I started reducing prednisolone from 10 mg to 9 mg 4 days ago and am finding that my whole body is tingling. Am aching a bit and have started to get fatigued again. Has anyone else had this tingling sensation? Is it a withdrawal symptom from the pred? I would be grateful for any advice.
How have you reduced? From every day 10mg to every day 9mg overnight so st speak? If so it could well be withdrawal symptoms - we have always felt tthat steroid withdrawal starts immediately and improves over the next week or two. Some people are very sensitive to reduction in dose, others less so.
In the 4th and 5th posts on this thread on the forum:
https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316
you will find my version of a very slow reduction programme that I and quite a few others have used to avoid this withdrawal discomfort. A similar concept is being used by a consultant in the NE and he also finds it works well.
You don't say how long you have been on pred (sorry if you have said in earlier posts but I can't remember all the posts I see). The longer it is the more sensitive many people become - but here it does sound more like that than that the new dose is not enough for the PMR symptoms to be managed.
Let it settle, it takes time for the body to get used to the reduced dose. and you are very close to what the body would normally produce. I get some 'funny' effects shortly after reducing, and if it becomes too much just go up half a mg for one day then down to 9 and follow this pattern for a week or so. Best of luck!
Hi Jan21306, I hate this part of reduction that tingling feeling, sort of like having a temperature for flue but not having it. I have to say that whatever I have done to stop it has failed but Eileen and others are right . . . slow the taper. Her recommended method does work and will stop it. The quickest cure for me is a (big) spoonful of brandy but that may not suite all! Then back to the slow, slow, taper.
Haha - are you related to MrsK? Brandy Queen of PMR and GCA! Her answer to many things is a small glass of brandy - which she claims she hates ;-)
Probably withdrawal symptoms from lowering your dose of pred. I have been on pred for 1 year now and reduced to 11 about 1 month ago which I take just before going to bed due to daytime dizziness which took care of that. I have the tingling about 3 hours before my dose is due which is annoying. There is constant muscle fatique now but no pain to speak of. I do hit a wall where I am so tired that I could curl up and die after doing too much and a nap takes care of that usually. Guess we are all different and I will stay on the 11 for another month. The Brandy idea from Daavid Melville sounds great though doesn't it? Guess this really isn't any advice but just sharing my own experiences. Best of luck to you.
Au contraire . . . From a child a teaspoon of brandy cured all ills from upset tummy to 'whatever you like'. Still do use it as an excuse!
Mind you I got my cum upance with Naproxen, a most unacomadating little invention! . . . .😀
Ah - MrsK's answer to Delhi belly is a mixture of brandy and port (if I remember rightly). Now I wonder how a properly flambeed meat dish (for example) teamed with my neighbour's onions poached in portwine would do...
Styrup Cup! Every huntsman has a hip flask full to be emptied by end I'd day . . . It's a kind of glue to keep you in the saddle but if it fails it still works as it numbs the pain . . . .
i think I like alternative medicine!
i do have a serious answer but that would be boring!
no seriously . . . . . . . .
Just to let you know, I survived on brandy as a painkiller for over 5 years whilst I had GCA.
I remembered that when we were ill as a child being given a teaspoonful of brandy when ill.
I also was told by my Grandad that an old barmaids cure for d & s was to mix a small measure of brandy and a small measure of port, hold your nose and throw it down (it tastes horrible), repeat in two hours. It works.
Brandy was invented by Medieval Monks as a Medicine. (No it was not Cadfael)
Hi Jan....how long had you been on the 10mg? I can only reduce every two months otherwise I feel funny!
I tried to send a PM but cannot find it, so here goes PMRpro sent you the other link to another plan.
Reduction Plan A - recommended current thinking is no more than 10% at a time.
Once down to 10mg, many people have difficulty in reducing, there can be reasons for this:
withdrawal symptoms
you are not ready to take a drop
3) the drop you are trying to take is more than 10%
The following is a way that can help you achieve the next steps.
Day 1 10mg
Day 2 9mg
Day 3 10mg
Day 4 9mg
Day 5 9mg
Day 6 10mg
Day 7 9mg
Day 8 9mg
Day 9 9mg
Day 10 10mg
Day 11 9mg
Day 12 9mg
Day 13 9mg
Day 14 9mg
Day 15 10mg
Day 16 9mg
Day 17 9mg
Day 18 9mg
Day 19 9mg
Day 20 9mg
Day 21 10mg
Day 22 9mg
Day 23 9mg
Day 24 9mg
Day 25 9mg
Day 26 9mg
Day 27 9mg
Day 28 10mg
Day 29 onwards 9mg
If at anytime the pain increases, wait two or three days, if it is still there then the drop is to soon, go back to 10mg, wait a couple of weeks and try again. If after waiting the two or three days it subsides then it was probably withdrawal symptoms.
Once stable on 9mg wait two or three weeks and then try to take the drop down to 8mg following the same pattern.
Once you have got to 5mg, then the drop is 0.5mg at a time. So you need a pill cutter to split the 1mg tablet in two. Using the same pattern but this time wait at least 1 month before attempting the next drop.
Below 7.5mg is where the adrenal glands start to wake up and work but they can take up to a year to become fully functional. This is why even when off pred you have to carry the Blue Steroid Card with you which contains the date of the last dose.
Brandy is my last resort when the pain gets really bad and it is a winner, I was given some armagnac recently and that is pretty impressive too. I also seem to sleep better. Perhaps Big Pharma has got it wrong, we should listen to the old monks.
Big Pharma also takes a lot of leaves out of medieval herbalist books! Look at aspirin...
Thanks Eileen. I have only been on pred for about 12 weeks, but because of the side effects i am getting my doctor wants me to try and get to a dosage where i can stay for a while. I think i am now getting side effects and withdrawal symptoms at the same time. My whole body shakes and tingles all day and my muscles twitch and i am exhausted but dont sleep due to palpitations at night. I dont get them during the day. The good news is that i am not in pain ! I suppose every cloud has a silver lining !! I wish i dared try the brandy or armagnac !!
Thanks Oregonjohn. I think the worst thing is knowing that there is no alternative to reducing the pred, as we cant just stop using it as we can with most other drugs. Will try the going up by half for a day. Thanks !
Its always good to know that someone else has been or isgoing through something similar. I have had to give up alcohol for the moment, otherwise I would have tried the brandy like a shot !!
Hi Marykay. Thanks for sharing your experiences. It all helps to know you are not alone. I agree about the muscle fatigue as well and hitting the brick wall! Good luck to you !
Hi Tricia. I was on 10 mg for about 8 weeks. The thought of being on pred for at least another year is horrible. Good luck!
Thanks Lodger! It must have taken you ages to type all that, i appreciate it! Will look at both the options and try one of them. Many thanks to you!