CRP going up?

[Cfmad298601]

Recently in general all going ok. Was put on mtx about 10-12 weeks ago, didn’t have any obvious adverse effects other than a bit of hair loss, but doing fortnightly bloods as recommended. At this time was tapering slowly around 12.5 & 11mg

CRP was gradually decreasing and test done beginning of July was at 4. Latest test was yesterday and came back as 10, which is worrying………although not overly high, but indicates it’s going back up..

I have been tapering to 10.5 and had noticed a bit of stiffness in morning neck, more fatigue and intermittent mild aching around side of head/face, but only occasionally and lasts a few seconds.

I had a phone consultation with Rheumy about a week ago and she wants me to taper by 2mg a month in time for our next clinic appt at the end of Aug. Which I’m thinking is pretty much unattainable…..

She also suggested increasing mtx, but I’m worried it’ll also increase hair loss and how can we tell if it’s actually working anyways as I’ve heard it doesn’t for a large section of people.

There was mention of (yet another drug) amitriptyline? Which looking into is an antidepressant 😱why would I need that for goodness sake? So tired of all this pill popping……..

Any thoughts,

[PMRpro Ambassador]

These days amitriptyline is rarely used as an antidepressant, far more as a management for nerve pain, I do wonder why they are so keen to add it in in PMR as PMR isn't nerve pain - and it isn't fibro where it is used widely. But fibro isn't an inflammatory condition. Some people on the forum are on it - it helps with sleep too.

A single raised CRP isn't a reason to increase the pred UNLESS it is accompanied by symptoms. It is better to wait a week or two and repeat to see if there is a rising trend - but you DO appear to have symptoms.

If you are touching on symptoms now - what on earth is your rheumy thinking of telling you to reduce at that rate? Below 10mg all the guidelines say not more than 1mg per month. MTX doesn't work immediately - it can take a few months to allow tapering and the full effect in reducing pred dose (if it is going to happen at all) can take up to a year.

[LemonZest11 in reply to PMRpro]

What a helpful response! Glad we've got you!

[DorsetLady PMRGCAuk volunteer]

Hi,

Amitriptyline is often used as pain relief, so guessing that's why rheumy has suggested - but as you say why add in another drug when the sensible option would be to get things under control with a small increase in Pred rather than a decrease.

Is Rheumy aware of CRP rising - or was test after you spoke to her? That's needs to be addressed.

[Cfmad298601 in reply to DorsetLady]

yes, the most recent test was after our phone call, but the clinic will see results too. I have clinic appt at end of Aug but she did ask for an update via MyChart at the end of July as to my pred level.

Suggestion during telecom also was that the blood tests could be done on a monthly basis moving forward….so not due until end July….

Do you think I should message them now about the CRP and onset symptoms, albeit mild ones?

I really don’t want to add more drugs in to the melee just yet…….unless I really need addit pain relief

[DorsetLady PMRGCAuk volunteer in reply to Cfmad298601]

As PMRpro says, one raised CRP reading shouldn't be taken out of context, so maybe request another in a week or so...to double check if a pattern is occurring. But, you do have symptoms, so both things should be considered.

[piglette]

In my opinion the suggested reduction of 2mg a month is totally OTT and is a recipe for problems. I think medics think that because you are on MTX you can just whizz down the taper route. If you are starting to have any aches and pains STOP reducing. My CRP is always increasing, it is currently 29, which is actually quite low for me. If I feel OK I don't worry too much.

[Cfmad298601 in reply to piglette]

my thoughts exactly. I have been tapering slowly and managing so far, albeit a couple of wobble moments with mild pain etc. I’m happier to just continue as I am, for now, just going by what my symptoms are trying to tell me….really don’t want to be continuously messing with different meds and varying dosages.

I’m only about 9-10 months in on this wacky ride 🙄 so taking things as they come.

But I’m becoming aware that they’re starting to push for pred reduction, or increase the mtx (but have I even been on it long enough to have an effect ?????)

A bit concerned that this amitriptyline is just another thing they chuck into the works too.

Some on here don’t think it’s even a viable consideration for PMR/GCA usage 🤷🏼‍♀️??

[Bcol]

I have a couple of box's of Amitryptiline in the cupboard but they are for the horrendous nerve pain I get when my lower back and Sciatica decide to get grumpy. Haven't actually used any yet but they wouldn't help my PMR.