Puzzled. Symptoms worse after starting treatment. - PMRGCAuk

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Puzzled. Symptoms worse after starting treatment.

Donaloge profile image
12 Replies

On the balance of probabilities I have been diagnosed with atypical, mild PMR.

I have just finished two weeks of 15mg daily of prendnisolone. The mild symptoms I had before, night-time aches in one leg and shoulder, became more pronounced during this time. In addition I have had a severe back ache after being sedentary for a time, which I did not have before.

Last night I took two paracetamol at bedtime in the hope that it would reduce the back  ache and had no symptoms at all during  the night.

I do not understand why starting on steroids would make me feel worse. Nor how paracetamol could seemingly help so much.

If anyone has had a similar experience or can offer any other insight I should be pleased to hear.

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Donaloge profile image
Donaloge
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PMRpro profile image
PMRproAmbassador

What were the grounds for making a diagnosis of "atypical mild PMR"? Because what you have described is so atypical that it probably wouldn't get a look in!

Typically, PMR rarely responds to ordinary painkillers - back ache due to tight muscles often does and back ache due to tight muscles will refer into the leg if the sciatic nerve is being trapped or even just irritated. And the beneficial response to pred is part of the diagnosis - making things worse doesn't come into the criteria!

Donaloge profile image
Donaloge in reply to PMRpro

Thanks for your response.

I was diagnosed by two rheumatologists based on

1. The locations and nature of my aches and stiffness,

2. A PET scan.

3. My response to a shot of Depo-Medrone.

The back ache is very new and may not be related to the PMR. But I'm suspicious because it came on after two weeks of steroids.

PMRpro profile image
PMRproAmbassador in reply to Donaloge

OK - if you had a PET scan that makes it more possible. Wonder how many with vague aches would get a better diagnosis with one!!! Now THAT would be a turn-up for the books.

Where is the backache?

Donaloge profile image
Donaloge in reply to PMRpro

The backache is in my lower back. It happens after I've been sitting a while. When I get up I find myself waling with a stoop for a few minutes and feeling very uncomfortable. But it passes pretty quickly.

PMRpro profile image
PMRproAmbassador in reply to Donaloge

Sounds like my low back add-on to PMR. If so, more targeted treatment than oral pred would be needed I think. In my case it is sacroiliac problems and the best treatment I have had in the past is local steroid injections into soft tissue - I'm on anticoagulant therapy so the pain clinic is iffy about them, my rheumy will. It is inflammation of the soft-tissue attachments - which is what PMR is - and both that inflammation needs to be tackled but also the muscle tightness/spasm that keeps it going. Personally I find massage techniques and manual mobilisation of spinal muscles - bit ouchy at the time but the result is worth it. Had a session yesterday!

Donaloge profile image
Donaloge in reply to PMRpro

Thanks for your advice. I'll wait and see how it develops. I have a telephone consultation in December but I may try to bring that forward if it seems necessary.

piglette profile image
piglette

As PMRPro says it does not sound like PMR apart from the PET scan saying it is. Also the fact that paracetamol worked so well while normally painkillers have virtually no effect on PMR. Do you feel better after you have not taken the steroids for a while? I was wondering if you have some sort of reaction to the drug??

Donaloge profile image
Donaloge in reply to piglette

I feel worse since I started taking the Prendisalone two weeks ago My symptoms were mild before starting on the steroid but have become a bit more pronounced since.

Today I have tapered from 15mg to 12.5mg as instructed.

But as I wrote before, the Depo-Medrone shot that I had when I first saw the rheumatologist did work. In fact in the seven months since then my symptoms have never been nearly as bad as they were before the shot.

So I remain puzzled.

PMRpro profile image
PMRproAmbassador in reply to Donaloge

What has got worse? Is it joint pain? That is an adverse effect of pred - my daughter suffers with it when she is on pred. Is it muscle aches and cramps? That can happen with pred if you are low on potassium or magnesium. You should ask your doctors.

Donaloge profile image
Donaloge in reply to PMRpro

The original symptoms, aches in right shoulder and left leg, have worsened since I started on steroids. In addition I now have a backache for a while after sitting.  It feels like a general aching in those areas.

PMRpro profile image
PMRproAmbassador in reply to Donaloge

It could be the PM progressing - and the dose isn't really enough. Though it sounds more like myofascial pain syndrome, which is found alongside PMR. What does the doctor suggest?

Donaloge profile image
Donaloge in reply to PMRpro

I have not spoken to the doctor yet.

There was no aching in my leg or shoulder last night. And the backache does not seem as bad as it was.

I'll wait a while and see how things develop.

Thanks for your advice.

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