How high should I go?: Started at 20 and told to up... - PMRGCAuk

PMRGCAuk

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How high should I go?

1958hurts profile image
13 Replies

Started at 20 and told to up 5 of prednisone until pain is gone. 1st day of 30 and almost there. Is this normal? I would hate to have to go to 35. I hope tomorrow will be the day it will work. I also had my first dose of methotrexate today. I am very nervous about all of this. The insomnia has also started. Waking up at 3 and not being able to go back to sleep is making a very long day at work. Any suggestions?

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1958hurts profile image
1958hurts
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13 Replies
Rimmy profile image
Rimmy

Hello - you may need that bit extra of Pred - but I'd give it 24 hours to see the effect - you should be getting some relief if it is PMR - otherwise I would be talking with your rheumy again. Insomnia can be a big problem - do a search using that term for previous discussions about how to deal with that. I used an over the counter (in OZ anyway) antihistamine /relaxant doloxymine succinate - 'Sleepwell' (known by other names as well) - only half a tab when I was on higher Pred doses and it helped me as insomnia will make everything 'worse' and you don't want to get exhausted. All the best with it all

Rimmy

SheffieldJane profile image
SheffieldJane

30 is the high end for Pred. Not everyone gets along with Methotrexate ( I hope you do). You had to come off Pred for diagnosis didn’t you? This maybe making it harder to control. Always decrease very slowly.

I was prescribed 10 mgs of Amitriptylin to take one hour before sleep. It bought me about 4 hours at the height of the problem.

If Pred at these levels was not giving me relief, I would be questioning my diagnosis.

1958hurts profile image
1958hurts in reply toSheffieldJane

Yes, I had to come off for a week. Worst week I ever had with PMR. The pain was so much worse then before the pred. I had only taken one dose of 30. So I am hoping in a day or two it will control better. Keeping my fingers crossed

bunnymom profile image
bunnymom in reply to1958hurts

It took several days for me to get relief at first. Hang in there another day. Pred does mess with sleep. I found I could get by on 7 hours as opposed to usual 10. I changed my shift at work to go in earlier. I fell asleep ok but would wake up at 4 am for the day.

Sandy1947 profile image
Sandy1947

PMR has no normal! I got relief at 25 mg. Took Advil PM 1 and a half tablets...sleep from 8-2 when my old dog wants to go out. Should give her the PM pills! Attended a lecture about meds and pharmacist said to take Benadryl instead of PM

bunnymom profile image
bunnymom in reply toSandy1947

My Dr recommended Benadryl also.

Charlie1boy profile image
Charlie1boy

Hi,

As you may be getting to understand, PMR seems to manifest differently in all of us.

In my case, I was started at 20mg, where I remained for six days. I then had a second visit to my GP, who raised the dose to 30mg to clear up the pain. This did work, but I remained at 30mg for just over three weeks. The pain relief was not instant, but was gradual.

I do regard prednisolone as a miracle drug, but it was not 100 percent instant for pain relief.j

I think being at work must make matters doubly difficult for you, as the one piece of advice we nearly always give is to give yourself plenty of rest and tlc.

How you will manage to do this, and keep working, I do not know!

Anyway, good luck.

Paddy

1958hurts profile image
1958hurts in reply toCharlie1boy

Since I only had one dose of 30 I am hoping a few doses will work. How many days do you suggest before I increase?

Charlie1boy profile image
Charlie1boy in reply to1958hurts

I couldn't possibly say; sorry. To be honest, and especially as you are at the start of this condition, I suggest you discuss this with your GP.

What worked fine for me might not necessarily work for you.

Paddy

Valnvaughan profile image
Valnvaughan

Hi

Maybe it is time to take some sick leave till your body gets accustomed to the Pred dose. You need to rest. Starting Meth. too will complicate things.

Best of luck. Valerie

SnazzyD profile image
SnazzyD

I agree with Valnvaughan, you need some sick leave to get to grips with this. You are embarking on two major medications here, not just one. It would also be a shame if you end up longer on these things because your body didn’t get the rest it needed, especially if you’re throwing sleep deprivation into the mix as well.

PMRpro profile image
PMRproAmbassador

I wouldn't go higher - be patient. Rome wasn't built in a day! It isn't unusual for it to be harder to control a flare after being forced to stop pred for some reason. While the stiffness and muscle pain went quickly for me, I found the bursitis and tenosynovitis pain took much longer.

I found methotrexate interfered with sleep - far more than pred ever did. It seemed to make pred side effects worse and I also felt as if I was flaring while taking it - which isn't quite the point.

1958hurts profile image
1958hurts

Good to know. Jaw pain started yesterday but not bad. A little worse today. I am going to call rheumy tomorrow since this is new. A little headache but not bad. I wonder if that’s why I am up to 30 and little relief. Blood work shows elevated wbc’s with a few other off a little. Sedrate and CRP normal. Wish I could get relief with a lot smaller doses of steroids and no methotrexate . That would be nice. I was hoping I was one that would only get PMR with nothing else. Guess not.

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