First sign of a setback ? or coincidence

[gillsky8]

Well, I thought everything was going great ..... until today.

I woke up just a couple of mornings ago with a very slight neck ache, hmmmmm thinking I may have just slept akwardly.

This is just on the week that I am about to reduce from 15mg for the last 3 weeks to 12.5. Well it kind of wore off a bit so I went ahead with the reduction to 12.5 over the past days. Oh boy this morning my neck was really really bad.

I decided then and there to go back up to 15mg and even in the space of just today I am already feeling much better.

I know people do tend to adjust their dosage accordingly, I was reluctant to do so, but maybe need a little longer on the 15mg than first thought.?

Gill

[PMRpro Ambassador]

Since you were feeling so much better - have you been doing things catching up with what you couldn't do pre-pred?

[DorsetLady PMRGCAuk volunteer]

Although it’s often stated in guidelines, many of us think 3 weeks is not long enough on initial - or honestly - most doses. .. and you will learn that if you aren’t 100% sure on current dose, you don’t reduce…. despite pressure from medical team.

There is nothing wrong in a small increase if current dose is not enough ….no point whatsoever in not being on enough.

[MiniSpec]

Interesting! I've recently been reducing my dose of Pred and have also been suffering from neck ache. However, it's now moved to become head ache, and the whole of the left side of my head aches. Like you, I've wondered if it's caused by my dose reduction, but now my wife has told me that she's also getting neck ache on the left side as well, and she doesn't have PMR or take Pred. So it could be just an awful coincidence in our case.

Regarding your reduction, personally I'd only reduce 1mg at a time, and I'd spread the changes over a minimum of 8 weeks not 3. That way your body gets to adjust itself to the new normal before you start hitting it with more changes. Furthermore, once you get down to 10mg only reduce at a maximum of 1/2 mg at a time, as it's the percentage of change that causes most of the problems, and you want to keep the percentage of change down to 10% or less each time.

I invested £3 in a pill cutter (available from chemists or Ebay), so that I can cut my tablets into quarters, and that's allowed me to reduce the amount of change to the absolute minimum each time. It makes a huge difference to the amount of aches and pains you get each time you reduce if you can keep the amount of change as low as possible.

Best of luck!

[sidra1968]

For what it's worth, I have had to do this 3 times already..thank goodness my doctor has been very good about it. Started another taper attempt 2 nights ago.

[PMRpro Ambassador in reply to sidra1968]

Does it fail at a similar dose each time? If so that is your body telling you that you have arrived at an interim destination!!

[sidra1968 in reply to PMRpro]

Yep, in fact the neck started up again today already..after another 2 months of blissfully, virtually pain free living..gonna tough it out today but gosh, this is getting so old.

[PMRpro Ambassador in reply to sidra1968]

Then it is self-defeating trying to get lower than that dose. All that will happen is that the inflammation is not all mopped up and will build up until you have a flare. That is what gets people into a yoyo pattern with pred and that is really absolutely the worst thing you can do because each such flare and raising the dose makes the next time harder and you will end up flaring at a higher and higher dose, You are looking for the lowest effective dose - that is the one before the symptoms reappear.

[sidra1968 in reply to PMRpro]

I know, the problem is I require a so much higher dosage than most. 30 mg is where I am 98% fine ..trying 27.5 mg now and already can tell it's probably gonna come all back again. My GP has been very good about this. I am seeing my first rheumy Oct. 10th, obviously my biggest fear is they cut me off and I truly cannot live like I was before, NO way. My ESR finally went down after 2 months on 30 mg (actually went up on 27.5, but it's not insanely high), hence my GP saying we try tapering again. Thanks for all of your expertise. This site truly is a godsend.

[PMRpro Ambassador in reply to sidra1968]

If you need that much pred it suggests this is NOT pure and simple PMR and your GP should have been seeking rheumy advice long ago. Forms of inflammatory arthritis can present looking identical to PMR, it is called a polymyalgic presentation, but te=he characteristically don't respond as well to pred OR they respond well initially but it is next to impossible to reduce the dose. You will almost certainly have to reduce the dose though so they can see it without the effect of pred.

[sidra1968 in reply to PMRpro]

Yep, I agree. I have had about everything else ruled out. He said they can check for other connective tissue diseases, maybe? The Pred response is miraculous, so that is about the only good thing and what they can go forward on, I suppose. I don't get stiff either, just pain. I cannot work when the pain is there and we have drained our savings with me not working for 2 years now. I feel basically "normal" on the 30 mg and start looking for jobs...then it comes back at the tapering and I realize there's no way. Thanks for your input. Any ideas on anything else it could be?

[PMRpro Ambassador in reply to sidra1968]

Not really. Not without some test results! There is another thread today from someone whose MS was misdiagnosed as PMR and there is someone else with both MS and PMR as a diagnosis. I have never some across it as a differential diagnosis but I believe it can present with severe pain. Maybe worth an MRI to rule it out.

[sidra1968 in reply to PMRpro]

Ok, thanks..I don't think that is it, don't have any other of the classic symptoms..but definitely want to rule out everything so will mention it. My GP thinks it's PMR, too but isn't 100% sure for the reason you stated. The pain attacks my wek spots..my neck (where I had the spinal fusion) and the hip where I also have to get ESIs for a torn labrum after a hiking fall years ago. My knee (it switches) will be painful out of he blue, too once in a while (for no reason) and another area is back lower ribs..very connective tissue type of pain, only way I can describe it- and it refers all the way around my waist and is very painful if pressed. Like you, could be myofascial pain syndrome also going on. BUT physio or massage makes it worse.

I cannot take NSAIDS because after 35 years of a lot of usage (ibus) for endometriosis and many bouts of radiculopathy before the fusion, I got diverticulitis from that and a huge gastric (very rare) one (non-symptomatic, thank goodness). Well, have the in-laws coming over for lunch so will be back later. Thanks for all!

[PMRpro Ambassador in reply to sidra1968]

Does most of the pain stay constant or does it move around? But given the complexities - you needed a rheumy long ago,