PMR or steroids to blame

[Chrissy1953]

Hi. I have not exerted myself too much apart from aqua fit twice a week. Yesterday went on an Ikea trek and although it's slightly happened before I started to have a weird fuzzy feeling in my head. Felt slightly dizzy and nautious. Has anyone else experienced this ? I am down from 15mg prednisilone to 10 over the last 7 months.

[Brixhamhampster]

Chrissy1953. If you mean from an IKEA trek that you went round the shop then I had a similar experience going round a very large primark when I was taking about the same dose as you. Now that I am down to 3mgs a day I can go round for a little while but don't want to stay for long. I put it down to the lights and that when we are shopping we are constantly turning our head from left to right. I had to sit on a seat for about thirty minutes before the dizziness and nausea wore off. I have really lost interest in shopping now. My husband is delighted! This is only a sympathy post and you may have to wait for the experts to advise on anything more medical. Best wishes.

[Celtic PMRGCAuk volunteer]

Chrissy, depends on what you mean by a "trek around Ikea"! All I can say is that there is no way I could have managed a trek itself whilst on 10mg. At that dose, there is bound to still be inflammation circulating - the steroids are not curing anything, they are just damping down that inflammation whilst PMR takes its course. It sounds as though you may have pushed the boundaries a bit here - after all, you are within the timescale when it can be quite common to experience flares. The fuzzy head and dizziness are symptoms I experienced in my early days of treatment on high dose steroids (GCA and PMR), but the nausea was a symptom pre GCA diagnosis.

However, you mention having slight episodes of dizziness and nausea previously - hopefully, you have checked with your Dr that your blood pressure is within recommended guidelines?

Do get it checked out - hopefully it is just a warning that you just overdid things after just 7 months on treatment. Feel blessed that you can at least manage aquafit twice a week.

[Rose54]

Hi

I have just had to increase my steroids due to a flare and experience fuzzy head and sickness feeling about a few hours after taking steroids. This happened when I was on higher dose and disappeared after getting down to nine eventually less as day goes on so I am sure mine is steroid related .

I have also cut down on coffee as found recently I sometimes feel nauseas after drinking coffee so only have two cups a day rest of day drink flavoured tea which has helped.

Rose

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[DorsetLady PMRGCAuk volunteer in reply to Rose54]

Hi Rose,

I stick to coffee for my mid morning treat! Earl Grey or herbal teas rest of time.

Some say coffee - bad, others coffee- good!

My mum always used to say a little of what you fancy does you good - that's my excuse as well, and I'm sticking to it!

Life's too short to say no to everything nice!

[Rose54 in reply to DorsetLady]

Hi DorsetLady

Totally agree

Cant do without my coffee first thing in morning

But often after a cup in the day I do feel really sick

Tea has always made me sick but as you say some good herbal teas on market.

My Mum says the same even applied to doughnuts she brought in this morning

Take Care

Rose

[DorsetLady PMRGCAuk volunteer in reply to Rose54]

Like the sound of your Mum!

Mine had a very sweet tooth, but I think that was because she came through the war when most nice things were rationed!

[Rose54 in reply to DorsetLady]

Same as mine and she's diabetic on insulin 4 times a day

[DorsetLady PMRGCAuk volunteer in reply to Rose54]

Mmm!

[PMRandRA in reply to DorsetLady]

Lol. My mum also came through the war with the same restrictions, but she didn't have a sweet tooth but a savoury one which I inherited. 😀💕

[Ladybird25 in reply to DorsetLady]

My mum and uncle experienced rationing in the war when sugar was severely restricted. As a result they both have an incredibly sweet tooth! Somehow they have managed to stay slim and avoid diabetes - goodness knows how...!

[DorsetLady PMRGCAuk volunteer in reply to Ladybird25]

My guess is plenty of exercise, and proper home cooked meals (albeit not very tasty sometimes) when they were young.

No Mum or Dad taxis - shank's pony or cycling if you wanted to go anywhere, no TV so outside to play, and no fast food chains either!

Modern living has a lot to answer for!

[Ladybird25 in reply to DorsetLady]

You're absolutely right! They were always out playing and had to walk to school and back. No "school run" back then!

[HeronNS in reply to DorsetLady]

Good old days? On the other hand, my aunt (who was a dentist!) insisted I have what I thought was warm sweetened milk before bedtime. I hated it. Have since learned it was Horlicks. Consequently I ended up with tooth decay, terrible toothaches, and had a total of three teeth removed at different times between ages of 4 and 5.

[Ladybird25 in reply to HeronNS]

Gosh, that's surprising to hear a dentist would advise something like Horlicks just before bed! Presumably you weren't marched off to clean your teeth after the Horlicks... Hopefully things improved when your adult teeth came along. That sounds like an account of the modern day children who have lots of sugary drinks.

[HeronNS in reply to Ladybird25]

Only lived with those relatives for a year or two. They had trouble getting me to brush my teeth. Toothpaste hurt my mouth so they were eventually driven to getting me something in a tin, Gibbs?, which I could tolerate, but by then it was too late. (I also have a memory of a toothpaste called Punch and Judy which I really liked, but I suspect in those days it probably had sugar in it!) And who knows what those baby teeth were like to begin with? I noticed I stopped getting cavities as soon as fluoridated toothpaste was introduced, years later.

[DorsetLady PMRGCAuk volunteer]

Hi Chrissy,

as others have said a trek around IKEA would leave me exhausted at the best of times! Likewise any large store nowadays, but shopping has never really been my thing! Too hot, too many lights, and definitely too many people.

But as Celtic suggests might be wise to check your blood pressures checked.

[Chrissy1953]

Thanks for all your replies. We didn't do all of ikea but as usual me and hubby seemed to be the only ones walking against the floor arrows 😁 Then, even though we both said which floor we were on, we still forgot but had a few rides in the lift and a laugh about it,

I have had a couple of yo yo times with the pred. I think I'm doing very well compared to some on here. My Dr takes my BP and although its slightly up he's not concerned about it.

I am not a paranoid person but these episodes have scared me slightly. I was concerned that maybe it would lead to a stroke ! I even took one of hubbies aspirin last night.

Knowing that others have had the same and it's part of what can happen makes me feel easier.

Thanks all ☺☺

[DorsetLady PMRGCAuk volunteer in reply to Chrissy1953]

Hi again,

Sensible GP, so many get in a panic about raised BP, but it usually returns to normal as you lower Pred.

It's easy to get worried every time something's doesn't feel quite right, and very often it's not the Pred nor PMR, but at least if you highlight on here you'll find out either way! And set your mind at rest- which is the most important thing.

Take care.

[PMRandRA in reply to Chrissy1953]

Sorry, but I am going to tell you off.. very gently and with compassion:

You should never ever take medication which is prescribed for someone else even if it is as "innocuous" as aspirin. Ask your doctor or pharmacist if you should commence taking medication. Also, taking 1 tablet will not help in any way. I suggest you see your Doctor and tell him your fears which are very real and he will be able to give you the correct treatment.

🙂😍

[PMRpro Ambassador]

I very occasionally have what sounds like similar episodes - usually after I have been doing too much! I just feel unwell and nauseated - until I lie down and have a sleep. I've had most things checked in the last few years so I put it down to PMR having a field day reminding me I'm not quite as well as I think I am!

[Chrissy1953 in reply to PMRpro]

Thanks PMRpro. I'm sure that's it. I have been doing so much lazing around since diagnosis and worked right up until then. I am finding it so hard to stay put. I know I must but this so brings you down at times. My Dr is amazing at checking things out for me. The last thing I want is to come across as a hypochondriac by running to him at every little thing.

This site is amazing for putting me back on track ☺☺

[1brian]

Not much help - I am on 4mg down from 15, this is not something I have experienced on or off the steroids.

[PMRandRA]

I have found that 10 is the litmus test! If you don't get pains at 10, then you should be able to cruise down to zero - slowly of course.

But if you are like me then the tenner is the blight! I have tried 10 4 times now, all slowly and this time I have even reached 8.5! But then it hit the fan and that pain in the elbows, shoulders, neck and shoulder blades and the crunching sound of my shoulder blades whenever I moved. ( this is only 3 days ago so very recent). I am now increasing 1 at a time to find out at what point I am pain free. Am now on 10, not pain free.

So, is it PMR or steroids? In my case there is also Rheumatoid Arthritis to add to the mix so I have no idea!

There is also the question of the adrenal glands which were waking up, lets hope this uncertainty won't upset them too much!

[DorsetLady PMRGCAuk volunteer in reply to PMRandRA]

Hi,

Sorry to hear about your latest flare - so dispiriting!

You obviously don't want to go above 10mg again, so maybe if you give it a few more days at that dose the pains may subside enough to be liveable with.

Trouble with other things in the mix, you've never 100% sure it's all GCA or PMR related. I know you can usually tell the difference, but it does muddy the waters somewhat.

If you get enough relief at 10mg it might be an idea to stay at that dose for a few months, if necessary, to really be sure. I know you probably don't want to hear that, but better stay there for a few months than risk another flare - I think the more you have the more difficult each becomes. That dose also gives your adrenals a chance to start thinking about things.

Guess you're already doing 0.5mg a time and a slow taper, so not much else you can do. But, one day will be the right day, and you'll get lower.

Take care.

[PMRandRA in reply to DorsetLady]

Thank you Dorsetlady.

I actually go slower than .5, and this morning I woke up - pain free ! Yes, I will repeat that, pain free! 😄

You are right, I will stay on 10 and curb both mine and my Doctor's impatience. It's not nice and goes against my temperament to tell my Doc to 'b' off ! 😝 But he is wrong in trying to push me, so 'b' off he must!

I will keep in touch. 👍💕

[DorsetLady PMRGCAuk volunteer in reply to PMRandRA]

You're quite right, and if your doctor has anything about him, he'll realise that the best person to know when to reduce is you.

As I've said many times some doctors seem to be frightened of Pred and in their haste to get you off it actually make things worse. I know there are many nasty side effects, had a few, but they can all be managed or treated.

Good luck.

[PMRpro Ambassador in reply to PMRandRA]

10 may be the litmus test for you - but it took me 4 years to get below 9mg! I was absolutely great on 10mg, right from the start - and to be honest would happily stay there for life if I had to!

[PMRandRA in reply to PMRpro]

I am terribly sorry if I upset you PMRPro, It certainly was not intended in any way shape or form. By 10 being the litmus test, I mean that if someone can reach 10 mg of pred a day without any or many bad effects then they should be able to continue to the end. However if like you and me and plenty of others on reaching just below 10mg a day, the pain starts again then we start the yo yo of taking more and reducing again and again and again, however many times it takes to get below 10 and not be in dreadful pain. I have had PMR and GCA for 4 years, most of which time I have spent being given the wrong information by Doctors and bouncing around 10 to 15 mg daily.

Two weeks ago I had managed to get down to 8.5 mg a day for 3 days and was thrilled but that was shortlived and I am now increasing by 1 mg a day to hopefully find the dose which is pain free to start down again in the direction of 10, at which point I will remain there for at least a year.

I was looking forward to having the company of the lovely people here, however, since I obviously upset you then I will go and deal with it alone.

I wish everyone well and hope they all improve. I will probably pop in to see what is happening but my fear of upsetting anyone will stop me from writing.

Take care PMRpro and everyone else. 😪

[PMRpro Ambassador in reply to PMRandRA]

Nothing upsets me (except stupidity on the part of doctors but that is another story) - no, I did understand what you meant judging by your reply and I was just pointing out that getting to 10mg easily really doesn't mean you will get the rest of the way as easily. Other inexperienced people reading your post might have thought that getting to 10mg meant that was the worst of the reduction over which is far from the truth, as you well know.

So don't go off and hide in a corner - stick around and join in as you intended to do. I'll try to remember to try and use emojis next time - though they aren't easy on this forum if you don't have the right sort of device and I don't it seems!

[Ladybird25]

Funny you should mention IKEA. I had the same experience in IKEA at the beginning of this PMR journey and had to sit down with a glass of water for half an hour. I was still coming to terms with the fatigue, lack of stamina and aches and pains, and was disappointed not to be able to race around in my usual style, looking at everything along the way... I've been back there once since, found what I was looking for and was off home again.

I think it can be overwhelming in these large shops, especially if there is a lot of walking involved, so it all comes back to pacing... Not so easy if you're only halfway round and have had enough. You've still got to follow those arrows (or find the shortcuts) and get to the checkout where you usually have to queue for ages.... Maybe stick to aqua fit...😀

[PMRpro Ambassador in reply to Ladybird25]

Ask for a wheelchair...

[Daisyroo]

Hi Chrissy - I am on 12.5 Pred now (from 15 recently) and you description is exactgly what happens to me. I often feel sick, light headed and wobbly - today I was so light-headed I haven't be able to do anything but sleep and fall about. Some days I am better and very occasionally I feel almost normal! I have made a list of symptoms (with dates) and a list of questions for the rheumy who I see on Friday. By the way, I typed out a list of symptoms for my GP which he scanned onto my notes and said he wished every one did that!

[Chrissy1953 in reply to Daisyroo]

Hi Daisyroo. Glad we're back on track . The thread got lost a little back there☺. I am relieved to know it happens to others because sometimes the odd thing get a little scary. My Dr like yours it seems is very attentive. The pain is fairly well controlled. I have days when all I want to do is sleep too. I was down to 9.5mg but went back up to 10 because of it. Yesterday I took 9mg today 10 using the slow reduction method. Today though I have the tight feeling in my calfs and swollen feet. Going to see how that goes. I have visitors next weekend so will have a house full of family and kiddies. I'm going to have a quiet week in preparation.

[Daisyroo in reply to Chrissy1953]

Hi Chrissie1953 - I get in a muddle over where to post replies - Even though I use this site (another condition) with my work and should know what I am doing! I also have the family coming to stay for half term but also am trying to hold on to my job if that is going to be possible. I am getting the feeling that this is a complex condition which changes daily. It is hard to make plans and so hard for other people to understand. Like you I find it helpful to be able to post a question on here and have some reassurance almost immediately. Perhaps that is why we all join this site - for support and understanding?

[PMRpro Ambassador in reply to Daisyroo]

It WILL get better - you learn to manage your situation and life becomes predictable again. Honestly!

[Daisyroo in reply to PMRpro]

thank you - I do worry about my work - I was hoping to keep going to a couple more years but it is looking less likely every day - getting into the office for 9am is the killer for me! .... and then there is the sitting ..... ah well I shall plod on for a bit longer and then make a decision. Thank you for all your support.

[PMRpro Ambassador in reply to Daisyroo]

If it isn't a desperate need for the money I can also very truthfully say that early retirement is a very pleasant experience! It would have been getting to an office that would have finished me - being freelance I only had to fall out of bed and crawl to the computer! As it was, OH couldn't take the NHS any longer and we migrated...

[Daisyroo in reply to PMRpro]

I support people who are losing their sight and do absolutely love my job. However I can see it is putting an extra burden on my life which I do not need at the moment and I will have to think hard about continuing my work. Maybe it is time to write my book!