5mg and Going Down!

Hi All,

I was just about to post on here about my visit today to see my GP about reducing more slowly when I get down to 5mg pred. ( next month/year, with a bit of luck) when up popped Mr A's experience of the said reducing.

My GP says to continue my reduction, by 1mg every 4 weeks, as this is seen as a very gradual reduction.

He was aware that there could be setbacks, and I am very loathe to have to make an increase, as the steroids inflame the fibromyalgia that I also have.

Until I get on a low dose of the pred., it will be difficult to tell how the fibro' is affecting me.

To me it is allover PAIN.

The good news was that my blood pressure was normal, so something was OK with me !

Going back for blood tests in January.

I have been going to hydrotherapy twice a week, when well enough, but we have two weeks off for Christmas and the New Year. The physio' thinks that this will be a good test as to whether the hydro' is helping at all.

It helps when I am in the water, but the effects seem to wear off rather quickly.

You are very organized Mr.A, my husband often asks me to give a score out of 10, to let him know what sort of day I'm having. I think he's getting fed up with the answers as it's usually nearer 10 than 1 !!

Hope everyone is keeping as well as can be expected, despite the colder weather, and worse to come !

Best wishes, DD

Hi both of you!

It took me a yer to come below 5mg. I succeeded when I tapered 1/4 of a 2,5 mg tablet at a time with the regime that you described Mr A. A small reduction and at least a month for the new dose is my advice. Then you may hope not to have to get back up again.

Good luck

Ragnar

Hello Mr A - it's good to hear from you again and very brave of you after some of us resorted to childhood histeria over your Nordic poles experience - but it was so good for us all to have a laugh amongst all this angst of PMR and GCA.

Good luck with that reduction below 5 - for me it was third time lucky, but am now trying to get from 3 to 2, not doing too badly apart from a recurring neck and swallowing discomfort which seems to appear every couple of days. I'm doing much the same reduction process as you, following Ragnar's regime. However, I'm not as organised as you sound (probably wouldn't be clever enough anyway), but I do keep a calendar of dates and dosages.

I would be interested to hear whether you have found that the hydrotherapy has, in fact, helped after your couple of weeks without it. I know what you mean about the effects wearing off quickly because I find that is even the case when I shower....instant relief but short-lived.

Good luck with the next reduction.

MrsO

Mr A

Good Luck on the reduction plan.

If you want to read Ragnar's story visit www.pmr-gca-northeast.org.uk and look under My Stories.

Also read Steroids and What they Do.

Both are well worth a read and also have a look at the Support Groups.

mrs K

After reducing from 5mg to 3.5mg over a period of 4 weeks, I expected the pain to get a bit worse during this time which it did. I have now been on 3.5mg for a weeks and the pain is still gradually increasing which is not what I expected. Last week I had a blood test, am awaiting the results and I was on the verge of going back up to 5mg again when out of the blue I had a really good day (that was yesterday) and today is a little worse but nowhere near bad as it has been for the last 4 weeks. So the motto is for all those who are thinking of going up, hang on in there as long as you can! I await my test results with interest as the pain was bad at the time they were taken.

Mr. A

This should read:- I have now been on 3.5mg for 4 weeks (not \"a\" weeks)!

Sorry about that, must look at the preview more carefully!

Mr. A

Perhaps you are trying to reduce too much too fast. At 5mg and below I drop by only 1/2 mg at a time and take about five weeks to do so. I then wait for several weeks before my next drop. Ragnar has offered excellent advice about reducing dosages and he has been completely successful. Perhaps slow and steady really does win the race. Best of luck to you Mr A but it sounds like you might need to go up a bit. Discouraging but sometimes necessary.

Jill

Hello Mr A

Yes, as Ms JH has said, it would appear that you may have reduced by too big a drop. When reducing below 5mgs, it has to be done very slowly and each reduction of 1mg maintained for about 3 months. I have been following Ragnar's successful reduction programme but taking even longer with each reduction than he did. I did 3 days on 5, one on 4.5 and repeated. Then 2 days on 5, one on 4.5 and repeated. Then alternate days of 5 and 4.5, followed by 2 days on 4.5, one on 5 and repeat, continuing in this fashion until I reached 4mgs. A long drawn out programme but it has worked for me this time whereas on two previous occasions I have relapsed with severe pain and increased blood test markers. I have just reached 2mgs by the same method and am hoping that today's blood tests will be successful.

Are you the same Mr A who posted last summer about the Nordic Walking Poles (the posting that reduced a few of us to childlike hysterics!)? If so, that is such a coincidence you posting again today because I have just read an article in Sunday's paper about such walking and it does really sing its praises. Apparently some GPs have started clubs from their surgeries, referring patients, 20 NHS PCTs have also set up programmes. Having read that it uses 90% of the body's muscles, I think I may look up a local group and join because although I've walked continuously in the hopes of protecting my leg muscles from the steroids, I feel my arms are suffering. Have you been managing to maintain your Nordic walking?

Do hope your blood test results are normal and that you continue to have some better days.

MrsO

Hello Mrs O.

Yes the Nordic Walking has been most successful and I can usually manage 3 miles on a good day including hills, or about 2 miles on the flat on a bad days sometimes in 2 sessions. I also try to do 10 knees-bends every morning and 10 streatches with each arm in turn to the top of our kitchen cupboards, this can be quite painful for the first few, but gets better by the 10th.

Mr.A

Mr A, you're doing very well indeed if you can manage to walk 3 miles a day including uphill. I can manage 2 miles (about 40 minutes) but only on the flat and sometimes have to sit for a couple of minutes half way. So I don't know if I'm up to Nordic walking yet but I have made some enquiries and there is a group that meets in Sunbury, Walton and Bushey Park, all quite local to me. They supply the poles and membership is £50 a year, so I think I'll make that my goal once I have managed to increase my walking distance.

MrsO

Mrs. O

I think you will find that if you can manage 2 miles of normal walking you will soon be able to do 3 miles of Nordic walking once you get used to it. You will also find you can go bit quicker especially up the hills. My 3 mile (2.8 miles actually) walk takes me about 50 mins on a really good day.

Mr. A

Dear Mrs O, I will try not to reduce us to hysteria again! You may remember it was my husband who was trying out Nordic walking. IN Guildford Age Concern was putting on free courses, lending poles and showing people how to do it. Also warming up which seems important so it may be worthwhile asking around. It doesn't come that naturally to everybody - some people feel that they are putting the wrong foot forward so to speak. I notice in the mag. my husband gets from the Heart Foundation they are advocating it too, as exercising the upper body and arms. I have avoided it because my arms and shoulders ache more than my legs but I may not be right in my reasoning here.

Other suggestion, from the Guardian, who had a lot about walking for health a few weeks back, is that your arms should be bent at right angles (mine tend to dangle down) and that as you walk you should move them BACK rather than forward so that your chest opens up and expands. THis is for ordianary walking of course, not Nordic.

Hope all is going well with your reducing! And that you are surviving that white stuff we saw yesterday! Green granny

Mr A - thank you and I understand what you are saying about practising and getting used to it and actually going quicker up the hills - the article did mention that although you worked harder it actually felt easier because of the poles. So something to look forward to!

MrsO

Dear Granny - yes I do so remember you mentioning your husband and his Nordic walking poles! Thank you for that further information.......with your branch of Age Concern getting involved, it does sound as though it's a rising in popularity. It may be just the thing we need for our upper muscles in particular following the barrage of steroids. Oh, yes, \"the white stuff\" AGAIN yesterday. They are forecasting it again for today but I'm hoping they've got it wrong as I'm driving to a friend in Epsom for lunch, which reminds me, must go!!!

MrsO

I have just had my blood test results, ESR of 5, I can't believe it!. Why is it so painfull? I was all prepaired for a bad result and an increase in the Pred. I will be seeing the doctor next week and see what she says. In the meantime I will try to keep down to my 3.5mg

Mr. A