Help understanding what it all means: I have just... - PMRGCAuk

PMRGCAuk

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Help understanding what it all means

I have just found out, despite being on Prednisone, that both my markers have raised to a level higher than they have ever been even when I was first diagnosed. This increase was accompanied by increasing pain and stiffness. I self diagnosed last Jan 2018 after 2 months of excruciating pain. The first few months were a lesson in total lunacy with prescriptions from various Drs for doses from 5 mg to 60 mg daily. I finally settled with a rheumatologist about 8 months ago who started me on 15 mg daily. I have been tapering ( I thought slow enough) to 7 mg daily. Although I still had some pain and stiffness through my tapering I thought I was doing pretty good until the past few days whereby my pain and stiffness kept increasing. My CRP is now at 37 and sed is at 29. Last check in October had CRP at 4 and sed at 11. I am so depressed over this development as I feel I have been set back a year and more. My doctor has told me to increase to 10 and I see her this thursday. She wants me to do another blood test just before I see her to recheck my markers. I feel so hopeless like I will never see the end to this tunnel. Did I drop too fast? Can those numbers be so high despite being on Prednisone? Any suggestions or insight would be greatly appreciated

Thank you in advance for any enlightenment you can offer

18 Replies

I'll let the pros talk you through doses, I just want to sympathise with you. This trip in the Good Ship PMR is not a cruise, it's a rollercoaster of ups, downs and things that bear no correlation to each other coming to visit at the same time. My pmr is called Jack (in the box) as he pops up and bites me on the bum whenever he feels like it. Sometimes it's to do with overdoing things and sometimes because he thinks I need a visit??? Hang in there for the aunties and pros with the proper advice and know you're not alone.

in reply to Angiejnz

Thank you angie. Sometimes a friendly note from someone who lives/lived it makes someone like me who feels like she was shot out of a cannon feel a bit better. We are definitely on a strange and unexpected journey.

My markers have gone up and I’m back on the dose from 6 months ago , I thought I was doing so well but that’s PMR . I’m actually glad in a way as the pain and stiffness were getting to much again. Mine is called Poly , a bright blue parrot who sometimes sits quietly on the perch other times flaps and squawks something terrible.

in reply to Chrob

Hi Chrob.....sorry you had a similar experience to mine. Did you get frustrated when you had to backpedal?

Does it mean that I should name my I wanted guest?

Chrob profile image
Chrob in reply to

So frustrating ,but reading here I know it’s going to take longer than first believed . Diagnosed two years ago on the 17 th jan . I just named the b#**~¥ bird so I can tell it off . We will get through all this .

Angiejnz profile image
Angiejnz in reply to

I call mine Jack-in-the-box to remind myself he's an unwelcome visitor and is not staying for ever. I keep putting out the goodbye mat but I think Jack's illiterate 🤣

So sorry you have joined the club but you are in good company. Like Angie said, we'll leave dose advice to the pros on here. It's a strange lurgy but lots of good advice to be had in here. Hope you get your dosage sorted. I'm off to think up a name for my gorilla now.

A number of factors can raise your inflammation levels - even a slight cold. Your symptoms are key. No point in tapering with pain and stiffness on the increase. You’ll get there. Progress is not linear - more fits and starts. I know my disease is on the way out, I also know that I still have to taper gradually because my body has become dependent in some ways. Good luck.

It comes and it goes but it lurks ! You will see light at the end of the tunnel,you have to wait and there is no set time .We are all different ,Stress ,Illness ,or no damned reason that you can see at all .Accept the raised pred if you have to have it .You now know you can taper down again .this is a balancing act . Its sooooo frustrating isn't it .

PMRpro profile image
PMRproAmbassador

It doesn't matter how slowly you taper - nothing will allow you to get to a dose of pred that is lower than the amount needed each day to manage the effect of the new lot of inflammatory substances shed in the body each morning about 4.30am and which continues in the background for as long as the underlying autoimmune disorder that causes it is active. That is years - not months. Think of it like a bucket with a tap dripping into it while you remove some water with a spoon. As long as the volume you remove with the spoon is more than the tap drips in you will be on the winning side and the bucket won't fill up. But if the tap drips faster or you use a smaller spoon the bucket will eventually fill up and overflow.

You haven't been set back at all, the PMR will last as long as it lasts and nothing you can do will alter that, You may need a bit more pred for a while - but you were at too low a dose so that balances out. The pred changes nothing, it doesn't cure or even alter the disease process - it mops up the puddle of inflammation that has overflowed so that you feel better, have less pain and stiffness to allow a better quality of life in the meantime. No more, no less.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi,

The point is, you need to be on the correct level of Pred for you and your illness. That varies from person to person, and depending on your personal circumstances. If you had pain and stiffness maybe that should have been an early warning that you weren’t taking enough, but that’s a lesson gone by now.

Your chequered start probably hasn’t helped, and maybe 15mg was not a sufficient “starting” dose.

Go back to 10mg as suggested by doctor, make sure you get rid of all of your pains etc (if you can) before you even think of reducing again.

Just because you are taking the Pred doesn’t mean the PMR has gone away, it hasn’t. The medication is only controlling the inflammation caused by the underlying illness, and that is produced every day you still have PMR. That can be 2 years, 4 years even more, so you need to accept this is going to be around for a few years, not here today and gone tomorrow! Don’t be depressed, that’s just the nature of the illness, not your fault and nothing much you can to but accept!

When you do reduce, try 1mg a month, but only if you have no return of symptoms, if it’s really difficult then try 0.5mg a month, and a slow taper like this -

healthunlocked.com/pmrgcauk...

Don’t be rushed by anyone, and learn to listen to your body. You will get there, maybe not a quickly as you would like, but you will get through this!

As Jane says your raised markers may be due to other things as well as your PMR - during my GCA mine were raised, but no symptoms. Later I realised it’s was due to stress, hubby was very ill and subsequently died.

So symptoms are the key- always.

Thank you all for your kind and sage responses. I felt like I was kicked in the gut by mule Yesterday when I got the news. I had been so happy with my progress and thought I might be the "exception" to the rule. I guess I got a reality slap. The advice I got here was my reality check.....thank you all

Constance13 profile image
Constance13 in reply to

I think most of us believe we are the “exception” at the beginning of this journey, but reality soon hits us!

Median time is 5.9 years so figure that much and if it's sooner a pleasant surprise. Dr told me 2 years also but now almost 3 I have hunkered down for the long haul. I do feel better than I did at the start but not "well".

I think a lot of us think we may be the exception to the rule and trundle on downwards. Your inflammation markers are merely backing up the fact you were on too low a dose. I do hope that 10mg works OK for you. Once you are stable you can then come down again, but slowly! You have only been on pred for a year. The average active life of PMR is 5.9 years, some get over it faster of course, you may be one of the lucky ones. Your inflammation markers are low compared to mine. On the other hand I don’t seem to be able to get below 50 for my ESR. Goodness knows why.

in reply to piglette

Thank you for your kind and informative note. Hopefully this 10 mg dose does the trick for me. I will see how my markers are this week when I repeat my blood test and if my symptoms are kept at Bay....time will tell.

It certainly is disheartening when flares occur, and they result in an increase doseage increase.....but that is exactly what is needed. Imagine my anger and frustration when I flared following my (former) rheumy's tapering plan. I ended up having to go back up to 15mg for 5 weeks and start over. Alas, lesson learned and now after 8 months, I am lowering at my own pace, by .5mg increments, now that I'm under 10mg. No flares since.

Sometimes if you catch the inflammation early, you only need to return to a higher dose for a shorter period to mop up the extra inflammation that is causing a return of symptoms. All of your results lowering your dose may not be lost.

As the wise folks here have said, you need what you need. Try and think of it as simply lowering your dose overall, and not get hung up on the numbers and predictions of where you intend to be. PMR is in the driver's seat, and will surely mess with your plans, which will in turn make it even more difficult to accept. Once I accepted that this would be around for years, not months, and planned for challenges such as flares and side effects (with help from this forum), it made it much easier to cope with hiccups when they arose.

Feel what you feel, get it out, process it if need be, and try and prepare yourself for the future journey in collaboration with your rheumy (if they are good), and the fine folks on here.

Let us know how you make out.

in reply to PMRCanada

I will and thank you

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