I am now on two crutches, and feel like singing 'no wheels on my wagon'

[caterpillar]

So, to continue my sorry tale...

The Avascular Necrosis has 'destroyed' my left hip... yes! that was the terminology used by the Muscular Skeletal specialist, who was looking at my MRI results, which they had, kindly, pushed through for me as urgent, on the NHS..

He was comparing it to an MRI which was done at the end of last year, a couple of months before I started taking Pred, which showed no signs of AVN. He believes, along with another leading and pioneering specialist in hips, that the steroids have caused the damage in my left hip, and rather unfortunately, are now doing damage to my right hip... they are trying as a matter of emergency to get me into a clinic tomorrow to assess the situation...

The agony is unbelievable, even though I am taking rather heavy doses of oramorph, gebapentin, methotrexate, and hydrocodiene...

I am trying to titrate down as quickly as I can on the Pred, I am currently on 12mg, and have been dropping 1mg approx every two weeks... although I think I will have to slow this down once I get to 10mg, or if the pain of the pmR returns with a vengeance ... I don't know what I would do if I couldn't move my arms again, on top of not being able to walk, or how I would even be able to operate the crutches if the PMR flared....

I am trying really hard to remain positive... some days this is easier than others... when my little 6 year old daughter gives me an unexpected kiss and a hug, and tells me she loves me, can over ride the pain, and bring some sunshine back into my darker days..... I have found if I pretend smile for long enough (which I have to do for hours everyday, so, my little girl won't worry), then before I know it, it has turned into a genuine happy face....

I am writing this as a cautious warning to everyone on Pred, my side affect is really quite rare, I believe, but something to keep a watch out for, because, it happened very quickly to me, within about a month of starting the steroids... I was on a dose of 40mg, which is what it took for me to become pain free... I am a 50%er, so, really, that equated to approx 20mg that my body was actually absorbing... but I went downhill so quickly that it was more of a plummet and a dive....

oh... the joys, and surprising twists & turns, that PMR, and the drugs we take to try to give us a semblance of normal life, take us on......

sorry for the long post, hope you are still with me...

[HeronNS]

I am so sorry this has happened to you. It is indeed a very rare side effect. Would any of the things people suggest to reduce the pain of the add ons we all seem to have help at all? Some recommend Bowen therapy. I've benefited from low level light therapy and dry needling. These don't help the PMR itself but they can relieve other pains and contribute to feeling better with a lower level of pain.

[caterpillar in reply to HeronNS]

thank you, I will look into those...

[HeronNS in reply to caterpillar]

All the best. Hopefully, too, the surgery when it happens will help you feel a lot better afterwards. ❤

[Hidden]

Oh Caterpillar

That is such an awful thing to happen to you & the level of pain must be unbearable.

I am sending you my Very Best Wishes & a Big Virtual Hug!

I do hope they can sort your hips quickly & you can get the steroid dose down without the PMR flaring too much.

Thinking of You 💐

Mrs N 💅🏼

[SheffieldJane]

I am still with you and appalled at what you are going through. You have been so very unlucky and you are being incredibly brave. Please use this forum to tell it how it is whenever you need to. Don’t underestimate your little girl, she’ll know something’s up. I expect you tell her that you’ve got a poorly hip and the doctor’s are working to make it better. Children relieve my pain too, unfortunately my grandchildren are too far away for a healing hug right now. I have no advice to offer, this is such unknown territory, you must be in shock. I pray to all that is good that you get relief soon. 🌸🌸🌸

[Angiejnz]

Flipping heck that's grim. Sorry to hear you've got all that to deal with so sending hugs from NZ as I reckon you get the northern hemisphere hugs during the day and mine at night xx

[Soraya_PMR]

Dreadful news. I’m so sorry you’re having to endure this. Sincerely hope the experts can sort you out quickly.

Best wishes x

[pmrkitty]

So sorry for all you're going through. I pray you are able to find relief quickly. It is so sad to be healthy one month and then awaken to PMR and be so totally disabled. You have had something happen to you with the Prednisone that most of us had never even knew could happen, It is so scary. I am sending you a soft hug and prayers, try to hang in there. Maybe a miraculous cure is just around the corner...sure Hope so!

[Hollyseden]

I'm still with you too. So sorry to hear all you are going through and then to see you have a wee 6 year old to look after too. I love looking after my toddler granddaughter 3 days while her mum is at work but I am exhausted when she goes home in the evening. I hope you soon get the pain in your hip sorted. Know that we are all thinking of you 💐

[Dream21]

How heartbreaking to hear about your condition. I am praying for you. I hope you post with updates. Please know I support you on your journey.

[TooSore]

I'm so sorry for all you're going through. You are in my thoughts and prayers.

[Pongo13]

Goodness what a terrible lot to deal with, can't imagine how you are feeling and especially with a young child too. Sending hugs and wishing I had a magic wand.

[PMRpro Ambassador]

Ouch - hope the hip replacement comes VERY quickly. The NHS can be brilliant when push comes to shove...

Yes - very rare but also a problem associated with the bisphosphonates that they are so keen to push on us "just in case" (does taking both make it more likely?).

All the best.

[caterpillar in reply to PMRpro]

thank you, funny enough they have been talking about giving me a bisphosphonates infusion for my right hip, which seems very inflamed and may be going the same way as my left hip... I have stopped taking the Alendronic acid orally, as I didn't like what I was reading about the possible side effects, and have been having 100mgs of prunes everyday instead, in the hope that the American study which found it to replace bone density as well, if not better, than the Alendronic over a period of a year, is correct....

[suzy1959]

As I am having my hip replacement today, I am also thinking of you . I can't imagine how awful this must be for you and I really hope they can sort it out, especially to get a hold on your pain. Don't ever worry about posting your feelings here- all feelings are welcome! xx

[Longtimer in reply to suzy1959]

Hope all goes well today.....

[Hidden in reply to suzy1959]

OH suzy1959, best of luck!!!!!! Let us know when you're on the other side of this!!!! We'll be waiting to hear!!!! xxxx

[Purplecrow in reply to suzy1959]

Susy, best wishes and big hugs! Hope your surgery is uneventful in all the good ways.💜💜💜jerri

[Jackoh in reply to suzy1959]

Do hope everything has gone ok Suzy1959. You do deserve a breakthrough! Best wishes- let us know how you've got on.

[caterpillar in reply to suzy1959]

good luck, thinking of you, and wishing you a speedy recovery... xx

[Hidden]

Wow....caterpillar, I am so sorry you are going through this!!!! I cannot even imagine. I have nothing to offer you, except thoughts and prayers. I hope they (the powers that be) can find a solution to end the pain as soon as possible. It must be very hard trying to stay positive... but I'll bet that 6 year old little one is your saving grace! Treasure her. Best of luck.

[powerwalk]

oh so sorry to hear this - sounds quite horrendous. I hope you get treated ASAP. Best wishes.

[Valnvaughan]

I had my right hip replacement on May 14th. The relief from pain was immediate. Although there was recovery from surgery the pain was not so severe and I knew it would end. I am still on two crutches.....getting very proficient. And get very pleased with myself when I go to the bathroom without them.

I do not know that Prednisolone caused the hip deterioration, but it certainly masked the pain / mobility problem so I did not notice it was happening.

Left hip, not so bad. Just waiting to see.

Valerie

[Jackoh]

So sorry to hear this caterpillar. Such a difficult position to find yourself in. Sending love and prayers. Do keep in touch and keep us updated. Xx

[Telian]

Sorry only just read your post but yes we are all still with you and can only hope you are seen as a priority for much needed treatment. Having a young daughter should come into that!! Best wishes caterpillar

[Marilyn1959]

Any updates caterpillar. Have been thinking of you.

[caterpillar in reply to Marilyn1959]

yes, thank you for asking....

I was summoned to the hospital, and they did tons of blood tests, two lots of x-rays, swabs to test for mRSA etc... I was there most of the day... the conclusion is that the steroids have caused Avascular Necrosis in my left hip, unfortunately, also, my right hip is very inflamed and going the same way... the complete collapse was caused by my inept rheumatologist, who insisted on giving me a hip block, and told me it was just my age, even though I told him that my doctor believed it was AVN, and his response was that he didn't know what I was talking about... the consultant for hips that I saw, in the hospital, said I was lucky not to have developed an infection from the hip block.....

Anyway, they have put me on the list for an emergency hip replacement, hopefully within 2 months.... I am so glad to be going in the right direction, at last....

[PMRpro Ambassador in reply to caterpillar]

Obviously HE didn't know what he was talking about, not you ...

Complaint time methinks...

[Marilyn1959]

Agree with PMRpro re grounds for complaint - perhaps once recovered from surgery though. I think you have enough on your plate for the moment! I sincerely hope that you do not have to wait long for your health to improve.

[PMR2011]

Wishing you a reverse in fortunes Caterpillar. Glad your daughter is there for you. 6 yrs olds can be such little helpers. Keep us posted.