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Treatment Issues

Complementary Therapies – What have you tried?

  • By Astrid

    I get massages every other week. I find that it really helps and the relief actually lasts for a few days. I was thinking about acupuncture but I don’t know much about it or how it works?

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  • By JRW

    Has anyone tried hemp oil orally and or topically. My PAST has destroyed many finger joints, and metatarsals are changing. I have swollen and red constant flare ups. My wrists are swollen
    I have taken one dose of methotrexate and folic acid. Really don’t want to take this poison. I have acupuncture 2 x a week, reduces swelling a bit. I exercise alot and walk my dog daily.

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    • By Cynthia Covert

      Hi JRW
      I am not sure how much hemp oil alone will help with serious inflammation. When I first began alternative treatments I started with MMJ. The cbd/thc combo is what helped me. It reduced swelling quickly. I had lost use of a finger and thumb because of joint swelling and with MMJ I regained use of those digits within a couple of weeks.

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    • By joknee

      I have just begun using CBD cream, but would like to add the oil. See my rheumatologist in a couple of weeks and will ask about drug interactions if I use the tincture under the tongue. Methotrexate worked for years but not so much now. Stopped that after a reaction while doing chemotherapy. Remicade worked until I started getting sinus issues. Seems like the CBD would be the least toxic of either of these. Massage helps but It’s expensive.

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    • By Rebecca Keymaster

      Thanks! The taste (I got the drops for under the tongue) are pretty potent, and while I don’t feel any difference yet, I did sleep through the night last night (first time in years)

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    • By jewelrycats

      What is MMJ? I’m not familiar with some of the initials. I use hemp oil, orally, twice daily. It’s helped with some of the swelling and pain – of course not immediately.

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    • By CathyD Moderator

      Hi @jewelrycats, MMJ stands for medical marijuana. It is great to read that the hemp oil is making some difference for you – how long did it take for you to notice that some of your pain and swelling was improving?

      – Catherine, Community Moderator

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  • By Sean

    As someone who just started Humira I can say that it’s the only thing that’s truly worked to take away my pain.

    That said, before starting Humira, the one thing that seemed to make a difference was my diet. Avoiding alcohol, sugar and processed flour would help with my pain levels. Not eating as much helped, too. I noticed the emptier my stomach was, the lower my pain level was, which makes me think there’s some kind of gut/PsA link.

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    • By Mr Benn

      Have been reduced to week, feeble human by Oesteoarthritis (1976), Fibromyalgia (1991), Borderline Personality Disorder (1993 dx), Short term memory loss (2002 noticed), Psioratic Arthritis (2012), Food intolerances 99.9% (2013), Severe psychotic events x2 (2018).

      Have had to stop eating, Grain (all), Dairy (all), Nuts (all), Herbs (most), Adulterated Meats (All), Unadulterated Meats (Some), Fruit (most) & Vegetables (most). Have not tried insects.

      Pain constant between 4/10 and 9/10. For which going to hospital was a complete waste of time. NHS (UK) is totally incompetent in this area! They rather lock you up in a Psych ward (Section 8), because you can’t have so much internal pain??? Duh!

      What’s helped? Eating the most basic of foods to not make internal organs swell.
      For pain : Methotrexate was advised but, I cancelled it as what’s the point of taking a drug that is likely to kill you. Replacing one problem with another is not advised or even sensible unless the condition is has a final cure. In this case and with Humira it is not. The pain does not outway the cost!

      If this was a perfect world which it isn’t we could all get medication for free and there would be no party that gets nothing. So, in my case I’d rather see Cancer patients get the money for their medicine whilst I suffer in pain for them to be able to get a chance of a cure. Logic prevails.

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  • By Mr Benn

    I should have said I’ve tried, Chinese medicine, Acupuncture, Various alternative where I’ve been connected up to devices that scan and repair your body, health remedies that are supposed to fix “leaky bowel syndrome”. Herbs, spices, drinks, Vitamin supplement remedies, you name it, I’ve likely tried it. Wife being the wage earner here (to my regret) has spent over £27000 by 2016 to try and fix my problems. Suffice to say we are just above the poor line. I don’t let her spend a single penny on me anymore as I think her pension is the investment now. I have none.

    I have been a total burden to her since 2002 when we got married. My working life deteriorated since then, finally stopped in 2009 after complete exhaustion. I do nothing much except trawl through the internet for solutions. I know a lot, but people thing I’m crazy (including my Doctor*) because of all the research on my health problems.

    * I do not go running to my Doctor explaining this and that on the internet. I’m always willing to listen to theories. Doctors don’t, their too busy!

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  • By strsmpsn2

    Hi folks, Just want to share my story so far of MMJ. Diagnosed with PSA 2000. Tried methotrexate, and several other meds that didn’t work. Was on Remicade for 10 yrs. worked fine. Then switched to Humira which also worked fine but had to go off it while on chemo. After chemo, had to start all over again with other meds: Leflunomide (had a reaction) and a few other meds, then back to Humira which didn’t work this time. Have since been using cannabis CBD oil drops and salve. The salve is a 1 to 1 ratio of CBD/THC. The drops 10 to 1 ratio. The salve worked great on my inflamed wrists but have to reapply 3 times a day. The drops didn’t seem to do much so I found a tablet that is 14 to 1 ratio and this seems to be more effective than the drops. CBD is non psychotoxic. Also its more effective when combined with THC. The ratio Ive been using is non-psychoactive. All of this is pretty expensive. My first salve was $125 for an amount that lasted 3-4 weeks. I found something cheaper for $35. The drops $80 (also 3-4 weeks). The tablets 40 tabs at $35. Someone else in this forum recommended a 25 to 1 ration for severe symptoms. Finding the right ratio is tricky and I have had no guidance from my rheumatologist. He does not prescribe MMJ (because of insufficient medical evidence, clinical trials, etc…). Hope this changes soon.

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  • By Acknud

    I used to get massages that I think helped. I was thinking about paraffin treatments for my hands and feet. All I really do now is rest. I try to get out and do things for exercise. I work around the house as able, hunt, fish. I really don’t know where to turn from here. No insurance so my options are somewhat limited.

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    • By Rebecca Keymaster

      Oh, I encourage you to try the paraffin treatments – it feels amazing!!!!!!!!!!!!

      The insurance is so frustrating….have you looked into any patient assistance programs from the pharmaceutical company?

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    • By Acknud

      I have let my pride stand in the way. I am going to have to get over that. I am only 54 but I sometimes feel my quality life is over. I’ll look at the company for Otezla today.

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  • By joknee

    I used parrafin wax treatment in the 70’s and did find it felt really good, but left no lasting relief once I removed it when it cooled. I’m using CBD pain salve and lotion which do help some. I am trying to get Otezla from the drug company so I can get off Methotrexate which is no longer terribly effective for me and I hate the toxicity.

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  • By kvirg

    Hello – adding to this older post.. how did you all decide what natural remedies to try and did you have the support of your doctors???
    I blindly took methotrexate after my first rheumatologist visit and it was so so awful for me and undid a lot of work I’d done with clean eating alone..I don’t feel my symptoms are severe enough to go in Humira as they suggest next. I’m scared to try.
    I’ve been doing keto for about 5 weeks with successes.. for a few hours mid day I even feel completely pain free the more I’m moving.
    I want to add tumeric capsules as I found in makes a difference when it’s in my diet and I’d be interested in exploring CBD oil but fear I don’t have physician support in my more natural choices.
    It’s nice to read everyone’s success with the various drugs but it just seems so touch and go and once you start ..
    I first got the arthritis symptoms after I had my son 5 years ago then went into remission for over 2 years and it came back with avengence after I had my daughter who is now 2. However, my eating habits were awful and as I’ve cleaned them up over the last 6 months (aside from the poor MTX outcome) it’s pushing the PSA symptoms way back.

    Did you all try several medications first?

    I’m really struggling with doing against the doc wishes but the medications just don’t feel right to me.. I’m kind of lost. Sorry for blabbering on.

    Katie

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  • By strsmpsn2

    Hi Katie, welcome to our club! 😉 I am 52 yrs. old. Was diagnosed in my 30s. Tried Methotrexate, and a few other things, can’t remember. Was on Remicade for about a decade and it worked well. Changed doctors and the new one put me on Humira. It worked well. But then I had breast cancer and was on chemo so had to go off the Humira. After chemo I tried to go back on it but the doc wanted to try other things first none of which worked. The last one was leflunomide (sp?) and had a reaction to that. Tried going back on Humira but it didn’t work. Been trying CBD in various forms. Now on medical marijuana (no doctor’s advice). Been experimenting. a 10 to 1 oral concentrate (cbd / thc)was working well (Rick Simpsons Oil) a very thick concentrate, its brown, not very tasty. I accidentally did a 1 to 1 ratio and had a bad trip (was under a lot of stress which may have triggered it) so now I am hesitant to go back to oral. I use the 10 to 1 concentrate topically now and so far it works well ( I mix it with cocoa butter and add some essential oils to cover the smell). My pain/inflammation is limited to my wrists only but that is bad enough it is hard to do anything with weak wrists). It helps for about 3 to 4 hours. Have to re apply. I feel its is the best I have for now without going back to some other immunosuppressant drug (like Humira) I’d like to avoid these with respect to cancer. You will have to experiment. Trial and error. Would love some a rheumotaologists help with this, but they will not dispense MMJ in Maryland. They don’t know how. (Shit could they learn please?) Other doctors who do dispense it don’t know anything about posiriatic arthritis. I wish you all the best! I sure hope you don’t have any bad trips. It was so awful! But I am ok now….

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    • By kvirg

      Thanks for sharing. It’s funny I was never interested in the naturopath and CBD debate until I considered it.. I never questioned why people would want to go against a specialist recommendation or experiment with treatment until I feel compelled to do both.
      I think I have a lot more research ahead of me!
      -Katie

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