Slowly reducing prednisolone -now at 6 mg but have hip bursitis and swollen sore legs and feet. Told this is because the steroids have made my varicose veins worse and once I come off prednisolone the swelling etc will go. Really finding it hard to cope with all this. The hip pain really bothers me at night as I sleep on my side and cannot seem to adjust to lying on front or back.
Also am continually amazed and hurt by so called friends - they see you struggling and a few weeks later email hoping you are well..... these are people with a medical training but don’t seem to comprehend chronic illness.!Feel I have heaps of acquaintances but so few friends.
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Lindalang
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You will find pleanty of friends here who understand Lindalang. We all share that problem to some extent. I understand the difficulty of not being able to sleep on my back too. Sleeping during my hip replacement involved being propped up with lots of pillows!
I suggest you should see the dr about the pain but others will be along with their suggestions. Many of us on pred have trouble sleeping. Good luck to you.
I’m sorry to hear you are suffering so, have you tried using a cool pack on your hip, frozen peas are good as they mould around the area you are treating, you can keep refreezing them, always put them in a cloth so they are not directly on your skin.
Sit with your legs up as much as you can & it’s worth considering raising the foot of your bed. Try using small pillows to make you more comfortable at night. It’s not much fun adding extra’s to your bed during the warmer weather but you may find a more comfortable sleeping position.
Other people just don’t understand Invisible Conditions such as ours especially if you look ‘well’ but we do on here so please keep in touch.
I really sympathise. When I had bursitis I took brufen regularly for about a fortnight with the drug to protect your tummy and it settled substantially. I eventually had a steroid injection in my hip and it was like a miracle. So it may be worth chatting with your GP. Hope you get some relief soon.
Sorry you’ve got all this. Are you wearing light compression socks? Unless you’ve had a Doppler a class I is what you can use safely.
As for lack of understanding, it can be those those who are closest can be the worst. I wonder if it is just too much to really empathise because it hurts and they are powerless. This distress can come out as impatience, and almost suggesting the person is to blame for not doing x or y. Sometimes there is this blind faith that it’ll be fixed soon, our society expects fixes. When I had cancer, those closest to me were the least helpful because they couldn’t cope and those who were on the periphery of my life came up trumps; they had just that bit more emotional distance. Those who were close were better with being given distinct jobs so they felt effective and relieved. Yes it does feel like you are micromanaging people’s emotional health when it should be the other way round but we’re all fallible. I think also until you have had chronic illness you cannot comprehend what it is like truly; it’s like trying to explain exactly how childbirth feels. As for medical professionals, they are a human too and protect themselves like anyone else. To work with people day in day out whose life has become what you would dread for yourself a barrier can go up so yes, you have compassion but it takes a special person not to burn out if they focus on people’s true suffering. If they don’t have the magic wand for others, it means there is no magic wand for them.
Anyway, my veins have got noticeably worse on Pred so I now put my feet up in the afternoon to help the fluid back up and wear compression socks after that. All day is too sweaty but I may have to bite the bullet. Also, at 6mg I still had to be mindful of salt to stop swelling but not totally strict.
That's a new one - haven't heard that before. Where were you last "good"?
The bursitis is possibly surfacing because you are at a lower dose, it is a part of PMR. I find a steroid injection does far more for hip bursitis than oral pred and it does often let me manage at a lower oral dose. There are also exercises (stretches) that may help the bursitis.
No-one who doesn't have a chronic health condition can really understand - and everyone else is conditioned to believe that medicine can cure everything today. Even healthcare professionals ...
I had a steroid injection for my hip bursitis and it worked great! I also do the clam exercise which really helped.Also bio freeze works great before you go to bed plus a small pillow to take the pressure off your hip when you lay on your side.
I cannot speak to hip bursitis, or varicose veins (although my spider veins are now producing a bit more). I do, however, understand your experience with a lack of support from some folks whom you’re closest with.
My closest friend was more concerned that I was spending too much time on this forum, and reading research articles about PMR, because she thought I was too focused and “becoming” primarily my disease. She mentioned just this past weekend that during one phone conversation back in the earlier days just after diagnosis, that I talked about my symptoms, PMR, and pred the whole time (like there was something wrong with that). Little did she really know what I was going through....indeed PMR was my life and experience again. She went on to say at Christmas, when she made me dinner, I mentioned several times that I don’t usually eat carbs, but that I would that night, as a treat. Not still really sure what her problem was/is, but I certainly won’t be discussing in any detail at all, my condition, my new lifestyle/eating plan (I’ve lost 30 pounds, she has not and seems jealous at times), as I would rather share with people who are supportive rather than critical.
I will say that my OH has been very patient and supportive, but at the beginning it seemed to be difficult and challenging with everyone. I was going through many intense feelings such as fear, denial, and plenty of anger. Once I accepted my fate, things became easier, and I moved from total focus on PMR, to enjoying life and relishing when I would actually forget I had an autoimmune condition.
Sure hope you are supported as you travel on this journey, and always remember we are here for you and “get it” better than other who do not have a lived experience with PMR/GCA.
If the Bursitis does not improve over a few weeks do push for an xray as the prednisolone may have been masking something else going on in the hip. If this had been done for me it would have saved months of increasing agony. I have a hip replacement op next week. Initially I found everyone rallied but as others have said people find ongoing illness difficult to deal with and now visits are less frequent or in some cases i sense I have been quietly put in the corner so to speak. Others enquire from a safe distance via social media, doing but not doing in my view, it feels like being held at arms length as if I'm contagious. Others joke about it but it's far beyond a joking matter when I have been in intense pain for months. It's a bit better for me at the minute as I have more effective pain relief but I guess my humour has worn thin too. I was bereaved some years ago and the experience was similar, you really find out who your friends are. A dear friend who pops by most mornings as I approach my op date has really saved my sanity. I hope you get an answer soon, not knowing adds to the problem
Good luck with your hip replacement! I had had PMR for 3years when my hip started to get extra painful and asked GP in UK to investigate......2 hip replacements last year and NO MORE HIP PAIN. I was on 5 mg Pred for ops and continue to reduce very very slowly, now on 2 mg.
So glad to hear it all went well and you are now on 2mg. I'm 4.5 years PMR and have got down to 2mg 3x. Then I tried to go 2mg to 1mg before I found this forum. Now I know to go really slow and cut the damn tablets up! I'm at 4mg. I messed about with the prednisolone dosage at the start of this hip hell as I was under an immense amount of pressure due to losing a job and assumed it was a PMR flare. It's been an annus horribilus for me but I feel the end is in sight. The PMR almost feels secondary to all of this although I'm sure steroid use and paracetamol masked the hip deterioration. Good luck and thanks for replying.
I find reading these posts everyday really interesting and informative. Because of this Forum I don’t talk to my friends about PMR as much as I would without it. They should be grateful! But I so get that we look ok so get treated as normal, and wind up exhausted because no one helps washing up! Doh!
Hello I'm sorry you're suffering so much . I have a very painful hip too and now I'm reducing my pred the other hip is joining the pain party . I had an X-ray and all is fine so when I see the consultant next week I'm going to ask for an injection . Sounds like you should too . Not sure if anyone has mentioned this but the only way I can sleep is lying on my good side ( ha ha ) with a pillow between my knees and my arm draped over another pillow to ease the shoulder / arm pain . Like everyone else here , I've found that friends and family think they're being understanding but really don't " get " what we're going through . Thank goodness we have each other !
Hi there . I've been wanting to pm you so thank you for picking this up ! I've been doing Dorset lady's taper ever since my diagnosis in October 2018 . I had to start on 30 mg and have only managed to reduce to 14-13 mgs and it's really a struggle now , although it's not that dreadful the when I recall being hauled out of bed and dressed by my poor husband ! I can get off the loo and out of a chair ok too . I'm seeing the rheumy on Tuesday and am pretty sure he'll want me to start methotrexate. I feel I have no other option ATM . What do you think ? Thank you for commenting .
Has anyone looked to see if you have bursitis all over? Shoulder and hip bursitis are commonly part of PMR but even on enough pred to manage everything else they can flare up. I have never had shoulder bursitis but the hips make their presence felt intermittently - they do usually require steroid shots
I think the fact you needed 30mg to start with suggests there is a lot of underlying inflammation there - so it is no wonder you are struggling now. You probably don't absorb more than about half of your pred so you appear to need more. How long did you stay at 30mg? When I started, albeit on only 15mg pred, I needed almost 6 months for the bursitis in hips and feet to go away. If you weren't on 30mg long, there could be a lot of unresolved inflammation hanging around.
I sometimes feel like putting a post it note on my face saying just because I look better doesn't mean I feel better, probably just managed an extra hours sleep. My grown up children think I am making a fuss about nothing as do many of my students and friends. I don't want to look miserable all the time and have got used to putting on a smiley face, no one sees me going up the stairs on hands and feet or hears me silently groaning, how different it would have been had my wonderful husband still been by my side. As a ps I have just been put back to 30mg pred after tapering from 20mg to 8mg over 18 mths. I now have ankles the size of my head and a body that suits a marquee, but much reduced pain. It is now said obesity is more dangerous than smoking and I am more likely to get diabetes. Hey Ho I just keep thinking I would rather this than be on chemo.
Have you tried cutting carbs drastically and also salt? Salt and pred tend to encourage fluid retention. Carbs and pred are bad news for weight - pred changes how we metabolise carbs so taking them out of the equation does help. Also helps with the hunger pangs - fewer swing of the bloos sugar level.
Thanks very much for the advice, maybe toast and jam have not been a sensible option.I suppose the grab a quick sandwich will also be a thing of the past, but I am sure it will be worth it. X
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