I’ve had a very rough few months and things are going from bad to worse ! I started IDACIO in January (thinks it’s generic version of Adalumimab). At the time nothing was mentioned of leg ulcer I have which is taking such a long time to heal. However at my recent rheumy appointment when they realised I had leg ulcer I was immediately taken off the drug as apparently the immune suppressing IDACIO could cause ulcer to become infected. I was devastated because I was just starting to feel an improvement in my RA. My steroid drugs have also been reduced to 2.5mg per day. Previous to IDACIO I had been on methotrexate for 10 years and it stopped working and also gave me breathing problems. I am 74 yrs old.
Since treatment has been withdrawn my blood readings have all gone up, my last rheumatoid factor reading was 38. I am in such extreme pain and unable to do hardly anything. My shoulders, arms, hands are a nightmare, as is spine/neck and knees.
I should like to ask if anyone who has a leg ulcer is receiving treatment for RA, and if so, what drug they are taking. You are always a mine of information in this group and I’m hoping for some feedback. Thankyou x
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Flatstanley
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I don’ know about RA drugs, but I do have experience of leg ulcers (my mum, and several neighbours). Make a BIG, BIG fuss about getting the best possible care for the leg ulcer and the absolute fastest healing. That’ will be the best way to be able to move on to tackle the RA. In the meantime have you discussed the starter drugs like hydroxychloroquine that are not immune suppressant?
Are you getting something that sounds like this?
Early endovenous ablation of superficial venous reflux, in addition to compression therapy and wound dressings.
If not, ask why not!! At 74 you need this dealt with.
Hi Helix, I was having compression bandaging on both legs but the bandages were pushing my RA swollen kneecaps out of place. I was in agony, unable to walk. Hence the compression was stopped and I have been waiting 4 weeks now for tissue nurse to revisit the surgery to decide what to do. Meanwhile I have been left to put dressings on ulcer myself which is very difficult bearing in mind my hands are so bad and I can’t bend my knees. I feel a bit lost in all of this but without my RA drugs life is unbearable pain wise. I am hoping for call back from rheumatology tomorrow to discuss if I can be given another drug.
I had to go to my GP surgery every couple of days for 4 or 5 weeks to have the nurse change the iodine dressings on my leg ulcer. They didn't think it needed a compression stocking.
It may require doppler testing to ascertain to cause and then definitely input from a tissue viability nurse to make treatment descisions as ulcers + RA are not straightforward. Good luck
I had a doppler test back when I had the leg ulcers. My left leg was excellent for my age and the right borderline but no cause for concern. Though obviously not as accurate as the more complex apparatus used back then, the equipment the podiatrist used last week to test my feet showed similar results. The good thing is that my current foot ulcer, and the old leg ulcer, are/were on my left leg which has the better circulation so should hopefully aid healing.
I'm surprised how fast my RA has flared this time...just a couple of days after stopping rivoq. It took a couple of weeks after i stopped baricitinib for the leg ulcers and it was never as bad as what it is now. Could be down to having only started rivoq 6 weeks ago. My foot ulcer is due to a callous breaking down on the balls of my foot,
I had Doppler test and it was after this that the decision was made by tissue nurse to have compression on both legs. I did say that I thought I would hit problems due to my very painful knees and feet, but to no avail. After the first week I was virtually unable to walk, my kneecaps were literally being pushed up and I was in agony. Also the fluid was pushed up into my thighs. I when I had my rheumatology appt my rheumy was very unhappy about the state I was reduced to, hence the compression was stopped. I am still waiting for return of tissue nurse to decide what to do.
Sorry to hear you having problems , they sound awful, and I'm not surprised your rheumy weren't happy. Hope the tissue nurse sorts out some suitable treatment for you soon. Let me know what she decides.
Sorry to hear that, I know how you feel...I had to stop my meds due to a leg ulcer a year or so ago. Not only that, but I'm currently off them again, this time for a foot ulcer. Even though I've only stopped meds (Rivox) for a week my RA is worse than it was with the leg ulcer when I was off them for at least 6 weeks and was taking Baricitinib back then.
I'm having iodine dressing changed every 2 days by the district nurse and have an appointment with the specialist podiatry team on friday. The ulcer is infected and I'm on antibiotics, but it's not too bad.
Can't begin to tell you how much fun I'm having hobbling around the house on my heel. I'm just keeping my fingers xxxx the thing heals up ok like the leg ulcer did.
Sorry you also suffering wishbone. I have lymphodema and banged my leg, hence the ulcer. I think it was probably a bad idea to compress my legs because my knees are very damaged and the tight bandages were just ghastly, I could barely walk. I have been left for nearly 4 weeks now, no RA drugs and no ulcer treatment. I have been waiting patiently and didn’t want to make a fuss but feel I can’t go on like this as my pain levels are unbearable. I have never had iodine or similar dressings, I will definitely be asking about this now, and thank you so much for telling me about your treatment. X
It was 3 years ago that I had the leg ulcer...how time flies. When i first went to my GP about it he had a look, said it was a venous ulcer and sent me home with some steroid cream to put on it. Not convinced by that i posted here and had my doubts confirmed by members who advised me to not to let it go at that so i phoned the surgery and asked to speak to a nurse. Glad i did as she told me that steroid cram should not be applied to an ulcer and made an appointment to see me the next day and subsequently recieved the regular treatment described in my post above.
Being left for 4 weeks is not on in if the treatment i recieved, and what members here advised, is anything to go by. Time to speak up me do think.
One more thing, ulcers must not heal too fast, hence a different type of dressing applied if this is happening, so should be treated by someone experienced with treating ulcers.
I know, but they've told me to keep any pressure off the ulcer and to stay off my feet as much as I can...easier said than done. I'm off to podiatry tomorrow, not sure what they'll do other than give me the sandal that will help keep pressure off the ulcer, so getting around should be easier.
I'm sorry to hear about your situation. The NHS is as such now where patients really need to push to get good treatment. Me and my family have had bad NHS treatment so much so that one of my relatives went private to get better faster treatment. If you have the money yoy could consider going private if the NHS doesn't get a move on.
I would get back in touch with your surgery and ask for an appointment with the GP and tell him/her how long you've been waiting and your level of pain as you really need treatment. It's ridiculous that you've been left like this. Hope you get the care you deserve Flatstanley.
I am sorry to hear you are suffering. I would definitely start pushing and insisting on a review re managing the ulcer and your pain. Perhaps your rheumatologist can do an urgent referral to the hospital tissue viability nurse. I have a wound on my ankle, from the spike of a gardening tool which tore my skin. I’m on steroids and clopidogrel to thin my blood, so skin is like tissue paper and bruises easily. 4 weeks on it is not healing and I’m attending the local urgent care centre for dressing changes 2-3 x a week. I’m getting slightly anxious that they will ask me to stop my immunosuppressants. My feet at the moment feel like I’m walking on broken bones, so I cannot afford for it to worsen. Hope you find a solution to manage your pain whilst your ulcer heals 🤗
Maureen, you are also going thru an awful time. I fear rheumy may stop your drugs when discovering your ulcer.
This is dreadfully wrong, Please call the surgery and insist on being seen or 111 due to the level of pain you are in. Surely no health care professional would want you to be in this state. I’m incensed on your behalf and if I could would advocate for you I would. Do you have friends, family or neighbours that could support you?
Stills, you are right, I have been treated badly & im very upset about it. Never have I suffered so much pain and it’s impossible to get joined up care. To add insult to injury my Zetuvit plus dressings were removed from repeat prescription and as it takes 2 weeks to get them re-ordered I have had to pay out £45 for a weeks supply, it’s just hopeless !
I worked in a leg Ulcer clinic. It needs to be decided if its a venous ulcer or arterial. If its the latter then no compression. Doppler is most important here as referral to specialist is needed in severe cases. Most ulcers are venous. Therefore compression to support the veins in sluggish circulation and exercise regularly even to point of just ankle exercises with severe RA. You only need iodine/silver dressings if wound infected. Ulcers heal from outside in. And there are many dressing where seaweed is an ingredient and works well. I hope you get sorted soon.
Sorry you're going through this, I'm on etoricoxib, lefluminode, gabapentin, prednisolone, hydroxychloroquine & until a month ago metoject but now on sulfasalazine instead.
I had a leg ulcer last year, it was getting bigger & bigger & so, so painful, no one said to stop any meds just that it would take longer to heal, I had so many creams including steroid creams, I was referred in the end to dermatology urgently, the nurse at my surgery started using actilite dressings which contain honey, at last it started to heal up, I know its expensive but in the long run would have saved them money.
I'm sorry to hear you're battling so much and not getting the help you need. There is something I absolutely swear by for infections called Manuka honey. It has extremely high levels of antibacterial and anti-inflammatory agents in it. It is made by the bees who feed off the tea tree plant in Australia and the aboriginal peoples always relied on it to treat infections. Sometimes nature knows best, and it is soothing and calming on the skin. If you can look it up on Google, you can read how it has been used successfully in treatment of leg ulcers in scientific and medical trials. It is available from health shops, and the higher the number on the jar, the more potent it is. it's expensive at but it lasts a long time.. but it's worth it if it helps. I hope this helps you and God bless you🙏x
I would definitely get the ulcer cleared up first. My mother had a leg ulcer on her shin. The district nurse failed to turn up to dress it. It burst and was spouting out blood and she was admitted to hospital as an emergency. In there, she caught a serious infection and subsequently died.
Paw Paw, which is purely the pulp of the papaya fruit is excellent for healing any sort of cut, burn, bite, abrasion. I bought it in Australia but you can get it on the internet. A very few places like beauticians sell it in the UK, but at an inflated price ie £7 instead of £2 for a tube. You could trying buying papaya at the supermarket (Waitrose) and mashing it up. It really is excellent and healed a stomach ulcer for me after eating it first thing for two weeks.
Since your post I’ve been worried for you and hoping for a positive update. How are you?
You are very kind Stills for thinking of me, Thankyou. I saw surgery nurse Tuesday and she just said she was waiting for tissue nurse to come back to her, so I’m back to attempting to apply dressings myself. The ulcer is on back of leg at base of calf, so I have to bend knee up in order to place dressing pad, then pull tubigrip bandage over & up the leg. It’s a complete nightmare as I can’t bend knees and my hands are in great pain. Hubby has to hold one side of pad in place, me the other then struggle with tubigrip. They are just not taking into account my severe RA ! And how low my capability is. It’s very upsetting considering the compression bandages I was subjected to have crippled me
I’m glad you have your husband to help at least and you sound strong. I know what you mean by lack of joined up care. no department seems to work in conjunction with another and they all seem to have different end goals.Recently at a physio appointment for a leg injury not caused by Stills but unable to heal because of Stills I was asked to do exercises that were physically impossible for me due to pain and immobility in different joints. When I explained the physio said are you refusing to do the exercises!!!
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