Still discouraged
Posted , 9 users are following.
I wrote about a month ago, but couldn't find the post. I'm about to "celebrate" 3 ys. of PMR. Back in July I had gotten to the transition between 2.5 and 2.0 mg. Medrol in the AM with 0.5 mg at night. CRP and Sed rates were much higher than they had been so I went back to 3.0 mg in the AM for over 3 wks, and then to 3.5 mg. AM at Rheum's suggestion. After a week of that I forgot the PM dose so I took 4.0 mg Medrol in the AM and have now been on that dose (all in the AM) for 2.5 weeks. CRP/Sed are really about the same as they were in July, when I was between 2.5 and 2.0 mg. I can't say that I feel much better or worse thru any of this, but I'm even more discouraged if that's possible. Thanks for listening
0 likes, 7 replies
SectionedThrice
Posted
I guess I do have a specific question for you wise folks and veterans--given that the numbers aren't really changing, nor is how I feel, would you wise folks suggest that I stick with the current dosages/configuration for a while--in the hope that the numbers improve with a lot of time, or should a just "soldier on" with the DSNS plan and begin a 7 week reduction from 4.0 to 3.5 mg Medrol?
Michdonn SectionedThrice
Posted
We are different and react differently to Pred or Medrol. I will not reduce my dosage till I am PMR pain free. I do not know how my body is going to react on small levels of Pred, but I hope to find out. I use the DSNS method, small flare up my dosage 5 mg felt good after 3 days drop down 2.5 for 3 days then another 2.5 and back o taper schedule. That's what I do. Good luck think positive. I have a smile on my face. 🙂
snapperblue SectionedThrice
Posted
Your emphasis seems to be on the CRP and sed rate. I wonder how you feel. Dragging around? Perky? Zippidi-dodah? Any pain or stiffness?
Also, when you say your numbers are higher, how high are they?
This information may help others respond.
I'm sorry you are discouraged- there is a lot of that going around in PMR circles, so many of us will understand and sympathize!
SectionedThrice snapperblue
Posted
This week, my Sed rate was 37 and my CRP was 29.3. For a long while my Sed was running 32-36. My Rheum and PCP both say that was OK "for my age", and I know that EileenH has explained that not everyone agrees with the "for my age" explanation. B/f Pred, when I was diagnosed 3 yrs ago, Sed was 104 and CRP was 203.0--but then I couldn't get out of bed without help or bend down to pick up the newspaper. Best it's been since then was Sed 18/CRP 3.1 and that was on 4 mg Medrol in AM and 2 mg in PM. I'm neither perky nor draggy, something in-between, but manage to do what I need to do.
brenda69464 SectionedThrice
Posted
I am quite new to PMR(diagnosed in august) but I feel for you.
I hope this is only a temporary situation and your body will heal and go into remission soon.
Good Luck!
Rimmy SectionedThrice
Posted
Hello
Understandably you feel 'fed up' with having this condition for so long - but really you are at a low dose and providing you are not 'regressing' in terms of pain or discomfort - then that isn't tooo bad a place to be in. One of the things we must all remind ourselves of is that this is a long-term illness - with only about half (or less) of people out of the woods in a couple of years - and many need Pred (at small doses) for years ! So 'soldier on' undeterred because you WILL overcome eventually. The MAIN thing is you respond to your body's messages and if you have to increase and decrease again - then that is what you must do - and remember this medication is assisting you in the long run to feel better until you GET better !
Best wishes
EileenH SectionedThrice
Posted
The CRP/sed rate MAY be raised for some other reason. Has your doctor investigated that?
But in terms of the PMR, as the others say: how do you FEEL? Have you PMR symptoms? The symptoms always trump blood markers in PMR, either way. And the yardstick is the way you were at your starting dose once everyhting had improved as much as it was going to.
If you feel OK then there is no reason why you shouldn't try a slow reduction. If you don't - then maybe you need 5mg or even more. It isn't failure to go back to a higher dose if it makes you feel better. That is the whole point of being on pred after all. And anything under 5mg is a low dose and really not associated with much in the way of side effects.