I've been on 15mg pred for 3 weeks now (PMR). I have an appointment for a blood test on 20th August, and a phone appointment with a GP on 21st - I assume to discuss reducing the pred. I assume the blood test will be to check for ESR and CRP levels - but what exactly are they?! I know vaguely that they measure inflammation, but that's all.
If my inflammation markers are down, does it mean that the polymyalgia is lessening, or does it mean that the pred has reduced the inflammation? If my inflammation markers aren't down, can I still start to reduce the pred by a tiny amount? (Psychologically, it would boost me to reduce it by even 0.5mg!) I'm not getting any pain now (for a while I still had stiffness and slight pain in my hands in the mornings) so that's a good sign.
When I had the first blood tests, I didn't think to ask the GP for detailed results - he just said my inflammation markers were up; but this time I'll be sure to ask for details.
Thank you in advance - you're all so helpful & knowledgeable here!
The medication should reduce the inflammation markers as that's what it's supposed to do - reduce inflammation so that symptoms are relieved. It's wise to stay at the starting dose for several weeks, it being counterproductive to start reducing too soon, so you are within the guidelines so far. When you are still at a level like 15 mg your first taper probably will be more than .5 mg but it's very important from the beginning not to try to rush the taper. Slow and steady winds the race.
Just for the sake of an alternative experience - I reduced the dose as quick as I could as I had never wanted to take the steroids and I soon got down to 5mg probably took a few months and then after a few more months down to 1mg.Now I only take a half a tab or less but I still have to have some,can't do without. This is after about 1 2/3 years.
The ESR is the erythrocyte sedimentation rate - how fast the red blood cells (RBCs) sink to the bottom of a vertical narrow tube filled with whole blood. In inflammation the liver produces various substances in response to the inflammation. These tend to stick to the outside of RBCs whic in turn tend to stick together in clumps - which makes them fall faster. The distance in mm that the top of the column of RBCs has moved down in an hour is the ESR - higher when these proteins are present so an indication of more inflammation.
CRP is c-reactive protein, one of the proteins produced in response to inflammation. Again, the higher the reading the more inflammation is present.
But neither are specific to anything and ESR in particular can be changed by a whole range of factors. They are an indication - they prove nothing besides there is inflammation somewhere. CRP is less variable but not that much better. In the case of PMR and GCA they are not always raised and how much they are raised isn't actually necessarily an indicator of how bad the inflammation is. Up to about 20% of patients with PMR/GCA don't have raised levels - which tends to lead to problems with diagnosis. As a result - symptoms are ALWAYS trumps. In both directions - you can have a raised ESR/CRP but that shouldn't result in a kneejerk increase in pred dose unless you ALSO have symptoms. No symptoms - and you should get the bloods repeated a week or so later to see if it was a one-oof or if it is rising and setting a trend.
Once you start on steroids the levels should start to fall - because the pred relieves the inflammation. But that doesn't mean the PMR/GCA has gone away, the underlying autoimmune disorder that causes the inflammation is still there and chugging away in the background, still causing damage in the body and causing some symptoms - notably sweats and fatigue.
You are not reducing relentlessly to zero, you are looking for the lowest dose of pred that manages the daily dose of new inflammation - caused by the body shedding pro-inflammatory substances in the early morning, Preferably you would stay at 15mg until the ESR/CRP are well reduced - best is back into normal range but they do need to be steadily falling before starting to reduce the dose. If it is slow then you may even need a bit more but if your symptoms are gone you will probably be able to look at possibly 2.5mg down to 12.5mg. If it works great and stick there for another 3 or 4 weeks. If not, you go back to 15mg quickly and settle down for a week and then try 1mg at a time. It isn't a race - however much you want it to be. As soon as you let in a flare you have to go back - and you have lost the perceived advantage of reducing quickly. Tortoise and hare - keep it at the back of your mind. And never go into denial and refuse to admit those symptoms are building up.
Top experts in tapering say not more than 10% of the current dose. This is for 2 reasons - it is likely to be less uncomfortable for you and it will identify the dose you need more exactly. Reduce in big steps and you are likely to find that (maybe) you are fine at 10mg, definitely not at 5mg. But where? It could be 9mg, it could be 5.5mg, you can't tell. I suppose there is a logic in saying drop in big steps - but it is much more uncomfortable in terms of steroid withdrawal symptoms - and you might let a flare get away from you. Once you flare like that it can be difficult to get things under control and you may have to start right from the start again and sometimes even have to go higher which no-one likes.
Brian took that approach and was lucky - "his dose" is very very low. But men tend to be rather different in PMR - no-one knows why but hormones are postulated as a possible reason. Many people struggle to get down to 10mg in the first place and the median time to get to 5mg is 18 months. Everyone is different.
Is that all covered? Just ask if not!
Thanks, Anhaga - I'm being impatient, I know! I must not rush... I must not rush... I must not rush... 
Thanks, Brian. It's interesting to hear about a different tactic. Why do you think you still need 0.5mg - is it because the PMR is still there? Or withdrawal symptoms? Or because your adrenals haven't got back to normal yet?
I hope you don't mind me asking - I'm still on a steep learning curve!
As you say ESR and CRP measure inflammation. The pred helps reduce this. Normally people start reducing at around four weeks if things are OK. My rheumie got me to reduce 5mg after three weeks and it was a total disaster. He was mad keen to get me to 10mg virtually immediately. I am sure that is why I have had trouble reducing since. I have found it is better to listen to your body than your bloods tests. If you feel fine reduce, if you do not feel fine, do not reduce.
I do have other blood tests too and keep copies of all the results. I just ask the receptionist for a printout. We need to get our blood sugar checked regularly as pred can cause steroid induced diabetes. I have the HBA1C test. I also have Urine & Electrolytes every six months, vitamin D yearly, liver test, folates, full blood count and possibly some others if things look out of order.
Are you taking vitamin D and calcium to help counteract the side effects of the pred? You should also have a Dexascan to check your bone density.
Thanks, Eileen, for the very clear explanation of the blood tests. It reminded me that I have read an explanation before... but my brain is in such a fuddle, I forgot!
I don't seem to have symptoms at all now (it's only my shoulders, arms & hands that were affected originally - my hips/legs were ok). Even the tiredness has more or less gone - although I tend to wake up very early now, which makes me tired later, but that will have nothing to do with PMR, I don't think. The predominant symptom now is the brain fuddle, but my understanding is that that's due to pred rather than PMR - is that correct?
I do realise that I have to take this very slowly - if I reduce the pred too quickly it will end in tears. I just wondered about the psychological value of reducing by tiny amounts regularly (when taking higher doses) rather than 2.5mg or 1mg each month or longer. If psychologically someone feels they are making progress and/or are more in control, will it lead to a more positive outlook, and hence better sense of wellbeing? (The power of the mind, etc) I'm not going to try this (I'm going to be good and do as I'm told!) but I just wondered if any research has been done? Probably not!
That's interesting, ptolemy. I had to ask for a second blood test before I speak to a GP again (he was going to phone me to discuss reducing the pred without any blood tests having been done). I also had to ask for a scan (I'll have to wait a couple of months). Did your GP volunteer all the other tests or did you have to ask for them? There seems to be a big variation in how GPs deal with this.
I'm taking a Vit D & calcium supplement - and have been taking it for a few years because I have a bit of osteoporosis in one ankle. The GP wanted me to start taking a drug to protect my stomach from ulceration, but when I looked at the list of side-effects (one of which was bone thinning) I decided not to take it. I'll have to see what he says about that next week!
For the record, I was on 15 mg start for a month. Then doctor's instruction was to reduce by 1 mg per week, but to stop reducing if I felt return of pain. This I did. When I got to 9 the pain increased so I stopped the taper but wondered if I could increase my dose again. That was when I discovered the Patient forum and the answer was yes. So I went back to 10, symptoms subsided. i asked my doctor if she approved of the dead slow reduction I'd found through the forum and she said yes. But I would have tapered that way anyhow! The slow taper meant for me a reduction of about 1 mg per month until reaching 7 mg where I voluntarily started tapering by only .5 mg at a time, and also slowed down from the short form DSNS to the long form. I was at 3.5 mg at the end of the first year. This is pretty good and many people take longer. It then took me a year to get down to 1.5. Whereupon my hitherto sensible GP didn't renew my prescription and cavalierly suggested I use up my tablets, stop and see what happened. I did have enough tablets on hand to get to zero following DSNS so I tried to do this. The first attempt didn't work. This is quite common as one get lower and the best thing to do is stay at the good dose for a few weeks before trying again. but I felt under pressure to get this taper done before the tablets were gone so I tried again too soon. Then I knew for sure it wasn't going to work. Running out of tablets I went to the doctor, who turned out to be a locum and she suffers from MS so has a very good understanding of the patient's side of a long term inflammatory illness. She renewed the prescription, suggested I go up to 5 for a certain amount of time. I stupidly messed around for a long time at only 3 mg with repeated attempts t get back to my hitherto successful 1.5. Finally I gave up and went to 7 mg. It was time to visit my GP again and by then she must have read the copious notes made by the locum. She gave me a huge prescription with four renewals for 1 mg pred and let me loose to do my own thing again. That was nearly a year ago. I have now been back at 1.5 for about two weeks and it seems good so far. But believe me I will be really really cautious entering 1 mg territory this time.
My GP was pretty useless she had just qualified. I got quite a lot of the information from articles on PMR and the internet. The blood nurse and I would decide which blood tests I should have. She was a lot more up on things. I used to book a blood test every three months or so without asking my GP and they just did it. I did not even see my GP for two years. I do keep a copy of all tests that I have, I just ask the receptionist for a printout. I think I am becoming a blood test nerd!
I take coated pred which means I should not have stomach problems. Some people who take the uncoated pred take tablets for their stomach and others just take yogurt which sounds a much better idea to me. Doctors also do sometimes suggest bisphosphonates for bone protection even if your bones are OK. I think they become paranoid about pred. Your Dexascan will tell you what your bones are like and you can go from there.
I do think that reducing pred based on how you feel is more important than looking at blood test results though.
Hi when I first started with PMR I was confused with all the blood tests, but after finding this site, and all the great people here I found out about blood tests, and also I was told to get a copy of any blood tests I had done, four years on and two days after my bloods have been taken I go to my doctors and as the receptionist to print a copy for me. I can then keep a check on my ESR/CRP, and take this with me when I go see my rhymi I case I have a problem in understanding , and I must say they do help me and never comment on why I do this.
so maybe you could do this, but some one will come along and tell you more info who are better knowledgeable than me.
best wishes
Are you in the UK Mhairi? If so you could ask for enteric coated /gastro-resistant pred (only available in the UK) - saves needing the PPI. Or you could try ranitidine/Zantac - does the same thing but with different side effects although it could also lead to lowered bone density though isn't by any means as bad as PPIs. If you do ask for enteric coated pred it comes in 5, 2.5 and 1mg doses (you can't cut it).
Maybe pred, maybe not. I certainly had brain fog for the first few years and I wasn't on pred then as I wasn't diagnosed until I worked out what I probably had! Autoimmune disorders are often linked with brain fog.
No, no research, there is no research on reducing or even ideal doses as yet. But anecdotally, from the hundreds of people I have "met" on the 3 forums in the last 9 years - going slowly provides a lot of advantages. Patients worked out slow approaches to reducing and at a conservative estimate hundreds have used one or other. Mine, Dead Slow and Nearly Stop (DSNS) is in the repies part of this thread:
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
The first post is all our links to useful info. Scroll down and you will find DSNS. As it explains it is in use in a clinical study in the north of England - feedback was good last time I asked. Some people have even got to zero and off without ever having a flare due to overshooting. Something some doctors assume is par for the course and always happens. No, it need not.
I agree, it doesn't matter what it is, if you feel you have control of something it helps psychologically - a lot of people undertake heroic efforts with diet because it helps them feel more in control. In fact, just limiting carbs is the simple answer in PMR and pred - no real need for supplements and fancy stuff. CBD oil is still an unknown with mixed reports from the people who have tried it. I have a Canadian friend who is using it - and is sure it is helping somehow. But it is difficult to tell - the underlying cause of PMR varies in activity a lot over time and it can burn out at any time - but the only way you know for sure is that you get off pred without symptoms returning.
I have a very robust attitude: I need the dose of I need. As a result I manage my own dose (my GP here in Italy is fine with that). I have recently had access to a rheumy - a "Name" in PMR and GCA and I get on very well with him but he was desperate to get me to try methotrexate after 9 years on pred. I eventually gave in and took it for 4 weeks. NO! Absolutely NO! But he accepted it and I'm back to the dose of pred I need to keep me functioning well. I have to admit - it isn't just the PMR. For some reason it seems to have a big effect on the atrial fibrillation I have which was almost certainly caused by the autoimmune part of the PMR. But with the right dose of pred I have no real limitations on my lifestyle. I still travel, I have given up skiing though I did ski for a long time - a few reasons involved there. I feel well - what else can I want?
Thanks, Anhaga - that's really interesting.
Thanks, Margaret - I'll do that!
Yes, I'm in Scotland. I'll mention the coated pred when I speak to a GP next week.
PPI - I take it they're drugs to protect the stomach, but what does PPI stand for?
Proton-pump inhibitors = PPI
You are not reducing relentlessly to zero, you are looking for the lowest dose of pred that manages the daily dose of new inflammation....A quote from a recent posting by Eileen. I had to read it two or three times to really get its meaning. Pred does not “cure” PMR, it only minimizes the symptoms. PMR has to run its course (whatever duration that is) whether or not you take pred. Find out the minimum level of pred that manages your symptoms, and live with it until it moves on.
Proton pump inhibitor - stops acid production.
Meant to say before - don't take a bisphosphonate (alendronic acid to protect bones) without having a dexascan first to see if you need it. I haven't and my bone density is almost the same as at the start 9 years ago.
Where in Scotland (sort of assumed that from your name)? Scotland has its own chairty and support groups in some of the bigger places - Dundee and Glasgow and I think Aberdeen. There may be others.
https://www.pmrandgca.org.uk/