Alternative to immunosuppression drugs

[Lovemydogs1]

Does anyone with moderate to severe lupus manage their condition without strong drugs which suppress their immune system? I am on 3mg prednisolone. I have tried Methotrexate and Plaquenil .I would like to try something kinder to my body. Thanks

[Hamptons]

I could not tolerate stronger drugs so only use hydroxychloroquine. This is on a varied dosage each day as slowly lowering dosage. I use a range of vitamin supplements and monthly acupuncture sessions. I also have a back and leg massage every 4 weeks to manage muscles and joints. I now eat a dairy free diet and low histamine diet which has definitely helped.

[Lovemydogs1 in reply to Hamptons]

Thankyou. That is really helpful. I have been thinking about acupuncture. You have given me the confidence to give it a go

[MrsMarigold in reply to Lovemydogs1]

Hi Lovemydogs. If you are going to try acupuncture I would leave several days open afterwards in case it goes. badly. My first two sessions were very good and the third one activated such a strong immune response that I flared and literally slept for a week. This was BTW with a very skilled acupuncturist. Best regards

[Lovemydogs1 in reply to MrsMarigold]

Thankyou. That is useful to know

[WinterSwimmer]

I have had lupus since the tail end of 2004. I tried pretty much everything during the first few years of being ill - EXCEPT the prescription drugs - alternatives (herbs, supplements) and diets. With illnesses like lupus, that relapse and remit, it is easy to convince oneself that whatever remedy one is using at the time is working.

In reality, however, I was giving the lupus carte blanche to run riot in my body - and 3 years down the line it had advanced to the point where I had run out of options.

These days I know that the kindest thing I can do for myself is to take the pills (hydroxychloroquine, mycophenolate, furosemide) as prescribed. I don't know whether - if I had done as I was advised at the beginning - I would at this stage have better kidney function, but I do know that another bad flare is not an option and I am taking no chances.

I can't say that alternatives won't work for you - and I wish you the best of luck if you choose to try - but the above is my experience.

[Lovemydogs1 in reply to WinterSwimmer]

Thank you for taking the time to reply. I have been advised by the rheumatologist to take mycophenolate but according to the manufacturer it comes with a slight increased risk of lymphoma which I unfortunately had and recovered from just two years ago. I feel like I am between the devil and the deep blue sea!

[WinterSwimmer in reply to Lovemydogs1]

I do understand you are worried - that was why I wouldn't take the drugs they offered to begin with. All I can say about MMF is that for me it has been a life saver. The side effects are few (so long as I take it on an empty stomach) and the lupus is under control. I don't know whether in the long term (I've been taking it, with one break of about a year, since 2012) it will do damage to my body - but without it the lupus was killing me.

[MrsMarigold in reply to WinterSwimmer]

Hi WinterSwimmer. I was so much like you. I was not diagnosed with lupus until 2016. I’m 65. It would be very difficult to be accurate about when it all began but I think I was seventeen. Never being properly diagnosed for all those years over 40!!! I tried herbs, vitamins, teas, diets, acupuncture and the list goes on. Finally my clinical and blood symptoms synchronized and I’m a lupus plus other AI diseases. I mourned for awhile why I was not treated. Like you, lupus is very sneaky for many of us I think. Doing it’s damage without our recognition. It is more visible after we begin medication and notice how well we are feeling. I do not believe for most people the “ natural” way is a cure. But don’t beat yourself up for it. None of us want to take these drugs. We just finally accept we must. Best to you.

[Turquoise-1]

Hi, you may have seen my replies to other posts regarding the problems I’ve had taking Hydroxychloroquine, Prednisolone plus Anaphylaxis following a Depo-Medrone Steroid injection.

If not, I currently take no specific medication for my SLE Lupus apart from pain relief meds which are also for orthopaedic issues too.

I eat as healthily as possible, exercise regularly (apart from when I’m flat out with a flare!). The gym I go to has 2 swimming pools one of which is lovely & warm plus they have a superb hydro-therapy pool….I just need the energy some days to even get there!

I’ve had lots of acupuncture, (done by NHS physiotherapists), but eventually my body stopped being able to tolerate the needles due to the amount of pain & inflammation within my body.

Acupressure, Aromatherapy massages & Reiki are all treatments I’ve also had but it starts to get rather expensive even though they’re very ‘nice’ things to experience. I also sometimes use a 2 lead TENS machine, (I have various orthopaedic issues too), & have a heated back/neck/shoulder ‘jacket’/pad.

For me, nothing takes it all away but distractions are a temporary aid as are rest & sleep, even if you don’t really want to be sitting or lying down. I’m slowly learning that battling against it is counterproductive & have to make the most of the good days when they come.

All the best to you 🙃

[Cas70]

I have had Lupus for many years now plus Sjogren’s - I was recommended to see a Herbalist as I was getting so many side effects from Hydroxychloroquine etc. first side effect disappeared within 24 hours of taking horrid smelly liquid mixture of herbs. The Sjogren’s cough eased off next and within a week or two had gone. Only comes back under severe stress or bad flare. He put herbs in for energy and when I suffered bereavement - I did not flare. There is a British Herbal Med. Assoc you can check on one in your area. Worth a try. I still take Hydroxy but only that and the herbs. Good luck.

[Lovemydogs1 in reply to Cas70]

Thanks very much. Will look for one in our area

[Treetop33]

You might want to look into the research around low-dose naltrexone. It's prescribed in the UK via Dickson's Chemist. I take it along with pred and hydroxy. It's really about deciding whether the research is compelling enough for you.

[Lovemydogs1 in reply to Treetop33]

Thanks so much. Will take a look

[Poshcards]

the beginning of my Lupus journey, I was very militant about my drugs and one of my consultants sat me down and made me write a list of the fors and againsts in taking the drugs, the fors won and I have stuck with them for over3o years now and all of the extra ones to help me with the RA OA, asthma etc etc etc.

[Ellie633]

hello, I’ve had an SLE diagnosis since 1999, since then I have been on steroids (now just a 5mg) maintenance dose n along with hydroxychloroquine. Periodically between then and now I’ve tried to remove steroids but failed and now just stick with the 5mg. I take painkillers for the flare ups which I’ve become used to managing, I became vegan a couple of years ago and make sure my diet is health and add in vitamin supplements. I believe that where possible having the strength and means to undertake some form of exercise is really helpful in managing Lupus. I have had periods in the past where I’ve felt I’ve needed to try other drugs but on the whole the Steroids work best. Sorry not to be more help.

[Lovemydogs1 in reply to Ellie633]

This has been helpful as I am on only 2mg prednisolone and I have asked to go up to 5mg. I was given a 2 week supply which made all the difference but they will not give me it for any longer unfortunately. I may see a rheumatologist privately I think.

Glad that you are managing. Thanks

[terri_b]

I was diagnosed with lupus in 1976 which resulted in a little kidney damage. I was immediately given prednisone and in hospital for six weeks to be monitored as my body had had become bloated with fluid. Improvements were very gradual and azathioprine was added for several months. The prednisone was decreased very slowly over the course of 3 years and then finally tailed off altogether.

I tried hydroxychloroquine for a very short while several years ago as my consultant advised it could help prevent further symptoms but felt it wasn’t for me. The only other advised medication is low dose aspirin for sticky blood but I take that depending on blood tests.

All in all I think I have been fortunate and managed fairly well without any other treatment for lupus to date and I deal with any odd symptoms if and when they appear.

Good luck!

[Lovemydogs1 in reply to terri_b]

Sorry about your time in hospital but glad you have turned it around.