PMRGCAuk
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Feeling down and burning up

Hello fellow sufferers

I'm feeling pretty frustrated this afternoon, having had to cancel all my plans for today after feeling more pain than usual and worrying if this is my first experience of a flare. I've been looking back at old posts for advice and information which is always helpful but still feeling very alone and worried, so a few supportive message would be very welcome.

I was diagnosed with PMR in January and have always been aware of pain in my face, jaw and temples without evidence of GCA. It's worse today and accompanied by breathlessness and extreme hot flushes and a general feeling of malaise.

I still have a urine infection despite a week of co-amoxiclav (for e-coli resistance) which I finished two weeks ago and it hasn't helped at all that my GP wanted me to come down to 6mg from 7.5 in a matter of days, for no real reason. I thought I was succeeding by taking the whole dose of enteric coated at bedtime and have felt quite energetic the last few days, despite being hugely stressed by a flea infestation in my dogs possibly resulting from having my carpets professionally cleaned (it seems to be a big problem this year here in Wales).

So I guess this is an inevitable flare, and I should up the dose, but how much and for how long please, and should I be more alarmed by the facial pain?

I'd be grateful for any advice and thoughts on the matter, Thank you in anticipation,

Chrissie

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Hi Chrissie, i dont have the medical answers you are seeking , but I do come with a big virtual hug for you!❣️😘

I sympathise with your need to cancel daily plans, its a drag to feel so bad we cant keep even pleasant activities when we feel poorly.

The wiser ones will be along shortly, with plenty of advice...till then,

Kind regards, Jerri

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Thank you Jerri, I am very grateful for your virtual hug and advice. I still haven't found out how to do emojis on this forum!!

Chrissie

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Hi Chrissie,

With recent events could well be a flare, but if you’ve only just done your reduction it could be steroid withdrawal. If it’s only a few days from your reduction would suggest steroid withdrawal, if longer then it may a flare.

If it’s a flare, and you felt okay at 7.5mg then try that first, you may be quick enough to catch it.

7.5 to 6mg is a strange reduction, did GP give any reason?

You are also around the time your adrenal glands should be thinking about working again, see my post earlier today.

Sorry it’s not a definitive answer, but it could be many reasons why you are having problems.

Also in future try a slower reduction plan, rather than an overnight drop . See attached.

1st week - Sun & Thurs new dose -Mon, Tues, Wed, Fri, Sat old dose

2nd week - Sun, Tues & Thurs new dose -Mon, Wed, Fri, Sat old dose

3rd week - Sun, Tues, Wed, Thurs new dose -Mon, Fri, Sat old dose

4th week - Sun, Tues, Wed, Thurs & Sat new dose -Mon, Fri old dose

5th week - every day new dose

Note: I found usually once I’d completed Week 5, I was able to go straight into a new reduction. Occasionally I did stay on extra week - depended on circumstances.

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Thank you dear Dorset Lady.

I have been reducing by the DSNS method since at 10mg but when my GP insisted on the reduction I didn't argue but quietly reduced by .5 mg to 7mg first before finding I only had enteric coated pred so used your method to try the taper to 6mg in one dose at bedtime, knowing it was a sensitive dose.

The onset of pain in various parts of the body has kept me at 7mg but today the pains are worse especially in my face and stomach. Is this likely to be steroid withdrawal effect?

Many thanks for your prompt response.

Chrissie

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Dorset Lady, thanks for bringing my attention to the article you posted earlier, it certainly answers some of my questions.

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For myself, if it has been 4-5 days and I feel lousy, that is a flare. Often, for me, 1-2m more for 2-3 days will “catch” the flare, then I can go back to the old dose. Also, I also have a urinary tract infection and just read that it can make you feel exhausted! I too have a dog...fleas are stress too! You are not alone in feeling isolated and exasperated...especially when you cancel plans. It is so nice when I am smart enough not to make a lot of plans...then I can just enjoy walking my dog😊

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Thank you Klah, that is very helpful advice. I will try the additional dose for a couple of days. I wasn't sure if I was supposed to add an extra 5mg and for how long, but you have answered that one.

It wasn't a good idea to try and taper while fighting off a urine infection, I don't know why my doctor thought it was. It's so disappointing when you realise that your doctor doesn't understand the condition fully and adds to your stress by demanding unrealistic reductions in your meds!

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This is only the second UTI I have ever had, so I did not recognize the fatigue, malaise, etc. ....plus the flu shot. Hope you get back on track!

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I seem to have a hard time that friends don’t seem to understand the whole process. Because of the that I seem to isolate myself.

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I know, my closest friends will ask how I am doing with “....what is that thing you have?”....can’t blame them, it is not a familiar ailment. I have had PMR For almost 4 years and my husband, who has been very supportive, asked me...”So, tell me again, is PMR a blood thing or an auto immune thing?”. If it wasn’t for this forum I would thing I had lost my mind...seriously! It is our human nature that does not allow someone to be ailing for more than a few days without fixing the problem...at least some bleeding, swelling, something!

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Glad my husband isn`t the only one with those sort of questions.....can handle them some days, depends how I`m feeling.....and I`ve had PMR 6 years!....

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Maryanne_pr :- How honest of you. I have a vague sense that one or two of my family members may think similar thoughts as you suggest. This is despite the fact I had offered to loan them Katie Gilbert's book which is written in plain English.

No one can hurt us when we choose to isolate, in fact it can be peaceful & I do know when I need to circulate again but normally it is usually brief.

Blessings

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I live alone and often feel very isolated in a quiet Welsh village so I was disappointed not to be able to get along to the things I planned to do, where I could have been with friends and have a bit of fun. Not to mention showing some support to the people who support me.

But PMR had different ideas, so yesterday I turned to my friends on this forum and am as ever grateful.

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I know, I also thought of sharing my book with some friends, but mostly with my doctor 🌻

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Dear Maryanne_pr

I have found that we need to be quite assertive with this illness and retreat when we have had enough. Our energy isn't the same as it was before we got ill and we run down quickly. I have got better at saying "that's it, I am off". Nobody else has to deal with the two or three days it takes us to recover from getting overtired.

Take care and don't isolate yourself too much xx

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P.S. I forgot, I am burning up too. It would happen sometimes just from PMR, but now I quit my 15 years of HRT, so now I toss and turn all night😨

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Since my menopause I have had terrible night sweats but now the day ones are something else!

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Chrissie, I feel a bit concerned that there may be more than one thing going on with you. Your mention of the resistant UTI and the pain in your stomach could be linked. Added to the flushing and malaise, you need to rule out that the UTI isn't causing some of your symptoms in case there is a risk of the UTI getting to your kidneys or even your blood stream. I am also experiencing resistant UTIs and a few days ago a GP strongly advised me to take an antibiotic I was resisting, saying that I was putting myself at risk of sepsis. I really don't wish to scare you but just to make you aware. Hopefully, you have nothing to worry about but if you suddenly get any worse and a small increase in steroids doesn't help, then do seek urgent advice to rule out both GCA and anything untoward related to the UTI. Lots of good luck wishes.

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Thank you Celtic.

My GP referred me for ultrasound when I last presented with this problem after some months of not responding to antibiotics, but at that time things were ok. The receptionist was very dismissive when I rang about my urine test back then, so I have left it a few weeks and now I'm not at all surprised to find I still have an infection.

I'm really hoping that my doctor will get on the case when the result comes in on Monday, but if my condition gets any worse I guess I will have to seek medical attention sooner. Thanks for the advice. My stomach hurts when I eat, then seems to settle. My face is hurting all the time and paracetamol isn't helping.

I hate making a fuss but this PMR seems to always keep me guessing, what next?

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You know the great thing about this blog is that you come across someone else who has the same symptom as you! I too have stomach pains when I eat, which eventually go off. I thought it was because it was because I was eating too much, but it's there even with a small meal. Also I have pain right under my bra, across my chest. Have taken to wearing most unflattering 'soft' bras. Can't be glam with this condition some of the time; just have to be comfortable!! Btw, you're not making a fuss. Just need some answers!!

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Good advice. I went to the doctor on Tuesday, the urinalysis was “positive”, but I decided to wait a couple of days for the “full” report. I got the antibiotics that day...I was lucky....I should have gotten the meds on the day I tested positive. With this PMR you do not want an infection to get away from you!

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What a good post Celtic

We really do have a multi faceted, comprehensive group here. We have humour, common sense, knowledge and wisdom. We are fortunate indeed ⭐️

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Your doctor is crackers - that is too much of a reduction to be done quickly even if you weren't already unwell. I don't care what good reasons he thought he had to tell you to reduce that much at this stage - he was silly

And it is at a level where stress is now going to play an even bigger role. UTI plus fleas = STRESS.

If you are having problems with UTIs do tell your doctor you wish to be referred to a urologist. It is generally beyond GPs as I found out to my cost.

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Thank you PMRPro,

After Celtics considered response I contacted the duty out of hours GP and he was able to access the result of the urine test which it seems was ok (but not available to me at 3.30pm on Friday). He advised me to go to A and E for further blood and urine tests but I had already taken an extra 3.5mg of pred so decided to wait and see. Plus I would not have been able to get myself to A and E in the state Of pain I was in.

All the advice from here has helped me so much with the anxiety and solutions, I am so grateful. Many thanks

Chrissie

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"Plus I would not have been able to get myself to A and E in the state Of pain I was in."

If you are that unwell and the OOH GP told you to go to A&E he COULD have requested transport from the ambo service. If this is a serious problem then NOT going to A&E could result in you becoming very unwell - whether it is a kidney/infection problem or PMR/GCA.

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Hi Zebedee44,l am sending you another big hug, you really are not at all well and l think you are lowering the steroids too quickly,also the urine infection is not helping,my husband gets these sometimes and is really ill with them. It is very important to get the correct antibiotic for the infection,but l presume your doctor has done all the necessary tests. I am fortunate enough to not have suffered bad headaches with PMR,but have a lot of problems with my neck and shoulders. I also think that you are feeling stressed,not only because you feel so unwell,but dealing with the dogs fleas is not helping,l know how difficult they can be to get rid of.Please let us know how you are getting on,we are all your friends,we wish you well again soon xx

I

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Great big healing hugs to you , I've been experiencing my first flair but thanks to my GP it is now under control , hopefully Dorset Lady and PMRPRo will be along to advice you x

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Im so grateful to all of you for your hugs and support, which is so reassuring. I've spoken to the emergency on call doctor and he said to go to the hospital if I'm worried but recent blood and urine results were ok. My face still hurts but I do feel a bit better since taking 3.5mg extra of pred, now time for bed and my normal dose so hope I will feel better in the morning.

Thank you all so much for being there and supporting me through my crisis, with much love to you all, Chrissie

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We have each walked these steps ahead of you, and understand the wretchedness of parts of this PMR journey. As time passes, symptoms change, not worse, ...just different...but I assure you, when the dogs (I have 3) get fleas...aint nobody's life happy till they settle down! 🐕🐈 ( got 2 cats also)😜

Hugs again, J

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Oh Chrissie, if you read back your own post you will see exactly why you are feeling so rotten today! You are at the kind of dose where your Adrenal Glands have to wake up and start working after a longish rest. So you can add that into the mix as well as the stress of a persistent infection and the general lowering that antibiotics cause. Not mention fleas! Now I remember why I didn't get another dog. You are sure you have an infection aren't you? I get periodic cystitis type symptoms as a side effect of Pred. No infection detectable.

I was diagnosed in March 2016 and have only reached your dose now, it hasn't been a smooth sail since 10 mgs. You've had a really rapid reduction. Too fast if it's Jan 2017 in my humble opinion.

Your face, jaw and temple pain is concerning. It can't be ignored, we have to be alert for GCA, I will be corrected if I am wrong but isn't the figure 1 in 5 PMR sufferers go on to develop GCA?

Finally your plans. Did you want to do any of it or was it more stress?

My PMR gets me off school quite unexpectedly from time to time.

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Thank you for your comments Sheffield Jane and maybe you were right about the plans, activities which both required quite considerable effort from me, but would have filled my day with good company and lots of laughter.

I had been feeling so good about my management of this condition, (especially in view of the timeframe) and I had just got back to believing I could actually make plans and stick to them. Haha, got that wrong. PMR is an unsympathetic companion!

After a sound nights sleep I now have only a neuralgia pain in my left cheekbone and very little pain anywhere else, so I'm feeling a lot less anxious, mostly thanks to all the support and friendship I have received from this forum.

Most grateful Chrissie

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Chrissie, I'm so sorry to read how low you are. I was at my Ruggers' meeting yesterday, or would have added a hug then. Here is a Sunday hug, hoping you may be feeling a bit better today, having taken the extra pred? If not, you've had lots of good advice from the 'aunties' and others.

I'm just reducing to 7.5mg and have been having awful hot flushes. I'm dreading that it's another flare, but also wondering if it's down to the adrenals..... What a guessing game this PMR is!

@~)~~~~ x

PS PMRpro gave me a link to how to do the rose (If it is a rose! It's not on my screen!)

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Haha, it's not a rose here either Sue. Thank you for your hug, I do feel a lot better today and a lot less scared after all the great response.

I don't know whether to keep topping up the steroid until this episode is over or to continue at 7mg. Forget tapering to 6, that isn't happening! But it's such a shame to be at odds with ones doctor!

Have a good weekend and batten down the hatches for the stormy weather tomorrow, if it happens. Love Chrissie

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Chrissie, It's good to hear you seem much improved today. If you stay at 7mg and the pains return in a day or two, you'll know to top up to 10mg or whatever you did yesterday. When I flared this summer and went up from 4mg to 10mg I was quite sad to have to do that, but SO relieved to get rid of the pain! Today, 15 weeks later, I'm just starting the taper to 7.5mg. As we are always being reminded, these conditions have their own timescale and not ours.

I'll try a smiley face this time. Don't know how to do the bunch of flowers!

:-)

x

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Dear Zebedee44

I hope

You are feeling a bit better today.

Sending you some virtual 💐To make you smile xx

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Thank you Rugger and Elaine -W for the emojis. Where do I find them?

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I can only find emojis on my computer, using a touch screen device.

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They may or may not work:

seniorplanet.org/how-can-i-...

seniorplanet.org/more-fun-w...

and there are further links in it.

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I used this link that you sent me, PMRpro - thank you. I sent the rose to someone else and she saw it as a rose, even though I saw it as @~)~~~~ (ie it's component parts!) and Zebedee44 too. I think it must depend on the software that we're using on our computers.

The smiley face works - colon or semicolon then minus sign then close brackets but with no spaces in between : - ) but no spaces.

:-)

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😀😀😀 I read through both the links and found out how to find emoticons on my IPad. Many thanks PMR Pro

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I hear to decrease 1/2mg effort 3weeks. You dropped too much at once. Go back to 7 mg for 3 weeks them drop 1/2 every 3 weeks.

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Thank you, I knew my doctor was asking too much but I had to at least try to do as he asked so that I could go back and say it hadn't worked and had caused a flare.

I am continuing at 7mg coated tablets at bedtime but to reduce by .5mg I need to return to taking a dose of uncoated pred which can be cut in half so I will have to work out how to split the dose effectively.

I have found that taking the slow release steroid at night gives me fairly pain free days and good quality sleep. If I take my daily dose in the morning I lose a good part of the day to pain.

Now I know what a flare feels like I don't want to go through that again. Thanks for the advice, Chrissie

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Chrissie,

I take the majority of my dose as coated pred at night, say 6mg and then I would cut a 1mg uncoated tablet in the morning to take the 0.5mg with breakfast.

Have you seen this in today's newsfeed?

healthunlocked.com/pmrgcauk...

Take care, ;-)

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Thank you Sue for bringing my attention to this article which supports my recent findings.

The pharmacy put up coated 5mg rather then uncoated so it made sense to take them at night and rely on the slower release coinciding with the cytokines. An unplanned success, 👍 (Found the emojis hurrah) love Chrissie

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I take the extra top-up of uncoated pred at breakfast because I felt the coated taken at 10pm wasn't quite lasting 24 hours and I was feeling a bit of discomfort in the evening. Now I'm tapering to 7.5mg I may try taking it all at night and see how I am the next day.

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You can get 1mg coated tablets

medicines.org.uk/emc/medici...

Using 5, 2.5 and 1mg tablets you can make 0.5 drops.

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Thank you. My local Boots didnt stock them when I first asked but they do now, and my GP has never queried the additional cost, although I am ready to give him the maths if he does!

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