Azathioprine

Hi Eileen and wow :wow: - what fantastic research with very interesting stats.

Seems like I was one of the lucky ones then to manage to reduce below 20 by 1mg a month with my bloods remaining normal right down to 5........when the fun began!

No wonder even the experts get confused when some GCA sufferers have the TNF factor in their blood vessels and yet the anti-TNF drug proves to be of no benefit!

Thank you Eileen for all your hard work on our behalf - I found this very interesting reading and after all that you're the one who now definitely deserves a bubbly :bubbly:

Off to watch \"Strictly\" now - poor Anne Widdecombe, but I'm sure we'll see her next week!

MrsO

Thanks again, Eileen for all your work on our behalf.

[quote:7e59280bbf]but it is not unknown for treatment to be required for 5-7 years

As I have previously reported, my friend ( male and in his early fifties at the time ), took 11 years to get off but was and remains fine, having sustained a multiple heart by-pass and will soon, as he loves to tell us, be in his ninth decade. I quote him to myself when I want to hurry to get to the end of steroids.

Wonderful two days here and another to come, we are told. Hope you all had the same. Best wishes for a good week. BettyE[/quote:7e59280bbf]

Sorry. Forgot AGAIN to press Quote at the end. Hope all is clear. BettyE

Tee-hee - maybe the site has PMR/steroid brain fog too!!!!!!!

Nice of you to blame the site, Eileen but I'm afraid I am the culprit. Bad enough to get forgetful, mustn't be dishonest, too!

Our promised good day has arrived.Must go and soak up the Vit.D. BettyE

Hi there

What a wonderful lot you are!! And how sad am I! I can't wait to log on in the mornings to read all your thoughts.

Eileen - I'm particicularly interested to hear your thoughts about you research into Azathioprine. You are amazing! I am now even more puzzled as to why its being suggested for me. I'm only (only?) 64 and otherwise in robust good health. I also have never had the other blood test mentioned - something else to educate my GP about.

I'll report back after my next tests/visit.

And Ann Widdicombe is still there!

There was some work earlier suggesting the use of steroid sparing drugs in PMR and they are used in other diseases successfully - amongst them rheumatoid arthritis (RA) which some think is a close relation of PMR.

I suspect the problem may be that medics don't necessarily understand the concept of critical evaluation - some do, when they are very involved in research. I'm not brilliant at it either (don't get enough practice) and a lot of the statistics is beyond me so I can't criticise that aspect of a study. Just because someone publishes a paper that says something works doesn't mean it does - you need it to be replicated by someone else as confirmation with a decent number of patients not just a few. Your average doctor doesn't have the time to look at it all and keep up - here, they should if they are rheumatologists but there is a lot of stuff in rheumatology and PMR is a bit of a poor relation. They remember seeing a report at some point, know you can do this in other diseases - oh right, it'll work in PMR too. Many are scared of steroids - their history was bad and most of the patients they see are older and multimorbid (lots of diseases at the same time) and as MrsK pointed out at the weekend, some of the side-effects are actually side-effects of getting older, how do you tell which is which?

It is clear from some of the papers that the mechanism of GCA is not clear - they thought the presence of TNF meant anti-TNF should have an effect. It doesn't in the short-term at least, that was very quickly clear and they abandoned the trial. They do not yet have any idea what causes PMR so you cannot target treatment in that way. So steroids remain the gold-standard. Used properly in otherwise healthy patients you can have excellent results. But some doctors think the other, fancier, perhaps more sexy, drugs must be better and you'll avoid all the problems with steroids. They forget that this patient may not have too many problems with steroids - and that the other drugs also have nasty side-effects and may have a much greater impact on your previous way of life. If I had RA I'd have no problem with taking methotrexaxte and having to give up my glass of wine - it's horrible disease and you need a tough drug to slow the progression. I don't, I have PMR (it seems distinct enough according to the literature, I had the sore muscles which almost never appear in RA) and, frankly, I do very well with steroids so far. So I'll pass on the MTX for now until it looks as if I'll be on a moderate dose of steroids forever or I have other problems. But at less than 9mg/day after a flare I'm satisfied enough at present.

Looking forward to your report back! Hope you have a friendly doc who doesn't mind being educated!

EileenH

Hi everyone

I thought I would report back after my latest visit to my GP on Monday. She had finally got clearance for me to have Azathioprine because I have the requisite enzime (if you don't have it, the drug will kill you! - not very comforting I thought). So I asked why she/and the consultant were anxious for me to have it. The response was interesting. Firstly, it was because I look like someone who has been on steroids for too long, (actually since April this year)with my significant weight gain and moon face. But if its a choice between looking odd and losing my sight, I think we would all make the same choice. Then she desribed another patient who had been on steroids for some time, who had become \"manic\" and had broken a leg because of bone density problems. Neither of these concerns have any relevance to me (as far as I know!!)

After a long chat, we agreed that I would continue with my gradual reduction regime for the time being keeping the Azathioprine in reserve. I am now down to 18mg per day and am still feeling fine.

Hope you don't mind, but I have two more questions:

1) I have never had or been offered a CRP test. What does this measure and how does it differ from my SED test?

2) Am I right in thinking that a \"flare\" in GCA is a recurrence of the original symptons (in my case - a severe head ache). Thanks for the hint about keeping a reserve of 60mg.

3) My SED test is still high (68) and I think this might be one of the htings which is panicking my GP. From what I have read on here, its how you feel which matters and these scores are not particularly informative. Is this right?

Very kindest regards to you all

Pat

PatsyAnn

Before I start, let me make it quite clear, I have GCA but do not have PMR and luckily still do not have it.

The CRP test is Creatine Reactive Protein (as described in the BSR Guidelines issued June 2009 on both PMR and GCA).

This is the test that both my GP and Rhematologist are always more interested in as the ESR test is done as well. But although the ESR can flunctuate, they do not seem to be bothered as much, but when the CRP goes up - boy they get worried.

I was diagnosed in Feb 2007 and started on 60mg (I had every symptom of GCA in spades and was extremely lucky not to lose my sight). It took me till December that year to reduce to 20mg, and I had put on weight, moon face and peach fuzz. I was them put on a reduction plan which was for the following year. However as I had two flare-ups (not just a headache) but the headache, plus jaw ache and sore left temple) first time up to 60mg then a rapid drop within a month, back to where I was, second flare, 40mg put it back into place and then quickly down to 15mg. It has taken me till June this year to get down to 3mg.

However, I lost the moon face, peach fuzz very quickly, but the weight more slowly, taken nearly three years to lose 2 stone and still carrying far too much weight.

I was offered Meth and said - No. I have never been offered anything else, would probably have said no as well. But them your circumstances can change.

During these three years, each time I have had something else go wrong, ie kidney infection, stomach upset, bronchitis, both the ESR and CRP have gone off the scale. They are guidelines only - its how you feel in yourself that counts. I have finally got my GP to stop panicking about the CRP.

However, I have had three Dexa Scans - bones still holding.

Developed Osteo Arthritis in the right knee (but my mother had it) and the Glucosomine - which I now have to buy as the NHS will no longer proscribe it - is of great benefit.

During the last two months, I developed aches and pains everywhere (yes I did have and still have constant lower back pain - to do with adrenal glands) but this was really getting me down. Had a Vit D test and you can read the outcome on the Vit D thread. And its not just us PMR and GCA people who can be short of Vit D, it probably is nearly everybody over 60 who lives in the UK.

Your GP should do a full spectrum blood test every three months (ask them to include the Vit D test as its more expensive to have) and a CRP and ESR test every month. You keep a record of the results and then you can judge what is happening to you.

There is so much more to tell you - but the best I can say, is read people's stories on both the Scottish website and the North East website.

This is a strange journey we are all on - but if we can help each other - then together we will get there - wherever 'there' is.

If this does not help - email me on this site.

Patsyann,

I think what MrsK has written really answers your GP's \"you look like you've been on steroids too long\"! The weight gain with steroids can be in a couple of weeks at a high enough dose - and you were at the start. The moon face goes away as the dose is reduced. And as my husband said when he was told his chemo could make him deaf \"deaf or dead - hardly a difficult choice is it?\" - in the case of GCA/PMR it would be \"bonny or blind...\". I'd rather be a size 10 but I'll accept what I have and being able to move! :roll:

\"Manic\" - does happen, is NOT common, is much more likely to happen at doses above 40mg (1.6%) and rises as the dose gets even higher. It is more common in certain diseases requiring steroids. It doesn't happen from one minute to the next and if you are seen to start to get hyperexcited - you go to A&E and tell them, there is a window of 24 to 96 hours where medication will prevent it getting any worse. Reduction of steroids alone cures it, the right medication does the job even more quickly.

Broken leg - well, I broke mine 17 years ago without being on steroids (OK, I was on skis :lol: ). After 16 months on steroids I have just attempted to get a second DEXA. It has been turned down by the rheumatologist who the first time said I'd not been on a year so didn't need it and the second time went into more detail to justify her decision by saying most of the bone density loss occurs in the first 3 months (I had thought it was the first year) and if you were OK at that time you should still be OK to ski now. The first DEXA was after I'd been on steroids for a couple of months so on her basis that was when a fair bit would have gone. Did you get a DEXA at the start? If not, you should have had one as a baseline, but get one done now. There is, however, little evidence of association between slight reductions in bone density and fractures. They are, apparently not accurate enough to pick up small changes in bone density so they are usually done every couple of years. Are you on alendronic acid? It has some down sides but is usually given to long term steroid patients, especially on high doses, to combat loss of bone density.

What's your ESR - is that 60? What was it originally with the GCA? That is still high - normal is something like your age +10 divided by 2, but even that is only a rough guide. I don't know why they make such a thing about ESR - mine has never been above 6 (six) which is exceptionally low for my age, that's why they said I hadn't got PMR for 5 years! And it's a guide, nothing more. The real guide is how you feel - and that is what the rheumatology text books say. Far too many young doctors are fixated on the \"lab values\" and are unable to make a clinical decision based on EXAMINING the patient and using their knowledge.

The CRP is a protein in your blood that is far more specific to rheumatology ailments and is usually raised in GCA/PMR but mine has also never been increased. The ESR or sed rate is measured by putting whole blood into a tall thin tube and looking at how quickly the red blood cells settle to the bottom and is measured in mm per hour (if I remember rightly). Several things can affect it and it can be raised just because you have a viral infection. It isn't a specific indicator of anything - you'll get raised values for loads of different diseases.

Anyway - you've avoided the \"heavy artillery\" for now which is a good start. You are on the way down and as long as that continues all well and good. MrsK and MrsO have both had GCA so they are the best to provide anecdotes of what happens in GCA.

At 18mg you are nearly at the sort of level those of us with PMR started at - and many of us put on weight so it's not surprising you are cuddlier than you used to be. It will probably start to come off as you go down the dose. It helps if you keep your carbohydrate intake down and protei