newly diagnosed pmr

Hi thanks for your comments

Hi lois67, just to wish you the best of luck with your new approach and hopefully it will work for you. We all know how desperate we are to decrease our intake of drugs, but please do not allow yourself to suffer even if it means upping the dose slightly for a few weeks longer. My fingers are crossed for you. Good luck.

The golden rule is never more than 10% drop at a time and to make is easiery try this:

Day 1 old dose

Day 2 new dose

Day 3 old dose

Day 4 & 5 new dose

Day 6 old dose

Day 7&8&9 new dose

Day 10 old dose

so the next 4 days would be old dose, then one day at new dose

Do this pattern till you are on the new dose for 7 days. It should take about 29 days to get from the old dose to the new dose.

Then start all over again.

If however you feel at anytime what you think is a flare.  Stop, go back to where you were its too soon to take the drop,  Wait a week or two then start again.

Think of PMR like a forest fire, enough water and you dampen it down and its controlled, not enough water and it flares up again and you have to pour more water on to dampen it down again, so a trickle seems to work.

Let us know how you get on.

hi mrs k ,thankyou for the plan ,i have increased to 15mg for 1 week then i am going to reduce using the plan you suggested. its weird as all my blood tests came back ok but the symptoms are there and was defo better after 4 days of starting the steroids.fingers crossed .

michele

The ESR and CRTP are just guidelines to say 'something is going on".  They can go up or down if you have an infection, cold, etc. Some people are never raised at all.

How you feel is the most important, you know your onw body best.

 

About 20% of patients have no raised blood tests ever - and that often leads to the diagnosis being missed for some time if you have a GP who is fixated on figures and lab results.

Hi mrs k.  I've been posting on the northeast support group more often than not.  However, I recently decided to give the taper pattern you recommended above a go.  Mainly because I am at such a high dose of prednisone.  If you recall, I went back to my original dose of 40 mg on May 28 and stayed there for a month.  I did not have the miracle response felt initially and suffered left arm pain, fatigue, cement legs and steroid brain of varying degrees on varying days.  Most of these symptoms or side effects were at their worst 2 hours after taking the prednisone for about 8 hours.  This has lead me to believe that some of the issues I'm having are indeed side effects, 

After the month at 40 mg followed by 36 mg (10%) for 14 days with identical issues, I judged my condition as stable.  Had full blood work up done on June 24th, had an eye exam a week ago, monitor my glucose levels regularly personal testing equipment.  ESR and CRP have been normal for months.  I initially considered doing Eileens 'dead slow almost stop pattern".  Then, I came upon your pattern and decided to give it a try.  I've only just begun the pattern.  Today was the 3rd day with the new dose of 32 mg (10% again) and tomorrow will be old dose.  I felt relief of arm pain and steroid brain almost immediately on the new dose.  Energy level has improved greatly, no fatigue, and have a much more positive mood and general frame of mind.  The only negative so far is that I have subsrtantial muscle pain in my thighs.  Like I did too many squats at the gym.  Not !!!  I'm also staying with my son and have had to do stairs often during the day, which I don't have at home. If it wasn't for the leg pain I think I would say that the cement legs have lessened s well.   I'm going to stick with the plan, but would appreciate your thoughts.

Also, is there a typo in the pattern description?  You say ...."so the next 4 days would be old dose, then one day at new dose".  Isn't it the reverse?  That is:

Day 10 old dose

Day 11,12,13,14 new dose....and so on?

If all goes well, I was considering staying at 32 mg for at least 2 weeks maybe longer,  On another post you recommended staying at the new level for at least a month.  Again, your thoughts would be appreciated,  I know I have to be patient and listen to my body.  :-)  I promise I'm doing that.

Thanks for being there.

Yes Jean, there is a typo somewhere.

Did I type it on this site or did you ask for it via our googlemail?

If not correct it or send me an email marked for attn mrs k Reduction Plan.

If the cement legs and muscle pain in thigh continues, if you can afford and find a Bowen Technique Practioner, not cheap mind you depending which area you live in.  Some of us have found that technique which is very gentle helps enormously.  You have to commit to three one hour sessions for three weeks.  I don't know exactly how it works but it does.

It seems to break up the cykotines which clump together and disperse them - but you must drink loads of water afterwards or it does not work.

I call it white witchcraft, I resisted for quite a while until EileenH who posts on here said for goodness sake give it a try.  I wish I had listened to her earlier.

Some people have found they don't have to wait at all, they can just keep on taking a continous drop.  You might be one of them, so give it a try once you get home and off those stairs.  Gentle walking best, aqua aerobics, power plates (providing you have a good instructor and gently swimming if possible and never sit down for more than one hour without getting up and walking around.

Take a look at the latest Newsletter on the website and read up on the Tips and Tricks supplied by Patients, if you have not already done so.

Remember the Tortoise won the race to the end of the long tunnel.

 

Yes, the typo is on this site in your response to Lois67.

At home I do water aerobics twice a week and once home I will get back to doing the gentle calistics I stopped doing a few monnths back.  How about short bicycle trips.  I intended to use my bike to get around our lttle town this summer, but didn't trust myself to stay balanced with steroid brain.  If my head remains clear should I give it a go?

I have a hard time sitting for more than an hour anytime anymore.  I've had to discipline myself to sit.  Actually, that IS one of the benefits that did remain from the inidial 40 mg euphoria/pain free 2 weeks following diagnosis!

Already read and printed a copy of the Newsleter to give to my Nurse Pratitioner.  It's great!  The NP is unsure of my tapering plans and whether it's safe.  I'm sure he will support me though.  I have an appointment with him next Friday.

I'll decide whetherr to stay at the lower dose once I get to the 7 days new dose.

Thanks again.