low dose doldrums

Hello Andrew

In a word I would say yes go to the Dr sooner He may well do blood tests to see what is happening If you have other things wrong with you ie cold and not sleeping it may well be that which is dragging you down or perhaps you have reduced too fast at that level

I am trying to get to 3.5 at the moment doing 2 days of 4 then 1 of 3.5 to see what happens for a few weeks then a couple of weeks at 4 one day then 3.5 next then 2 weeks at 3.5 for 2 days then one day of 4 then a couple of weeks at 3.5 until I start the next descent !! I was going to do 1 day fo 3 then 2 days of 4 but it is a busy time of year and plus we have been struggling with the snow here and I am very keen not to rock the boat

Last weekend i did an awful lot ( we are decorating at home at present ) and had one of those real PMR whacked feelings so I sat and relaxed for a few hours and felt a lot better

I just feel if you dont feel your normal self it is better to act sooner rather than later and see your DR as after a complete blip last Xmas I went from 4mg to 15mg again and if i had acted a bit sooner knowing I wasnt feeling right I might not have had to go that high again

Best wishes

Mrs G

Hi Andrew!

It might be coincidence - but if you have any sort of infection then your need for pred will be higher so your body can react to the stress of the infection. If you've had a cold at the same time you put your dose down that could well be the reason for feeling so low.

I can't remember now if it was on this forum or the US one but someone reported a real \"fall off a cliff\" response to dropping her dose at about this level. It's a level that is still a dream for me but I do know that there is a proportion of PMR patients who take a very long time to get their dose reduced at this point - and by that I mean years, not months, and some never do get off.

At this sort of level there really are almost no concerns about taking pred as it is well below the \"physiological\" level, the amount the body makes itself anyway. If - and this is a possibility considered by some experts - the cause of PMR in some people is a malfunction of the HPA system (hypothalamus/pituitary/adrenal) of some sort that so that the adrenals do not secrete enough cortisone, then you need to regard your steroid dose as a replacement therapy, like insulin for diabetics.

In your place, yes I'd go back to the doctor, but first I would try going back up to the dose at which you last felt well. If you feel better it does suggest you are simply trying too hard to get off the steroids. Many people find it difficult at about 10mg and again at about 3mg - no-one knows why. But we've said here before that there is no point dropping the dose just for the sake of it, the whole point of taking steroids in the first place is to manage the disease - if you feel ill, it's not being managed. There might be something else going on, in which case you need to see the doc, but you can test a bit without that by upping the dose and seeing what happens.

I know it's disappointing to have got to this stage and be thinking the end of tablets is in sight and then maybe find it isn't - but if the PMR flares up good and proper and you have to go back to much higher dose to deal with it, it will be long time before you get to this stage again.

Good luck,

EileenH

Hi Andrew

If you have only been feeling so low since the arrival of the cough and cold then perhaps that is the the real culprit here - pmr doesn't like any stress to the body whether overly physical or emotional and having a cough and cold would drag you down and make you tired more than someone without PMR.

A trip to the Dr sooner rather than later would be wise to rule out any possible chest infection which may require antibiotics to make you better. A couple of years ago when I had a triple infection (chest, throat and eye), my GP put me on an immediate dose of antibiotics without hesitation mainly because of the steroids and how they can lower your immunity.

You may not have to increase the steroids at all but if you do it may only be by a small amount and you will probably be able to get back to the present dose quite quickly once you are over the cold. You've done very well to get to your current dose in less than 2 years so good luck with this little blip now.

Eileen has mentioned about the difficulties of reducing from 3 and, strange as it is, I had to increase back up from 3.....twice!!!

One little tip which may really help you right now: buy some Manuka honey 10+ and have some every day - it will help to build up your immunity. Also, if you do have to go on antibiotics, then follow the course with a daily live yoghurt to help the stomach lining.

Very best wishes, Andrew, and do let us know how you get on.

MrsO

Hi Andrew,

I was not going to write this until I was further down the track

I had a great deal of difficulty reducing from 5mg per day to 4 (20%) and then from 4 to 3 (25%) My dose was up and down like a yo yo as each cut produced a return of the symptoms.

Thanks to this site with its warnings not to reduce by more than 10% and most especially to Ragnar I decided to split my dose into 12 day periods starting with 36 (3 a day), then 33 (down 8%) 3332 3332 3332, then 30 3232 3232 3232

(down 9%) then to 27, 25 and so on.

I have got down to 23 over the 12 day period with no problem at all.

(If all goes well I'll be down to 9 over a 16 day period at the end of July!!!)

I, too, had this great tiredness. It used to come down like a veil after breakfast and coffee. I gave up coffee (thanks Jill), tried to eat less and tried to keep occupied and stimulated and not overdo it(very difficult). It seemed to have some beneficial result.

Good luck

farmeroz2

Incidentally Eileen I was also taking calcium and gave it up after your warning, perhaps that had an effect. Very difficult this self monitoring with all the twists and turns. I am now taking magnesium and zinc, any warnings?

Farmeroz - no need to give up the calcium altogether - just make sure you have at least 3 hours between the steroid dose and taking the calcium. I suggested once that you should have steroid for breakfast and calcium for lunch and supper - which is what I do - and someone thought the idea was very amusing!! I take magnesium and haven't come across any problems, don't know about zinc. But you can't really go wrong if you make sure there is a good gap between taking them and any medications - unless there is a serious interaction. However, the best person to ask about it is the dispensing pharmacist when you get your prescription filled. It's part of their training and they are always better at picking it up than a doctor (whose pharmaceutical knowledge is generally poor). Always either ask about anything you decide to try taking or do some really good research beforehand. But the pharmacist is the best person to go to - especially if you are not used to reading scientific data. The data sheets that come with medications are aimed at the patient with no background knowledge and they can be confusing, the info available on-line can be even more so as it is aimed at healthcare professionals.

Good luck with the reduction plan (I'm not quite clear about what dose you mean in the reduction though - how many mgs a day?),

EileenH

I'll try and explain my reduction plan again, Eileen. Clarity is not my strong point.

I had trouble getting down from 5mg pred per day to 4. (a 20% reduction)

Also, had trouble getting down from 4 to 3 (a 25% reduction)

Having stabilized on 3 per day I decided to use a variation of the Ragnar method for my next reduction.

I am now reducing on a 12 day programme. 3 a day means I was taking 36mg over the 12 days. I then reduced to 33mg (an 8% reduction from 36 over the 12 days) My dosage for those 12 days was 3332 3332 3332 (33 in total)

From 33 over 12 days I went to 30 ( a 9% reduction from 33) my dosage per day was 3232 3232 3232 (30in total)

Similarly I went from 30 to 27 to 25 to 23 always keeping the reduction in total to less than 10%

I have now reached 23 (dosage per day is 2222 2212 2222)

It has worked for me as I have had no problem getting to this level of 2mg per day. I am using this variation of Ragnar to avoid breaking pills.

Hope this clarifies it.

farmeroz

Hello Farmeroz, That sounds really helpful to me - looking at the 10% reduction over a longer period. I had always thought in terms of one day and wondered how I was going to sort it out.

Cheers, Green granny

Thanks Farmeroz - I didn't get where the 36 came from! Should have thought a bit harder!

EileenH