Was doing so well now back/hip problem

[9lives]

Hi everyone I'm really frustrated as had been doing really well since the new year.

I was diagnosed a year ago this week with PMR.and started on 20mg.

since November I have been reducing very slowly and following the guidelines on this site as in the past had a couple of flares./ bad cramps.

Everything was fine until I got down to 7.5 mg. I was doing one day 8 then one day 7, for about two weeks then rest of month on lower dose. This is how I have been reducing each month and it was working so well. It meant I didn't have to fiddle with cutting pills in half.!!

I was at 11.5mg in November, so don't think I've gone too fast.

I did start back at my yoga class two weeks ago but was very gentle with my self.

About 6 days later my right hip started to hurt when walking. I saw the Dr a week later and he suggested paracetamol but if that didn't work after a week I was to increase the steroids to 10mg. Which I have just done on Monday. So far not much improvement.

The Dr said he thinks it's my lower back either from the PMR or something else which is causing this.

I have had this problem in the past but it would usually pass in a couple of days

Just wondering if anyone else has experienced this x

Thank you for your time reading my post.

Carole

[piglette]

Has your doctor suggested an xray? It is probably not the PMR if it is just one hip. Does the paracetamol work?

[9lives in reply to piglette]

Hi piglets

Thank you for your reply.

No the paracetamol did not work so upped the steroids, and see what happens. If not, back to Dr. Yes I think X-ray would be good idea.

Take care x

[piglette in reply to 9lives]

I must admit I have never got paracetamol to work for anything. I need to opt for something stronger.

[PMRpro Ambassador in reply to piglette]

Me neither - but even "something stronger" has never done a lot for PMR either!

[PMRpro Ambassador]

I have myofascial pain syndrome which can cause low back and upper leg problems - it is often found alongside PMR, being caused by the same inflammatory substances that cause PMR symptoms. In PMR they are systemic, all through the body, but in MPS they are concentrated in trigger points of hard inflamed muscle fibres in the large muscles in shoulders, about rib level and in the low back where the baby's dimples are.

The other, and from what you say more likely, thing is trochanteric bursitis. Bursitis is also part of PMR but not everyone gets it at the beginning. Rest and icing may help but by far the best treatment is local steroid injections - not increasing the oral dose which doesn't reach the bursa as well.

arthritis-health.com/types/...

[9lives in reply to PMRpro]

Hi PMRpro

Thank you for your reply.

I think you are right about myofacial as I've had this problem before but in my right side of ribs. And you kindly replied to my post then. I had numerous tests done at the time, which I paid privately for, luckily nothing untoward But no answers.

It happened two or three times but each time it seem to be less severe. But not had it since.

But my lower back feel very tight, like a knot, as you describe, so could be this is causing the hip problem.

I did ask the Dr if it was bursitis but he carried out some tests and ruled this out.

I will make appointment to see Dr again next week and put some pressure on him, just like my hip ha ha xx

Thank you again for you reply xx

[PMRpro Ambassador in reply to 9lives]

What tests for bursitis? What is the pain like?

If you have low back problems with myofascial pain syndrome it can irritate the nerves running nearby and cause referred pain in the upper leg, even down to the knee or lower. A physio might help if they know what they are doing.

[9lives in reply to PMRpro]

He got me to do various leg movements and then felt with slight pressure around area. He said it would be painful if it was bursitis ,which it wasn't.

Today though the pain seems to be lifting and I have more movement, so hopefully this will continue , the thing is , is it because I have increased the steroids or just coincidental.

Oh the joys of PMR. Thank you for your valuable input

I hope you are. Doing ok xx

[PMRpro Ambassador in reply to 9lives]

Slight pressure? Nothing slight about the pressure our doctors exert to diagnose bursitis! And to be honest - it may be painful walking, especially going up stairs, but may not have reached where they can examine. I could certainly move my leg without pain when lying - it was when they prodded fairly firmly over the tuberosity I squealed!

Oh well - if it is better that is the main thing

[9lives in reply to PMRpro]

Aww that sounds painful, mine is painful whenever I move it, beit lying Down or walking and stairs were pretty difficult, but when Dr put pressure on it , it did not hurt. I felt a fraud!! But as I said today is much better so fingers crossed. Do you still suffer from bursitis, does it come and go?

It just seems so random sometimes.

Someone wrote on here a while back describing PMR as a game of snakes and ladders, I think that's a pretty good analogy xxxx

[PMRpro Ambassador in reply to 9lives]

Mine comes and goes - occasionally it will be just a day or two, if it is more and increasingly painful my GP will provide a steroid shot pretty much on demand. She trained in rheumatology before becoming a GP which is very useful - I would probably change GP since we now have one in this village with spaces and she is just as lovely but no rheumatology knowledge.

[9lives in reply to PMRpro]

Yes we need to hang on to the good experienced Dr. That's for sure. Enjoy the sunshine weekend xx

[PMRpro Ambassador in reply to 9lives]

It is generally more sunshiny here - I live in northern Italy...

[9lives in reply to PMRpro]

Aww lucky you. For some reason I thought you in 🇬🇧 U.K. Xx

[lyndamcw]

Maybe a tendonitis as a side effect of steroids?

[9lives in reply to lyndamcw]

Yes that's a good point xx

[Doralouise77]

I certainly empathize....after getting down to 6.5 of Pred and no PMR/GCA symptoms, I would be feeling fairly well if not for severe hip and back pain....from???.....going for X-rays....but to not even be able to walk is so depressing....and scary....

Cheers

[9lives in reply to Doralouise77]

Aww poor you sounds dreadful, and not knowing makes it worse. I do hope you get some answers from X-rays. Xx

My symptoms have improved slightly today so hopefully this will continue xx

[Doralouise77 in reply to 9lives]

Thank you, glad you have improved, hope it keeps up xxx

[Amkoffee]

This definitely sounds like something other than PMR. I would be inclined to want to see a physical therapist. I just read on another PMR site where a woman with the same symptoms as you found out that her pelvis was slightly twisted and her physical therapist was able to readjust her and was out of pain in a matter of a couple of weeks.

[9lives in reply to Amkoffee]

Gosh that sounds interesting maybe it's something I should persew. Today my symptoms are improving so hoping this will continue x

Thank you for this info x

Take care

[navejasjoe]

Hi Carole,

Your situation is ALMOST like my wife's. She was diagnosed with PMR a year ago this week, but was started on 15mg prednisone. 2 months later it was cut to 12.5mg. A month later she was told to toggle between 12.5 and 10 for 2 weeks, then went down to 10. She was feeling great in September. But, by November, when she was told to toggle between 10 and 7.5, the symptoms returned. Her back and hips became a problem. An MRI was done on the hip that was more troublesome. Nothing was found other than some arthritis. The symptoms gradually went away, somewhat, when she increased back to 10mg. But, she does find that her back frequently feels like it is strained, even though she can never remember something she did to trigger it. Her back just seems to be ever so sensitive ever since the PMR diagnosis.

Joe

[9lives in reply to navejasjoe]

Hi Joe

Yes I can relate to that, my lower back has always been troublesome throughout this PMR. It must be very frustrating for your wife. And as she says it's just random, no obvious cause.

I do hope things improve for her, at least we are not alone in this which I think helps x

[margiebell4]

I'm going through a similar experience and would like to hear how you are doing now.

My hip started to be painful about 7 months ago and gradually became worse so I increased my prednisolone but this didn't help. It feels very different from PMR so I wasn't surprised. I've had 3 months of physio as my doctor thought it was osteoarthritis. This didn't help at all so she referred me back to my GP who referred me to an orthopaedic specialist. He sent me for an X-ray and, because nothing much showed on it he said I was just in discomfort, not pain, and I should go swimming and do Pilates (I wish I could!) He said it might be bursitis, tendonitis and a bit of wear and tear, but he didn't want to give me a steroid injection because my immune system would be compromised due to taking prednisolone and I may get an infection in my hip from the injection. He has referred me for an MRI to make sure it's not avascular necrosis and will see me in 8 weeks for the results.

I am 58 and diagnosed 3 years ago. I am now on maximum dose of paracetamol and ibuprofen and have to take a PPI to protect my stomach. The pain is still preventing me from living a normal life.

Needless to say I'm not happy with his attitude!

[PMRpro Ambassador in reply to margiebell4]

"He said it might be bursitis, tendonitis and a bit of wear and tear, but he didn't want to give me a steroid injection because my immune system would be compromised due to taking prednisolone and I may get an infection in my hip from the injection."

What a prat - I've had a few steroid injections - they work, and it has no more effect on the immune system than a higher dose of pred.

Find another...

[margiebell4 in reply to PMRpro]

Thanks for putting into words what I think of him. He just didn't seem to take me seriously- he told me that not all pain can be treated and sometimes you just have to live with it. I left feeling very upset.

[PMRpro Ambassador in reply to margiebell4]

Well, I wouldn't go back! A good GP is far more use.

[margiebell4 in reply to PMRpro]

I don't understand how paracetamol and ibuprofen can help with the pain (and they are) when I'm taking steroids. I thought steroids and ibuprofen did the same job, or am I being too simplistic?

[9lives in reply to margiebell4]

Hi I understand that if pain killers ease the pain then it is not PMR, as only steroids can do this, so maybe there is something else causing you pain. Hopefully your MRI scan will throw something up. Do let us know how you get on.

Take care

Carole x

[margiebell4 in reply to 9lives]

Thank you, I will. X

[PMRpro Ambassador in reply to margiebell4]

It depends what is causing the pain, the way they work is different. Steroids work on PMR pain because they relieve the inflammation which is what is causing the pain and stiffness. Doctors will sometimes say that NSAIDs (ibuprofen) will help with PMR but the majority of patients find they don't (and anyway the side effects of using ibuprofen are as bad if not worse then pred). If paracetamol and ibuprofen are helping your pain - it is very unlikely it is due to PMR.

(Some VERY basic science: Ibuprofen works on prostaglandins which the body releases from the brain in response to pain and injury, steroids probably work via the white blood cells, especially neutrophils. And neutrophils are found in quantity at the site of GCA inflammation.)

[margiebell4 in reply to PMRpro]

Thank you, that confirms that it's not the PMR (I was starting to doubt myself). Not that I'm happy about having another condition, I feel as if I'm never going to feel normal again. 😟

[PMRpro Ambassador in reply to margiebell4]

Something I forgot to say about the steroid injections is that for bursitis you do NOT need injections into the joint - just into soft tissue and that reduces the risk of infection. The bursitis very probably is part of the PMR but the steroid dose is probably either not high enough OR you haven't been on it long enough (or both). It took 5 or 6 months before my hip bursitis faded and I'd been on 15mg or just under for a lot of that time. Injections work far more quickly.

[9lives]

Hi Margiebell4

It’s been a while since I posted about the painful hip, but a bout a week after increasing the steroids the pain disappeared, so guess maybe I was not ready to go so low.

After that I have been doing reduction very slowly, as taking heed of all the expert advice on this wonderful forum, and so far all is going well, am down to 5 mg now, so hopefully this will continue.

I am in no hurry as rather be safe than sorry.

But more recently have diagnosed with osteoporosis of the lower back and Dr wants me on AA, but am unsure about this.

Have been reading the book your bones, as recommended, so will decide later what to do.

I’m sorry you are having problems and hope you get some answers soon.

It’s all very frustrating this PMR business!!

Your Dr don’t seem to know what it is which makes it all the more difficult for you, then you start to loose faith in them, I do feel for you.

Hopefully things will improve xx

[margiebell4]

Hi 9lives, thanks for your reply. I'm glad to hear you're doing quite well now. Hopefully my MRI scan will throw some light on the problem. X