Reducing pred - a query regarding returning pain.

[MelHammond]

Hi, I reduced from 20mg to 15mg early December w ithout too much difficulty. However i reduced another 1mg last Friday but have been experiencing neck and shoulder pain which has got steadily worse. Is this due to steroid reduction or have I reduced too far and need to go back to 15mg? I like many others am keen to reduce as I have had some side effects as a result of taking them, namely high blood pressure, gastritis and prediabetes, none of which I had when tested just prior to being diagnosed with PMR. All advice will be appreciated.

[PMRpro Ambassador]

It may be that you have reduced too far for now and the way to find out is go back and see if it helps - don't leave it too long though or there may be too much inflammation built up to clear out.

Is it the same sort of pain as the PMR pain? I have other back problems though and found that at higher doses they were much better but returned as I reduced. That is also a possibility. If so, if you can get them treated separately you may find the PMR can be managed by a lower oral dose.

Pre-diabetes can be helped by cutting your carbs drastically - and many people find that also helps gastritis. If you have gastric problems you should also have been offered either ranitidine (older and fewer side effects) or omeprazole (supposedly more effective but the difference is small and it can cause unpleasant side effects in some people). It also helps to take the tablets with yoghurt or in the middle of a meal.

High BP should be managed like any other raised BP - it isn't the end of the world to take one more tablet!

[MelHammond in reply to PMRpro]

Thank you for your reply, the neck and shoulder pain is the same as I experienced when I suffered PMR at first.I initially believed it to be due to the fact someone had altered my workchair which sparked off my RSI. It was only when the pain spread to my arms and I could hardly move that it became apparent it was another issue - PMR. I have been taking omeprozol for the last 5 weeks and have seen the diabetic nurse for some really useful advice. The doctor is monitoring my BP which has reduced since my first steroid reduction. I suppose that I need to be patient and accept that I am not in control of my PMR although it is disappointing.

[PMRpro Ambassador in reply to MelHammond]

No - there is next to nothing we can control in PMR unfortunately - other than pacing and reducing really slowly. I should have said - if the pain is getting worse it is more likely to be inflammation building up again - steroid withdrawal pain starts immediately you drop and then slowly gets better. That is about the only way you can tell the difference.

It took me a long time to get below 10mg, about 4 years I think, after allowing a flare at the beginning of pred. The rheumy's fault, he wouldn't have it was PMR and wanted me to stop the pred - 6 hours after missing the first 5mg tablet I was in the same amount of pain I had been before. I never managed to get it properly under control and reduce as far again for a long time.

I had a flare earlier this year, went back to 15, got back to 10mg and the other back problems reappeared - having them treatred separately by the GP then immediately let me get to 8mg, another session of needling a few weeks later and I've got down to 7mg. So it does make a big difference.

[nancyannehanson]

I begin prednisone in October 2016 began 45mg reduced to 30mg. Severe reaction and had an unnecessary cardiac cath. I have now reduced to 26mg....pain level 7-8 back on tramadol daily. Pain has since affected lower back, legs, knees wrist and shoulders.. How do I know if it's prednisone or PMR I am in high level pain again.

[PMRpro Ambassador in reply to nancyannehanson]

Does the tramadol help the pain? If it does then I would question whether it is really due to PMR. PMR pain responds to pred because it is due to inflammation, other pain killers rarely help at all. There are other forms of arthritis that can present with polymyalgia and when patients struggle to reduce the dose that should be considered.

Another common cause of back and leg pain can be myofascial pain syndrome which is often found alongside PMR and also responds to higher doses of oral pred, returning as you reduce the dose. It leads to irritation of nerves close to the characteristic trigger points in the shoulders, about rib level and lower back which can cause referred pain in the arms and legs, as far down as wrists sometimes.

[Whittlesey in reply to PMRpro]

Hi PMRPro, I, too have issues with my back ( and meralgia paresthetica, left thigh). I am now getting these back issues attended to.

Liked your answer, here. Have reduced pred down to 2 MG's a day for GCA ( 1 flare past few months, upped to 8, then reduced to 2).

In your answer, you referred to other types of arthritis, that might set in.

Can you tell me what they are? I'm dealing w tremendous back pain ( I don't up the pred for this, as you have noted, above). If you can give me a sense of the other arthritises -- can help to know what I'm dealing with.

Many thanks.

Hope you're coming along with this, it isn't easy.

All my best,

[PMRpro Ambassador in reply to Whittlesey]

Is the back pain there all the time? Does anything improve it?

But several of the inflammatory arthritides may appear first as "just" PMR without any significant joint inflammation - rheumatoid arthritis and spondyloarthopathies spring to mind. But I get tremendous back pain just with MPS if I ignore it!

[Whittlesey in reply to PMRpro]

Hi PMRPro, it happens after walking -- not quite a block. I push through, but later the back pain is intense.

Pain and muscle spasms. Sometimes it feels like a metal brace has been placed on my back -- every movement is painful, trying, trying to push against it.

Was trying flexoril ( from phsyiatrist) for awhile) but nerele

[Whittlesey in reply to Whittlesey]

Sorry, accidentally chose - submit reply) --- nearly passed out w flexoril --back to baclophen.

Now have home phys therapist, one more week. Gentle stretching, alignment exercises help.

MRI shows spinal stenosis, thickening of the ligaments, disc Probl. Cortisone didn't t go so well.

Left thigh muscle kept collapsing.physiatrist thinks muscles may be weakened, from a few years of pred.?? I have kept up most activities, in spite of ---

Back gets so bad , sometimes is difficult, when it is bad.

Seeing reheum next month, and physiatrist in 3 wks. ---

Trying to get this-- better.

Thanks PMRPro-- have been recommending by his site to my Dr.s -- as a better method of reducing pred and to better understand this rare disease.

To health

and walking,

best,

Whittlesey

[PMRpro Ambassador in reply to Whittlesey]

Could well be muscular - hope someone recognises that.

By the way - you can edit a post to go back when you submit by mistake. The right hand box with the downward pointing arrow has an edit option.

[mariandrakeford52]

Good morning like you I reduced down from 20mg prednisilone to 10mg with little effect since September. This week on advice from GP reduced from 10mg to 8mg within 24 hours pain is back in shoulder back and hip. Don't know wether to go back to 10 or try 9mg dissapointed 🙁

[PMRpro Ambassador in reply to mariandrakeford52]

Back to 10mg, let it settle and THEN try a more realistic drop of not more than 1mg. That is as likely to be steroid withdrawal pain as anything else. No reduction during the taper should be more than 10% of the current dose - that was 20%. Your GP was setting you up to fail - it is really unfair of them.

This approach works:

healthunlocked.com/pmrgcauk...

and is being used in a clinical study in the north of England.

[mariandrakeford52 in reply to PMRpro]

Thank you so much for your reply yes I have put it back up to 10mg today. Feel frustrated with GP !!

[Whittlesey in reply to PMRpro]

So agreed on the GP. I have explained this, many times to GP's and rheums.

I get the sense --- it is rare -- not many accounts of this -- and they can't quite perceive -- what it is like.

They need to understand.

[Marcy47]

Getting Pred dose down below 10mg is a big problem for me, I have been trying since Dec 2015 and have now got down to 9.5 just before Xmas. I stayed there for 2 weeks and am now trying DSNS reduction to 9mg. Fingers crossed!

[NZShez]

Just be careful with the Omeprozol. It can deplete the calcium from your bones, just as Prednisone does. I have been on Prednisone for just over a year; and Omeprozol a lot longer. I stopped the Omeprozol when I was diagnosed with Osteopenia. Omeprozol can be effective for an extended time if taken for only 3 months