Not sure what to do now

[NickWarwick]

Hi all. Not posted for age’s but do keep an eye on others.

Three years in to this and was down to 1.5 mg per day and feeling ok.

Started a phased drop to 1 mg and have fallen off the edge of a cliff.

Started with pains in my hip which got so bad that I was struggling to walk upstairs. Also very light headed and panicky at intervals.

Gave up on the reduction and upped the daily pred to 6 last Friday. Hip pain marginally better but feels like I have done some kind of permanent damage.

Couldn’t sleep last night with hip and now pain in my collar bone (a definite first). Woke this morning feeling worse.

So I am wondering how long the increase in pred strategy should go on for. I was assuming a week would work.

Can’t go back to high doses. It’s taken too much effort to get to 1.5. And I thought I was heading out of this s### show.

Depressing doesn’t really come close

59 years old and I have no option but to keep working

Nick

[PMRpro Ambassador]

How long had you been on 1.5mg? Did you do anything different physically? Have you spoken to a doctor?

What you describe could be trochanteric bursitis - which CAN be part of PMR but can also occur in its own right. It doesn't respond particularly well to oral pred, injections are much better.

I'm afraid sudden increases in disease activity so happen - I've had a few. And usually when you think you were doing well too!

[NickWarwick in reply to PMRpro]

At 1.5 for a couple of months and feeling ok. Always stick at one level for that long and then a slow taper.

Nothing has changed in terms of physical activity.

I have never seen my GP. I have been self medicating based on what I’ve learned on this forum and elsewhere. I do wonder if I should be getting blood tests done at intervals but as I say I have been coping ok until now. No golf or strenuous exercise has been annoying but I was shooting at being out of this by now. Or maybe this time next year.

I just need to get back to 1,5 and feeling vaguely human as I run my own business and can’t afford to slow down.

Will Google troch….bursitis. Thanks. Nick

[SnazzyD]

Is it just one hip?

What are your symptoms exactly?

[NickWarwick in reply to SnazzyD]

Yes. Right hip only.

I have only ever had problems with right hip and knee even when this all started.

After beginning the taper I started to get hip pain’s which got progressively worse. Eventually was v painful climbing stairs (but absolutely fine going down)

Feels like a bruising outside of the actual joint which also runs down to the outer muscle top of my thigh.

Painful to lie on right side in bed ie with direct pressure on the area

Painful after sitting for any length of and getting in / out of car

Stairs seem to be ok now but a fairly constant bruised feeling I would say

[PMRpro Ambassador in reply to NickWarwick]

Yup - typical of trochanteric bursitis

my.clevelandclinic.org/heal...

yourphysio.org.uk/condition...

You know that bit about a picture painting a thousand words??? No-one writing about TB seems to know it!!! This is the best of a bad lot

ultrasound-guided-injection...

The best treatment I have had other than steroid injections from a very gifted rheumy is extracorporeal shock wave therapy.

[SnazzyD in reply to NickWarwick]

One sidedness and your description suggests something’s up which is why Pred helped but not hugely. PMRPro has replied better so I’ll stop here.

[NickWarwick in reply to SnazzyD]

Ok thanks all.

Still not clear whether PMR has caused the hip problem (post pred reduction) or whether the hip problem has led to a general feeling of being not well which has spun me out of control.

Will stay on 6mg for a couple more days and then drop to 1.5.

Thanks for the exercises. That has to be the main priority for now

[DorsetLady PMRGCAuk volunteer]

Think it a combination of things …. and not necessarily PMR per se . Pains as stated -trochanteric bursitis, plenty of exercises online.

Light headed and panicky most likely to be adrenals struggling- have a look at this -

healthunlocked.com/pmrgcauk...

If it’s not PMR then the increase in Pred is not really required - you can stay a few more days [no longer than 14 in all though] but then drop back down to say 1.5mg or better 2mg….stay there a good while [and not just a month] and give your adrenals a chance to catch up….

[SnazzyD in reply to DorsetLady]

I agree with DL in that the feeling panicky and lightheaded likely being adrenal function. I certainly identify with that. You might be coping but then the added stress on the body of worry, niggling pain, work etc can require a corresponding increase in cortisol production. For no rhyme or reason, sometimes the glands just don’t fire up properly. This is the tricky bit that they don’t ‘advertise’ at the start of this journey!

[Gossiplady]

Hi NickWarwick! So sorry to hear you are feeling so down. You will get lots of great advice here on the forum, but I found that I can only reduce 0.25mgs at this low dose. I cannot believe that my life is controlled by a quarter pill, but it is. I have tried to reduce down to 0.75mgs and even tried 0.5mgs, but no, my body shouted at me! So I am continuing on 1 mg for the time being, after all ,at this low dose, side effects are minimal. Keep strong my friend, we are all with you.

[NickWarwick in reply to Gossiplady]

Thanks for your kind reply.

If i can get back to some kind of normality i am sticking at 1.5 or maybe 2 for a stretch.

Back walking 18 holes of golf next spring / summer (so 4 years after i last did) was and remains my target.

Best wishes

Nick

[DorsetLady PMRGCAuk volunteer in reply to NickWarwick]

You will get back to normal…. And very often the last few mgs are the hardest for a couple of reasons -

One being adrenals stuttering as already discussed, and

Two, at such low doses if your PMR is alive and kicking [which many don’t believe it is - patients and doctors ] there is very little wriggle room between enough Pred to give good QOL, just enough, and definitely not enough.

[PMRfacebook]

Hi I got PMR at 56 and had to continue working so can emphasise my journey lasted 4 years - 3 on pred and 1 recovering from damage done to body. It took me a good year to get from 2 to 0mg and, like you, I'd go up and down on the taper and feel panicky - as much to do with feeling a failure/never get rid of pmr as likely physical changes re adrenals. You will get there, don't give up hope and be as kind to yourself as you can be on your journey

[Bearscare123]

Nick,

It is so discouraging to taper down and think you will be free of Prednisone and back to normal and then start having bilateral pain again. For me, I was down to 5mg and then shoulder pains came back (Like 2 x 4’s hitting you in the front of your shoulders) I am now back up to 10 mg with the shoulders still hurting a lot! Scheduled for cataract surgery so don’t want to increase dosage. It is like a roller coaster ride. “Here we go again!” You are not alone and it’s comforting to know other people are also going through this.

[MiniSpec]

I got the same pains as you when I dropped to 2mgs a couple of years ago. First it was my right hip, then both hips. I found the only way to overcome the pain at night was to sleep in the recovery position, so that my weight wasn't directly on the point of the hip bone. I still have to sleep like that, as it's the only way I can manage a full night's sleep.

In my case I had to go up to 4mgs to overcome the hip pain, and I stayed at that for a couple of years, but I saw a rheumie in May (first time I've seen one for 13 years!) and she told me to start reducing. I'm now on 2.5mgs and the hip pain has been slowly coming back, so I'm dreading dropping any further.

It may be the case that at 1.5mgs you had reached your limit, and for any kind of QOL you need to stick at that level. After all, it's not a race to zero, but a case of finding the lowest level of Pred that your body can tolerate before the PMR overcomes you once more.

Best of luck!

[NickWarwick in reply to MiniSpec]

Thanks for your input.

Upping pred has cleared my lightheadedness which means I can get on with work hopefully.

I can live with hip pain which is very one sided and I suspect is a separate issue . Plan on seeing a physio to address that in isolation

Having to sleep on my ‘wrong’ side is odd though.

Hey ho….onward

[DorsetLady PMRGCAuk volunteer in reply to NickWarwick]

What dose have you upped to - and what is plan going forward?

[NickWarwick in reply to DorsetLady]

6mg for a week. Plan on dropping to 2mg tomorrow and see what happens

[DorsetLady PMRGCAuk volunteer in reply to NickWarwick]

I’d be inclined to stay at 6mg for 10 days… then to 2.5mg or 3mg for a month before you consider restarting taper…..

[NickWarwick in reply to DorsetLady]

I've run out of 5mg tablets but i guess i can overdose on 1mgs for a while.

Thanks DL

Nick

[DorsetLady PMRGCAuk volunteer in reply to NickWarwick]

If you have enough 1mgs then I’d stay at 6mg a bit longer… think of it as insurance 😊

[Karenjaninaz in reply to NickWarwick]

Nick what helped me side sleep was using two small travel pillows; I place them side by side and place my hip in the "valley" thus supporting the hip without pressure on the sore spot.

[PMRpro Ambassador in reply to MiniSpec]

Ask if they will consider a local steroid injection for the hip bursitis. Emphasise you are unable to sleep because of it, Oral pred WILL help but it is far more efficient and you need less overall with an injection.

This reply is aimed at MiniSpec but also applies for you Nick. Hip pain like that is trochanteric bursitis, it is common alongside PMR and can be part of the PMR but can also occur independently.

[NickWarwick in reply to PMRpro]

OK thanks

[HeronNS]

If your hip pain turns out to be bursitis you can do exercises that may help very quickly. I had hip pain off and on for many years, long before PMR, thought it was arthritis but no OA in hips. Eventually found an exercise called the clamshell which I dare to say has cured me as no trouble since then, many months ago. There are other exercises here but I only did the clamshell so can't attest to the others.

Two different pages:

myhealth.alberta.ca/Health/...

myhealth.alberta.ca/Health/...