ANA and ENA Antibodies

Carol Anne

A little bit more information please.

When diagnosed, what started on, how long on current dose.

ESR rate is only a guide and different Trusts have different scales. Some people never have raised ESR or CRP markers.

I also do not know what ANA or ENA antibodies are, someone else on the site might.

The aim with Pred, is to keep you as pain free as possible, so if you are suffering a lot of pain, then the dose is not high enough, if just a low level then its probably right.

I think your GP sounds fine, sending you for an Ultrascan means she is checking that everything is OK.

Hello Carol Anne

The ESR marker may, of course, have raised due to a flare in the PMR but it can also rise in response to any common infections.

As your GP is arranging an ultrasound scan of your abdomen, I am wondering if he is checking to rule out abdominal aortic aneurism something that can occur in the case of GCA (among other causes). A Dr is shortly to be starting a research programme looking into this and I have been invited to sit on the panel as a sufferer of both PMR and GCA which is how I came to hear about this condition.

As far as ANA and ENA blood tests are concerned, I believe these are carried out to look for other rheumatic conditions such as rheumatoid arthritis but I'm sure EileenH will have much more technical knowledge of this.

I think it's great that your GP has suggested the ultrasound - mine wants to see something in writing first before he sends me!!!

Best wishes,

MrsO

Hi Mrs K and Mrs O

It started in 2007 but I was only diagnosed in May 2009 and started on 30 mg dropping down to 20 then 15 then gradually down to 7.5 - even though I dropped the dosage I have never been pain free - say 75% better. So I'm now back up to 15 mg.

Do you think that the longer you have it before it being diagnosed it takes longer to cure? I was only 53 when this started. I am beginning to think I will always have this stiffness.

Thanks for the quick response - I feel better now I've got that off my chest.

LCarolx

Hello again Carol

Your question as to whether \"the longer you have it before being diagnosed it takes longer to cure\" is something I have often pondered as I was undiagnosed for a year with very high inflammatory markers and, like you, I never managed to become pain-free until the very low doses, unlike some lucky people who once their inflammation is under control do become pain-free more quickly.

I have often wondered whether some of those people who make textbook recoveries are the ones who have had early diagnosis and treatment but knowing how complex PMR is, I doubt there's an answer to that. :? I do, however, know a few people who were diagnosed promptly and were off steroids after a year!

My stiffness didn't really disappear until I was reducing between 2 and 1mg. However, I was lucky in that I was able to go by my blood test results - if they were raised, I didn't take the next reduction until they were normal. If I had had to rely on how I felt alone, I fear I would never ever have reduced! Plus, of course, PMR will only burn itself out when it is ready and that has proved to vary from person to person.

30mgs is quite a high starting dose for PMR - 15mg and sometimes 20mg are more usual but some GPs seem to prescribe a higher dose in the belief that if they attack it aggressively, it will bring about better results in the long run.

I commenced on 40mgs with the arrival of GCA and managed quite fast reductions down to 15 which is the dose that my rheumatologist said usually controls the inflammation.

Carol, as flares are common in the first couple of years, it might just be that you are unfortunately experiencing one now. But thankfully your other antibody blood tests are normal and it will be reassuring for you to have the ultrasound now to rule out anything else which may then confirm this is truly a flare. Good luck and do come back and let us know how you get on.

MrsO

Hallo Carol Anne.

I was sent for ultrasound just over a year ago because of severe discomfort in my middle. I don't know what was being considered but all that showed was a kidney cyst which is apparently common in over fifties.

Hope you get a reassuring result. Best wishes. BettyE

Carol Anne - I wonder the same thing as I had PMR with normal blood values for at least 5 years before it was labelled as PMR and although I responded very fast to steroids (within a few hours) and was reasonably pain-free at 15mg/day, I now am struggling to get below 10mg a day (I got lower, had a flare and urinary tract infections which the GP didn't believe and didn't send a urine for culture, and had to up the dose). That's now sorted - I'll try again. However, the chestnut of \"PMR lasts 2 years or so\" is just that - a chestnut. Mine never went into remission in that 5 years of no treatment or in the two years since it became really bad and I finally was put on steroids.

The other point I'd make is that there is no cure for PMR - the steroids make it possible for you to manage it as long as the disease process is active but they do not cure it. Some people are lucky and go into remission - some sooner than others. About a quarter of patients get off steroids in a year, about half manage to get off in 2 years or so. Some need steroids for much longer, a few even need a very low dose for life. More of the people who get off steroids in a year have a relapse later than in the other groups. It is also very common to have flares in the first couple of years and they need a return to a higher dose to control the inflammation which is the cause of the pain and stiffness before continuing with the reduction programme.

But if you were struggling at 7.5mg - the dose was too low for the state of the disease in your body. You cannot just take a high dose for a few weeks to get rid of the inflammation and then taper the dose and stop taking it as is the case with many of the other things where steroids are used such as asthma or gastrointestinal diseases like Crohns or diverticulitis. Taking steroids for PMR means taking the dose that makes life liveable for you until the PMR decides it will stop being active. How long is that? How long is a piece of string? The basic choice is to be an invalid to one degree or another on too low a dose or no steroids or to take the steroids at a level that means you can function. Many doctors also do not understand this basic status and try to force the reduction \"because taking steroids is bad\". Not taking steroids is also bad - patients with PMR who are NOT treated with steroids are much more likely to develop GCA than patients who ARE treated. The presence of inflammation in the body over a prolonged period also pre-disposes you to developing cancer - a good reason for taking steroids.

But the bottom line is that PMR does what it wants, when it wants - and you can only hope to be able to manage it reasonably well and live as good a life as possible. Which lots of us do - so it's not all bad! :lol:

EileenH

Carol Ann

Take a look at http://www.pmr-gca-northeast.co.uk

Loads of medical information, useful tips, people's stories.

And perhaps a Support Group near you.

Hello Carol Ann

I think my Dr is of the opinion if you dont act fast it doesent respond as well With my first bout of PMR my ESR was only low but my CRP was raised and really with both bouts she has taken note of this more than ESR I rsponded to 20mg very quickly and was down to 1mg in a year and on that for another 12 months just as protection

My 2nd bout started with much higher ESR and CRP as earlier that year I had a \" false alarm \" with some aches in pelvis and tops of arms along with lots of throat bugs but by the time the bloods were done I felt fine So when I had pains later in the year I just thought it was a repeat performance but it wasnt My Dr said I should have come sooner but she started me on 20mg again but said not to worry if we had to go to 30mg to get the inflamation down Luckily 20mg sorted it

After 14mths I was on 4mg but wasnt 100% and wheras with the first bout my bloods were very stable and very low as soon as I was on steroids they were more erratic on this A month after this I had a total blip and was increasing gradually but my Dr said she thought I would need 15mg to sort this as my bloods were both up towards the 30s and she was right Another 14 months and I am going slowly to 3mg

I didnt until this bout think it lasted any longer than 2 yrs !! Because my first bout went so smoothly I never needed any help with it !! So I definately have taken longer this time because I didnt start my treatment as soon

It is i know very disappointing to struggle to reduce then go back up but there are people on here who have struggled for years but got there in the end The most important thing is to continue with the steroids to live as normal a life as possible and some people do live on a maintenance dose of 5mg forever

Best wishes and I hope you improve soon

Mrs G

Thank you Eileen Mrs K and Mrs G

for your responses - its so useful to be able ask questions on this site to put you mind at rest as mine does tend to go into overdrive (think I'm President of the Hypochondriacs Society!)

Another question : I take my steroids about 10.00 am and round about that time every day I feel more achy and sore in my neck and shoulders which reminds me to take them - so do the day's steroids only last a day if that makes sense? As if they are wearing off.

My doctor is thinking of putting me on a steroid sparing agent too - anyone tell me how this works.

This disease is a mystery .

Love to all - so glad you are all her to call on - means a lot.

Carol

Carol Anne

What steroid sparing agent, is it Methotextrate?

If so, are you on 10mgs of pred or below?

Read up on Metho, both on this site and on the North East site.

10am is a bit late to take your steroids, can you not have a cup of tea and perhaps a slice of toast or a biscuit immediately you wake up, then take your steroids and wait for about an hour, before you start your day.

Your adrenal glands, replenish themselves during the night, generally about 2am to 3am so it is there waiting for you to start your day, all geared up and ready to go. But on steroids, your glands stop producing so you need to replenish it first thing in the morning.

I have done that all the time, and if I have an early appointment say 9am. I put the alarm on for 6.30am, cup of tea, slice of toast, steroids then snooze till 8am. Mind everybody now knows, including the surgery, don't ask me to come before 10.30am.

Yup it is a mystery, and someday (not in my day) somebody will solve it.

Carol Ann - the anti-inflammatory effect of steroids lasts between 12 and 36 hours, depends on you to a great extent plus the level of inflammation is also important I would think. I am lucky - I take my tablets every other day and the effect lasts until the late afternoon of the second day. And, strangely, I get up on the next morning feeling better than when I went to bed!

I think you would be much better to take your steroids about 8am at the latest and see if that helps the morning stiffness as they should start to work much earlier in the day. One or two people take most in the morning with a small dose last thing at night to deal with the early morning stiffness that is such a characteristic of PMR. Take it easy for the first hour or so, a warm shower will help the stiffness too so you can start to get moving - once you get moving the stiffness will resolve even without the steroid effect.

There is a lot of discussion on here about the steroid-sparing drugs - there is still a fair bit of controversy about whether they work. search on here for \"methotrexate\" and \"steroid sparing\" to find the threads. I think it is a big decision to take and one I would be reluctant to make without a lot of evidence to convince me. There is a lady who has written her story on the PMR-GCA support site MrsK has recommended to you - read it.

EileenH

Hello CarolAnn

Yes i take my steroids earlier too usually about 8.30 I am normally up by 7 ish after my cup of tea in bed !! I usually potter for a bit nothing to heavy then I sit and have my breakfast and then have my steroids and sit for a bit again ( good old breakfast TV ) !! I have found by trial and error that if Ive taken the steroids then am immediately up and doing a lot I feel a bit sick

I like Mrs K try not to have appointments too early and if i do breakfast is earlier

This is my personal opinion that I wouldnt want to take Methatrixate because of problems that people I know have had through taking it for other illnesses but thats me and I am hoping that steroids will do the trick so I wont have to make that decision

best wishes

Mrs G

MrsK and Mrs G

I try not to have appointments too early either - I've just had a 'phone call offering me an appointment for the MRI on 21st March....at 8.15am! :yikes: The journey takes me across the M25 with all its intersections in the rush hour! I just hope I'm awake enough to remember to don some clothes before I get in the car! :roll:

MrsO

MrsO - I'd seriously consider a night in a hotel the night before! You might find something affordable! Sometimes I wonder if they consider the fact that most people needing these tests are actually ILL! :roll: :lol:

When they built a new hospital in Durham the council wouldn't give permission for a larger carpark - it wasn't even big enough for all the staff! They wanted everyone to use public transport. No thought that the buses didn't start until about 7am and finished about 10pm - nurses start before and finish after that! Or the villages that needed at least 2 changes to get to the hospital (they were in the minority, most would require 3 changes each way). Public transport is fine for getting from C to D - A to F don't work! Grrrr! :roll: :steam:

EileenH

Mrs O

That sounds terrible I think Im with Eileen Premier Inns quite often do cheap deals and you can pack your own breakfast !!

Our local big Hospital ( Southampton ) is impossible to park at They are moving more and more departments there and less and less parking They did want to build a higher car park and were turned down which I failed to understand as all the hospital buildings are tall !!

Glad you dont have to wait long but that time !

Mrs G