Inflammation

So following a consultation and MRI there shows no sign of inflammation even though my stiffness/pain in getting up out of a chair, trying to get up stairs etc is still present. Seems I have a lot of spinal degeneration and referred to spinal clinic. He said there are no actual evidence of PMR... the only thing that made he suspect that is the fact that prednisolone worked so well... though pains would come back around 10-12mg. He now trying me on methotrexate which is not solving my issues either! Another consultation on Wednesday! Will they ever get to the bottom of this!

[PMRpro Ambassador]

Was it a plain MRI or a gadolinium enhanced one? Plain MRI won't show anything and if you have been on pred before the scan it is possible that there isn't enough inflammation to show up.

consultant360.com/exclusive...

Even that isn't 100% conclusive.

I do wish doctors would treat the patient not the test results - and that symptoms returned as you tapered below 10mg is pretty usual for some time in PMR. It also depends on how you tapered, especiall below 10mg.

[YuliK in reply to PMRpro]

Morning/lunchtime greetings PMRpro

How right you are. I hate it when my rheumatologist tells me that my bloods are not showing ‘this or that’..

I was told very recently that the nausea, tiredness and muscle pains which I suffering , are not connected to my prednisone reduction. 😜 Adrenal glands. 😱

Over two and a half years I’ve dropped from 60mg to 3mg. 👏

After much urging, I now have an appointment to do a Synacthen test early May.

She said that the nausea was probably reflux. I explained it is a different sort of nausea, as I have had reflux for years and I’m so careful what I eat.

I have all the symptoms of adrenal not functioning 100%. It can take up to 4 months until they kick in. 🙀

Below is explanation of the functioning of the adrenal glands.

patient.info/hormones/synac...

Have a lovely Easter everyone.

YuliK 😷

[Hidden in reply to PMRpro]

Thank you... The taper pattern was in 2mg steps from 20mg. I suggested a smaller step of 1mg but he was against this as it meant being on a long programme of steroids. He is now suggesting to keep reducing Pred... currently on 6mg and continue methotrexate. Currently 12.5mg. While the methotrexate has helped certain issues .. mainly elbow joint pain etc... my spine and shoulders are an issue so sitting for any period.. getting up from kneeling... going up stairs all cause me issues. The only thing that helps is a 20mg pred dosage!

[PMRpro Ambassador in reply to Hidden]

Having PMR means being on a long programme of steroids, there is no getting away from that fact, If a doctor chooses to make a diagnosis of PMR they have to face up to that. Half of patients have PMR for over 6 years - only 1 in 5 get off pred in a year, it is 1 in 3 by 2 years.

This paper presents a much more realistic approach to managing PMR:

rcpe.ac.uk/journal/issue/jo...

The taper is based on 2 years but they do say - though many doctors ignore it - that any taper must be adjusted for the individual patient, one size really doesn't fit all. 2mg at a time is probably fine down to 10mg for many patients - but not after 10mg, then the 10% of the current dose is the rule for a reduction step. How often did you drop by 2mg - that is also a significant factor? If you don't stay at a new dose for 3 weeks you really can't be sure it is still enough and when symptoms reappear you have no idea where it went wrong.

On the face of it, the fact you need 20mg to get relief MIGHT suggest it is something else. However - if you didn't stay at 20mg for at least 3-4 weeks and preferably 6 weeks to start with there may still be a lot of built up inflammation through your system and being added to because the daily dose isn't even enough to deal with the new batch of inflammatory substances shed each day in the early morning never mind clear out the existing stuff.

Methotrexate rarely replaces pred in PMR - it may make reductions smoother, it may allow someone to get to a lower dose, especially if there is a bit of inflammatory arthritis in with the PMR, How much lower depends on the patient - for some it is only a couple of mg, for others it may be quite a bit more. But there are no guarantees. It doesn't even work for everyone in RA where it has been the gold standard for many years. And it takes 6 months to find that out.

[Hidden in reply to PMRpro]

Thank you so much for this info. It was 2mg reduction at each step and a month on each dose. Will try and see where his thoughts are on my call with him on Wednesday.

[PMRpro Ambassador in reply to Hidden]

At what point did the symptoms start to emerge again? Can you remember? Once you overshoot and don't stop reducing straight away, you can end up back at the start and it is often more difficult to get things under control again if that has happened,

[Hidden in reply to PMRpro]

Hi... typically once I drop below 15mg small signs start to reappear. But the consultant has said he feels Pred is just masking the problem and the underlying issue is still there waiting to come back. So he wants me to taper down off of Pred and move up on methotrexate.. from 10 to 12.5 and then to 15mg

[PMRpro Ambassador in reply to Hidden]

Er, well, that is exactly what taking pred for PMR is about. It doesn't cure anything but manages the inflammation created daily by an ongoing underlying autoimmune disorder to allow a reasonable quality of life in the meantime until that burns out. Really not sure what he thinks is different about MTX, it also doesn't cure anything, just suppresses the immune system but in a different way. When it works for a disease that is fine - the trouble is, it doesn't by any means always work in PMR. If it did. they would use it instead of pred. They don't.

[Hidden in reply to PMRpro]

Thank you... will use the above info in my discussions with him on Wednesday. The only thing that has really made me pain free is Pred at 20mg.

[piglette in reply to Hidden]

In that case you should be at the dose you found things were comfortable and say just reduce to 1mg to see if you are OK at that dose.

[Hidden in reply to piglette]

I guess a question is there any serious conditions that may occur if I have to stay on 20mg for a period of say 3 or 4 months??

[piglette in reply to Hidden]

You should not have to stay on that sort of level for so long. Did you try going to 19mg for a month and so on, so going slower and using the very slow methods

[PMRpro Ambassador in reply to Hidden]

Many patients with GCA are at well above that for longer than that - they often start at 80mg and reduce 10mg per month, Being above 20 for 6 months is not unusual. There are ways of managing the adverse effects of pred - weigh tgain is the most likely and cutting carbs drastically does help there.

[piglette in reply to Hidden]

Steroids have a lot of side effects around 82, so you are always open to some of them. Of course the lower the dose the better. drugs.com/sfx/prednisone-si...

[piglette]

You beat me, I thought I had done well on 14!