I've joined the ZERO club!!
Posted , 16 users are following.
Hi Everyone!
Just a quick one to let you know it's possible to join the Zero Club - albeit with help of Tocilizumab (Actemra).
I can't tell you how much better I feel off the pred - right down to the last .5mg I still had side effects such as an increased appetite, brain fog, lethargy, etc.
It took nearly a year to get off pred after starting Actemra, but well worth it. Two weeks after my last dose I feel like I have my life back, even though I still have PMR. I'm still a bit stiff, but I have no pain. I have more energy. I eat half what I used to and I am no longer drinking too much because I'm depressed. Pred has a lot to answer for!
I'm injecting Actemra weekly, but the rheumy has mentioned going off it as well early next year - which will be the real test to see if PMR comes screaming back. I've told him I'm not keen to experiment!
2 likes, 52 replies
Guest FlipDover_Aust
Posted
I am off Pred since Sept 16 and so far I have no pain. Some stiffness, but mainly in the hip area. I went to the rheum last week for blood work, but still waiting for the results.
Hoping, we can stay on zero. Good luck!
FlipDover_Aust Guest
Posted
I'm also very stiff in the hips/lower back. I can't even bend properly and walking is a real chore.
Guest FlipDover_Aust
Posted
EileenH FlipDover_Aust
Posted
I wonder if that is myofascial pain syndrome - it made me terribly stiff, long before PMR. Physical/therapeutic massage therapists are the way to go there - pills aren't targeted enough although I get relief with injections.
FlipDover_Aust EileenH
Posted
I have weekly massages which seem to help the really stiff spots in my lower back and hips, even though it's painful at the time.
I also have these weird 'spots' that are very tender to the touch that I don't think are related to PMR. They can be massaged out - they are not swollen at all but feel like they should be.
EileenH FlipDover_Aust
Posted
Where are they? Shoulders, about rib level and low back are all typical places for myofascial pain trigger spots - which are areas of inflamed and hardened muscle fibres which you can feel as a knot in the muscle. There are other areas in your back where, if you press firmly (or even not so firmly), the pain is excruciating! Same thing but the actual fascia of the muscle group is tight and inflamed. Some doctors can't tell the difference between them and fibromyalgia trigger spots - but therapeutic massage and steroids will get rid of them. The first time I had massage for it it took twice a week for the best part of 9 months!
FlipDover_Aust EileenH
Posted
Sounds exactly right. I can make myself cry if I accidently touch them too hard. I have a massage every week, but we don't focus specifically on those spots - we try to get my hips and lower back loosened up.
Michdonn EileenH
Posted
EileenH, I do not what happened, but any of the new postings come up with the same error message, (Bad Request - Invalid URL). If you could please pass that I would appreciate it. Thanks 🙂
HTTP Error 400. The request URL is invalid.
BettyE Michdonn
Posted
Same here. Also, although I reset my references I'm still getting email notices and, when I log in, posts that I marked as read are coming up as new posts. Weather must have got into the system.
BettyE
Posted
EileenH Michdonn
Posted
I've already sent a message to the EMIS Moderator - but it is the weekend. Don't hold your breath before Monday...
Emis_Moderator Michdonn
Posted
Hi all,
There has been a problem with our email sender site that has caused these broken links. This will get fixed today. In the meantime you can use https://patient.info/forums/me/notifications to view notifications and apologies for the inconvenience.
Regards,
?Alan
linda17563 FlipDover_Aust
Posted
How wonderful for you......and just what myself and others need to hear when struggling.......my sister only said to me a couple of hours ago......I don't think you will ever get off steroids, to which
I replied never say never........
Keep Well............
FlipDover_Aust linda17563
Posted
you will!!! Don't let the naysayers get you down!!
linda17563 FlipDover_Aust
Posted
This is why it was heartening to hear your news...enjoy that zero club!
....
EileenH linda17563
Posted
As long as the answer is "if I didn't take it I would feel even worse..." nothing should change.
linda17563 EileenH
Posted
Yes, exactly Eileen, and I have been worse, when Mr second opinion made me lower 1mg every week to see how I was (from 10to5) but my husband then said stick it out and see if it goes away!.....I am tired of trying to explain.....never mind, tomorrow is another day....and Christmas is on it's way...grrrrrrrrr