddled thinking

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4 years ago•24 Replies

Hi, James here. Hoping for some help for my muddled thinking.

Was diagnosed with pmr in Feb, even though I knew something wasn't right from the september before.

Couldn't get out of bed, lift my arms up to do my hair, get in the bath, etc etc.

Was started on 15 of prednisolone, my doctor has left it to me to lower the dosage when I think I can.

Went to 14 and was ok for a few weeks.

Tried going down to 13 a few days ago and my body isnt liking it.

Is it normal to feel grotty and have some aches and pains for the first 3.4 hours until the medication kicks in?

I seem to be much better at around 11am onwards. I take the pred at 630/7isham.

How does one know when to start the next bout of tapering?

I have an upcoming phone call with a rheumatologist on tuesday and havent a clue what to ask him.

Id like to know what this is doing to other parts of my body though - bones, heart, kidneys.

Had lots of blood tests, the inflammation marker was very high and has now gone down somewhat, though not lower than 7 which is what doc said it should be.

The pred is making me turn from hypo to hyper (thyroidism). My levels are going towards making me overactive. So have started chopping a bit off the tablet.

My blood pressure ranges from 135-155 which doc says is borderline having to go on blood pressure tablets and my cholesterol is high apparently. (7)

Im fed up with what these steroids are doing to me. Im very, very down, got no family support, they just tell me to get on with it, its not cancer.

Sleep - whats that?!! Getting 4/5 hours on a good night. And thats broken.

Sorry for ranting on.

Appreciate anyones thoughts please.

Many thanks.

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24 Replies

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piglette4 years ago

Perhaps splitting the dose might help. It does work for some people. I agree the pred does have side effects, but the relief from the pain is the pay off. Sadly people are not really interested in other people’s illnesses and that includes families. I find it is not worth mentioning it. Have you any hobbies? Can you join in some webinars? I did a wine and cheese one the other day. By the end people were flat out in their chairs, it was actually very funny, I am not sure if they realised they could be seen. I sensibly just showed a still photo!

Thelmarina• in reply topiglette4 years ago

😂

PMRproAmbassador4 years ago

The morning pain is due to the fact that the new daily batch of inflammatory substances is shed in the body at about 4am. The sooner after that you take the pred, the less inflammation has been created and the less the pred must do. The ideal time to take pred (identified in a study) to avoid the morning pain and stiffness is 2am for prednisone and 3am for prednisolone - that means the pred is at its peak in the blood by 4am and so the inflammation never gets established. The result is no morning pain/stiffness. I get a special form of prednisone that you take before bed and releases at 2am - works brilliantly. However, it isn't available inthe UK and is very expensive in the USA so it means a bit of experimentation to find the best way for you.

Which inflammation marker is he on about? ESR or CRP? And if he knows you haven't got down to his desired level, why has he left you to get on with it yourself? You need to stay at the 15mg starting dose for 4-6 weeks until the marker has stopped falling - if it doesn't fall fast enough, he may need to tell you to take 20mg for a while to get to his desired level quicker. But until all the residual built up inflammation has been cleared out by the pred it will be more difficult to reduce the dose without pain returning.

This is an outline of a good reducing scheme:

rcpe.ac.uk/journal/issue/jo...

Management of PMR starts on p4.

The drops from 15 to 12.5 and from 12.5 to10 do work for a lot of people so it is worth trying - however, if the steps are too big for you, go back and try 1mg at a time. But you need at least a month on each new dose to be sure it is still enough. You may get some pain immediately you drop the dose, that is your body reacting to the change in dose and it should improve over the following week. If you notice PMR-type symptoms returning after a week or two and then getting worse, that is a sign you are now at too low a dose. It may only be a little bit too low to manage each daily dose of inflammation but if you ignore it it will build up again - like a dripping tap fills up a bucket eventually and it will overflow.

What a delightful family you have - they might be rather more sympathetic if they ever get it!

The mood swings are common with pred - but I can assure you they also happen with unmanaged PMR. Beware assuming that because the TSH is lower that your thyroid is working better - pred can suppress the TSH giving a false impression. Hyothyroidism can also cause similar symptoms so are they sure it isn't that? Pred also can make you feel hyper -not just the tyroid effects.

Don't worry about the rest of your body for now - the unmanaged inflammation of PMR can also do damage to your body so it is just as important to manage that. The effects will all improve as the dose goes down and if you are sensible it will go down - that means that because you feel hyper with the pred doesn;t mean you can go back to normal activities. You also have to grab sleep when you can - and worrying about it won't help.

There are some slowed taper approaches on the forum which smooth out the effect of the change in dose:

healthunlocked.com/pmrgcauk...

If you put up a post with more specific questions about the side effects of pred people will offer advice. The first and simplest is to cut your carbs, especially processed ones and added sugar, and that will help avoid gaining weight and the hunger pangs that are common with pred.

• in reply toPMRpro4 years ago

Thank you so much for taking the time to write in that length. I appreciate it and its given me a lot to think about.

The marker that was very high was the CRP.

Ive been on 15 since early February and dropped to 14 a few weeks ago. She did know that I was going to do that.

Yes - son with 3 kids under age 6, so a lot on his plate. I just dont mention anything about it anymore. Im never going to get any support or sympathy.

Ill talk to t he rheumatologist about the thyroid. thanks for advice.

And starting tomorrow Ill take pred earlier. What a great idea.

Thanks again.

DorsetLadyPMRGCAuk volunteer4 years ago

Hi James,

got no family support, they just tell me to get on with it, its not cancer

No it’s not cancer, but that doesn’t mean you don’t feel rotten and could do with a bit of support....

You may well find that your BP returns to more normal levels as you reduce Pred..

..sleep - you could speak to GP or maybe pharmacist - on their advice I took an over the counter sleeping aid every 3rd or 4th night - enough to relieve to sleeplessness, but not enough to get addicted. And try to get into a routine- no screens last hour before bed, warm bath or shower, decaffeinated drink, maybe listen to soothing music or read a book ( not a nail biter).....and just accept it...don’t lay there stressing, again, listen to music or radio. I used to wake about 5 and no chance of getting back to sleep, luckily it was summer, so many cups of tea in garden!

Also have a look through this - hopefully will help - healthunlocked.com/pmrgcauk...

And remember there are people on here who care...

• in reply toDorsetLady4 years ago

thank you.

Thelmarina• in reply to4 years ago

Yes, we do care. We know what it’s like from the inside! Your body does adapt and the relief of the debilitating pain gives you a new lease of life and protects you even as the Pred throws up its side effects. Hang in there! 🌺

Hosers24 years ago

When I was taking Prednisone, I split the dosage and took half at 2:00am and the other half around noon. It seemed to keep the morning aches and pains to a minimum.

Are you taking any prescriptions for high cholesterol?

• in reply toHosers24 years ago

no im refusing any statins or blood pressure meds until ive spoken to the rheumatologist.

Hosers2• in reply to4 years ago

You might want to explore the “Statins” site on Healthunlocked before proceeding with taking statins.

• in reply toHosers24 years ago

thanks

Lollybygolly• in reply to4 years ago

I found that statins accecerbate symptoms and have joined a clinic for reducing cholesterol - if you can’t tolerate statins there are other ways. Good luck! Before Prednisolone I was crippled up by a flare - so I’m a fan. The advice about cutting carbs was ignored by me till I tried getting into summer clothes - disaster so it’s a diet and no carbs or milk till I can do up the trousers at least.

SheffieldJane4 years ago

I recognise all of that - even the thyroid levels thing, ensure that you have proper blood tests for it and advice on dosage. If you just feel jittery, that will be the Pred. Put all this to your Rheumatologist, it is usual to feel steroid withdrawal symptoms for a couple of days when you reduce, they can be helped with paracetamol. You might do better with 0.5 reductions, with the help of a sharp pill cutter. I tapered, symptoms permitting, about every 4 weeks using the dead slow nearly stop taper, on the pinned post here. It can be effective to wake at around 2 am and take your Pred then, that heads off the inflammatory substance that tends to flood our bodies at about 4 am. The sleep deprivation is awful. I found that 10 mgs of Amitriptyline, taken 1 hour before bed gave me more, better quality sleep. This disease is very challenging, your family sound delightful. Make some notes for your Rheumatologist consultation, there is plenty to discuss. You seem to have been left very much to your own devices. Stick with us here!

• in reply toSheffieldJane4 years ago

doc put me on amiltryptiline before I got the proper diagnosis of polymyalgia. She said it was good for nerve pain. It did nothing for me after 2 weeks. 2 weeks wasted when I should have been on the pred.

• in reply to4 years ago

thank you for replying.

SheffieldJane• in reply to4 years ago

It would do nothing without the Pred to control the inflammation and pain and stiffness. It was helpful in addition to it for me. I seemed to be able to get more comfy. I think Magnesium can help as well and the calcium/vit D that you should be prescribed. DorsetLady found over the counter sleep remedies helpful. I’ve been listening to Tibetan chanting lately - it knocks me out.

• in reply toSheffieldJane4 years ago

im drinking more skimmed milk and getting out in the sun a lot, so hoping that stops me having to take yet more medication!

PMRproAmbassador• in reply to4 years ago

You can't make vit D from sun in the winter - north of Turin in Europe from September to May the sun isn't high enough to do the job, and even in summer it is only between 11am and 3pm. You do need a vit D supplement - one tablet does the job if you get the right one, I use a 4000 IU dose and that keeps me in the normal range. Pred suppresses your vit D level. And you need a bit of fat to absorb the calcium from milk, you absorb lots more with semi-skimmed than skimmed.

• in reply toPMRpro4 years ago

thank you. ill mention on my phone call about a vit d tablet.

Lollybygolly• in reply toSheffieldJane4 years ago

Greek Mountain tea from any online herbal shop - it’s amazing properties both gain sleep and less bad dreams. Lucky Greek shepherds eh.

Iamfedup• in reply toSheffieldJane4 years ago

I take 5mg for sleep and it’s brilliant rather than waking up at 4am I can sleep until 7

HeronNS4 years ago

For what it's worth, for years (sorry yes it is years) I was fine with taking a single dose at breakfast, an early, quite large, breakfast btw. Lately, I'd say since the beginning of this year. I've found the effect no longer lasts 24 hours. What has changed I don't really know, but there it is. I've started taking my full dose at 2 a.m., happily able to fall asleep easily afterwards. Yoghurt, water, and measured pred (currently 7 mg) all ready so I don't have to think. As you are at a higher dose I wouldn't recommend taking it all at once, especially before lying down again, but *if* you find simply taking pred a little earlier in the day doesn't do the trick it might be worth considering splitting and taking perhaps half your dose a couple of hours before the 4 a.m. release of pain-causing cytokines.

Kaaswinkel724 years ago

Hi James, the people on this forum are all supporters for you and for one another....we all know from the inside out what PMR is like, inclusive its unpredictability... you think you get a bit better then you get a flare. ...but also sometimes you get a good day! And some people get better quickly, you can never say......

One thing I must add to all the amazing information you already have received.......

If you are able to go for “ walks” you might never have done that in your life, but do it now if you can. Start with 10 minutes or so, twice daily, and build it up if you can. It might even help your sleeping... or lack of it....it helps your circulation, your bones, your strength and it is one positive thing you can do for yourself, and have control over. I am now four years in this journey and walk 40 min a day, but then...I have always done that. I also rest 40 min pm to be able to get through my day as well as possible.

Take care of yourself, really in the end that is what all of us have to do. Aroha, from Aotearoa/ New Zealand.

Horizon124 years ago

I'm sorry to hear you are struggling. Just wanted to stop by and give you moral support. This PMR thing stinks and I'm sure you will receive lots of advice.