Follow up with the doctor. Markers down but still in pain

[Buttonshutton]

Had my first follow up since diagnosis and starting on pred (15mg for four days not much improvement so 20mg since mid July)

Much improved but still quite a bit of stiffness in shoulders and legs. Pain on my arms when I lay on them etc still can't do up the bra or get up from crouching without getting on my knees first.

Anyway. Following my bloods on Monday the doctor called. Told me my test for diabetes was negative (didn't know was having one) and my Inflammation markers almost normal so that usually means the disease is under control and he wanted to start weaning me off. I said no still in pain I was going to ask to up it! Explained about this group and how some people have no markers ever. He said well the guidelines.. I said well surely there's an argument to say that the guidelines work in the main as the disease is thought of as an older person one and therefore geared for people who maybe aren't as active as not working and can rest if need to during the day and folk who are working may need more. Hmm well yes maybe. Well I'll send to rheumatologist cos other things can be similar might be something else. I said I'm happy for that but on reading I'm text book PMR tho he said yes you are. I mentioned someone on here sajd maybe don't leap to 25mg but try 22.5. So we agreed that compromise and he said I can go to 22.5. He will call in few weeks to see how I'm doing with that. But is this usual. The markers going down but still pain. I assume so? What else could it be. I said apparently in the US starting doses are higher (Facebook group predominantly US) he said maybe we are too cautious. But the side effects etc weight gain. I said I'd rather be put of pain and worry on that later.

Bone scan today.

I just wondered on anyone's take on all this. Oh incidentally I was away last weekend. Did not a lot and felt loads better so I do think it's to do with when working need more but am confused by the markers being almost normal. Thank you sorry long.

[123-go]

Hi. First of all I'd like to say welcome and well done for questioning your doctor: you've obviously done some research.Blood tests give an indication of the level of inflammation in your body and of course markers will go down because the Prednisolone is doing its job. This is not to say the PMR has magically been cured: there is no cure for PMR, instead the condition is managed with careful, slow tapering until the disease goes into remission- anything between 2 years ( IF you are lucky) to 5-6 years and for some far longer. Have a look at 'tapering steroids ' in the topics section at the right of your screen.

It appears that your starting dose was too low. Between 12.5 and 25mg is recommended and prescribed for the individual. Usually after a month on that first dose symptoms will will diminish by at least 70% and then you can start reducing by 10% each time (usually monthly). In your case it may be that you should have put on 20mg. I assume from what you say that you are still working and this may well hamper your progress. Rest and slowing down activity play a major part in management of PMR. Your employer must be made aware of this and make allowances by perhaps shortening your hours/working days. Many here will tell you that they could never have carried on working with the disease.

There is much more to say but I don't want to bombard you with information. Others here will be along to advise and make suggestions. This is a friendly, supportive group with vast experience and depth of knowledge so stick with us.

Push for an urgent referral to a rheumatologist. Your doctor has extremely little knowledge of PMR and for him to believe that you are 'over' the condition in a month is ludicrous.

It will be helpful if you would add a little info to your profile, i.e. where in the world you are, age, working or otherwise, gender...

Take care.

[Buttonshutton in reply to 123-go]

Hi. Thank you. I have had some brilliant advice on here when first started with all this and that's what gave me the courage to question him.

I will add to my profile. My work know. One boss stated it doesn't exist. He was trying to be supportive as in don't just accept the diagnosis but really annoyed me as it does and I have classic text book symptoms.

Yes still working desk job but very busy. They all know about it as I'm forever moaning ! I work 9.30 to 4.30 Monday to Friday so not too bad hours wise

He is referring to rheumatology but not sure how long will take. I'm in the UK

Thank you for reassuring me that it's normal to have low markers but still active disease. I thought so from reading on here. But so confusing when doctors contradict. Why don't they understand this condition. It's bizzare isn't it

[123-go in reply to Buttonshutton]

The remark your boss made my blood boil! He has no right to make that kind of judgement and should be open to discussion.Your working hours are far more than most PMR-ers could manage safely or comfortably and you should be accommodated according to your needs. Your office chair is important, for example, and if you have an occupational health department I would make enquiries. Similarly, if there someone in HR you could speak to about reducing your hours I would advise you to do that to reduce stress as that is an enemy of PMR.

It becomes something of a battle but I sense that you are far from timid in standing up for your rights at work. Well done!

[Buttonshutton in reply to 123-go]

Yes I mentioned it before. Thought PMRPro was gonna explode with rage ! Unfortunately being a small privately owned company there isn't an Oc health dept but I do have a back support for my chair now. I'm one of those who doesn't like confrontation but then I fester if I don't say anything and hate myself so it sometimes come out in a temper from frustration rather than calmly approaching in the first place. I think because I appear "me" still. They don't quite realise how much it affects. Thank you for all your lovely encouraging words

[SheffieldJane]

Well done! You are clearly a graduate of this forum with honours and I like the fact that your doctor accepts the challenge with grace. My inflammatory markers remain low too, irrespective of symptoms. No harm in having a Rheumatologist waiting in the wings. PMR likes company unfortunately.I think we underestimate the benefit of change and a restful break. I think this has an important part to play in our recovery. It is hard to resist doing too much surrounded by our everyday responsibilities.

On bras: I have bought so many because of difficulty in fastening and discomfort from seams, labels and hooks and eyes. I have settled on a wide strapped, seam, wire and fastening free, sports bra type. A similar style in soft lace for best. Why on Earth have we put up with this ridiculous, tortuous, garment for so long? Especially if you have a big bust. Welcome to the site, share your pearls.

[Buttonshutton in reply to SheffieldJane]

What a fabulous idea Re bra. The front fastening ones are just as bad aren't they. Can't believe I never thought of this !! Thank you. I'm shopping later ! Oh yes this forum is teaching me loads !!!

[123-go in reply to Buttonshutton]

I agree with SheffieldJane and have converted from a form of mild torture to comfort bras- heaven!

[Buttonshutton in reply to 123-go]

Just been for bone scan. Had to lift arms up. Ow !!! Currently wandering round the NGH in Sheffield having lost my car and bra still undone. You gotta laugh !!

[123-go in reply to Buttonshutton]

Your sense of humour will see you through this: don't lose it-literally and figuratively! How are you still driving?

[Buttonshutton in reply to 123-go]

I seem to be ok actually in the car. It's getting in and out that's the bugger at times. Short commute which am fortunate in too

[piglette in reply to Buttonshutton]

I find Miss Mary of Sweden do comfortable bras. missmary.co.uk

[Buttonshutton in reply to piglette]

Thank you !

[Blossom20 in reply to SheffieldJane]

Glad you brought up the subject of bras! It's so difficult trying to find a comfy one. I find all the non wire ones ride up and I'm forever pulling them down! I've gone back to wired ones which I take off as soon as I'm home!

[123-go]

Well, that's something. Pleased you found your car 😀.

[PMRpro Ambassador]

My markers have always been "in normal range" - with or without pred. Without pred they chuntered along at 16-18 at a point where I could hardly move. with pred the ESR is low single figures.

After starting pred it was a real miracle within 6 hours at 15mg but it was several months before all the pain had gone - especially hands and feet and hip joints. And it doesn't take a lot even now for muscle aches in biceps and quads. I also have myofascial pain syndrome and greater trochanteric syndrome (used to be called trochanteric bursitis) which aren't well dealt with using oral pred. But they CAN be improved a lot.

He is right you need to see a rheumy - but you probably also need to consider moderating your activity while getting the pain under control. There are other things that really can look like textbook PMR so a bit more investigation won't hurt.

[Buttonshutton in reply to PMRpro]

Thank you. I am glad to be seeing the rheumatologist. I didn't realise other things could be identical. Hopefully we will get to the bottom of it if it isn't this. And relieving to know that it can take several months too. Thank you.

[Sharitone in reply to PMRpro]

Ooh! I too have GTPS. Have you got any tips apart from core exercises (which PMR/GCA don't always allow)

[PMRpro Ambassador in reply to Sharitone]

The clam knee-raise helped a lot but usually here I get myofascial trigger point release and work on the piriformis and lats and low back from physio plus regular pain clinic stuff who do a technique called needling as I shouldn't take NSAIDs as on anticoagulant therapy. All been a bit restricted during Covid though I did have 12 sessions of physio which is all we get at a time. I have a reassessment in early September - than goodness! The actual trochanteric bursitis bit hasn't been too bad as long as I don't walk too far but the rheumy has given me steroid shots in the past that work for ages. As long as the low back/piriformis bit isn't too bad I can manage but in an emergency an 800mg flooding dose of ibuprofen plus sitting against a hot water bottle for several hours is a life-saver! Not very practical here at the minute with afternoon temps in the upper 20s!!

[Sharitone in reply to PMRpro]

Thanks so much. I don't think anyone's going to be offering me physio in a hurry, but I've found the clam knee-raise on the internet. Sounds like a party on an American beach!

[PMRpro Ambassador in reply to Sharitone]

If only!!!!

[Constance13 in reply to Sharitone]

😂😂😂

[nickmits in reply to PMRpro]

Hi PMR Pro-- I tried Phyiso back in the day and it does nothing for PMR for the most part right? I did that and chiro and massage and acupuncture and none helped one bit-I understand why -- cause this is an autoimmune condition causing the issues..not a physical disturbance---take care.

[PMRpro Ambassador in reply to nickmits]

Not for the PMR itself - but possibly for what I call the add-ons in myofascial pain syndrome etc

[DorsetLady PMRGCAuk volunteer]

Hi, and welcome

Maybe have a read of my general info post, and PMRpro post on pacing - linked -

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk......

But also have a wander through the FAQs (pinned posts) - one here on blood tests -

healthunlocked.com/pmrgcauk...