Capsaicin cream shortage

Kirsten
Kirsten Member Posts: 2
in Living with arthritis

Hello,

Part of my symptoms of arthritis in my lower back &/or fibromyalgia is paresthesia / formication - a nerve pain consisting of a crawling feeling - in my case I can only describe it as the feeling of 1000s of maggots crawling over my back, it quite literally sends me crazy - it is such a horrible feeling that without something to help lessen it I don't think I could cope.

The only things I have found to help me cope with this is my TENS machine cranked up to its highest setting, which in itself is unpleasant and something I wouldn't normally do, but it is a lot better than the formication, or capsaicin cream which keeps a lid on the sensation rather than gets rid of it completely, but helps it be at a level I can cope with.

However, from late 2019 and for the whole of this year I have been unable to get any from my pharmacist as they just tell me it is out of stock. (I'm usually dispensed with a cream from Zaicin, but I believe there is another brand of it too but that the shortage is from the manufacturer of both). Once again when putting in my repeat medication request I asked for capsaicin cream or an alternative if it still isn't available. The GP surgery has just messaged me to suggest I buy ibuprofen gel. In the few years I've had fibro and arthritis I have tried pretty much every over the counter cream, gel, tablet etc available and have found none helps - certainly Ibuprofen gel does absolutely nothing for the formication nerve pain and I don't feel my GP understands what capsaicin can help with / how it works differently to ibuprofen. I don't want it for my general arthritis pain (although I have found it helpful for my knee, back & neck osteoarthritis) I need it, or something similar, to help free me of the formication nerve pain to a level I can cope with and function.

Is anyone currently prescribed, and being dispensed with, capsaicin? If not, has anyone found an alternative either OTC or prescribed? I'm hesitant to buy something over the internet as there are so many fakes out there, so I'd be grateful to hear of any experience of buying capsaicin online.

I've done a bit of googling and discovered a letter from the DoH in relation to capsaicin cream shortage towards the end of last year, in the letter they advise that GPs can "consider prescribing an unlicensed preparation". I just feel a bit fobbed off by my GP surgery / pharmacist who just shrug their shoulders and tell me it's out of stock and they've no idea when it will be back in, or suggest completely useless alternatives, like today's text.

Thanks in advance for any information

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Comments

  • stickywicket
    stickywicket Member Posts: 27,764

    Have you tried asking the pharmacist for suggestions? They're very knowledgeable and usually happy to advise.

    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • JoeB
    JoeB Bots Posts: 83

    I see that Capsaicin gel is easily available on eBay. One seller has 100% feedback from 5273 customers including many that appear to relate to the gel.

    Whilst there is a trade in fake medication it tends to be the high value products that get counterfeit. This is not one of those.

    There have certainly been supply issues over the past year or so affecting some medications. Ranitidine is particularly scarce currently due to a problem sourcing one of the ingredients. There are various theories as to why. When it's available my wife and I simply buy three boxes each (the maximum OTC per person).

    If it were me I would just buy the cream from eBay or one of the UK Based internet pharmacies.

    Boots and Lloyds certainly have online pharmacies but there are small independents that are just as reliable. Although I have never purchased this cream from an online supplier I have bought many other medications over the last twenty years and never experienced any problem. My wife actually has all of her regular NHS prescriptions dispensed via an online only pharmacy.

    Slightly off-topic but as you find TENS useful have you considered acupuncture as an adjunctive therapy ? As you may be aware there are essentially two types - Western Medical Modal and Traditional Chinese (sometimes also called 'Worsley Model'). Based on the diffuse nature of your problems I would be inclined to the latter. Perhaps worthy of consideration.

    Arthur

  • Mike1
    Mike1 Member Posts: 1,992

    Make sure that if you are buying off EBay the seller really is in the UK, don't trust them declaring to be in the UK at the top of the page, scroll down to the bottom of the page where the seller's address usually is. I have been caught out a couple of times ordering from a so-called UK seller and when the package has arrived it has come from China.

  • JoeB
    JoeB Bots Posts: 83
    https://community.versusarthritis.org/discussion/comment/672081#Comment_672081

    The one I mentioned is actually based in Belfast. Nevertheless, good advice.

    Arthur

  • YvonneH
    YvonneH Member Posts: 1,075

    Hi @Kirsten

    I've found this on the Versus Arthritis website which might be helpful for you

    https://www.versusarthritis.org/news/2019/july/capsaicin-cream-shortages-what-you-can-do/

    Yvonne

  • jaminhealth
    jaminhealth Bots Posts: 55

    Capsaicin creams are very temporary relief, I've used them and still do now and then. I deal with OA and told Fibro as well and lots of nerve damage (neuropathy) from hip replacement....I have used many many topicals and still do but my most effective is Topricin for pain, homeopathic lotion...I buy everything online and shop for best prices..... I know that the UK population use homeopathics as most of the world, the U.S. the least but more and more in the U.S. going with homeopathics..I use a few other supplements that are homeopathic as well.

  • jaminhealth
    jaminhealth Bots Posts: 55
    edited 9. Sep 2020, 11:35

    Sounds like neuropathy to me, just know too, that many B vitamins address this nerve damage. Also many use Alpha Lipoic Acid (ALA) for neuropathy. I am a member of a huge group that has 100's dealing with neuropathy. I have used many and still do but find Inosine (from B family) helps me a lot. I buy online for all I use.


    Please note that when a member has been given a diagnosis by a clinician then it is wrong to suggest an alternative diagnosis

    YvonneH Admin

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