Hello all
Beev here - sorry I haven't been on here in absolutely ages. Completely immersed in family problems I'm afraid since I retired! Golden retriever also takes up an enormous amount of time.
I am currently on 2.5mg alternate days (i.e. 1.25 a day). For those of you who remember me, I can't take the uncoated 1mg because of stomach issues. I have been on this dose for many months now and don't seem to be able to get my ESR below 20. In the past, I have waited for it to be mid teens before taking a drop but am tempted to just have a go anyway.
I also recently attended a talk by Prof Dasgupta, during which he said that steroid injections can help when people are finding it difficult to reduce. My GP says she knows nothing about this so we are considering a referral to the great man himself.
Any suggestions on this please? I'm sure Eileen will have the answer if she sees this.
Thanks in advance for your help
Beev
Hello Beev, and welcome back!
Although slightly high, an ESR of 20 might just be 'normal' for you. 0-20 is considered to be the normal range, and it can increase with age. If it has been lower in the past, that could be just the higher dose steroids getting it lower. None of us knows what is 'normal' for us as we probably never had reason to have it checked pre-PMR.
You really need to go by your symptoms and how you are feeling at your present dose. If you are feeling fine, then perhaps you could just try taking the 2.5mg on every third day and see how you go.
The Prof gave a talk at the Charity's June AGM in London, and I'm wondering if that is the meeting you are referring to. If so, we might have been sitting next to each other!!
I expect that Golden Retriever is a little bigger than the new pup you told us about a while ago!!
Welcome back beev!!!!!
ESR doesn't mean that much really - it can be raised with a cold or other infection. Mine has never ever been above 7 - even when I couldn't move. It is normally at 4 or so.
What is your GP's take on it? How broadminded is s/he? There is a form of coated pred approved for use in RA called Lodotra. The coating means it takes 4 hours to break down in the gut - which means it is beyond the stomach - and it comes in 2mg and 1mg tablets. It is quite expensive, about £27 for a pack of 30 pills but since you are on 1 every other day they might wear it to allow you to take less on alternate days. But have you tried 1 day in 3 again? You could try it and make sure your ESR is monitored.
But really - 2.5 every other day is so low I wouldn't worry. OTOH - why does the GP have to "know anything about that". Hasn't she got a mind of her own to think with? The injections are a different form of pred I assume, don't know what doses they come in but if they come in small doses it is worth her trying, You'll wait an age for a referral to BD I'd think.
I have had steroid injections twice in the last year. Once for a possible frozen shoulder and once for a very swollen knee. Both times the systemic effect was fantastic - when I had the one in the knee my CRP level went from 24 down to 3. I did wonder whether it would be a good idea to reduce while I was feeling so well and pain free but was worried that when the effect from the injection wore off I would have a flare up. But I think it's definitely worth a try.
It is very common for PMR to be diagnosed as a result of this sort of thing: someone has a bad shoulder (probably from the PMR) and the doctor decides to try a cortisone injection. Then the patient realises that all sorts of other minor aches and pain disappeared as a result.
One of the big problems with reducing the dose is the "steroid withdrawal" effect - if you can hang on for a couple of weeks that usually settles again but those couple of weeks can be grim and many patients and doctors panic that it is a flare. The cortisone shot would bridge that period, reducing the steroid withdrawal discomfort as the blood level will fade slowly. The trouble with tablets is the change in dose is stepwise - the smaller that step is the better. Since beev is restricted to a 2.5mg step the effect is particularly noticeable.
Thank-you all. You are so amazingly quick with your responses! I think I will try my next reduction as you suggest, Eileen. I will do a cycle of 2.5, 0, 2.5, 0, 0, 2.5. I don't know what my normal ESR is, Mrs O - was only 37 at the beginning of the PMR. Normally I have been able to keep it aroung the mid teens since then.
I do have some age related things like slightly clicky neck and often get some shoulder issues which I don't think are the PMR so those could affect ESR I suppose. However, I wonder if they are associated with PMR.
About to go on holiday so will reduce after.
I hope you are all well. I haven't been looking at this forum for ages so don't know how life is treating you.
Oh, and I saw Prof Dasgupta speak in Taunton. he was very good but spent most of the time talking about GSA.
Think I would see him privately if I do because it's nearly 5 hours away and I wouldn't want to get there and then see one of his underlings!
Beev
And I forgot to say, I will look into the Lodotra if the next drop doesn't work. My GP is fairly open-minded but they are so money-minded nowadays.
Beev
Just posted a discussion and noticed this and was wondering how long you have been on prednisone and if you are sure your pmr has gone and how can you tell. I ask because that was what my discussion was about - how can we tell??
I'm not sure how to answer that Denise. Have often wondered myself. How much is it that your body gets used to the pred? Personally I am so low at 1.25 a day that I think there can't be much of pmr left? But I kind of imagine that too fast a reduction could make it surge back. Not sure I'm right about that though. 2 years ago ( I was diagnosed 4 to 5 years ago) I was very nearly off the pred. Reduced like a dream and was on 2.5 every 5 or 6 days then my esr plummeted much lower than usual to about 7 and a week later jumped up to 37 so I panicked and went back to 5 a day. I had symptoms too but not as bad as at the beginning. Never understood that unless the pmr was still active. Sorry probably not much help. What dose are you on and how long since you started? One thing though, I am aware it predisposes me to bursitis. I can't walk more than about 4 miles without feeling it in my hips.
Beev
A couple of ladies in the UK are using Lodotra on private prescription. The cost obviously depends on how many tablets you need to make up the dose, where you need 3 tablets it is the best part of £100 (don't see how, it doesn't cost that much here) but for 1 tablet every other day it wouldn't be so bad. But then - you have to be able to afford that too in the current economic climate.
Hi Eileen
I don't quite follow the pricing of Lodotra. In one message you said £27 for a pack of 30 and in another £100 for 3 pills?
Beev
One pack of pills costs about £30 in the UK I'm told. That is a pack with 30 pills and they are the same price whether they are 1mg, 2mg or 5mg pills. If you are on any dose that requires more than 1 pill to make it up you need 2 or 3 packs per month: for example, 4mg needs 2x2mg pills so 60 pills for the month, 2 packs, £60. For 8mg you would need 5+2+1 which is 3 packs, 3x£30 or thereabouts.
With a normal NHS prescription you, personally, pay the same for 30 pills as 60 pills if they are the same dose, just one prescription charge. If you need a pack each of 1,2 and 5 then it is 3 prescription charges. But privately you will pay the full price for each pack you get. So depending on the dose you are on currenly you pay between £30 and £90
Lodotra is available in the UK for RA on the NHS but hasn't been approved for PMR - that's why you would probably need to get it privately. You are down to 2.5mg, next step would be 2mg - one pack for a month if you took it every day since you aren't going to need more than a single pill to make up your dose now. And when you get to alternate days - the 30-pill pack will last more than a month won't it.
Thanks Eileen. I am on 1.25 a day at the moment. I will try to reduce using Pred first and just see what happens then ask my doctor about the Lodotra if necessary. Is the drug exactly the same?
Beev
Lodotra is prednisone rather than prednisolone and its coating is designed specially to break down suddenly after 4 hours in the gut together with food - so it is the same as taking ordinary pred and the blood level shoots up quite fast compared with enteric coated. You take it at 10pm and that means the peak level of pred in the blood happens about 4am, just before the cytokines that cause the stiffness and swelling are shed in the body. It is the easy equivalent of taking ordinary pred at 2am to avoid morning stiffness - but for you the advantage would be it is coated and comes in 2mg and 1mg pills.
Thanks beev I have only been on pred 4 months so I guess I do have a long way to go as the others have suggested. Scary about bursitis as I already have that in my shoulder and it flares if I do anything much with it even cleaning windows.. Appreciate your jottings
Shoulder bursitis is a part of PMR for many people - especially probably if you already have a predisposition.
Cleaning windows?????? What's that! That is exactly the sort of action that isn't good for PMR shoulders or muscles - mine are done once a year and I get someone to do them for me.