Hip pain truly unbearable 😔 : Hello all ☺ Not... - PMRGCAuk

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Hip pain truly unbearable 😔

wooh66
wooh66

Hello all ☺

Not been here in a while as I've just been plodding along with the joys of PMR struggling to get under 10mg and living life as best you can with this invisible illness to the outside world!!

However I've been feeling in pain so much lately and at 10mg I'm not feeling great, this has really gone on and off since having my gallbladder removed last Nov so I'm not sure if that is maybe a reason my body isn't coping. The GP is referring back to another consultant which I'm sceptical about after the last one but she is thinking if pred is no longer helping its now out of her hands.

Anyway basically my right hip is agony I'm walking with a limp as its so painful and the GP has said this could be a bursa. Anyone else developed this? Ironically my pain is predominantly on my right side, shoulder, hip, knee, ankle is this the same for anyone else?

Not a very exciting life especially when you are only 51!!

Your comments would be appreciated. Thank you

52 Replies
oldestnewest

Greetings wooh :-)

Yes, I've had the hip problem recently too, one side only. I think it's called Tronchanteric Bursitis - where the PMR or other inflammation gets into the lining, but I'm sure the forum Aunties will be able to tell you more...

Like you I was limping around and in quite some pain for a few days but it has seemed to resolve itself. At its worst, I found that a couple of aspirins helped - especially one night when I couldn't sleep. I've read somewhere that if it doesn't settle down you can also have an injection to help the pain. But again, I'll leave it to the experts here to advise.

All part of the PMR Journey I think!

Hope this helps

MB

Age 61, PMR 3 years, currently hovering around Pred Club Zero...

Hi MB

Thank you for your reply, glad yours resolved itself, I've been like it for about 3 weeks but I'm a bit of a stubborn mule so don't give in very early till I'm broken!! I've been prescribed Gel but it's doing nothing and pain killer help slightly. Yes gp suggested injection or worse case draining it as she said it like a fluid pocket.... Oh the joys!!

GilaineMary
GilaineMary in reply to wooh66

I have the same pain, had it around 8 weeks. Can’t pick anything up if it falls. Since last weekend I also have a dreadful pain behind my right ear, shooting up my head.

Julie. 4 years PMR been off preds since last sept.

wooh66
wooh66 in reply to GilaineMary

It's really painful isn't it. I have that ear pain too occasionally. I'm 4 yrs with PMR but still on 10mg can't get lower sadly

GilaineMary
GilaineMary in reply to wooh66

I found that my pain was worse on Preds when tapering because it was fighting the drop in mg. I was just as bad on them as off them in the end. Came off last September and went into remission for a glorious 6 weeks through Christmas 2017. Pain started to increase again at the end of January 18 😪

I think I need to be reassessed. Seeing a rhuemy in Tueday

How long have you had that pain up behind your ear?

wooh66
wooh66 in reply to GilaineMary

I will be honest I'm feeling like this that is it worth being in pred at all... But in saying that I know it's an awful time just trying to cope. I hope your apt goes well it's like you life is in their hands and all you want is to be pain free. My gp has referred me also as she said there are other treatments but they have to be prescribed by a consultant. Keep us posted how you get on.

Behind my ear about 6 months or so on and off

I didn’t think we could take aspirin (asa) with steroids. It’s the only otc drug that works for me. Good to know ✔️. Age 64- not hovering too well 😱

Ah, maybe not aladymo, but I'm currently nearly off the steroids so I took the chance - and it worked very well ;-)

Constance13
Constance13 in reply to aladymo

Aspirin was the only tablet people used years ago (before all the scares). It’s still one of the best pain killers I know. When I am desperate I guiltily pop in a couple of aspirins - pain gone!! I don’t do it often because of all the other pills I take but it is wonderful to be pain free for a couple if hours.😀

aladymo
aladymo in reply to Constance13

Agreed. Only over-the-counter drug that works for me. But I was told it cannot be taken with prednisone. I will ask again just to make sure. 👍

Constance13
Constance13 in reply to aladymo

I’m afraid it is true, but being pain free for a couple of hours is worth the risk. However, they shouldn’t be taken regularly (especially if you have PMR). They also cause internal bleeding. Such a nuisance, the one cheap thing that actually works is forbidden.😡😡

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to aladymo

Yes you can take aspirin, but only the small dose - 75mg (I was/am on it GCA - pre, during & post for blood pressure). In fact it used to be prescribed alongside Pred as a matter of course, now amended to case by case basis.

I don't have PMR. My rheumatologist says I have seronegative RA. I seem to fit PMR better though. I had a sudden onset of pain where the hip bone meets the thigh bone. It got worse over a couple of hours and I couldn’t walk. It got to the stage where I could not find a position which was comfortable and the pain was making me sweat and almost pass out.

After 5 nights in hospital they told me i had calcific tendonitis of the gluteus medius. This was causing trochanteric bursitis. I was on crutches for 2 weeks. There was no obvious cause for the flare up. I have also had calcification in my shoulder leading to bursitis.

These were both on the right side but when I had to use my left side when my right was hurting, I began having aches similar to the right side. So I am symmetrical but worse on my right for some reason.

Two days ago I went from 10mg to 7.5mg of prednisone. All the other tapers were fine. This step has mase me feel like I am having an instant flare. I am 44

wooh66
wooh66 in reply to Peep44

Hi Peep44

Seems you have been on quite a journey. Its very frustrating isn't it especially being so young.

I also struggle under 10mg hence why the GP is sending me back to the consultant.

Thank you for your reply

Peep44
Peep44 in reply to wooh66

I was only given codeine for my pain in the hospital when I had my sore hip. No anti inflammatories or steroid injection or prednisone. My follow up appointment took 6 months, but it was under orthopedics. I couldn’t see a Rheumatologist as I didn’t qualify ad bad enough for the public system. I have to fund my own rheumatologist back then 😒.

wooh66
wooh66 in reply to Peep44

I've a 3 month wait, not easy when you are in pain 😔

piglette
piglette in reply to wooh66

Hi woohoo, is that to see a rheumatologist or an orthopaedic surgeon?

wooh66
wooh66 in reply to piglette

To see a new rheumatologist piglette as the last one completely dismissed I had PMR as I don't ✅ all the right boxes!!

piglette
piglette in reply to wooh66

I think three months seems to be about average to see a rheumatologist in UK sadly.

wooh66
wooh66 in reply to piglette

Yes is seems to be so.

Peep44
Peep44 in reply to wooh66

My hip flare up was in October 2015. I had to see a private Rheumatologist as I didn't tick enough boxes for public. Finally I qualify and have an appointment this week at the local hospital for assessment. My private Rheumatologist and doctor want me to have a CT scan to check for malignancies. I bet you I wont tick enough boxes for that!

GOOD_GRIEF
GOOD_GRIEF in reply to Peep44

That's too steep a drop. Yo need to go back up to at least 10, sit there for a while, and drop in increments of no more than 1MG at a time.

Peep44
Peep44 in reply to GOOD_GRIEF

I'm afraid my rheumatologist decided my tapering regime. I might be able to half my 2.5mg. I don't have any 1mg ones......

BonnyQuine
BonnyQuine in reply to Peep44

Agree w GOOD-GRIEF - that was too steep a drop at that dose. I wouldn't drop by more than half a mg at this stage. Couldn't you explain the problem to your rheumy, and request some 1mg tablets to enable a slower taper?

You can cut a 2.5 tab if it's not enteric coated. The coated ones mustn't be cut.

Robinre
Robinre in reply to Peep44

Hi, I had what was diagnosed trochanteric bursitis before I was diagnosed with PMR. I believe it was the precursor and then afterward I read that this condition often goes along with PMR. Also pseudogout is the same. Read up on pseudogout. I accidentally took my pseudogout medicine when I thought I had trochanteric bursitis and overnight all pain went away and stayed away. For me they are all connected (all thought to be a type of autoimmunie disorder). The pseudogout pain is the worst and I too was hospitalized. However when I was finally diagnosed and given the proper medicine for this condition I am able to take that pill immediately when I identify that particular incredible pain in any joint, it only lasts a day and then I am absolutely fine. My sister had the same pain and I told her to talk to her doctor and they diagnosed her with the same and she is also able to stop these joint pains when they occur. You will get to the point when you can identify each type of pain and know what to do. I always need to remind myself not to panic and think I am having a flare and want to increase my Prednisone. PMR. Hope this helps.

Peep44
Peep44 in reply to Robinre

My Rheumatologist thought I had pseudogout and gave me colchicine. Unfortunately this didn't work. I was a bit disappointed as this would have made sense with all the calcification etc. It's all about trial and error. I feel like a bit of a guinea pig!

Robinre
Robinre in reply to Peep44

Too bad, I can't be without mine. Have had episodes on ankle, elbow, wrists, and knees (multiple times) and even hip. We just can't give up and keep doing research and trying different medicines/remedies/etc.

wooh66
wooh66 in reply to Robinre

That's interesting Robinre I will look that up, what medication did you take for it? I'm exactly the same I know this isn't a flare you get use to your body and knowing the difference in pain don't you.

Robinre
Robinre in reply to wooh66

It is Colchicine (or I think it is called Colcrys SP? aksi). It is a godsend for me.

DorsetLady
DorsetLadyPMRGCAuk volunteer

Hi

Mark is right - it’s TB.

I developed it last year - not GCA related but due to other knee being crook through arthritis- and make me walk like a pregnant duck! Excruciating painful!

It was resolved with a mixture of physio, acupuncture (both private) and a couple of cortisone injections from GP. Still get a slight twinge in my outer thigh but liveable with.

If you look on t’internet you can find some exercises which will help as well!

wooh66
wooh66 in reply to DorsetLady

I can certainly associate with the pregnant duck walk Dorsetlady 🦆!!

I've been offered the injection next week and I've looked into swimming and pilates so hopefully when I'm not longer waddling I can try some gentle exercise.

Thanks for your reply

Peep44
Peep44 in reply to wooh66

I swim 2-3 times a week at my local hospital hydrotherapy pool. Lots of gentle exercises. The muscles surrounding my joints have got stronger which helps overall.

wooh66
wooh66 in reply to Peep44

Great to hear it is helping you. I'm definitely going to give it a try. Thank you

I read the posts daily and must say they are a wealth of information. This one pertains to me as well, I find yoga helps, as well as massages. Took me long enough to realize this PMR is not going away anytime soon 😱. ( checked the internet , and those exercises look doable - thanks DL ❤️

wooh66
wooh66 in reply to aladymo

aladymo I know I dream I will wake up one day pain free!! I'm looking a yoga too. Thank you

PMRpro
PMRproAmbassador

It certainly could be trochanteric bursitis and it can be associated with PMR - can't the GP offer a steroid injection which is the best approach in PMR? I had it before I started pred but it did fade after 5 or 6 months on oral pred. When it recurs now I get injections.

wooh66
wooh66 in reply to PMRpro

Thank PMRpro she has given me gel to try but not doing anything and has said can have a steroid injection next week if no better. Just wasn't sure if it was a common association with good old PMR.

PMRpro
PMRproAmbassador in reply to wooh66

It is - bursitis in various joints can be due to PMR...

I hear you. I had this bursitis in my right hip from fall through winter, only letting up in the past few weeks. I did a stupid thing and stood on the bus ride from my neighborhood to the ferry (up and down hills and around curves) because no one would give up a seat. Lots of sharp changes in direction...never again. I'll wait for the next bus.

At home, I alternated between a heating pad and a frozen gel pack - 20 minutes at a time each. Out and about, I used Thermacare heat patches under leggings. And ibuprofen...lots of it...but never on an empty stomach and never with 4 hours of taking pred. (Talk to your doctor. This was my doctor's suggestion.)

wooh66
wooh66 in reply to GOOD_GRIEF

Thank you I am actually going to try the heat and cold today. I took ibuprofen last night.

How is the trochanteric bursitis diagnosed to tell it isn’t PMR pain?

Yes most of my pain is on the right side also. I have mild scoliosis, possibly a factor.

wooh66
wooh66 in reply to Mstiles

It's a different kind of pain for me Mstiles, in that I feel a kinda burn sensation right around the hip joint and its incredibly painful to touch just in that area. I described this to the GP and with the fact walking is so painful on that area, she decided it wasn't just pmr... Interesting your pain is mostly right sided too

Mstiles
Mstiles in reply to wooh66

Helpful, thank you. Yes we do not always fit into rigid descriptions of symptoms.

Just to clear up some confusion. There is no pharmacological interaction between pred and aspirin or NSAIDs. The problem with taking the two together is the risk of gastric bleeding and ulcer formation. I have on occasion taken a dose of ibuprofen or naproxen when the need arose, with no ill effects. BUT always at a mealtime and never at the same time as the pred. Paracetamol(acetaminophen) is a good and often under rated pain killer but has no anti-inflammatory activity. It doesn't cause gastric bleeding. It affects the liver instead!

Thank you. Good info

Thank you! Very helpful!

Sorry to hear that you have this. I had troxhanteric bursitis (which can be really painful) and the only thing that’s ever helped is cortisone injections - I dreaded not having the . Had condition for about ten years. Done physio and nope nothing worked. Begged Rheum to allow me to continue with cortisone but because of severe steroid side effects he says no. - try physio again;: best to try and catch it early O it doesn’t become long term as their are exercises that can help in early stages - hope you get help with it let is know how it goes xxx

wooh66
wooh66 in reply to Hev1964

Thank you Hev1964 I'm hoping that as I've only had it a few weeks it will improve if I have the injection 💉... Not that I'm looking forward to that. Will book it next week.

Good luck, the injection isn’t too too bad, honestly and in my experience. vEry worthwhile xx

I have been struggling with this for some time too. You cannot take aspirin with steroids, but Tylenol 3 does the trick. It does help. I got down to 4 mg of pred and the pain got so bad I had to up it, now I'm finally back down to 10 mg but the flare ups are starting again. I hate this drug but it was better than going blind. Now, trying to get off this drug is ridiculous, I've had this battle for 7 years and just want to be free of it. All I can say is to hang in there, try the T-3's (not aspirin) and fight it as best you can, as am I. I hope this resolves itself for all of us. Let me know it works.

wooh66
wooh66 in reply to Sally001

It's does feel like a constant battle at times. I also hate being on pred but as you say going blind isn't really an option sadly. Hope you are soon over your glare. Hang in there.

piglette
piglette in reply to Sally001

Tylenol/paracetamol does not cause stomach problems like aspirin does. It is very effective as a pain killer.

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