Gutted 😢: I posted recently about an ulcer which has... - NRAS

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Gutted 😢

Chester02 profile image
31 Replies

I posted recently about an ulcer which has developed on my ankle. Got it checked by GP yesterday who told me he thinks I need to come off my Benapali whilst ulcer is healing as it can hinder healing or cause further problems. I rang my Rheumy nurse today for clarification and yes I do indeed have to stop Benapali! I’m so gutted as have felt wonderful since mid December. I am only able to take Diclomax now which is something but feel so fed up about it all. My Rheumy nurse was very understanding but stressed how important it is to focus on healing the ulcer as they can cause some nasty problems. Obviously because of RA it is likely to take some time to heal if it does at all. Why can’t I just enjoy a bit of a reprieve from RA without something so trivial (a tiny blister from new trainers) causing all this upset? I could just scream!!!! Sorry for post but just need to say how I feel to people who understand!

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Chester02 profile image
Chester02
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31 Replies
allanah profile image
allanah

I understand. I was brilliant on tcz then had an op and had to stop. Good news if was just as effective when j restarted it a month after healing. Let your ulcer heal! See if they will let you used it is another biologic again after xx xx mainly ...get well soon xx

Chester02 profile image
Chester02 in reply to allanah

Thank you Hun. Just been reading your post that came up. Disgusting! Hope you get a date real soon xx

allanah profile image
allanah in reply to Chester02

Don't know why it came up.it was years ago and yes it went really well lol ! And I'm back on tcz!

Chester02 profile image
Chester02 in reply to allanah

Oh ok. Hope it all went well for you x

Redrooster profile image
Redrooster

Maybe you have enough stored in your body that will allow you to continue feeling well. And hopefully ulcer may heal before effect wears of too much. Great you have found something that makes you feel well.

Chester02 profile image
Chester02 in reply to Redrooster

Thank you x

Gigi71 profile image
Gigi71

I had an ulcer last year for two months. I dropped a round paving slab as it passed my shin it landed on my foot, I was rolling the slab. I had to come off my Humira and mtx. It caused a haematoma on my leg and a cut on my foot. The cut healed fairly quickly, the haematoma turned into an ulcer. I was having it dressed every other day and eventually sent to a Tissue Viabily clinic for a Doppler test, I then had a compression wrap which helped it heal much quicker. Once healed and a blood test done was allowed back on my meds, was just starting to feel the need for them. I take low dose pred so believe that helped me through. I do yours heals soon. All the best. X

Chester02 profile image
Chester02 in reply to Gigi71

Thank you that’s very encouraging and just what I wanted to hear x

Gigi71 profile image
Gigi71 in reply to Chester02

I can't stress the Point of having it looked after, I have had triple foot fusions, so in my case I need compression for life now, I am a good deal older than you and at my 6 month check at the Tissue viably clinic they also tested my right leg and need compression on that one too. Instead of the wrap which is easy to use, but on the bulky side, I opted for compression stockings, they came to the knee in black, as it was winter. My goodness they are hard to get on, they gave me large instead of medium and and a lighter gage, would never have got the others on with my dodgie hands. I curse the day I moved the paving slab, wouldn't mind my gardener was to due a couple of days after. Just impatient. Xx

Chester02 profile image
Chester02 in reply to Gigi71

I’ve not heard of compression stockings for ulcers. I hope I won’t need that xx

Gigi71 profile image
Gigi71 in reply to Chester02

They normally use bandages if the Doppler test shows compromised circulation, otherwise the ulcer won't heal, also have to elevate the leg or foot in your case as much as possible. If sitting try to move your feet to keep the blood moving, to aid healing. I couldn't face Bandages hence had this Wrap which I could take off at night and for showering. They are very expensive so not offered to all. I don't have an ulcer now but they say once you've had one can happen again. Xxx

AgedCrone profile image
AgedCrone in reply to Gigi71

You can get zip up compression stockings....don’t know if they would be suitable?

I had to wear a compression sleeve when I had lymphodaema following breast cancer. It started to get very ‘Holey’ where my finger nails tore through it, until I got a plastic sleeve that you could just drag the compression sleeve over - then pull the plastic one out.

Gigi71 profile image
Gigi71 in reply to AgedCrone

I bought some AC but can't pull the sides of the Zips together, don't have big legs either, just stupid hands. I also opted for full toes as they would swell with toeless ones, dodgy feet too. I not convinced my legs need them all the time, especially my right leg as it seems to make my nerve pain worse in that leg. Xx

AgedCrone profile image
AgedCrone in reply to Gigi71

Have you tried putting the hook of a coat hanger into the zip tab?

That is how my generation used to pull up the zip in their jeans... after we had sat in a bath of water wearing them to shrink them to fit us !

Gigi71 profile image
Gigi71 in reply to AgedCrone

Thanks I remember too, always a slave to fashion. !! Will give it a go. X

stbernhard profile image
stbernhard

I do feel for you Chester. Hopefully your ulcer will clear quickly and you can get back to feeling human. Go somewhere remote and scream you head off. I've done it (not knowing there were people nearby) and it made me feel better. All the best.

Chester02 profile image
Chester02

Thank you. That did make me smile 😃

You need to understand that RA is caused by your own immune system attacking your joints and therapies cut down on your whole immune system to save your joints. Sadly in doing so they also reduce your normal resistance to infections and it becomes a case of which is more important.

Simba1992 profile image
Simba1992 in reply to ROBERT_CARMICHAEL

To be more precise about the state of the immunesystem in RA.

quora.com/Are-autoimmune-di...

ROBERT_CARMICHAEL profile image
ROBERT_CARMICHAEL in reply to Simba1992

I am not sure what you are getting at.

Simba1992 profile image
Simba1992 in reply to ROBERT_CARMICHAEL

On the forum so very often brought up that in RA a question of a overactive immunesystem. This is seen as a reason for not supporting the normal immunesystem because argued it will work against the immunesuppressive meds. This is very far from the truth since the immunesystem is not attacking the joints but is unable to regulate the inflammatory response. The immunesystem is imbalanced.

ROBERT_CARMICHAEL profile image
ROBERT_CARMICHAEL in reply to Simba1992

I think you have it wrong. In RA the immune system is not working as it should and is attacking the joints as if they are pathogenic bacteria. Therapies such as methotrexate damp down the whole immune system to reduce the joint damage and unfortunately they also reduce the response to infection.

BonnieT profile image
BonnieT

Been there and understand. Not easy to hear when you want relief. Hope you’re back on track quickly.

Chester02 profile image
Chester02

Hi. Can I ask how long your ulcer took to heal? Xx

Nessa28 profile image
Nessa28 in reply to Chester02

Healing time , will depend on how compliant you are . When you're asked to elevate your legs from hip level that means get your feet up , not have them planted on the floor whilst you're sitting . Do the exercises to help pump the blood to improve healing just don't overdo it . Eat a healthy diet , don't scratch . If and when you come out of bandages you should get compression hosiery wear them if they get laddered or holes replace . Unfortunately if you've had one ulcer you're prone to get another . Moisturise your feet and legs when healed everyday without fail . If you feel unwell with flu like symptoms check it may not be a flair cellulitis has similar symptoms . If you're kind to yourself and skin it should heal well . Anyone with diabetes in our trust will be under podiatry , unfortunately everyone else with nerve damage etc will have to pay privately to get feet checked . I personally feel this is a small price to pay if it prevents . Wish you well and healed soon . Chuck those shoes out xx

Gigi71 profile image
Gigi71

All good advice Nessa. Seems unfair that some trusts don't look after feet without diabetes. I am lucky they do for me, maybe because of the amount of ops I've had on my feet. X

Nessa28 profile image
Nessa28 in reply to Gigi71

I wish ours did . I paid to see a podiatrist best thing I did as she advised me that both my mid feet are collapsing . She asked for a urgent referral to her colleague who does bio metric podiatrist in September last year I'm due to see her now in May , but she examined my feet the other day as I'm in so much pain the toes have parted to a v and the pain in joints is horrendous she thinks it's to late will need surgery . I could cry with frustration I also managed to get a pressure sore in between my toes but due to lack of feeling I never noticed until it started to bleed ,luckily I dressed it myself and all ok . It's really important we look after our feet , keep them dry and moisturised and clipped sound like a horse . This is fine if you can do all of this , but if you can't please find a podiatrist or nail cutting service well worth the money . 🌷

Gigi71 profile image
Gigi71 in reply to Nessa28

Oh dear Nessa, not what you want to hear, but at least you know what you are dealing with. My feet were a problem in the beginning of RD, 33 years ago. They used to involve your feet then. Many steroid injections into the toes ankles, I think they weakened my joints. I also had a tendency to flat feet. I had a bunion op on my left foot 23 years ago, a triple foot fusion on that foot, 13 years ago the right foot 11 years ago. One of the screws worked loose the left and removed. The right ankle has collapsed and needs a fusion. I had a piece of bone scrapped on the foot and toes pinned about 4 years ago. I can cope so haven't had the ankle fusion as it also needs another foot op to realign it after. I am currently waiting for a back op, and get nerve pain down the right leg to the foot. I do see the NHS podiatrist every two months, who together with myself keep my feet as good as possible. I do hope you have been referred to a good foot surgeon for their advice. All the best Nessa. X

Nessa28 profile image
Nessa28 in reply to Gigi71

Oh poor you what rotten luck you've had . It's funny mine has gone back to front to you mine was all back , hips sciatica resulting in compressed nerve pain in feet . Then I started with the toes and arches and gout after a monster glut on strawberries 🍓 😂 laughing now wasn't then . Surgery really bothers me my mum had her toes pinned about 20 years ago and the pins have subsequently broken and her toes just flop about she has a sling for them . I must confess I used to have quite nice feet , now they love look like sausages pushed into a foot instead of toes . Anyhow enough of myself . You'll be feeling so much better after the spine bits I've had all sorts and I must admit it did help . Have a blessed day sun ☀️ is out birds are singing . Wish you all a pain free or less day xxx

Gigi71 profile image
Gigi71 in reply to Nessa28

You have been through the mill too. I wonder if like me you could be referred to the National Royal Orthopaedic Hospital in Stanmore, I do live in Essex though. The best foot surgeon is Mr Singh, or though there are a couple of others. The pins in my toes only stayed in about 6 weeks when they removed them, they had broken the toes and they are good now. My feet however are deformed now and difficult to find anything comfortable to wear. I have men's sketchers lol. Thank you for your encouragement for my back. You enjoy your day too, it's beautiful here. I am off to my chair yoga soon. Take care. X

Nessa28 profile image
Nessa28 in reply to Gigi71

Enjoy xxx thank you I'll ask them x

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