It's been a while since I posted. Thinking of each of you daily and hoping you are all doing well as can be expected...
Rhemy wanted me to go on methotrexate. I declined. She wanted me to start reducing 1mg of pred every 3 weeks instead of every month due to my history of bad reaction to oral pred.
So 3 weeks ago I went from 8mg daily (where I was pretty pain free) to 7mg. Since then...The pain has been horrific in my wrists and shoulders. I decided to try to push through it.
Yesterday I went down to 6mg. Yesterday was awful,,,then I woke up this morning feeling almost "normal". I scrubbed floors, multiple loads of laundry, shopping and overall normal stuff. It's 9:45 PM and I'm really tired but not feeling like I was hit by a train (like I felt the entire 3 weeks of going from 8mg to 7mg).
Don't know what tomorrow will bring. I suspect I will feel the effects of my overdoing it today.
In the meantime... Sweet dreams and prayers for a restful night to each of you.
Don't know what it is with Rheumatologist and Methotrexate,When you read a lot of the Posts its sort of the done thing after you have been on Pred for a while,I refused it also,I think one lot of side affects is enough for a Body to cope with, Well done getting down to 6mg,But you want to take it easy give your Body time to adjust, Wish I was that far down,Reducing to 25mg next week, Good Luck.
Wow! I hope you can move when you wake up. You really over did it!
I'm hoping to reduce from 5mg to 4 1/2 mg next week, but am quite nervous. I know some people have difficulties once they get to 5mg and a few have been advised to stay on 5 for several months (although, normally, people reduce by 1 or 1/2 mg per month). The complications of pred!!😡😡
All the best, and TAKE IT EASY,
Regards fr Constance. 💐
Hi maggigrace, what's up with your rheumatologist? What's the big deal? Everything we do is a balancing act, in that we have to balance out the good the preds are doing against any bad side effect we may be experiencing and surely as we reduce through the doses hopefully any side effects experienced will decline.
i'm no rheumatologist but this is how I see it. Stop reducing by 1mgs each drop, try reducing by .5 it's less stress on the body. The 1 month reduction is fine, try and keep to that instead of the new every 3 weeks. It's too quick a reduction and your body is hardly getting use to the new dose before it's being asked to cope with the next lower dose.
you need to be very careful that you don't end up with a flare and if you do it'll be back up onto the higher doses again which will have defeated the object.
you say that you suffered preds side effects, well you need to ask yourself were those side effects worse than how you are now feeling. All the best, tina
Hope you are not suffering after your busy day.I eventually had to come off pred.Rheumatologist started me on methotrexate three weeks ago.Warned it could take up to 14weeks to see result so to keep on with analgesics.Touch wood only side effect so far has been nausea for a day after dose.Last couple of day feels as if PMR is fighting Custers last stand as pain in shoulders and arms has been horrible.Hope it goes soon as on holiday soon.Good luck with your journey
Reducing by 1mg at a time at this level is far too large a step to not risk having withdrawal problems - and the symptoms of that are very similar to PMR. Every 3 weeks is also a bit risky I feel - it isn't giving your body a chance to catch up with its own cortisol production. If it were me I would ask for an adrenal function test before going much further with the reduction - and before anyone says you can't until the pred is stopped: yes you can, it just has to be interpreted differently.
If you really do have to proceed with this reduction then I would also suggest that you rest rather more when doing it! We've always suggested that one way of improving the way you feel during a reduction is to clear the decks and avoid stress of any kind just to help your poor adrnal glands!
Personally there were no side effects of pred I had that were worse than untreated PMR - I gained a lot of weight, my skin and hair went mad and I grew a lovely black beard (I have been totally white for over 20 years). I had 5 years of unmanaged PMR - I never had a day free from pain and my life was severely limited as a result. Someone else said the same recently when smeone asked what side effects she could expect. There are 82+ - which she'll get, if any, is a lottery!
Astonishingly... I awoke feeling almost exactly the same as I did yesterday before embarking on my cleaning-frenzy.
There seems to be no rhyme or reason to my ongoing symptoms... I've felt either really bad or "almost" good on both rainy and sunshiny days. I've tried no carbs, no alcohol, etc. and nothing seems to make a difference.
I I won't risk another "cleaning frenzy" anytime soon. Don't want to jinx my luck with this one...
Pain-free prayers and blessings to you all.