Does the back and forth ever end :-(
Posted , 7 users are following.
Diagnosed in April 2016 and started on 15mg. Excellent results within 24 hours. Tapered to 12.5, then 10 and was doing well on 10 for quite some time. If I tried to go below 10mg symptoms would return so I stuck with 10mg for almost a year.
Several months ago I had some radiation treatment and the 10mg was no longer doing the trick so I slowly kept increasing it. Now back to 15mg and it is no longer as effective as it was when I first started. Feel stiff and achy again and the extreme fatigue is making me miserable.
I am reluctant to go above 15mg since the thought of having to be at a higher dose then when I started over a year ago is a major set back to me psychologically. I figured by now I would have reduced my dosage and be well into the process of losing the weight I gained.
Am I being foolish not to try doses above 15mg or should I try to stick with it and hope that it eventually works as it did in the past ?
Thanks in advance.
0 likes, 36 replies
rocketman42
Posted
Today is the 2nd day I took 20mg in the AM. The aches and pains have improved but still find it difficult to walk due to "powerlessness" of legs and hips. Parked my car yesterday and had to walk 3 short blocks to my destination and it was extremely difficult even though I was walking slowly.
Guess I will give the 20mg a little more time to work. However, is there a reasonable chance that this particular complaint will not improve or does the dosage have to be increased even further to see improvement ?
EileenH rocketman42
Posted
Be patient - some people need as much as a few weeks. You haven't been ill just a few days have you - and in that time you lose fitness very quickly. Some people are never totally pain-free - and if anyone has told you you will be "back to normal" or that on pred you will feel great: they are at best exaggerating and at worst plain lying!
BillyP rocketman42
Posted
For me,if i am having a few bad days,and decide to up the pred dose purely
for my comfort,i will double my 5mg daily dose to 10mg daily. After four days
if the pain has subsided i will then drop straight back to 5mg daily.
However if i have to go longer than the four days to be reletively pain free,
i will then taper the dose back..(by how much i hear you say ??).
This is where your experimenting comes in....
for me one half mg daily to 1mg daily (depending on how i feel)
I think that sounds a bit clearer.
Michdonn rocketman42
Posted
Hi scotth42, a bit of my saga, I skied and worked as a ski instructor all
winter 5-7 days a week, up to the last week of skiing, I think 2nd week of
April, came down with sore throat and head cold. The cold clearing up
couple weeks later, woke up one morning, PMR back. Had reduced 7 mg.
Called the RHEUMY, explained the flare-up, increas to 10 mg, no help, 15
mg, no help, 20 mg, no help. Had an appointment with the Rheumy, I could
stand but could walk, my wife me a wheelchair at Medical Center and rolled
me for the appointment. The Rheumy up the Pred to 30, that was 4/27/17,
she told me to reduce to 27 1/2 in 7 days, and reduce by 2 1/2 mg, till she
saw me again. On 5/15/17 called for new prescriptions, one 5 mg, one 10
mg. 5/17 drugstore calls, they have a prescription for me. I am able to walk
a bit take my wife car, automatic my a stick, go to drugstore, ask the lady,
what is this prescription for, 10 mg a day for 30 days, 30 pills a ten day
supply. I called the doctor office back, I was not nice, my wife has told me
I am not nice at all on 30 mg she not wait till I am back at 10 mg, but neither
can I. My wife called the doctor office and told them to please call her. Then
told me, PLEASE GO TAKE A WALK! But the Rheumy, call me as I am trying
to take my little stroll around Ashley Pond, walking with help of my cane.
Big mistake, it was not a nice conversation. Okay, stay on 30 mg till my next
appointment, she was wrong and will not admit it. If Monday's appointment
does not go well I will start looking for an Rheumy, which will be 40 miles of
here, she to one here. If my labs results are good, I am now up to 4-5 miles
a day from 1/6 of a mile when I started 5/8/17 , and that was not a pain free
day. But the people on the forum, kept saying, get out there, move. My wife
got me a fitbit to track my steps, it has been a great help. I am a bicycle rider
normal ride 3,000 to 4,000 miles a year in the mountains of New Mexico. I
am 79 years young, looking forward to get on my bike and skiing again next
winter. This is not an easy road, but I for one am not going to give up. Listen
to your body, you are are in charge. There's a lot of good advice and people
to question. We are all on the same road. Good Luck!
rocketman42 Michdonn
Posted
Sorry to hear about your bad experience but thanks for sharing.
Today is my third day on 20mg ( up from 15 ) and feeling much better. I may try BiilyP's routine and hope that after three days of the higher dose the inflammation is reduced and since it's only been three days I can go back down to 15mg and maintain feeling good. I know that everyone is different and one has to experiment so that is what I will try in the hope of not staying on the higher dose too long.
If anyone suggests differently please speak up.