Flare : Can I please ask what constitutes a flare... - PMRGCAuk

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Flare

Trish21
Trish21

Can I please ask what constitutes a flare? I have been on 15mg of pred for about 6 weeks but I am now experiencing excruciating pain in my left hip and thigh, also a bit of pain in my right shoulder. Gp ordered blood test before agreeing to increase dose of pred. Prescribed codeine for the pain which does not seem to be working. I have slight swelling in the back of my calve near my ankle. Need some advice please.

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DorsetLady
DorsetLadyPMRGCAuk volunteer

This is the answer I gave to somebody else few days ago -

“A flare just means the dose you are on isn’t controlling the symptoms. That can happen after a reduction, or sometimes if you have done too much or something is causing you stress so the level that previously was controlling thing isn’t anymore. Can also be if the dose you are on is only just enough or maybe just below and has allowed the inflammation to build up again.

One analogy is like a bowl or bucket filling up with water from a dripping tap - you don’t notice the problem initially or maybe for a few weeks even, until the water reaches the top of the bucket and overflows!

Then you need to take action.”

As you have been on 15mg for 6 weeks I’m surprised it’s flaring now - are you sure you haven’t overdone things? Have you been okay since beginning? Maybe 15mg wasn’t quite high enough dose for you, and has got rid of most if inflammation, but not quite all - so it’s had chance to build up again.

No reaction from codeine would suggest it is PMR.

Sorry can’t help with the swelling on ankle/leg.

Trish21
Trish21 in reply to DorsetLady

Thanks for your response. Overdoing things I guess as I am in denial about my capability to function as before pmr. I think 15mg has been a little bit on the low side to be honest as I have not been completely pain free but it all got a bit fuzzy with suspected gca and was put on 40mg of pred as a precaution until gca ruled out or confirmed. Then reduced to 15mg. I have such a foggy head which I didn't seem to have at 20mg, was thinking of trying 20mg for a week just to see how I feel.

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to Trish21

Hi

The messing about with doses probably hasn't helped, but you do have to do your bit as well. Might be an idea to increase to see if that helps - you will know within a few days - and if it doesn’t you can easily drop back down.

Have a look at this as well - if you haven’t already -

healthunlocked.com/pmrgcauk...

Trish21
Trish21 in reply to DorsetLady

Thank you, I am going to print off the link and show it to my partner and family. I have resigned from my full time job and have secured a part time job elsewhere, they know I have pmr and are happy for me to work flexi hours. I know I need to get my head around the fact that I cannot work this illness off. The forum is such a valuable resource, thanks so much for the effort and time everyone gives it's invaluable.

PMRpro
PMRproAmbassador

On what grounds was GCA dismissed? And really - if your symptoms have never been properly under control, it isn't technically a flare! However - the level of relief from the PMR stuff you got at 40mg will do as a guide for how you should feel now - it is a far too high dose for PMR so the result should be as good as it gets. But you are mentioning head problems you didn't have at 20mg - are they SURE it isn't GCA?

The only thing codeine will do for PMR is make you constipated so I wouldn't bother. Pred is the painkiller for PMR and GCA pain - and it is quite possible that your markers won't show anything as in some people they don't rise when they are on pred at any dose.

Where is the swelling on your leg? Is it tender/hot? Does it feel as if it is pulling when you walk?

Otherwise, DL has already said all I would add. And take it easy!

Trish21
Trish21 in reply to PMRpro

Thanks for the response. I am a bit confused to say the least. Biopsy showed no probs see gca on the left temple area. Pain and scalp tenderness now settled in that area, however I am experiencing scalp tenderness at the back of the head, this could be anything. I am reticent to take codeine as it can become addictive, I don't want to put more chemicals into my body than I need to. Left leg from groin to ankle is painful but not hot do not think it's dvt. Swelling is just at the back of my lower calve just above ankle. I have an appointment with rheumatologist in March to investigate possibility of periodic fever syndrome, just a bit mixed up at the moment. Thanks for your thoughts.

PMRpro
PMRproAmbassador in reply to Trish21

A negative biopsy does not mean it is not GCA - all it means is that they didn't find the giant cells they were looking for in the piece of artery they looked at. There are several reasons for that including the fact it may not be in that artery but could be in others and that they occur as what are called skip lesions - there are parts of the artery they are in and then a section with none. It seems a lot of doctors don't understand the concept - symptoms are always trumps.

Pred can lead to the development of inflammation in the achilles tendon. Does the left leg pain follow the sciatic nerve?

Trish21
Trish21 in reply to PMRpro

The pain in the left leg seems worse after sitting especially in the car driving home from work. I started with pain in the groin and it has gradually gotten worse now affecting the whole leg from hip to ankle. I did have some amatsu massage on my left buttock and I do wonder if some damage has been done. The practitioner said it would help the pain, it did for a short while but now it'sworse than before.

PMRpro
PMRproAmbassador in reply to Trish21

It definitely requires investigation. Though the fact the massage helped for a while does make me wonder if it could be due to piriformis syndrome or similar which is pinching the sciatic nerve.

mayfieldclinic.com/pe-sciat...

Rimmy
Rimmy in reply to PMRpro

WISH the Rheumy lot were anything like as smart and informed as you PMRpro - I'm sure you've saved many sets of 'eyes' here ...

Rimmy

X

Blearyeyed
Blearyeyed in reply to Trish21

Even if the swelling in your ankle is not PMR related it needs assessing by a doctor as soon as possible , it could be many things and needs proper examination and recording on your medical record , if they see it they believe it and use all those symptoms to decide on your doseage .

And if you are struggling with pain on your current doseage getting to the doctor even before your March appointment is very important. You could request to increase to 20-25 mg to establish if this will help.

If all the pain is PMR related at the moment then standard pain killers will make little or no difference. Codiene especially is not a great medication , it can be addictive and one of its side effects is to cause head and joint pain as it leaves your system which is what causes the addiction.

Better to use the paracetamol or ibuprofen for now and see how much it helps.

Keep a pain diary to show your doctor's as well , if you write it down at the time , where , how long , type of pain it helps them assess what's going on and it means you won't forget any symptoms you are having when you go to appointments because you have your notes to check.

PMR or GCA and their limitations to your lifestyle are hard to cope with. Many people don't realise just how Fatigue and Pain can affect you. You have changed your work hours but you will need to get rest as much as possible in between , don't take on too much , rest regularly if you go out , reduce and pace physical activities .

Prepare the family to give you as much help around the house as possible , and let people know that for sometime until your symptoms are controlled there may be times when you must cancel things at the last minute . You also need to prepare yourself for times when you must rest and do nothing or flares will come thick or fast.

It takes time but with acceptance and reorganisation PMR can be bearable , looking after yourself has to be your first priority though if you want a smoother ride and quicker recovery.

Take care , Bee x

Trish21
Trish21 in reply to Blearyeyed

Thank you so much for your input. I take on board everything you have raised.

It’s hard to distinguish between PMR pain and other pain. I had the type of pain you described and the doctor said it was sciatica confirmed by the physiotherapist. Co codamol took the edge off it but the pain remained. That has largely gone now and I am continuing to very, very slowly reduce the prednisilone.

My own view is that the enflamed PMR muscles pull on the nerves and other muscles causing pain and cramp. I still get quite a lot of cramp when standing eg in kitchen or in supermarket. Sometimes it’s so bad Ihave to give up or go to sit down. I peel the veg sitting down and sit down frequently while minding the cooking.

Trish21
Trish21 in reply to Fireleigh

Thanks for the response. It's a weird pain as it radiates from the groin to the hip into the outer thigh and the inner thigh down into the calve and also behind the knee. It is worse when I am driving, I am wondering if I have a nerve trapped somewhere. The pain goes from a miserable ache to sharp excruciating pain which recently made me cry.

Was down to 7 mg pred doing ok then had sore throat and cough for a couple of days, but was concerned about colour of mucus I was coughing up dark brown thought maybe it was pneumonia again. GP prescribed antibiotics for a week and suggested I up the dose of pred to 30mg for one week as he diagnosed it as an asthma flare did as suggested all fin now and back down to 7mg pred.

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