PMR reduction of steroids ...frustrated & confused!
Posted , 12 users are following.
****Hi please may i ask for Eileens advise yet again or any other views welcome!
I have been on the exceptionally slow reduction plan again & was thrilled that after almost ten years i had reduced to 4.5mg & really was so thrilled that PMR might have left me a.one at long last but after about three weeks the extreme pain reared its ugly head again.
I have increased it up to 6 mg but with little effect so should i increase more with yet another slow reduction or stick with 6 to see if it settles down?
I feel so disheartened as i really thought i'd cracked it!!
Maybe i must just not reduce below say 5MG?
i really would appreciate your help as im clearly not administering the steroids very efficiently!
Many thanks, Jane
0 likes, 10 replies
nick67069 jane03457
Posted
It seems like you have reduced beyond what you need to manage PMR pain. I would add 5mg to your dose ( meaning go to 9-10mg to clear accumulated inflammation. Usually one week is sufficient and then drop back to just above the "good" dose ( in your case 5 or 6mg). If you increase the dose for short time (week to 10 days) you don't need to taper down and can reduce it quickly.
jane03457 nick67069
Posted
Thank you so much Nick that is really helpful & also echos Eileens' suggestion. So tonight I will take 9mg for one week & then reduce straight down to 5-6mg & see what happens! Is this right?
The pain is awful at night but improves during the day but after all these years I should be used to it!
Many thanks again Nick, Jane
EileenH jane03457
Posted
What sort of pain and what time?
clicklaura jane03457
Posted
I have over the past 8 months made it down to 4 mg in a kindly tolerable fashion. Last week I made my monthly drop to 3 mg and it has been a bit rough. I am in Texas where the weather is irratic for sure, easily 70 degrees in the same week as 30 degrees. Cannot conclude whether s/s are weather or mg. I am wondering if going back up to 4 mg for several days and then dropping again to 3 would be harmful. Actually had to use a cane on my third day at 3 mg, but swapped out the cane for two 500 Tylenol, attempting to take the Tylenol just once a day and run all errands in that window. Question: is it ok to bounce a bit between 3 and 4 mg of Pred within a week span? Also, it appears everyone on here is dictating, pretty much, their own schedules - not the doc. Is that true?
EileenH clicklaura
Posted
You aren't heading relentlessly for zero - you are looking for the lowest dose that works well. It sounds as if you are there at 4mg - for now at least. It doesn't mean you won't get lower, just not yet.
And it is much better to cut your tablets so you take the same dose every day - or use a much slowed approach to the taper:
https://patient.info/forums/discuss/reducing-pred-dead-slow-and-nearly-stop-method-531439
clicklaura EileenH
Posted
Thanks for the time/effort to respond. Yes, I was in relentless pursuit for zero, I see the error in my thinking. My schedule has been to drop 1 mg every month, a full four weeks apart from each drop. I have gone back to 4 mg now and then, with doctor ok, to 5 for just a couple of days to enable fulfilling a physical work obligation.Then I will begin the descent back to 4 and will try 3 again when the weather is less volatile to interfere and confuse which is causing what. This weight gain is overwhelming to me. I have slowed it by doing the 16/8 intermittent fasting. Just looking so forward to being able to lose some weight!! Thanks again for your insight!
EileenH clicklaura
Posted
I have no idea what I weigh at present after the winter, loads of stress and an achilles problem that is stopping me walking - but I lost 35lbs while still on 10-15mg pred by cutting carbs drastically - I also do the 16/8 eating pattern but I really do have to watch the carbs, that is really critical.
EileenH jane03457
Edited
Try adding 5mg to where you flared for a week and see how you get on. Up to 10 days or so you can drop back quickly - but don't then go to where you flared, you want at least the dose above that,
You aren't reducing relentlessly to zero - you are looking for the lowest dose that works as well as the starting dose did. Sounds like 5mg. But at this level there is a complicating factor: adrenal function. That must return and after 10 years on pred that will take much longer than if you had been on pred for only a few years and that can take long enough!
I think you have done brilliantly - 5mg is a low dose, one you could remain on for life without problems. But maybe you just need to be even slower about it! One very good PMR doctor in the UK likes to keep his patients at 5mg for up to 9 months - it doesn't mean you won't get lower, maybe just not yet. And now you need 1/2mg steps and possibly over double or treble the time of the plan. But take 5mg for now and be proud of yourself.
clicklaura EileenH
Posted
I went back to 4, I'm not totally comfortable stiffness/discomfort wise at 4, but am less famished every waking moment = a good thing. I'll hang here for a while then see about going down to 3 by 1/2mg. rather than the failed 1mg (or 25%). Have a doctor appt on the 11th, will ask him for 1/2 mg or should I cut one? Learning as I go. Not a big difference between 5 and 4, very unsatisfactory difference at 3. Thanks! Also I work in healthcare/nursing homes so need a good immune system, best possible.
EileenH clicklaura
Posted
Pred doesn't come in 1/2mg tablets - there are 2.5mg plain ones in the UK and you can top them up with 1mg tablets so down to 2mg is easy enough.
Cut your carbs drastically, especially processed ones and added sugar - once you can keep your blood sugar levels more stable that also improves the hunger pangs, pred changes the way your body processes carbs and also triggers your liver to release random spikes of glucose into the blood. That triggers insulin release, your BS level plummets and you crave carbs to bring it back up. Protein and fat don't have the same effect but fill you up without the consequent plunge in BS.