Pred reduced to quickly
Posted , 3 users are following.
I seem to be one of few men with PMR at age 65
I was diagnosed about 3 months ago and put on 30mg of pred with the instructions to reduce it by 5mg every week until the pains reappeared, then to reduce more slowly as I saw fit, then return for blood test after about 3 months.
Well, it all went fine at first, the pains almost completely disappeared within 2 or 3 days and started to reappear slightly more when I got down to 10mg. I slowly went down to 3.5mg over a period of about 6 weeks the pain started getting quite bad, so I had a blood test - ESR 37 and CRP 10 and saw my doctor. She told me to go up to 7.5mg and see how I got on. The pains continued to get worse so I tried 10mg and they still got worse. By this time was feeling pretty despondent. I saw my doctor again (this was yesterday) and she said I needed to go up 30mg again! So I have taken my first dose this morning. Too soon to feel any effects yet.
I find that the pred make me feel very tired and I do not sleep well at night but I seem to be lucky in that I have no other side effects. Also these disappear below 10mg.
I will keep you informed of my progress (or lack of it!)
0 likes, 5 replies
Guest
Posted
Firstly I am sorry to hear of your suffering since being diagnosed 3 months ago. However, I am most surprised that you were then left to reduce weekly from 30mgs \"until the pains reappeared\" without any blood tests being done in the interim to check that your ESR and CRP markers remained stable. Had you been referred to a rheumatologist at the outset, you would probably have had blood tests with each reduction whilst on the higher dose and preferably monthly thereafter. In my case when on the initial high dose (40mgs), the rheumatologist used to arrange a blood test on the day before each appointment so that he could tailor the dose accordingly.
To have come down from 30mgs to 3.5 over 3 months is extremely fast - you will see on this site that the recommendation once below 5mgs is to reduce only 1mg each month. Your adrenal glands will have been suppressed on the high dose and would not have been able to kick back in so fast.
There is a special website for men with PMR to exchange their experiences with each other - I'm not sure what it is but no doubt Mrs K will be advising you on that score.
Meanwhile I do hope you will feel pain relief from the increased dose very quickly and do keep in touch with this site to let us know how you are getting on. Good luck.
MrsO
Guest
Posted
Sorry I got my facts wrong (it's getting late!) In my second paragraph I should have said to stay on each 1mg reducing dose for 3 months.
Mrs O
Guest
Posted
Very sorry to hear about your PMR -seemingly rarer in a man. I am also surprised at the rapid reduction in your steroid treatment. I was started off on 20mg a day (15 months ago) and told to reduce by 1 mg each month though initially I reduced more quickly until I got to 10 mg. Once you get to the lower doses the reduction needs to be slower as it is proportionally a larger reduction than on the higher doses. I stayed on 5 for about 2 months and 4.5 for about the same length of time. At the moment I am chopping a 1 mg tablet into halves and quarters (!!) and this plus a 2.5 tablet managing to reduce to 4.25. My rheumatologist at Addenbrookes gave me a broad outline of reduction but told me to listen to my body for the fine tuning of medication. Also blood tests are a good indication of what is going on.
Do hope you get things sorted soon at a comfortable level from both pain and side effects and good luck.
Margaret
queenbee
Posted
I too have been up and down the scale of dosage and am currently taking 13.5mg having started at 30mg 14 months ago got down to 8mg then had a GCA scare and was put back up to 40mg in December and have been working my way down first in 5mg then 2.5mg drops. Tried a couple of weeks ago to take another drop o 2.5mg to 11mg but after two weeks gave up the struggle and have now returned to 13.5mg and will stay here for a couple of weeks until I have the pain under control and then I think I will start taking 1mg drops every 3-4 weeks to see how it goes. I have really found that dropping quickly doesn't work although the GP seemed to think the faster one dropped the better. The rheumatologist has told me to take it slowly and I now realise he is right. Like you for the first three to six months I had very few side effects (apart from not sleeping) but now the moon face and peach fuzz (I don't suppose that is noticeable on a man!) has kicked in together with the weight gain which I am now struggling to correct. Much lower calorie input required.
I do hope that you soon get to grips with your reduction regime and that all goes well for you.
Betty
Guest
Posted
I have been back on 30mg of Pred for a week now and feeling much better for it (apart from the side effects). It took a few days this time for them to take effect and it was not the dramatic change that I had the first time round. I will make sure I reduce more slowly this time, especially when I get down below 10 mg. With regards to the blood tests my doctor said that they can quite often be misleading and she relies much more on how the patient feels as long as there is nothing else wrong. However, I will make sure I book a blood test at regular intervals to check my CRP and ESR levels.
I have just completed a 3 mile walk which I have been unable to do for some time so I am feeling quite good about that if a little tired! (I will be writing a separate post on Nordic Walking with PMR later)
Thanks again
Mr A