Well, yesterday was my visit to the rheumatologist. But let’s go back to Friday when I rang the GP after seeing the pharmacist on Thursday. My right shin and left ankle, which were both badly bruised after a second fall in three weeks, had become swollen and yellow/white inside with what looked like pus but there was no break in the skin. The pharmacist was very concerned that it may end up ulcerated and told me to contact the GP if not improved the next day. Friday I phone the GP and battle with receptionist who needs to know exactly what’s wrong as they are running limited service and she’s only doing her job! A few hours later GP rang sounding very p’d off asking what was wrong. I explained I have Lupus, am on steroids, have fallen a week ago, badly bruised but now have egg shaped lump on shin and area on ankle that are extremely painful and feel about to burst but no break in skin. “ I think this is just normal bruising and you’re just not used to it and it should resolve itself” she says. No it’s not it’s a huge lump and it looks like pus and pharmacist said to phone. No it’s probably just normal, I can send in photos but she won’t be looking at them as she’s going home someone else will. End of chat, I sent photos in immediately. 3 hours later still no reply so I phone, speak to different receptionist. She looks, oh yes they arrived after the doctor left she’ll take to another doctor who phones me 5 minutes later. He says it looks very painful and prescribes antibiotics and strong painkillers saying he’s worried it may ulcerate. Husband picks up medication at 6.30pm as directed.
Monday I see consultant. Went with my list and photos as haven’t seen him since early this year. Since then I’m unable to walk up town (4minute walk) and use scooter etc. Tell him about falls and show photos and explain about GP. Takes me to examination room. They are not bruises but haemotoma. The feeling like they were going to burst was the pressure from inside. Unable to get out, the blood has then tracked down my leg into my foot and ankle which has produced what looks like another fresh lot of bruising. Normally he would pierce the spot but he knows that if he does I will have an ulcer which may never heal and won’t risk it. Says it must be very painful. I was sent for X Ray, no damage to the bone but there was a tissue mass over it. Back to the consultation. I tell him a scar from a hysterectomy when I was 36 has started repeatedly weeping and is very sore, I was concerned it was related to the steroids. He asked what dose I was taking. 10mg a day which I have been for a year or so. He looked a bit shocked and there was lots of “Oh, um. Er, oh, right. I am SO sorry I haven’t been able to see you as often as I would have liked. We need to wean you off the steroids ASAP starting tomorrow. But they have helped you haven’t they?” So it sounds to me that I have been on this dose, higher than it should have been and longer. I keep on saying here on this forum and to my husband “ why am I on10mg when lots of people are on 2.5?” He said both the hydroxychlorequin and Prednisolone have an aspirin like effect on the blood making it thinner! The plan is to go down to zero in 8 weeks. The last time I went to zero I had a massive flare. He wants to see me in 8 weeks but says I will really have to push them to make the appointment happen. What the hell is going on? I have been having my prescription just repeated and repeated with no review and now we have to keep pushing for a required appointment. What a drama! Sorry it’s so long.
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Sounds worrying but glad at least you did get seen and presented your case. Consultant seems to realise he should have seen you far more often and hopefully will do now. How do you feel about reduction of steroids?
I’m really worried because the last time they stopped them within a day everything got worse and after a few days I could hardly get out of bed and was in a lot of pain. I didn’t think they were controlling the pain and thought I would be fantastic after stopping them. It was a real shock. Just have to see what happens I guess.
I'm not saying you should be on 10mg - but I think he has overegged the effects of low dose pred (10mg is low dose) - I've been on 15mg and above for the last 2 years (thanks Covid stress) and no problems like yours although I do get some fun bruises around my ankles from shopping bags!
Is your hysterectomy scar a smiley-face one? I get soreness and weepiness along my c-section scar - it is usually because it is in a crease and gets a bit sweaty. It gets worse if it gets infected with skin bacteria/fungus which we are prone to when on pred. My GP provides creams, one bacterial, one antifungal, which clear it up as if by magic. I used to get trimovate in the UK but I don't know if it is still available.
My scar is a straight one in the bikini line but the same scar has been opened at least once as I had endometrial tissue removed several times then the hysterectomy. I am fat so the belly fat overlaps. I use talc every day but the edges have started stinging and becoming raw and painful then it spreads right across. I just use suedocreme and after a few days it goes but it is sore. I realise 10mg is a low dose but I have terrible problems with bruising. You’ve probably seen me saying here I look like a self harmer. I thought the whole idea was to reduce it to the lowest level to keep you okay. He told me that at the beginning but we seemed to stop at 10. Mainly because the nurses were just taking my calls from an answer machine and sending them out. But he was the one signing the prescription so he should have checked. Personally I can’t wait to get off them. I look like a chipmunk with my round face! Lol! I just don’t want to get worse if I stop. Fingers crossed. X
Yup - same problem here! I'm not particularly fat but it has caused an overhang since it was done and in those days I was definitely not fat! Talc makes it worse, vaseline/sudocreme is better - I used a strip of tissue to keep it dry.You are absolutely right, you SHOULD be reducing the dose slowly to identify the lowest dose that works if you need any pred at all and ideally get off it altogether but they really have left you so long it will be harder though by no means impossible. When it comes to tapering off pred the PMRGCAuk forum knows all about it! And we know all about the "self-harmer" arms!
Many of us struggle to get the medics to pay attention to tapering schemes, either that or they try to rush us off which is equally bad. So we have got very good at DIY tapering
I am since taking the steroids and my reduced mobility. I’m just over 15stones and only 5’4”! It’s upsetting. I used to be a Nordic Walking instructor, did the weights, Iron Ladies etc. I really get depressed and mourn my old self. I’ve always been prone to putting on weight though and have battled with it all my life. I’m hoping things will change when I get the steroids out of my system. 🤞but at 65 I think it may be time to be kinder to myself. I’m on slimming world plan and have lost 9.5lb but it’s a slow process for me. In that same time my husband has lost 2st 2lb. Grrrrr.
It is slow however you go about it when on pred - but SW is maybe not the best plan unless it has changed from the rather carb-heavy approach it used to use. Cutting carbs drastically does work - and for some people it can work fairly quickly. My weight loss was slow, 2.5st in 18 months - MrsNails on our forum lost about the same as your husband in a matter of 6 months I think.
I would complain to the practice manager. Put it all in writing as a formal complaint. I know GPs are under pressure, but yours was negligent. Mine just refers you on, which is fine if you don't then have to wait a year for an appointment!
Like everyone else here I am horrified at the sheer uncaring negligence of most GP’s these days. I hope your legs improve quickly now and you get some relief. Obviously I can’t advise you on reducing steroids but I will tell you my story. I was put on 30mg of prednisolone in November 2019. Over the next few months it was reduced to 10mg. At the beginning of the pandemic my consultant told me to reduce to 5mg, then stop over the course of two weeks. Unsurprisingly I flared. Since then, on the advice of a lupus nurse, I have been reducing at half a mg a month and I’m now down to 2.5 mg. I hope to stop entirely over the course of the next few months. Some months were harder than others but I persevered. Good luck and best wishes.
Thank you. The flare up is what I am worried about because I was literally losing the will to live! Sounds dramatic but I was in a very low place. If I got to 2.5 I would accept that. That is what I expected and a lot of the people here are on 2.5. The other side of me wants to be free of the steroids as I have gained a lot of weight, but the worse is my face which is so fat and round compared to the old me. I’ll get there eventually I’m sure. It’s been just under a year since I was diagnosed, I think. So it’s all relatively new to me, the treatment aspect of it, as before I had no medication at all despite symptoms and pain. This forum has been invaluable to me. I am so grateful for other people’s advice and insight. ❤️
Oh bless you. I am so terribly sorry. It is negligence. I understand exactly how you feel as a GP was really cheesed off having to phone me when I had a nosebleed for 8 days. She was dismissive and said it was anxiety??? I ended up 7 hours in A&E getting my nose cauterised 3 times due to what they believe is a scar from Bechets ulcer. I know that they are under stress but honestly it is not good enough. I send you big Cwtches and hope that the dreaded steroid withdrawal will not be too awful for you . Thank goodness you saw the Rheumy when you did xxx
Thank you. I know! The timing couldn’t have been better. I keep asking myself why is everything such a struggle and battle to get basic health care? Honestly I am not a moaner, phoning the doctor all the time. I flipping hate it. But the attitude of this doctor was terrible. She was curt, dismissive and downright rude. I am no shrinking violet but I was just stunned into silence! You would think that at 65 years of age I would be able to tell if it was a “normal bruise” or not.you would think that a PHARMACIST would be able to tell too, after all those years of training. But no, she knew better without seeing it. 🤦♀️🤷♀️🤦♀️🤷♀️🤦♀️
It is truly shocking. I am all for GP’s doing telephone consultations for minor issues but some things need eyes on and hands on and they need to respect the patients requests. Xxx
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