Waiting for the blood test

Hi Eileen and thank you for such a comprehensive response.

I am certainly feeling it after just one day on 10mg so will take 15mg tomorrow and alternate for a while.

Do I then alternate between 12.5mg and 10mg for a month?

I dropped from 20mg to 15mg without much effort but the drop to 10mg is really hurting!

Tilly

Hi Tills,

I was full of envy and amazement when you said you were dropping from 15 to 10 because that is a huge percentage. But now I see you are having trouble as so many of us do. Can you not get 1mg tablets? You will need them later for sure anyway so why not now? I never dropped by more than 1mg at a time below 20 and it seemed to make it easier. Then by half a milligram. And even then I have trouble below 3. I just had to go back up to 5mg a day so will have to do the drop even more excruciatingly slowly next time. You may need to try a different method in order to keep the pain at bay.

Lots of luck to you.

Jill

Hi Jill,

Please don't be full of envy and amazement. I am suffering! I will be back to 15mg tomorrow.

I will try 10mg again on Sunday but I need to be 'firing on all cylinders' on Tuesday so this experiment may be short lived.

My preference would be to reduce to 12.5mg for a while but the consultant suggested I dropped straight to 10mg. He is happy for me to make my own choices but thought 10mg wouldn't present me with problems.

I tried to do some exercise but just couldn't.

One thing I have learned is that PMR and Prednisolone are not for sissies!

Tilly

Hi Tilly,

Too true (not for sissies that is). Hope you can work out a better way of reducing because it is so lowering to have to go back up. Pace yourself and you'll come through it.

Jill

Hello Tilly

If you do go back up to 15mgs tomorrow, perhaps you can then try alternate days of 12.5 and, if comfortable at that dose, stick there for a couple of weeks and then reduce to 12.5 daily and stick there for perhaps a month. You say your preference would be to reduce to 12.5 for a while so go with your gut feeling and listen to your body.

Also you mention you are to have a hectic day on Tuesday - it is always recommended that we should only reduce during a quiet few days.....this allows the stress-free body time to adjust to the new dose.

A drop from 15 to 10mgs is very steep and it's a shame that you are starting to suffer again after doing so well - and I well remember how poorly you were pre-steroids.

Unlike some of us, you don't have raised inflammatory markers to guide you so you really must be guided by the pain symptoms. Plus, if you leave it too long before making an increase to where you are comfortable, you will find that you will have to go up even higher.

Best of luck, Tilly, and do keep in touch.

MrsO

Hello Mrs O,

I ordered - on-line - 2.5 mg tabs from the local Health Centre but when I collected the prescription they were 5mg tabs. Don't think they can read or do numbers!!!

Don't get me started about the incompetence surrounding repeat prescriptions. My saga is bad enough but added to friends' sagas - the stories beggar belief!

They seem to think that we all sit at home thinking about prescriptions!!! Some of us leave before the pharmacy opens and get back after it closes but we can only order two days before we run out or the computer says NO! I had to 'borrow' from a friend as I ran out.

Yesterday, the consultant said I could die if I suddenly stopped taking steroids and cautioned me about carrying a card - no other health professional had mentioned this to me. The system is extremely dodgy!

I will have to go back to my very nice GP and sort it out again.

One thing is certain, 10mg is not enough.

All the best,

Tilly

Hi Jayeeh and Tills,

The recommendation for swapping over to ADT is to reduce the second day's dose by as small an amount as possible and add that to the first day's dose so the total over 2 days is the same: so at 10mg/day you would ideally take 11mg on day 1 and 9 on day 2. If that feels OK, the next step would be 12/8 followed by 13/7, 14/6 and so on until you reach 20/0. I did it in 5mg steps but that was because I found the \"how to do it\" during a later internet search but I had no problems! I was lucky!

Tills - you must have got the GP practice from hell, if you don't mind me saying. Try to go back and stand over the GP while he/she/it writes the prescription. Remind them they are PAID to have you on their books and provide primary care for you. The other alternative is to get the pharmacist to call them if the prescription doesn't say what you want and get them to agree it over the phone - that CAN be done, I've had the experience when the GP prescribed something that was no longer available. Or you could go away for a few days, \"forget\" or run out of your steroids and go to another GP as if on holiday and ask for a prescription of 2.5 mg tablets ;-p

As many of us here have said, the drop from 15 to 10 is a 33% reduction, that is massive if your own system can't make up for it. 15 to 12.5 is a fairish amount and might still need 15/12.5/15/12.5 for a while. If you look through this forum you will find a version for reducing suggested by a doctor who has been having success with it where the reduction is basically for 1mg less on one day followed by the rest of the week at the old dose, then the next week you have 2 days spaced equally over the week between the other days at the old dose and so on. The opinion is you need a degree in difficult sums!!! So a 2.5mg reduction as alternate days is still biggish and your body will possibly struggle to catch up.

One way of dealing with it if your GP is treating you as an intelligent and responsible person (mine do and it sounds as if yours does) would be to drop the dose on a general basis to what is liveable with for day-to-day purposes. Then, if you have a big event, up the dose slightly for that day or it and the day before. I have mentioned this in another post as it is in the literature that \"patients should be advised to be aware that a slightly higher dose may be required temporarily in case of infections or OTHER FORMS OF STRESS\". However - someone has said they had done this and their doctor was furious that she had done it and told her to get the dose back down despite the fact that she had not been coping at the lower dose. My drs allow me to titrate my dose according to how I feel - my inflammatory markers are very low so are no use for monitoring how I'm responding, it has to be done by symptoms alone. I know I need to get down to as low a dose as possible but there is no point being on 2mg per day and being immobile and non-functioning is there! Since most of the doctors haven't had PMR themselves and many have very little experience with patients with it they want to get the steroids down the same way they would for an asthma patient - and it doesn't work like that. Even with the offically quoted expected duration of PMR from diagnosis to \"burn-out\" at 2 years - which I think is grossly underestimated - you're looking at that amount of time to get from 15 to 1mg/day dose with a month or more at any dose before even trying to go down again. And any form of stress - e.g. moving house, having the builders in, a bereavement, the family visiting, travel, illness, an accident - would increase the amount of cortisol your body needs to respond to it even if you were perfectly healthy. Whilst you are on steroids your body doesn't respond the normal way and produce it itself so you would need a slightly higher dose temporarily to cover and prevent you having a relapse.

And yes - the drop from 20 to 15 was probably easie

Tilly, I'm in disbelief that the consultant cautioned you about carrying a card and yet didn't supply you with one! I have always got my repeat cards from Boots, so if you can go there tomorrow and ask for a Steroid card, I'm sure they will supply you with one.

Plus for you and those people you mention who leave home before the pharmacy opens and return after they close, do you not have a local 24-hour pharmacy either near to your home or near to your place of work....I have a Boots just 5 minutes drive from home that is open 'til midnight. Boots repeat prescription service is second to none in my experience....I just ring them when I need to top up and they collect my prescription from the GP Practice and then have it ready for me to collect within 2-3 days.

As regards you possibly running out of steroids, I have always ensured that I have a large stock of every size: 5, 2.5 and 1mg.

It really sounds as though you are living in some far flung post from the service you are receiving.......it beggars belief that you are in Surrey. If it wasn't Oh happy days!!!

MrsO

Tilly - bit missed out on my last line which should have said: If it wasn't Easter weekend, I could have even posted some 2.5s to you today for you to receive tomorrow.

Hi Tills Yes I think it is terrible you arent given the correct tablets you ordered My surgery arent allowed to give repeat prescriptions for steroids as apparantly \" one \" of the Doctors wasnt giving the appropriate checks bloods BP Diabetes etc etc so I always have to request them with the Dr I take in a list of what I have and she works out what I need with a lot of leeway and she says just to ring if I have a problem It must be very difficult trying to work and have PMR and fit in all the appointments and checks etc and to try and rest enough personally if 10mg/15mg alt isnt working I would stay at 15 my Dr is always \" You know how you feel\" as my bloods arent very high compared to others either It seems to have taken over my life !!!! I had to ask the Pharmacy for a steroid card and they had to get me one so obviously not many people do carry them Im really in agreement with Eileen that any stress seems to make my PMR flare up but prior to PMR I could cope with anything Yes Tills we did have a lovelty sunny afternoon and we arent far from you in the New Forest but I think the rain is coming back tomorrow Well it is Easter !!

Hi

Under Useful Information is an article \"Steroids and What They Do\".

(written by a patient for patients).

It is on www.pmr-gca-northeast.org.uk

It could be helpful. I would also like some feedback.

Also, Ragnar's method is to be found under Our Stories and on this site, scroll down.

Alternate Therapy which Eileen wrote about is on this site as well.

Its best you know many different ways of dropping as what works for one does not work for another.

I sometimes wish when I am reading Patients Experiences that their Gp could have PMR for about six months and then learn what we have learnt the hard way. But that is a nasty thought and not worthy of us.

My best wishes to all of you in your funny old peculiar PMR world and may it burn out soon.

PS

I ring for a repeat prescription, the chemist collects it and delivers it to my door and into my hands.

If I can't get downstairs, I throw the doorkeys out of the window, s/he comes in and walks up the stairs with the doorkeys and the prescription. I am so glad I live in the North East.

Thank you everyone.

I live in a village but it isn't exactly the back of beyond. I ordered Thyroxine on-line on a Saturday. It wasn't available on the Wednesday. My daughter tried again on Friday. Still not there. She tried again on Monday. The prescription was there but no pharmacist on the premesis so she was unable to get it. I eventually managed to collect it on Saturday. Instead of three months supply, I was given 28 days! Now I start again with my GP!

Lat month when I saw my GP she promised that I would get it in three month supplies.

Rumour has it that practices were limiting supplies of drugs until after the end of March/financila year. No idea if this is true.

I will have yet another go at sorting things out with my GP who - thankfully seems to be fine although I have only ever seen her twice!

In the meantime . . . a friend has given me a supply 2.5mg of Prednisolone which she doesn't want. She is on 5mg and thinks she will be on that for ages.

So . . I can use them to try 12.5 mg before I try 10 again.

I am still very achy, despite taking 15mg this morning.

It is such a relief to know the 'gifts of steroids' -hilarious Eileen, I love it - will go but with PMR and hypothyroidism, I have a double whammy! Such fun.

I may go back to 15mg where I felt well and start again! I will think carefully about the next step and take into account the information here. Thanks to all for the sage advice and support.

What would we do without this forum?

All the best,

Tilly

Why can't I edit to correct my typos?

Tilly

Hi all!

Where do you live MrsG? After scanning through this thread again I can only echo MrsK's \"hurray for the NE\"!!! I used to think that the SE managed to acquire all the good things. There are an awful lot of people who have to take steriods longterm so need a card. My pharmacy asked me if I had been given one and produced it on the spot. Most of the chemists in Durham at least offer not only a \"pick up the prescription from the surgery\" service after you have put in the request so you just have to pick up the drugs when they are ready but some will also deliver them to you at home. Not sure if they're as accommodating as MrsK's though! She has a good service if you like.

No wonder there is all this complaint about GPs and their poor accessibility but it must be based on the SE experience - there are very few in the NE where you can't have a same day appointment with someone for something urgent even if all the usual same day ones have gone by the time you are ill (well, it's never before 8.30 is it?). Outside the southern corner we generally had a good GP service and out-of-hours cover until the government started trying to fix something that, in our case, wasn't broke. Ladies - some of your stories are truly hair-raising. I can only hope things improve for you, but there are ways to submit complaints about that level of non-service you know

best wishes to all,

EileenH

I live in a village in the New Forest and have always been very happy with my Dr and the Surgery I have never ever been refused an appointment on the day We can book them in advance and their are some left for same day appointments All proper checks are made and I know some people have said on the forum that they dpnt get blood pressure checks and daibetes but my Dr goes down her tick list when she sees me My husband sees another Dr and is equally impressed In the local pub everyone is equally happy with their service but I feel we are lucky I havent bothered with seeing a Rheumatologist this time as feel I am getting good treatment now and as we know there are no miracles with PMR it takes it self away when it wants to !! Im feeling better today so hoping I will be able to stay on 10mg Hope you feel better soon Tills