PMRGCAuk

Flare?

So wise ones - I need advice please:

I have been tapering quite well using Dr. R. Hughes method. Just done a month of 7mg and was to start 7/6 alternating days for March - but had just returned from Australia and so because if travelling etc I didn't want to put extra pressure on myself and decided to stay on 7 for and extra week.

Well I started a job (live in care) on the 1st March - with a really demanding / critical client - who has me running up and down the stairs all day and nothing is right.

My knees started aching badly and then my legs started aching. They swell up incredibly - like tree trunks - my knees actually feel like they are floating. The flesh in the back of my thighs hurts so much as does the side of my calf muscles. My hips have started hurting now too. Pretty much same symptoms as before I was diagnosed. This morning my arms felt heavy and week when I was dressing her. My stomach has also started hurting. I went up to 8mg - for two nights now - but no relief yet.

Any advice please. I'm stressed and weepy and so irritated that I'm having to up my Pred.

I will probably have to leave this client - but so worried about money.

Thanks

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Hi Slosh,

So sorry to hear that. But for your own health and well-being I would say ditch this client. That may sound harsh, but he/she obviously needs someone who is fully fit - and at the moment you are not. You need to put yourself first. I understand your concern about money, but there surely must be better clients.

If I were in your situation (and with weekend looming) I would be inclined to go up to 10mg at least for a few days to get a grip of things. You should then be able to get back down to 7mg relatively easily. You can touch base with Dr Hughes’’ Dept on Monday and get further advice.

Good luck.

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Thank you for your response DorsetLady.

Do you know if the pain in 'flesh' in back of thoughts is a common symptom of PMR?

I will try 10 and then get onto Dr, Hughes rooms on Monday.

Thank you.

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Hi again,

Don’t know - I had GCA so all my pains were shoulders and above. But it could be a combination of PMR and up and down the stairs!

Do hope an increase makes you feel better soon.

Just seen post to PMRpro, yes you may well bleed more, especially small scrapes etc.

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Thank you

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By pain in flesh - do you mean your skin hurts, like with flu? I have that sensation with PMR at times.

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No it's similar but different to that. I also have that with flu. This is more like gnawing pains in the flesh / muscle / fat whatever - not skin.

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Yes, I get that pain in the muscle, especially at the back of my legs and bum cheeks.

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I agree with Dorsetlady,

There will be other less demanding clients for you to care for. Stress is a massive problem for us and must be avoided where possible. I personally am quite enjoying this new phase of being me where my needs are given consideration by me. I have been my worst enemy all my life really. I heard a saying once ‘if you want something done ask a busy person’. That was me. I acted like I could be everything to everyone one. What happened? Chronic fatigue for six years and ten years later GCA? PMR? I am not a fast learner 😃. Wish you well and stay in touch xx

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Oh goodness Elaine-W - yes that's me! Not worth it.

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It is the stress and the added effort of stairs etc. and a nasty person. Yes - I'm judgemental me....

Like DL, my answer would be to up the dose to what you need and check with RH on Monday. People who work DO tend to need higher doses - for fairly obvious reasons. It is also possible that that month at 7mg was the limit of what 7mg could do. If it is just marginally too little it will take a few weeks to ill the bucket of inflammation. And you have to get that out of the way BEFORE you can settle back at the right dose - which I suspect will be 7.5,g if you are lucky.

It's a physiological dose, you body will have to top it up so it is safe enough for a while.

All the best.

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Thanks PMRPro. Yes I think you are right. I felt way better on 8/7 alternating. 7 was ok but not great - so I see your point.

Just a random question - do you know if people bleed more easily on Pred?

Thanks again.

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I definitely bleed more easily and for longer now I’m on Pred. Slightest thing can bleed and then scratch takes weeks to heal. Frustrating.

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Ok thanks Lochy - that's good to know. I wonder why it has that effect.

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It makes the walls of the capillaries under the skin more delicate so they are more easily damaged - which is why we tend to bruise more or develop the red patches called purpura and petechiae. I don't bleed much because of pred - obviously thick skinned! - but I'm also on anticoagulant therapy and at present have some fantastic bruises. Not helped by a week of high dose NSAID infusion for low back pain!!! It worked so I can't complain...

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Oh dear - sorry PMRPro. Would the back ache be from the effect of the Pred on your bones?

Thank you for that explanation. Could PMR cause one to bleed easily. My varicose veins have also become so much more esp the spider veins - look like a road map.

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No, no - purely muscular. Myofascial pain syndrome is often found alongside PMR. It is caused by the same inflammatory substances but they are located in the muscles as hard knots of inflamed muscle fibres or in the fascia (the transparent skin that covers large muscle groups, as found in meat and poultry joints.) They tighten and make the sacroiliac joint inflamed too and hurt by making it tight. PMR itself doesn't increase bleeding.

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Did a physio get you right with the infusion or GP, I am still looking for a physio that knows how to treat PMR, had NHS appointment, and was given a sheet of exercises to do!....

I`m thinking it should be a sports physio, but I`m afraid they will be too rough....any thoughts please....

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Hi,

No, not necessarily, I see a sports masseur (privately) for a variety of problems and she has a much more holistic approach and combines massage and acupuncture. In her absence I’ve seen a younger colleague and she’s also very good.

You might need to do a bit of research, but I’m sure you’ll find someone suitable.

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Thank for that, very reassuring....

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It was my rheumy - a new experience for me but seems worth it at present! He is a world-renowned PMR/GCA person and has recently come to set up a rheumatology department for the entire region. It just so happens our hospital got it! I quote his work quite a lot. He looks about 15... But is absolutely delightful - and we know a lot of the same people in the field as he also worked in the UK with Dasgupta for 6 months.

I would have at least one sports physio appointment and "interview" them. The NHS physio is useless more often than not - although I had 2 in Durham who did really "get" my problems. Only because they'd had them too. It isn't their fault - they don't have the time or (often) expertise in the right place.

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Thanks for that....how fortunate to have the youthful looking expert at your fingertips!

I will interview them, even if it`s a chat of the phone to probe what they know....

NHS lady said you probably have trigger points, but here is some exercises anyway!.........in other words no time for hands on.....

I really don`t mind paying to get some relief, but it`s finding the right physio, but I will ......they are out there somewhere.....

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Exercises are useless if you have "trigger points" - the exercise just exaccerbates their effect.

I have a theory that the primary reason Rod Hughes is so good is because he also does sports medicine. And it is certainly an important factor here in Germanic-Europe.

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'He looks about 15...' I like that.

They used to say you knew when you were getting old because policemen started to look young, but my experience is that the doctors all look like teenagers. When I started on pred I collapsed in hospital when having a blood test and ended up spending the weekend there. At about 2 am two doctors came in and asked if I'd mind having a lumbar puncture then as it was the optimum time given when I had first collapsed. I was so confused that when I first saw them I thought the hospital had kindly let my 17-year old twin grandchildren visit me in the middle of the night. The male told me all the possible unwanted outcomes and then told me not to worry as he'd done 105 procedures and there had never been a bad outcome. I thought to myself that he must have started when he was 10!

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Even my GP agrees about Christian looking 15!!!! And she looks barely 40 at well over 50... Must be the air here.

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Can I move there please 🤗

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You can yet - but you don't have a UK passport anyway do you? So you will be able to. How's your German/Italian? They are ALWAYS looking for companions here. and the families/clients seem very nice...

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Hahaha - no don't have UK passport yet - so must stay put till then (two years). No German or Italian Im afraid.

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Get learning! Personally I'm far from sure a UK passport will be an advantage in a couple of years. Do you get to keep your own?

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Yes I can keep my own but it's a South African one - definitely a disadvantage as I discovered recently when applying for visas to UK and Oz. Everything short of DNA required - and the one took so long that I lost my flight.

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Ah. Yes. Same problem...

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Aqua physio helped God me so much in the beginning.

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Hahaha - helped me - not God

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I kept going with PMR no pred for 5 years thanks to aquafit. The difference without was quite amazing. No suitable opportunity here when I live now so pred it is...

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I'm really going to try go again - buts its sooo expensive

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I'd suspect the first thing you need is a few physio sessions before abusing those poor muscles again!

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It may be a coincidence but my magic physiotherapist actually specializes in sports injuries, but she and her husband run marathons and I think that's why she's got sports patients. She had already had a lot of experience with PMR patients before I met her. I think that experience is important. She also has a good friend who is a young rheumatologist who apparently gave her good advice regarding how to treat people like me.

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Lucky you

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I was really lucky to find her.

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Thank you. The back of my thighs are very lumpy!!!

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Sorry that was god Longtimer

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That's ok I guessed......

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For your health’s sake you must leave this client, you cannot meet these kind of demands when you have this illness. Your body is telling you, loud and clear. The stress of not being able to retreat to your own space must be terrible. I would contact Dr Hughes office for an appointment or at least some advice. If you feel like you did when you were first diagnosed you are in a flare. You have no way of dealing with it except an authorised increase in dose. You’d stand a fighting chance in an easier job. Also your client needs a career in good health with a kindly no nonsense frame of mind. Not someone who can barely lift her arms, poor you. Do you have to have a live in job?

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Hi Sheffield Jane - thank you so much for your response - yes it's a 3 week live in position.

I did take 10mg last night and will for the weekend and then phone Dr Hughes on Monday

Thank you again.

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Thank you so much DorsetLady, PMRPro and SheffieldJane for taking the time to respond to me. So many of us would be lost without your knowledgeable, wise and kind input.

Thanks again.

Slosh

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Hi Slosh,

Reading your post this morning made me wonder about your stomach pain. Do you think it is Pred being harsh on your stomach? Do you take anything to protect it.

I feel quite concerned for you this morning, in a stressful situation, with stomach pain and swelling in the legs and pain in the skin at the back of the legs. Due to exertion or stretched skin? If this was your client you would be seeking urgent medical advice. Maybe that is called for, for you? I was saying to someone yesterday that heart attacks in women can present in strange ways, like stomach pain.

Are your legs any better now you’ve been off them for a night?

Do take care.

Best wishes Jane

PS. Come and care for me. We can sit together on the sofa with our feet up and watch lovely old films. Like “ Whatever happened to baby Jane”. 😱

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Ooh I'd love that 😂😂

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Sheffield Jane I think the swelling may be Pred related - I'm not sure if it could be PMR related - as I don't remember having that issue before Pred - although I always had chunky ankles. My legs do go down some at night but not entirely.

The knowing aching pain in my thighs / in the flesh at the back of thighs and dude if my calves was an original symptom as was pain in my stomach - actually my first symptom. I couldn't eat either. I assumed after being diagnosed that the pain in my stomach was all due to the inflammation.

You are so kind for your concern.

I think I must not have any salt at all. ???

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You will get relief when you fire the difficult client. My pain increases with toxic people! Do let us know how you progress.

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Thank you Sandy1957 - yes.

I am going to stop live in care - well in a way. I will be looking for a day job and moving in with an Ederle lady - only looking out for her in the late evening o that she first wander outside looking for the cat. Staying in one place will be more conducive to having a regular diet / exercise / sleep / social regime.

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Yeah! That is good news. I’m so sorry you have money woes. That stress impacts your health. I hope self care improves your situation so that you find an easy way to make money! Stay in touch.

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Thank you so much Sandy1947. It's so kind of you. Esp when I'm feeling so vulnerable.

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We all feel vulnerable with this illness. I’m forcing myself to toughen up!

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I've never cried quite so much - although I've also had s changing of relationship with my youngest son since he got married. It has broken my heart.

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So sorry about your relationship with your son. I tread lightly with my daughter in law, bring lots of groceries and cooked food and generally suck up! Sometimes it is an effort to be quiet. Our values are different.

Just got back from Dallas visiting my older son and his fiancé. She is wonderful and we share values. Life is hard and life is good!

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Yes it's so hard. We were close and he was always so supportive. Now he seems to be judgemental and critical towards me. Yes I also tread lightly - buy presents I know she'd like.

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Do the best you can!

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Hi - does anyone have dr Rod Hughes email address please? Sorry to be a pain - working away from home.

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drrahughesrheumatologyltd.com/

Email: jody.evans@BMIhealthcare.co.uk

is his private practice. Don't know how the NHS email works.

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Thank you very much PMRPro

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