What alternative therapies have folk found helpful & effective in managing their Lupus symptoms & flares?

[MrsNewfy]

I am currently in flare & awaiting rheumatology appointment. I have had a fair amount of joint pain relief from herbal remedies & pulsed biomagnetic therapy. I also find aromatherapy & reflexology helpful. I would love to be able to manage my symptoms totally without conventional medical intervention. Has anyone been able to do this?

[lillyanne]

Hi MrsNewfy. I haven't tried aromatherapy or reflexology but I have had my first course of acupuncture. I am crippled with lower back pain but the meds I take (gabapentin) just make me feel spaced out and It doesn't do much to help the pain either. My first acupuncture has left me still with pain but it is bearable but tonight I can feel that throbbing pain coming back. I have been told you need to have a few treatments to feel the benefits so I'll carry on because if it works, Its worth it. I'm all for trying alternative therapies, but I also feel conventional medicine is very important to my overall health so I'll try anything as long as it doesn't interfere with my medication. Hope this helps. xxxxxxxxxxxxxxxxxxxxx

[Manolo33]

I am very interested in alternative therapies and am just starting to research them. I have had reiki in the past which was wonderful for relaxation before my lupus diagnosis, I also take ginger root tablets to combat the nausea I get from my azathioprine. I also do a few core exercises to aid back pain. Any other suggestions gratefully received - I think reflexology will be worth a try.

[Northerner123]

Hi, my daughter has Lupus & Sjogrens & her consultant said alternative therapies were all a no go area, due to any adverse reactions & clash hey would have with all of her prescribed meds.

He was fine with her having reiki / massage etc but no oral meds at all.

[madmagz]

Hi I don't want to sound very negative but would like to give you a warning a I chose to use natural remedies for my lupus and found that they are not all compatible with each other and with other medications I take for other illnesses. So before you use anything please please check with some sort of practitioner that everything you plan to use is safe and will have no interactions with anything that you already take. I ended up having a very long and uncomfortable stay in hospital due to my symptoms being complicated by different things not agreeing with each other.

Please don't make the same mistake as me, I have learned the hard way, good luck and I hope whatever you choose works for you

Madmagz x

[LupusKaren in reply to madmagz]

I have to agree with MadMagz and advise extreme caution with anything 'alternative' or 'natural' the latter particularly, just because it is natural, does not mean it is gentle, safe or effective, in fact some of these alternatives can be a toxic as conventional medicines, some worse even.

I too do not wish to sound negative, but if these types of alternatives helped Lupus, I think the top notch medics we all have, would have been on to it by now, for that matter Lupus UK would have been shouting about it.

Anything taken orally, no I would not advise without first speaking with your medics, some alternative medicines could be contraindicated by your normal Lupus meds.

Reiki and Acupuncture especially the latter I have tried, and it does make me very relaxed, thus tense or tight muscles release.

If you are on any immune-surpressant drugs you have to be especially careful, because with a weakened immune system, you are at higher risk of reaction.

[madmagz in reply to LupusKaren]

Thanks Karen for pointing this out about the immune suppressants another thing I would I like to point out is if by any chance you suffer from fits some accupuncture therapists may not be happy to work with you and if they do they may well get you to sign a disclaimer stating that if the treatment makes you worse you take full responsibility. I suffer from epilepsy and had acupuncture for something totally unrelated but was asked to sign in case I had fits afterward. Like you say it is not good to take anything orally if your Lupus docs have not said it is OK I was told not to because of interactions after my nasty experience you made a very valuable point stating that if there was a natural remedy for lupus our docs would be handing it out by now. I have not tried Reiki either but am friends with a reiki healer and she is cautious about trying anything with me as she saw the state I was in last year and says she does not know enough about the condition to want to risk making me worse again but is happy to support me with things like chakra and like you say massage which can help with muscle and joint pain.

Thanks for your response, keep well

Madmagz x

[lemonface]

Hi Mrs Newfy, Yes I have been able to manage my SLE and Raynauds without drugs for 14 years. I did not just stop taking my drugs but worked with my Rheumatologist to get off them all. I did it thru healthy diet and lifestyle changes and I also tried every alternative therapy I could to see which would be helpful to me. I regularly have a deep tissue massage and now and again a reflexology.I use colour therapy too. (never wear all black) drags my energy levels down. I teach Tai Chi and find that really helpful. So don't give up hope. If you are prepared to put in the time and effort to make some changes that suit you, who knows lass.... Hang in there....,

[behappy1]

I take Chinese herbs from an autoimmune specialist in Brighton. It is a 6 hour round trip & very expensive but i feel it worth it. I would not visit a high street Chinese herbalist as they are NOT regulated or experienced and likely to do more damage than good. The chap I see is a doctor & works with rheumatolgists and when I have been there he's had patients from throughout Europe coming for treatment. I also have weekly acupuncture and reflexology. I think the acupuncture helps reduce inflammation, which in turn reduces pain. Again not cheap & need to keep it up. I don t think the reflexology does anything other than relax me, which helps well being.

[Tiamonet in reply to behappy1]

Hi, I am interested in finding an autoimmune specialist do you have any contact details...Kind Regards

[behappy1 in reply to Tiamonet]

Hello, it's Avicenna Chinese in Brighton. The Dr is called Mazin. Tel no is 01273 776499. Look up Avicenna on the internet. He is actually highly renowned and excellent

[Hidden]

Wise words Madmagz. The problem with alternative treatment is that they lack regulation and prior testing. For a medicine to be licensed in the UK it has to undergo rigorous testing through robust clinical trials. It is only ever given the go ahead if the benefits outweigh the potential risks of side effects. Once licensed for use a drug is put under a probationary period and assigned a black triangle. That means it must be strictly monitored. The problem I have with alternative and herbal treatment is the lack of clinical trial and ongoing monitoring. I met a chap once who had refused to take a prescribed medicine for his diabetes selecting a herbal alternative which he purchased over the internet. When I researched the herbal remedy it had similar properties to the drug he had refused. The problem there is that he couldn't be sure of the percentage of the 'drug' in the tablets; who knows what additives were in the 'herbal tablet; he was not self-monitoring his blood glucose (which he would if he had agreed to the conventional drug) and he was not having the effect of the drug monitored by the health care team. So I suppose I would encourage anyone considering alternative treatments to discuss them with the specialist team first. I have often heard people say, including nurses and doctors, that it can't cause any harm. But it can in some cases. So check it out first and stay safe and healthy.

[overnighthearingloss]

Has anyone tried Co Enzyme Q10?

Someone I know keeps mentioning it. I was wondering about good/bad experiences

[Deysi]

Bueno en mi caso, yo vivo en Perú, me detectaron LES hace año y medio la pase mal el primer mes con derrame pericardico, dolor de pecho y no podía acostarme para dormir por que el dolor era intenso, ademas que no podía coger nada con las manos por que tenia mucho dolor apenas cogía algo; me sentía muy mal pues soy enfermera en el Servicio de Emergencia y no podía desempeñarme como tal por los dolores; inicie tratamiento con mi medico pero al mismo tiempo me recomendaron unos productos americanos de la marca Nature's Sunshine el cual empece a tomarlos junto con una dieta completamente saludable que me la dio la misma proveedora de los productos, al principio del tratamiento el dolor fue aumentado pero me advirtieron que eso pasaría, luego de una semana todo fue mejorando, a las 2 semanas no sentía dolor podía comer sola, desenvolverme por mi misma, regrese a mi trabajo como enfermera pero en un área mas limpia, me llene de energía, y al mes mi medico no podía creer que me había recuperado tan rápido, personalmente le tengo mucha fe a estos productos, tuve una hermana con LES y su medico le recomendó estos productos pero lamentablemente no los tomó porque murió antes de empezar a tomarlos. Ahora yo me siento muy bien sigo con mi tratamiento con el medico y los productos naturales los deje de tomar una vez que logre controlar la enfermedad y regrese a trabajar en Emergencia, les deseo mucha suerte a todos y que Dios los bendiga. Me alegro mucho haber encontrado esta pagina y poder compartir experiencias con ustedes..

[LupusLeigh]

I have started taking 50,000 iu of D3 along with potassium to relieve inflammation. I take it 1 time per week. but, I do it along with my conventional meds.