Skin tear

[Kazwilks]

Hi all Haven't posted on here for a few years now but still like to read posts on how everyone is managing and hopefully coping with their pain. I'm on Benepali injections and feel like I've been given a new lease of life, my problem is steroids I still take 5mg every day and have done for the past 6yrs. My rheumatologist tried to get me reduce the dose but I honestly cannot. I managed to get to 3mg a day but all my pain started coming back, I honestly felt like I'd been hit by a bus. He agreed for me to stay on 5mg long term. My problem now is my skin is very thin so the least bit knock I bruise. The other day I caught my leg getting out of the car, I didn't dare look as I knew it was bleeding, my husband cleaned it up and bandaged the gash, it's still bleeding now 3 days on. I know this is a side affect of long term steroid use, I can't stand the thought of reducing again and been in agony. I would like anyone's thoughts on this, or if anyone is having the same issues. I'm 61yrs old but have the skin of a much older woman. Take care everyone hope you all are living your best lives x

[Runrig01]

I’ve been on steroids for 12yrs due to having polymyalgia & GCA where steroids are the only treatment. Unfortunately 5yr ago I had a severe stroke at 52, due to an adrenal crisis, the steroids had atrophied my adrenal glands. I have severe adrenal insufficiency as a result, a consequence of taking steroids. Apart from insulin, cortisol is the only other hormone you can’t live without. My body is incapable of making its own. It means any stress good/ bad can have me becoming very unwell, and needing more steroids. That could be hydrocortisone tablets that take about 30 mins to ease symptoms. However if I have vomiting or diarrhoea, or sustain an injury or illness, I carry an intramuscular steroid injection at all times to administer to buy time till I get to a hospital. My hubby and daughter are trained to administer, and I’ve had to use it on multiple occasions, mainly due to migraines with repeated vomiting. I wake with no cortisol, so don’t have the get up and go, takes me 2hrs for the meds to kick in. If I wake in a flare, I generally have low cortisol symptoms too, which starts with nausea, headache, lightheadedness, then progresses to slurred speech, staggering and eventual loss of consciousness if I don’t updose promptly.

So it will come as no surprise that I urge people, if there is an alternative, use that. I know of others with adrenal insufficiency, purely from using steroid inhalers. There is no way of predicting if you’ll get adrenal insufficiency or not. The only reason I’m still here is my stroke was witnessed, and I was successfully thrombolysed. Much as I recovered well physically, my memory is shocking, and I rely on apps and prompts on my phone. I was on low dose of 4mg of prednisolone when I had my stroke. I’m told the body only makes the equivalent of 3-5mg a day to do its daily functions. Unlike GCA, with RA there are other options, so I’d definitely explore them.

[Kazwilks in reply to Runrig01]

Thanks for the reply. I am really worried taking steroids long term. In my mind at the moment, is it's only 5mg so it can't be doing me any harm, I really do know that's not the case. I've always had a strong pain threshold and cope with a lot, RA pain is beyond unbearable I can't stand the thought of going back to not been able to get out of bed. I have not seen my rheumatologist for nearly a year now so I am due for assessment, obviously nhs is still playing catch up so god only knows how long it will be before I get to see him. I will ask if there's an alternative as I feel the Benepali is not working as good as it used to, I might be coming amune to it. Take care and thanks

[Runrig01 in reply to Kazwilks]

I’ve also used benepali for the last 7yrs. In 2021 my rheumatologist did a whole spine & pelvic mri, which showed my benepali was still working at keeping inflammation down. It turned out to be breathing issues, that once treated the other pains settled. I have ankylosing spondylitis, I take benepal for my spinal symptoms, and methotrexate for my peripheral symptoms, as my AS affects most joints. My ribs and sacroiliac joints are fused, which is partly why I have breathing issues.

Unfortunately the danger of prednisolone causing adrenal issues is at its highest at the lower doses. When you’re not getting enough for all the daily functions.

I do get the pain issue, I’ve always been told I have a high pain threshold. However I currently have a flare up of severe osteoarthritis in my knee from overdoing it on holiday, but also managed to get tendonitis in the knee and enthesitis at the ligament attachment. So I’ve been housebound for the last 8 weeks. I fell early July due to my knee buckling, but gp kept insisting there was nothing wrong with my knee, and it was coming from my back. So had to have CT and mri of spine, which proved her wrong. Ended up in A&E with pain 8/10, and urgent mri ordered. I was sent home to wait, ended up being 9 days later, and has taken 6 weeks to get the report written, so that my rheumatologist can treat my knee. Thankfully have an appointment for Wednesday for steroid injection. However I’ve had to purchase a wheelchair, to get out at weekends when hubby is off, as I can only walk 120 or so steps before the severe pain stops me in my tracks. Sorry for long reply, but I do get it. 🤗