leg pain

[Rosiecavapoo]

Hello everyone

I was diagnosed with PMR in July. Started on 15mg of pred it helped but I was still in a lot of pain in the evening and mornings. Came on here for advice and was told I probably needed to increase the pred. GP was great, but it wasn’t until I hit 30mg that I was pain free.

Had a telephone conversation with Rheumatologist and she was the type that wants you off pred asap. She gave me a tapering program. 30 mg to 25mg to 20mg every 3 weeks then 2.5mg reduce from then on.

I’m on 25 mg now due to reduce to 20 mg in a few days.

This is why I need advice. I’ve gone from pain free to some neck and shoulder aches but it’s bearable. But, my legs and hips are extremely painful the left side is much more painful than the right. It’s there all day and night. Wakes me at night and keeps me awake.

Do you think I need to go back up to 30mg? I’m aware this is a heavy dose of pred. And I’ve already been on that dose for 4/5 weeks previously.

Many thanks

[DorsetLady PMRGCAuk volunteer]

30mg is a high dose for PMR, however that’s not ruling it out , but is everyone sure that’s all that is going on?

If the initial dose of 30mg gave you total relief when did the pain return? Immediately at 25mg, or has it built up over the couple of weeks?

Think you need to discuss with Rheumy [although guessing what she’ll say] maybe GP is better option.

Have you tried ordinary painkillers to see if it’s something other than PMR?

[Rosiecavapoo in reply to DorsetLady]

Thank you DL.

The pain returned 2 weeks after I reduced to 25mg,

I am on pretty hefty painkillers from previous back pain before PMR. I take 2 paracetamol 3 times a day too. But that doesn’t give me any relief from this leg pain.

The Rheumy talked about we need to look at other things incase it isn’t PMR. She wants me to have a chest X-ray and I’m not speaking to her again until January.

[DorsetLady PMRGCAuk volunteer in reply to Rosiecavapoo]

As painkillers aren’t helping then that really answers that…. And the return of symptoms 2 weeks after reducing is usually an obvious answer as well…dose too low.

Maybe try 30mg for a few days [5-7] and then down 27.5mg rather than 25mg… and see if that makes any difference.

But you do need to feed it into GP - just to keep him informed. And maybe a hip x-ray would be more use as well [osteoarthrits etc] … GP should be able to do that.

[Rosiecavapoo]

Sorry just want to add it is definitely muscle pain I’m experiencing

[DorsetLady PMRGCAuk volunteer in reply to Rosiecavapoo]

Maybe bursitis ?

webmd.com/pain-management/t...

[Charlie1boy]

Hi,

I am one those that was increased to 30mg from 20mg (at diagnosis) because the initial dose did not clear the pre diagnosis built up inflammation.

My GP kept me at 30mg for three weeks, by which time I was as good as pain free. Once pain free the tapering was easier. If it were me, I would be reducing more slowly at no more than 10% of your current dose, and never reduce if you still have symptoms of pmr.

If there is something else going on, then that would be a difficult issue.

Good luck.

[Rosiecavapoo in reply to Charlie1boy]

Thank you so much Charlie and DL. I shall contact my lovely GP and I know she will agree

[PMRpro Ambassador]

My immediate query on the basis of what you have said is "Is this really "just" PMR?" So her desire to look for something else is absolutely correct - and she can't do that while you are on so much pred. That doesn't mean that she is the type that wants you off pred asap - she may be, but she can't do a lot at present while you are on 30mg pred. It may be muscular pain - but that doesn't mean it isn't an arthritis, a few can present looking just like PMR and without any other distinguishing features at first.

Where is the leg and hip pain and what is it like? What makes it worse? You say you were already on hefty painkillers for pain before PMR - where was that pain?

Myofascial pain syndrome/greater trochanteric pain syndrome can cause excruciating back and leg pain and CAN be part of PMR though it can exist in its own right. Claire Owen in Australia considers it to be part of the pathology of PMR and it can be a pig to manage. But High dose oral pred isn't a good way - more targeted approaches are better.

[Rosiecavapoo in reply to PMRpro]

Thank you PMRPro

I agree that we should be considering other disorders but that’s not going to happen anytime soon as I don’t see her again until January.

I do think I have had classic PMR symptoms. But the hefty dose of pred I need does cast a shadow on that diagnosis. The hip pain is an ache on the outer side of the hip. The pain is in the thigh and calf muscles and it’s a burning/cramp like pain, I’m taking magnesium supplements. Getting up from a sitting position is the most painful. Going up stairs and walking and standing.

The hefty painkillers are for degenerative disk disease and damaged nerves in lower back. Also diagnosed with ankylosing spondylitis 15 years ago.

Something that has just occurred to me is the Rhuemmy told me to stop taking Naproxen because of the effect that it and pred could have on my stomach. The leg pain did begin after I stopped the Naproxen.

[DorsetLady PMRGCAuk volunteer in reply to Rosiecavapoo]

Not usually recommend to take naproxen alongside Pred as it’s NSAID. -but a short trial may give you an answer.

[PMRpro Ambassador in reply to Rosiecavapoo]

Yes - but think about it , it will take until then to get to a low dose, it is almost November now.

I have a similar problem - 800mg of ibuprofen has me pretty well pain-free from my low back problem. The Pain Clinic had a fit - bad for the heart and kidneys, don't take them daily long term. But paracetamol is useless, the alternative pain relief she likes gave me awful headaches and at a dose that doesn't doesn't achieve a lot. Result - low back agony if I stand/move ... Sitting is fine!

The thigh pain is almost certainly trochanteric bursitis. And the rest is probably sciatic pain due to spasmed muscles/the ankylosing spondylitis. The naproxen works for that - so why did she stop it without using something else for the AS. It isn't good long term but you can't just ditch it for an existing diagnosis.

Have you never been offered an anti-TNF biologic - which I thought was standard practice in AS nowadays? I had a friend on the forum years ago - her AS mimicked PMR and GCA - even Prof Dasgupta thought she had had GCA but it was the AS affecting blood flow through the neck and causing necrotic patches on her tongue which he thought was due to GCA, She wrote to Prof Sarah Mackie in Leeds and travelled from Kent to Leeds! She happened to mention the pain woke her about 2-3am - which is earlier than PMR pain but typical of AS, and Sarah had a light bulb moment, it was confirmed by MRI and Naproxen was used short term while they set up the biologic - she was astounded she had the choice of 5! That was some years ago so I'm really surprised that hasn't come up.

I wouldn't be surprised if it is ALL AS if that was a confirmed diagnosis - my friend in Kent was quite typical of PMR and she had horrendous leg problems that no-one, including Sarah Mackie, could understand. She was still working as a nursing SIster - and really struggling.

[Rosiecavapoo in reply to PMRpro]

Wow! Thank you PMRPro. You have certainly given me lots to think about.

I have had a few MRI’s over the years that showed no change in my AS.

Sounds like it’s going to be a long road to get to the bottom of this.

I think for the next few days I’m going to take the Naproxen and see if there is any change. Then I will speak to my GP and see what she thinks.

Thanks again

[PMRpro Ambassador in reply to Rosiecavapoo]

It may not be - but it happens so has to be considered.

[Rosiecavapoo in reply to PMRpro]

Just want to update you. I took 500mg Naproxen just before mid day. The leg pain has completely gone!!!!

What does it mean???

[PMRpro Ambassador in reply to Rosiecavapoo]

That it is very unlikely that THAT is due to PMR. Other bits could be - but anything that improves with the Naproxen is unlikely to be due to PMR. And since you already have the AS diagnosis - it seems logical to me to investigate a change in that first. There are 7 different biologics that are used and also the oral JAK inhibitors

mayoclinic.org/diseases-con...

It merits a discussion - it is known AS and PMR can present quite similarly.

[Rosiecavapoo in reply to PMRpro]

Thank you so much

[Bcol in reply to Rosiecavapoo]

Hi I used to take Naproxen for my OA when it was bad and it worked well for me, obviously not an option at the moment. You say you are taking Paracetamol for the pain, I'm just wondering that as you have lost the Naproxen it's worth you try Co-Codamol 30/500 (Prescription only) which works well for me. It's also fine with Pred but be aware not everyone gets on with it.

[Rosiecavapoo in reply to Bcol]

Thanks Bcol

That could be an option. I didn’t get on well with Co-Codamol in the past but willing to try it again.

[Pixix]

sounds like bursitis to me as I’m suffering badly atm, & waiting for another steroid injection. But you don’t need to see a specialist if that’s it, I don’t think. My GP diagnosed the bursitis easily & gave me a steroid injection that worked well for four months. Just a thought!

[Rosiecavapoo in reply to Pixix]

Thank you Pixix

I think you are absolutely right, 100

%.

I took a Naproxen tablet after yesterday’s posts and within a few hours the leg pain was completely gone! So that’s proved that. And because I can’t continue to take Naproxen I will see the GP and take your advice and get treatment for Bursitis.

Thank you so much.

This forum is amazing!

[Pixix in reply to Rosiecavapoo]

I can’t take naproxen, ibuprofen or any of that type of drug. I Might not be right. I’m not a doctor, just a patient! Good luck! S x

[PMRpro Ambassador in reply to Rosiecavapoo]

Remember it would also work for AS ...