LUPUS UK
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Capsicum cream

I’m on holiday down in Cornwall at the moment and nipped in to a Herbery while out searching for King Arthur today (as you do). I was trying to find some cream to help with the pompholyx eczema which has been extremely bad on my foot this year and has left the skin either dry and flaking or red and sore. The lady recommended borage cream which I am trying - if nothing else the one they do is very rich and soaking in exceptionally well without leaving my foot geasy and slippery so better than any other moisturisers I’ve tried.

While there I saw capsicum cream to help with joint inflammation etc but had never heard of it so googled it once we got back to our cottage and saw that it is recommended for osteoarthritis by Arthritis UK and is available on prescription. I can’t use anti inflammatory creams such as deep heat or voltarol cream as I react to it so was wondering if this stuff might help with lupus joint pain as well as osteoarthritis. Has anyone tried it and if so did it help at all?

Many thanks

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King Arthuritis! : ) (I'm in Cornwall, couldn't resist.)

Strangely, last year, about now, I was developing nerve pain that I'd never experienced before. I found myself ordering everything with hot chillies -- capsicum. I was convinced it was helping to some degree. Nerves are not the same as joints obviously, but it seems worth a try.

All best with the eczema right now. P x

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I like the Arthuritis 😂😂😂

Where in Cornwall are you? We’re staying in Rock - it’s been a long time since I was last here so some of it has changed but used to come here a lot to visit my grandparents when I was a kid. I’ve managed to stay pretty much shady the first week but might be spending next week staying in lots!

Interesting about capsicum as mine is more nerve related but with hypersensitive tendon pain. I might make a note to mention it to my lupus nurse next visit 🤔 Thanks

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I'm in Truro. Rock is lovely. Lots of places down here have changed a lot in the past 15 years in particular.

But, yes, hmmm about the amazing-for-everyone-else weather right now! Good luck with the shade. x

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Rest day today to watch the football and thankfully the house throws shade over the whole of one section of the garden. Still have to put my sunscreens on and cover up but I am at least able to sit out in it with a cuppa and a book 😊 it’s very bright light down here though - you must struggle with it!

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Well that sounds ideal for today at least! : )

There is a particularly bright light here, that is even more so by the seaside. Sunlight is one of my hardest obstacles. But we just keep adapting, hey....?

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We’ve been leaving taking the dogs down the beach until the evening and generally avoided the coast in the day as it’s too busy so that’s helped. Lost Gardens of Heligan was great from the bits I saw - hubby took the dogs round the steep bits while I found a bench in the shade under trees. He managed to get lost and by the time he found me again he’d walked round most of it and was too hot and knackered to do any more so I got to sit in the shade eating burgers and ice creams the entire time which was awesome - they do a carers ticket so only had to pay for one of us so it didn’t even waste the entry fee either 😂😂 yesterday was the Arthurian centre and most of that was shady too. Not sure I’ll be so lucky the rest of the week but only 4 more days and then home Friday - we only go out for about 2 hours each day as well so I should just about cope 😊

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Sounds like lovely days! Heligan is my favourite of the Cornish gardens. Lots of shady places, but open/sunny ones too. So glad you found a way -- and for free! I hope the rest or your time here goes as smoothly. Do enjoy as best you can. P x

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Can highly recommend The Hidden Valley up near Launceston. There’s a big shady area in the middle and you go round the site solving Shetlock Holmes clues so you are walking round without feeling like it’s exercise. We managed the kids one and got a free badge lol. It was too hot today to stay there for long but we still managed 2 hours without doing the full trail, going in the mansion or doing the maze! We will definitely go back next year on a less sunny day and think we could easily spend a whole day there - we wished we’d found it last week when it was less sunny but there you go.

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There always seems to be something else I have not yet explored in Cornwall. That's for the tip! x

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Hi Panda2, they gave me Capiscum which is literally ground up chillies in a cream. It was bloody awful. It made my leg feel like it was on fire, with real flames I might add! I can see where the thinking comes in with this formula but it felt like hellfire on the damaged nerves in my leg. NEVER AGAIN. Good luck tho I hear it works for some things.

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I was prescribed this at the pain clinic some years ago, unfortunately although it did help I had an allergic reaction to it. Give it a try though, it might help, it confuses the pain receptor I think.

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I was prescribed some. It was a somewhat thoughtless prescription, for my hands of all places! This stuff is like the real thing if you get it in your eye, and there was no possible way of applying then washing the hands thoroughly. I haven't tried it elsewhere, and really should.

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Thanks everyone .. even with the limited walking I’m able to do this week my knees look bruised all round them so might be worth me trying. I was stunned at paying £6.50 for a tiny pot of borage cream but I’ve got to admit it looks worth it! My feet were dry and peeling until I used it last night - it’s not fixed it totally but it’s so much better than it was so if nothing else it was worth the money for it’s moisturising qualities! Possibly out that way again this week so might stop in on the way back to get some capsicum.

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Hi, Mifford.

I can't advise re capsicum cream although when I posted a cri du coeur about the feeling that my feet were on fire, about a year ago, someone on here suggested it for the pain of erythromelalgia in my feet at night. However, I was scared of making my already burning feet even hotter with a compound extracted from chilli peppers, so I didn't try it and tried a product called Freeze Gel, which didn't make much difference to the pain but was cooling and gently massaging it in passed the time until the pain-killers kicked in and I could get back to sleep. The EM has got worse over the last few months and I'm going to see if the neurologist can come up with anything more helpful than: "Mmmm. A difficult condition to treat." the next time I see him!

With regard to dry, sore feet, I've been trying Flexitol (on prescription), a Urea-based moisturiser. There are two strengths, 10% as a general moisturiser and 25% as a heel balm. I have found that it really helps but it is greasy...I've used Atrixo (the Camomile one in the pale green and yellow pot) for about 40 years on my hands and more recently on my feet at night. Even though it soaks in quite quickly and isn't greasy, I wear light cotton socks in bed.

I love Cornwall. This will be the first time in about 20 years that we haven't spent a summer holiday on the north coast (Morwenstow) with the family. They are growing up and want to do different things.

Let us know how you get on if you decide to try the capsicum cream

Best wishes,

Tess

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Thanks Tess. I’m surprised i’d never heard of the capsicum before as it seems to be suitable seeing as how I can’t use anti I flammatories but think I might bring it up with my nurse to see what she thinks. I’ll heed the warning about heat and make sure I don’t put too much on though! 😳

Having said that I actually crashed out for a few hours today and the pain in my knees when I woke up was so bad I’ll try anything. I think I may have overdone it a bit this week. I’m always ok right up to the point I stop then it all hits at once it seems. Capsicum seems a better possible option than keep taking amiltriptaline.

My feet I’ve tried just about everything and they are either so greasy I can’t walk even the next day or they don’t help unfortunately. I’ve not had it this bad before though - betnovate helped with the itching but it leaves the skin a mess. The betnovate is looking good though 👍🏻

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Hi Tess, hope you dont mind me jumping in here but I have EM too and have been told by an EM expert from EM Warriors that Capsaicin cream is an absolute no-no for EM because not only will it send you through the roof but it will make your EM symptoms worse. It seems to be a common suggestion by docs who don’t know about EM but apparently is to be avoided at all costs! I too have had the “mm its difficult to treat” comment and therefore been sent away without anything and it really doesn’t help when screaming with pain at 3am does it! If you are looking for EM advice and support I have found EM Warriors a huge source of help and information. You will find them if you Google. It was them that told me that, if I couldn’t get help from an EM specialist locally, I was entitled to ask for an “out of area referral” to get the specialist help needed, They have also provided a list of recommended specialists for me. I hope you don’t mind me jumping into this discussion and hope some of this might be useful. So sorry you too are dealing with EM. It’s an evil thing and I wouldn’t wish it on my worst enemy! Thinking of you, Tillyxxx

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Dear Tilly,

Thank you so much for your helpful response and it's great that people "jump in" on this wonderful forum.

In fact I realised when I thought about it that the capsaicin would be a complete no-no with EM, so I tried freeze gel instead.

Mifford will be trying capsaicin for the pain in her arthritic knees.

And EM Warriors-brilliant! Thanks for letting me know about that resource. I will check it out. The 3am grizzling and screaming because it feels as if my feet are on fire is very wearing.

Best wishes,

Tess

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Hi, Mifford.

I'm sorry your knees were so painful: I think we all tend to overdo it and then pay the price. I hope the capsaicin cream helps.

Do you see a dermatologist about the condition that affects your foot? And have you ever been prescribed oral antibiotics, in case the skin is infected? Or a combination of antibiotic and steroid in a cream, Dermovate?

I have hand eczema but so far, haven't ever had anything like pompholyx on my feet. They just get incredibly dry, cracked & sore, probably because of Raynaud's and peripheral neuropathy. That's why I use the Flexitol.

Best wishes,

Tess

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D'oh! I meant Fucibet, that's the combination cream. Sorry.

Tess

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And now, sitting reading through related posts, I realise that you were posting in reply to Twitchytoes about your pompholyx two years ago and TT mentioned various treatments for the condition, including an anti-fungal and antibiotics. There was also mention of oral steroids somewhere in that chain of posts/replies. All have their place, in management of pompholyx.

Did you find Doublebase helpful for the dryness of your foot/feet, back then?

Tess

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Hi Tess. I was going through the old posts and found that from a couple of years back too. The doctors don’t seem overly interested in it to be honest - I only found out what it was when I mentioned it in passing to the doctor at the specialist light sensitivity unit at Guys. They gave me betnovate for it (I think) but back then it was only a small patch that came up in one spot on my left foot when I was flaring. This summer it’s come up on the so,e of my foot in a much bigger patch than I’ve ever had before. I must admit I haven’t gone back to the doctors with it and just used hydrocortisone cream to ge5 past the peak of the itching so I really should go back and get it looked at properly.

Doublebase didn’t work for me but the thickness and creaminess of this particular borage cream is helping lots so fingers crossed it keeps it less irritated and doesn’t flare again.

I’ll try and add a couple of photos of it once the little blisters started to dry up - it doesn’t look like much and it’s small areas but they itch like nothing I’ve ever known when they flare. Everyone then thinks it’s athletes foot when they see it but it does only happen when I’m flaring and then goes away again once everything has calmed down. I may try some anti fungal cream on it though to see if that helps this time.

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Hi, Mifford.

It certainly sounds like pompholyx: the intense itching and the blisters are typical. Poor you.

Have you got some photos of it when it's really bad? It might be worth showing them to your GP and/or dermatologist.

Re adding photos: when you first start a new post, you are offered the option to "Add photo". Not sure if you can add them later.

Good luck with the capsaicin cream.

Tess

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It’s definitely pompholyx - first time I showed my gp they didn’t know what it was and said it wa# just dry skin but the specialist at Guys knew what it was immediately.

I take photos of everything now - firstly it helps to show doctors if needed but secondly it’s useful evidence for PIP so they can see I’m not making it up! Lol. I’ll star5 another thread and try photos there 😊

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Ok I may be having a retarded day but can’t see how to add pics. Can anyone enlighten me?

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Oh and while out and about today we stopped at the herbery again and I picked up the capsicum to try. It’s about 100th of the prescription strength and doesn’t heat up apparently but I’ll see if it helps and if so get on to my docs to get it prescribed. I’ll let you know how it goes!

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Hi Mifford, not sure if you are allowed to do this but could you possibly private message me the name of the store you got the Capsium cream from. My friend used to get it on prescription and was pleased with the results she had when she used it for oestoarthis .I.have now developed this but, the GP has left the practice and the new GP will only offer anti- inflammatories which I can't take because of gastric issues Many thanks Moyra x

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So my review so far - at this strength it hasn’t helped with my shoulder, neck or back but my knees are definitely looking less bruised and didn’t keep waking me up last night which is interesting. It could be coincidence but they felt as they were tingling without actually tingling when I put it on and definitely took the edge off. It may be coincidence or my imagination but it’s enough to make me keep with it I think.

Thanks for all the tips as always xx

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Hi Mifford, just wondering how you are doing. I ordered a pot of the Capsium cream from the herbary, and like you say it is not very strong. However I have used some of the cream on my knees, I am also alternating with Arnica cream and finding that this method seems to help the pain I had.Many thanks for your post about this cream. Love and hugs X Moyra

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Hi Moyramm. I only needed it for while I was away and it was just enough to take the edge off for me so worked well for that short period. I’ll try with the arnica and see if that helps too so thanks for the tip 😊 glad the thread helped x

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I use Arnica cream for lots of things (my grandchildren call it Nanna"s magic cream) but for some reason this time it didn't work very well . However using both creams seems to work better xx

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