5mg and Going Down!

Bones, joints and muscles
1

Well here I am back at 5mg again (for the second time) and just had the results of my blood test, ESR of 5, (although it doesn’t feel much like it on some days!) so my doctor says I can very cautiously start to reduce again.

Since I have been reducing from below 10mg I have been using the method of 2 days on the current dose and one day on the lower one for about 10 days, then current and low on alternate days for about 10 days, then one current and two lower for 10 days so it takes about a month to reduce fully to the next dose. This seems to work well for me so far, but it was below the 5mg that I ran into trouble last time.

I am keeping up the Nordic Walking and can still manage 3 miles on a good day, but can sometimes struggle with about 1 mile on a bad one but I always try to do some, I think that exercise is very important when on steroids.

I have been keeping a log of my progress (or lack of it!). At the end of each day I record the dose of Pred along with an estimate of the PMR pain on a scale of 1 to 10, with 10 being at the level just before started the steroids, and 1 being pain free. This is quite difficult to estimate as the pain moves around, so I take 4 readings, shoulders (always the worst), neck, arms and legs, and then take an average of all 4 readings. The data is all plotted on a graph using and XL spreadsheet. I did try to attach a copy to this posting in jpeg format but is was so small it was meaningless, but if any other members are interested they can send me a message and I will e-mail it to them. Also if anyone has kept any similar data themselves I would be most interested to compare notes.

Many thanks to all of you on this site, it is mine of information.

Mr. A

2

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

3

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

4

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

5

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

6

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

7

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

8

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

9

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

10

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

11

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

12

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

13

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

14

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

15

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

16

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

17

Hello Mr A sorry to hear you are in such pain You dont mention your CRP ??? When I first had PMR in 2002 it was always just my CRP that was raised and my Doctor went on my CRP levels as quite often my ESR would be 2-3 This bout of PMR my ESR and CRP have both been raised Since I strarted this new bout in 2008 I have read more about PMR as it has not been such a smooth ride this time and I note that a lot more Doctors are now taking notice of CRP and I think from memory Canada has done some studies on it I record all my bloods and try and see at what level I feel OK but I need ( and my Doctor is happy with ) when I am below 5 on both though I know a lot of -people seem OK on a lot higher levels I hope you get something sorted with your Dr and dont have to increase your steroids as I unfotunately have had to

18

Hello Mrs. G

My Doctor has never asked for a CRP test. Perhaps I will mention it to her next time. My original ESR was 34 before I started on the Pred but has been between 2 and 7 since.

19

Hello Mr A

Sorry you are in such pain. I have had PMR for about two years and have only ever had raised ESR. For quite some time my levels have not been raised although I was still in pain my doctor said levels are not necessarily raised and it does not mean PMR has gone. I have been fairly pain free for last two months and I am now on 4 mg reducing in the last month from 5mg so keeping my fingers crossed. I think the answer is as Ragner said below 5mg go very very slowly. I will stay on 4mg for another month before I think of reducing further.

Hope the pain goes it will be interesting to see what your consultant has to say.

Linda

20

Hello again Mr A and sorry to hear that your pain isn't improving in spite of good blood test results.

As you will have read from the postings by Mrs G and Linda, we all react differently and it gets very confusing. However, it does seem in your case as though your flare-up has possibly arisen because of your very rapid reduction from 5 to 3.5, and perhaps when you see the Dr next week he/she will recommend that you go back up to 5 for a couple of weeks to let your adrenal glands catch up and if the pain subsides then reduce to 4.5 and 4 etc as outlined in our earlier posts. From my experience if you ignore the pain for too long then it will mean going up to an even higher dose. Do hope the pain eases for you in the meantime.

MrsO