Anyone on biologics and suffering leg ulcers

[Runrig01]

hi, so last July I injured my ankle when the spike from a tool I use on the allotment, spiked my ankle. Due to being on steroids and antiplatelets, as well as Benepali and MTX, the skin tear didn’t reattach. I now have a leg ulcer, as well as another on my shin, caused by my nail ripping my skin, when taking my leggings off.

The nurses and gps at my surgery, keep saying it’s fine to continue immunosuppressants, as long as I don’t have an infection. I have only had one infection that was recently and required 2 weeks of antibiotics. I’ll be honest I’ve put off phoning my rheumatologist, as I dread him saying to stop everything, I’m already really struggling having missed 3 weeks.

Does anyone else have leg ulcers and use biologics or dmards. Have you continued with them. I enjoy swimming but haven’t been able to swim since last July, and wonder if the wounds may heal quicker off my meds. I’d appreciate others thoughts.

[Chrt]

HR.01 sorry dont know anyone on biologics with ulcers but do know *sterile manuka honey dressings* have been used in hospitals & clinics for leg ulcers with great success. Maybe you could ask dr/nurses about them? Hope you can get them to heal soonest

[Runrig01 in reply to Chrt]

thanks, yes I keep meaning to ask about the manuka honey dressings. Will mention it on my next visit. 👍

[Monkeysmum in reply to Runrig01]

Sorry to hear about your ulcers Maureen. Just wanted to add another vote for the manuka honey dressings. I had an ulcer on the tip of my little toe several winters ago which developed from a chilblain (I have Raynauds). I wasn’t on biologics at that time though, just Methotrexate. Anyway, it just wasn’t healing at all until the practice nurse gave me some manuka honey dressings to try, and then they worked a treat, so it might be worth a try. 🤞Xx

[Mmrr]

I don't have ulcers, but did have a large abscess in my groin. I was advised by rheumatology to stop Leflunomide and Filgotinib until it had healed. But after a week or so I was beginning to feel unwell RA wise, so I restarted meds.The abscess wound took 8 plus weeks to heal, but finally closed over last week.

To be honest I started doing my own thing, based on my nursing experience of many years ago. Rather than change the dressing every other day, using no cleansers and just spraying hot shower water on the hole, I started washing the ulcer with clinisan soapless cleanser, drying and dressing every day. It healed quicker when I used my own regime.

I haven't stopped meds for any other invasive techniques either, all wounds have healed slowly, but they have healed without infection.

[Runrig01 in reply to Mmrr]

Thanks Mmrr, it’s Maureen I changed my username 🤪. Like you I’ve been using my nursing experience to see me through. I’ve missed 4 weeks of mtx and benepali, as I’ve been certain for a while the wounds were infected. Being on immunosuppressants as you know, it’s not always obvious due to my meds and steroids masking symptoms. I ended up insisting the nurse get the Dr to review, and thankfully they agreed with me, although the nurse didn’t. They took a swab and gave me flucloxacillin. The swab came back with pseudomonas so I then needed ciprofloxacin for a week. I stopped the week before I started antibiotics, and I’ve stayed off a week after, to check it didn’t flare up again. I did take mtx on Wednesday, and my Benepali this morning, as I’m visiting No my daughter in Leeds, but in extreme pain. I have a sterile saline spray, as well as sterile gauze to clean the wounds, and have autrauman and inadine to use as needed. The nurse dresses it weekly, which doesn’t last so I do another mid week.

Due to having the severe stroke, when I had my adrenal crisis, I can’t use nsaids instead. I think my rheumatologist would panic and say stop everything, despite having 1 for 8 months with only this recent infection. They are both small, one is 1.5cm in diameter, rhe other 2cm x 1cm.

I think I’m going to continue, and see how they go. They want to start bandaging them, as I’m getting a lot of oedema in that leg. If they look like they are not progressing, I may take a break, but I’m hoping now the infection has been treated they will start healing again. I normally swim twice a week, but haven’t been able to for the last 8 months.

[Mmrr in reply to Runrig01]

Hi Maureen, I love the name change to Runrig, did you like music from the group ? Hopefully the ulcers will heal now the infection has been treated, eight months is along time to be away from swimming, apart from having to deal with wounds whilst being immunosuppressed.

I have another large cyst on my other groin, exactly the way the abscess developed. I've been treating it myself with magnesium sulphate poultices, there was a little discharge a few days ago, but it has healed over again, a hard lump. It's not hot, nor inflamed looking, I'm hoping it just disappears.

It's a fair fecht as we say in Scotland.

[wishbone]

I had a couple of leg ulcers 4 years ago. The most stubborn one required several weeks of treatment by my surgery nurse. I was on Baricitinib at the time and rheumy told me not to stop unless it got infected. It might be best to ask your rheumy though.

[Jackie1947]

Last year I ripped my leg deeply on a metal bar.A&E stitches,every other day to see practice nurse .It took 2 months to heal completely. If after one month if not completely healed which one area of my cut didn't it was referred to as an ulcer although technically not . I didn't have to stop my weekly injections of Benipali. Hope you heal soon.

[Runrig01 in reply to Jackie1947]

yes I’m similar, mines are classed as ulcers now, although technically not. They are both trauma wounds, one just bring my ginger nail tearing the skin. It scabbed over beautifully, unfortunately I wore wooly tights one day, and it pulled the scab off, then got the infection in it. I’m sure the wounds have been infected since early January, when the pain suddenly intensified in both wounds, feeling like acid was being poured on them. Plenty wound articles state wound pain and delayed healing are often the only signs of wound infection in the immunosuppressed. Unfortunately for 8 weeks the nurses kept dismissing me, until I insisted a Dr gives their opinion. The swab came back with pseudomonas, which is found in soil. I had a 3rd small wound from a dogs claw, which they reckon was the cause. That happened early January so would tie in. I’m glad to hear you were able to continue your benepali. I’ll keep a close eye on mine, but restarted my benepali yesterday, as really struggling. I’m currently visiting my daughter in Leeds, do need to get on top if the pain. Thanks again 👍

[Jackie1947 in reply to Runrig01]

Poor you that's some journey. The last week before the dressing came off I took it off in the day to get air to it and it did the trick. I did cover it at night with a bit of cut off sock so sheets wouldn't rub it. I now have a smily scar 😀

[wishbone in reply to Runrig01]

My ulcer began as an innocuous looking small dark spot just above my inner ankle, which gradually got bigger and turned into a venous ulcer as the nurses called it...it left quite a scar.

[Runrig01 in reply to wishbone]

did you stay on biologics? Mine is tight on the inner bony area of my ankle. Had a tool for the allotment with spikes. I’d placed it behind me then accidentally stepped back onto it

[wishbone in reply to Runrig01]

That spiking must have hurt more than a bit! I'd only recently restarted Baricitinib after an 8 week break due to a sinus infection, when I noticed the dark spot above my ankle. Treatment went well for the first 2 - 3 weeks so much so that the nurse discharged me and I continued changing dressings at home. After a week or so the ulcer wasn't looking too good so I had to go back to the surgery for more treatment. It was then that I didn't want to risk infection so took the decision to stop the Baricitinib.....not 100% about this, but pretty sure I heard that biologics can slow -up the healing process which is the last thing you want with ulcers I would have thought. Not sure how long I stayed off the Baricitinib, which leaves the body within a few days, apparently....probably just a couple of weeks.

[Runrig01]

my benepali takes a couple of weeks to clear from the system. I know biologics do delay healing, hence why it’s probably still not healed 8 months on. It is getting there, and is probably now 1.5cm in diameter. I just restarted benepali to cope with being active whilst visiting my daughter, but if healing stalls again I may stop again. Hubby was horrified when I done it, our allotment is just behind our garden, so I quickly hobbled home, cleaned, steristripped and dressed it, then went back to allotment. Unfortunately I’m on antiplatlets since my stroke, so it kept bleeding, stopping the steristrips sticking, so I lost the skin that was torn. Never thought 8 months later I’d still be needing dressings. Missing my swimming 🤗

[Garnacha]

Hi I had a small patch of very dry skin on the outside of my knee, I caught it one day & it bled quite a lot, saw the gp who said it looked like it could be precancerous & gave me steroid cream, this didn't work & it got progressively worse, was given umpteen different creams & eventually referred to dermatology.I was in absolute agony as it got bigger & bigger & even a breath of wind hurt, kept ringing the drs & eventually saw the nurse who put the manuka honey dressing on, the difference was unbelievable! I had to use it for a few weeks but it started to heal, by the time I actually saw the dermatologist there was hardly anything there.

I've now got medical grade honey in a tube from amazon just incase I ever need it again.

Hope you get some relief soon, oh forgot I was on methotrexate, hydroxychloroquine, etoricoxib & lefluminode at the time x

My leg

[Runrig01 in reply to Garnacha]

oh that looks painful. I’ve ordered some honey dressings off Amazon, so I can maybe take them in and ask them to try. Hood to hear yours healed quickly with the honey. Here’s a photo of my 2 ulcers, they look worse and bigger in the photo. The bottom one is 1.5cm in diameter and the other is 2cm x 1cm. In so much pain that I decided to restart my benepali and MTX, so fingers crossed it doesn’t stop healing.

Leg ulcers

[Garnacha in reply to Runrig01]

Aaw you poor thing 😔 mine was in 2019 so thankfully all gone now 🙏 but I can vividly remember how painful it was especially as it was where you bend your knee.The dressing was called actilite but I couldn't find it on the Internet so bought the activon (see picture below)

I know actilite is expensive but when it works so well I don't understand why they don't use it at the start 🤷‍♀️ I'm sure it would save them more money in the long-term

I really hope you get some relief very soon 🙏 😘 x

Manuka honey