Hi again gang!
Posted , 14 users are following.
hi everyone. I hope you're all happy and doing well.
I know my posts have been bit sporadic, I've just got alot on my plate (as anyone who knows me is familiar with!
I've got a PMR question tho. for about 3wks, I've been on 5mg (Yay me!) and been relatively ok. the last wk I went to 4.5mg, and tonight I am hurting so bad I can hardly move! no joke. it hurts to stand and sit.....the only tiny bit of "comfort" is laying in bed. the worse parts are my knees, my back and neck, and my elbows. it all came on like a Tsunami!! again, no joke.....it was so quick.
any advice or knowledge would be greatly appreciated.
BTW....my 2 thyroid biopsies are in 2wks, and then the "granddaddy" of biopsies (bone marrow) is 7/16. I can't even think about that one right now.
anyway, as I said, I hope you're all in good spirits and feeling as good as possible!
I miss you all......I'm just Sooo fatigued all the time.🙋💕
0 likes, 12 replies
nick67069 lynda62707
Posted
I would go back to 5mg before it develops into a full blown flare. Then try again in a few weeks.
BettyE lynda62707
Posted
It does seem that it is below ten mgs. that reductions often hit snags and some doctors advise staying longer at each level as we reduce. I remember being told to stay at 10 for three months on one occasion.
You say relatively ok on 5 so maybe it would have been better not to go down further until you could give yourself less than six out of ten on the pain level.
As the pain has returned with such a vengeance I'd not be surprised if you need to up your dose ASAP and by more than 1 mg.
Of course, you also have to consider that the pain and reduction are co-incidental and not directly related. As you say, you do have a lot on your plate,
I tentatively suggest upping to at least 7 but I'm not qualified, of course.
Best wishes for some relief very soon.
lynda62707 BettyE
Posted
hi BettyE, I'm so happy to hear from you. as I told Mary, I think i am gonna go up a couple of mgs (Right Now, as a matter of fact!)
you nailed it about being relatively ok on 5mgs. I probably should have stayed there longer. it's just that I've got SO much stuff coming up, which probably will require more medication......that I'm trying to do away with as many different things as I can!!
i haven't even gone into my lung situation getting worse....and I won't bother you with that.
but thanks for being there and listening.💝
BettyE lynda62707
Posted
The times when you have lots of stuff coming up are definitely not the times to try to push the reductions but I know that you know that and I understand. You'd just like your body back, preferably without having to depend on pills..... I was only on 1 mg. when I had my hip replacement and was told that under no circumstances should I stop taking it until after my six week follow up appointment. I've posted this before but perhaps worth repeating. My situation was simple compared with yours. Be kind to yourself.
mary19068 lynda62707
Posted
Hi lynda62707
Great to hear from you!
Sorry your in so much pain! As i have already mentioned in posts way back i continued tapering even though i was getting pain so i could get off pred. In your case i strongly suggest you go back to the lowest you were comfortable with. Due to all the medical tests in front of you it would not be good for you to be in pain when having your forthcoming biopsies. Be patient and wait until all the biopsies are carried out and you get your results and take it from there. Huge best wishes that all will go well for you....
lynda62707 mary19068
Posted
thanks Mare for getting back to me so quickly. I think I'm gonna take your advice and go up a few mgs. I do realize that it could be coincidental, but I'm such a "baby" I really can't stand anymore pain.
think good thoughts (especially on 7/16)!
I'm trying to stay strong in both attitude and body.....but it's tough.😖
mary19068 lynda62707
Posted
Hi lynda
You have made the best decision👍. Will be thinking of you on 7/16 with huge support and lots of kind thoughts, love and good wishes your way....stay strong💪💗😚
frances08867 lynda62707
Posted
Hi Lynda,
I have newly joined this forum though not new to Polymyalgia, have been on Prednisolone since May 2018. Like you have been gradually reducing from 20 mg starting dose and now down to 5 mg and these last few months have been awful, lethargy, very painful hands, wrists, shoulders, back, hips and thighs, most days a real struggle can barely lift a kettle or pan and muscles seem very weak, dreading going down further. GP wants me off the steroids as quickly as possible as she does not think I have responded as should to steroids and now have high blood pressure too. I think tapering does seem to be like PMR symptoms are all back maybe the lower the dosage? I would welcome any advice too.
EileenH frances08867
Posted
You would probably get more responses if you reposted this as a new thread.
frances08867 EileenH
Posted
Sorry, did not realise I had butted into Lynda's post as this came through my email.
Bethune lynda62707
Posted
Oh dear... please take care and give yourself a little bit of comfort before you go through all those biopsies... wishing you the very best. You are being very brave.
daisylazy lynda62707
Posted
Hi Lynda you have got good advice so I'll just wish you good luck and prayers with all your biopsies and your lung problem.