Hello everyone - following on from my last post - hip and groin pain and all the most excellent advice and shared experiences, I rocked up at the surgery yesterday with a print out of parts of the answers I got and a piece of paper with all the things I wanted to discuss - possible bursitis, iliopoas Bursitis, myofascial pains, and info on new blood tests.
He was very good and said well we can find out right now if you have Bursitis and after examination confirmed its in both hips, worse in the right side. He then offered me a steroid injection there and then which I accepted gratefully!
I will be back in 12 days to discuss how effective it has been but I feel instant relief and I also have a similar pain in my inner elbows so it may be its there too but to be honest the worst pain has always been in the groin and down the leg so I wonder if it will stop now. It comes and goes, I can go days without virtually any pain even with light gardening then it will come out of nowhere.
I told him I had increased from 3.5mg to 5 after a flare up about 3 weeks ago, he said that you should always have a blood test first before any increases as oftentimes the pain is nothing to do with PMR, so he is doing a blood test when I go back in 12 days to see what the inflammation levels show.
I feel that he is a very understanding and sympathetic doctor and I know I am very lucky. I told him how invaluable this group has been and the wealth of knowledge, understanding and help has made all the difference to coping with this condition - I have still never seen a rheumy but feel with the right support from a doctor its going to be enough.
Thanks for all your help I feel empowered to investigate more - we only have one body and it needs to be taken seriously by those that are charged with the healing of us !
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LozzaSandstrom
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Out of interest - have your blood markers tracked your symptoms? Mine didn't at a level most doctors would have accepted, The question really should be - have you got PMR symptoms. They always trump bloods.
Apart from the standard blood tests they did when they were first checking me out - ie pre diagnosis I have not been offered a single blood test I don't think any have ever been done for inflammation markers. Having said that, when I increased from 3.5mg to 5 mg recently I was much better - not perfect = but much better within 48 hours
My inflammatory markers have never risen or only risen by a point or two during a flare since the start of Prednisilone. A flare has been diagnosed through symptoms and Rheumy has said this is what he goes by. I am under the impression that the Rheumy asks for BTs as if raised it could be a marker for the return of GCA without symptoms. So the BTs are a precaution rather than a diagnosis.
Yes he did bring GCA and said that - left untreated can lead to blindness and severe problems he is more concerned that I don't have that and I can say that I have never had any head issues its all from the shoulders down.
I had my trochanteric Bursitis injection two weeks ago. After 48 hours I noticed improvement, & that continued. Now instead of being constant pain & often acute pain there is just a stab of pain occasionally…but probably when I do something stupid, like lift a heavy bag of shopping.
Well that outer pain was very slight as in it felt like a bruise but the real pain is along the top of my leg to my groin and thats very much still there - so I don't think thats the issue although its hard to tell at this early stage - glad you are feeling better
oh, blow, I thought the groin pain I have is because I’m tapering too fast, & is part of that!! Didn’t think trochanteric bursitis was painful in the groin area!! Blast!
groan…I don’t know the answer…but, tbh, I get a lot of groin pain, hip pain, oh & shoulders, if I’m flaring (or tapering too fast!!) So I just thought that’s what it is!! S x
Well. I can tell you there is no improvement! I did wonder as the bursitis is in my outer leg/thigh and the groin pain of course is much further in so I think you were right I will report back after Wednesday
Well described…yes, Bursitis and sciatica both on outsides of my legs, & inner groin pain (PMR in my case as I’m at a low level right now!) Good luck on Wednesday!
sounds like you have a handle on it. I'm feeling it from bursitis and also a compressed spine with early osteoporosis . the curvature is probably causing most pain although the regime i have adopted these last 3 weeks of late hot bath, elevated legs, sleep till late morning and no serious work other than meal prep seems to have greatly eased the problem. It's the multiple conditions that all interact that cause us the worst problems as they each have origins and different solutions . I've been offered daily injections for the osteoporosis and a yearly alternative as the development is slightly more than pills will counter. The fractures in some of the backbone should heal and the bone improve my Rheumatologist advises. We'll see. As for blood inflammatory markers I must say that mine appear to be a very good indicator of whether or not I should decrease the pred. Good luck everyone on this journey.
Oh my you do have it all going on. Yes I will take the offer of a blood test Wednesday and report back! Good luck with your issues and yes they are all linked aren't they. I was in A & E twice this week, I have concussion after banging my head in the pool 8 days ago so not doing much of all as a result
Hi there - well as they say -,no news is good news and he said if I didn't hear from him everything would be as it should be. I really should phone though and find out about the inflammation markers.
My upper leg/groin is still just as bad - it feels more like a nerve thing. Sometimes it just kills me with sudden shooting pains and an ache which feels like sciatica type nerve pain, I just am not any further forward with that sadly.
But, now down to 4.5mg most days - its much better than it was.
no need to apologise. much the same and 3" shorter. Osteoporosis prevents usual correction by osteopath. I've opted for yearly infusion rather than daily injections. Different process. Should strengthen bone and repair fracturing hopefully. Don't know about compression but until the curvature is corrected I can't see this improving. Reduced to 13.5mg and going to continue at 10% each drop. You should get a specific report on inflammatory results.
Cheers Lozza. You are still young and adjusting to the many issues we face with these conditions takes some handling. As an older sufferer I ought to accept this more readily, but I still find it hard to adjust because of what I was capable before it really took hold. I don't like being dictated to by something over which I have little or no control. I think all here share this in common. Unfortunately I seem to have reacted rather worse than most to the steroids and that has to be lived with. When I can get them down to 7mg to 3mg it may improve. Let's see.
I still find it hard to adjust because of what I was capable before it really took hold. I don't like being dictated to by something over which I have little or no control. I think all here share this in common.
Not how I see it. It isn’t even overtly something from outside, like a flu virus. It’s a part of me (i.e. the fundamental deranged production of IL-6) that’s temporarily malfunctioning and will sort itself out. I might occasionally address it with a certain amount of irritation – “I mean, come on, get your act together, what do you even think you’re doing down there?” Meanwhile I take Pred to stop it getting in the way, i.e. being symptomatic, apart from lessened energy and sometimes emotional volatility. I can’t remember how many million, trillion actions take place in the body every single second but the freaking miracle is how they generally work correctly. Occasionally something misfires.
When I was 12 I developed adolescent idiopathic scoliosis, meaning my spine began to curve for no apparent reason: somewhere the signals had been badly crossed. I had it surgically corrected and was upright and fine for some 45 years, hiking, walking 10-15 miles. Curvature began to set in again. Today I can’t stand upright and walk with a rollator. Am I to see my spine as something dictating to me over which I have no control, to be at war against my body? Sure, I used to go for long walks. That was yesterday. Today I enjoy myself in different ways.
Not sure its all down to IL-6 Mayadill. Seems that's an anti-inflammatory gene that has switched its state to inflammatory for which TCZ was specifically designed to tackle. If that were the only cause then we wouldn't need pred. PMR and GCA are clearly states of our immune system being triggered by some final event to malfunction and attack the host body. Medics still don't actually know what they are or what truly triggers the onset and that is why I say that because i can neither know the cause or know what it is I have no control of it. I know what it is doing and can adapt but it is controlling me. I also know what the controlling pred is doing to me and that is upsetting and also out of my control save reducing the dose to a level where it hopefully will stop damaging me.
From the language you use here and in your profile, it sounds somewhat as though you're on a mission not to let 'it' win. But your opponent is simply your body, where you live. Strikes me that like some others here you regard your body as a disobedient servant to be whipped into line, made to do what you want. or you could encourage it, nurture it, relax and go with the flow. I think we agree to differ. I am flagrantly biased. I don't have any side-effects other than tiredness and occasional emotional volatility and I am at the moment drifting gently down to 7 mg without reference to calendar or indeed doctor and without really noticing. On 18 May when I got my last scrip I was on 9 mg, 5/2/2, three-way split. It stopped seeming necessary to take the second 2, so it became 1 and now it doesn't feel necessary to take the first 2 mg either, so that's 1 mg too.
Accepted Mayadill but i'm not on a mission. However, that is my point. The body that I cared about and took care of has turned on me and without knowing what caused it or how to therefore address the issue I have no control and that is why I don't like being dictated to. It doesn't mean I can't adjust and adapt. I have done so. Doesn't mean I don't have any way to understand and possibly help correct. That's why I have initiated a project to understand how the disease and the drugs are affecting the muscle wastage and regenerating potential. I'm glad that you are content and happy where you are at. Long may it continue. For those of us with serious reactionary issues and damage my project seeks to help recover from these effects when we are off the drugs and need to rebuild some semblance of what we had before.
Sure, understand that, but that's exactly my point, the words you use! It hasn't turned on you after all you did for it and is now dictating to you - any more than - 99.999% of times you click on the Word icon and Word opens. One time it doesn't. That can be annoying but we don't feel betrayed by or dictated to. or when your browser comes up with some ridiculous message like this site can't be found, are you sure it exists, how about typos, when you've simply clicked on the BBC icon on your desktop that's worked a zillion times before. However well you look after your computer. And apart from the raw material we give our bodies to work on, we don't have control over them anyway; it's all on automatic. You feel frightened, your heart beats faster. Cut yourself and a clot forms, the white cells rush in to repel invaders. Things go wrong with mechanisms. By the sound of your project you know that every time a cell reproduces a mistake can happen in the DNA. This article is interesting
That's because we are in charge of that specific technology and rubbish in rubbish out governs our control of technology. Binary logic dictates this. I don't accept the analogy although I understand where you are coming from. I do feel betrayed by my body although I have accepted what has happened. I am trying to understand what I can about the condition and it isn't all about IL-6. If it were TCZ would suffice. Before this condition rewired my immune system i did know that certain actions and inputs would result in known outcomes and to that extent I was in control. I don't understand how the body managed to achieve these outcomes given its complexity, but I knew that the outcome could be relied upon. This certainty has gone and that is why I feel this way. I understand about cells not always regenerating properly but we are beginning to understand that and maybe it will even be possible to correct this. That's control through knowledge. What is frustrating is that we still don't truly know what GCA and PMR are. We can't therefore posit a test to prove it. We therefore have to accept something out of our bodies control is controlling us and while I can and have accepted it I resent it.
OK, you've got a squishy mass of tissue given shape by bones and held together by skin which is estimated to contain around 30 trillion cells, which are all working non-stop and which will at some point stop working over which you will also have no control. Think positive! Appreciate it!
You do rather seem to be saying that, unlike the bodies of every other human on the planet, your body should continue to work perfectly for ever.
Feeling betrayed by molecules seems to me somewhat a waste of energy.
Bodies go wrong, in ways that may be trivial, may progress slowly, may have acute onset, may be life-threatening – may progress so slowly that in times of shorter life expectancy you’d have been dead long before the condition became noticeable. Post -mortems of the prematurely deceased may show a variety of things that are starting to go wrong or things that have been fixed by the body that might later have been problems if the person hadn’t unfortunately been run over or something and so died prematurely. If you misuse and abuse your body through smoking or sugar, it’s liable to deteriorate more rapidly. There are countless factors, genetics, environment, nutrition, luck. Your body works selflessly 24/7. It asks unpolluted air and water and the nutrients it needs to go on best working. It likes it when you pay attention to it and use it, give it a work-out. It doesn’t like it when you hurt it any more than you like it when someone else hurts you.
Thought-experiment for people, including of course doctors, who think pain should be 'toughed out'. if the equivalent level of pain were inflicted by a stranger in the street, would you brush it off and accept his or her apology or would you scream for the coppers and bring a charge of criminal assault.
That's an aside. The word in question is senescence, biological ageing. No living organism, you, me, that pesky fly on my wall, escapes time.
They are my molecules and I reserve the right to feel this way Pred. prevents the muscle taking up necessary nutrients for rebuild and wastes the muscle to fat. It transforms the skin thinning and making it less robust and prone to bruising and blood blisters. Without pred. we wouldn't be mobile and relatively pain free. Rock and hard place. It's hard for anyone to accept they are less capable than previously due to age and medical conditions but more so when they were as supremely fit as I was. Be that as it may we are where we are. It is not about how long we can live but about what we can achieve while alive that motivates me. Passive existence has never been my thing and just marking time waiting for better times seems a cop out. Creative writing, planning for when I am recovering and doing what I can at present keep me hopeful. They are pitiful compared to what I used to be capable of. I have to accept this but I don't have to like it. This has been an interesting exchange Mayadill so thanks. Keeps the brain ticking.
I have to accept this but I don’t have to like it…
Here, here, I’m with you on this re my GCA. Passive existence hasn’t been my thing either and I’ll do all I can to get to those better times, which, a year on from diagnosis are starting to creep in again. Pacing, sensible tapering, good diet, rest and sleep. You have to have hope as you say Cycli.
cheers Bluey-1. After 2 years of the 2 conditions I'm reasonably adjusted to my state. Treading water so to speak. Tha bursitis is a bitch and the osteoporosis a bit worrying. Hoping the infusion in a months time improves the bone density. Blood tests thursday so if inflammatory state ok then will reduce another 10%. Slow and steady.
I had a Zoledronate infusion a few months prior to GCA diagnosis, following a couple of fractures between 2017-21 and subsequent DEXA scans. Hopefully it’s kept my bones from getting worse. Having had the infusion at least I don’t take the dreaded AA. I did not respond to that after the wrist break so stopped taking it. After the humerus break in 2021 plus DEXA scan the infusion was a no brainer, especially as a few months later I’m necking 60mg pred a day!
good to know you are doing well on it. I refused AA. Maybe your series of breaks triggered GCA. Who knows. they think my serious crash in 2017 triggered my state. A one time infusion lasting a year part of a 3 year program is preferable to a daily injection.
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Pred. prevents the muscle taking up necessary nutrients for rebuild and wastes the muscle to fat. It transforms the skin thinning and making it less robust and prone to bruising and blood blisters. Without pred. we wouldn't be mobile and relatively pain free. Rock and hard place. It's hard for anyone to accept they are less capable than previously due to age and medical conditions but more so when they were as supremely fit as I was. Be that as it may we are where we are. It is not about how long we can live but about what we can achieve while alive that motivates me. Passive existence has never been my thing and just marking time waiting for better times seems a cop out. Creative writing, planning for when I am recovering and doing what I can at present keep me hopeful. They are pitiful compared to what I used to be capable of. I have to accept this but I don't have to like it. This has been an interesting exchange Mayadill so thanks. Keeps the brain ticking.
now i have Trochanteric Bursitis
Greater Trochanteric pain
Bursitis on sole of your feet 
Bursitis / groin pain 
When having Bursitis is a relief
