Just finding out

[Lisalou69]

Hi my name is Lisa,i am 48. I have been sick for over 2years and have now been diagnosed with systemic Lupus and vasculitis.this is all new to me.can anyone tell me what you are doing to help keep inflammation at Bay using natural resources? I want to try to stay away from steroids as much as I can.also is this muscle type back pain normal. I'm in pain everyday I feel like I just can't take it anymore

[021879]

Hi Lisalou69

Im living with lupus for about 5 years now.. My first 2 years was tough .. having back ache is included, inflammation in all areas of our body is tiring and really cause us pain .. everyday i had to take high dose of prednisone steroids to suppress lupus..but i decided to find natural alternative way.. my Friend who is also a lupus survivor ask me to try their herbal capsule , her Pastors own this company making all natural herb capsule to use as alternative meds to avoid synthetic medicine and stop the side effects which destroy our body.. i thank God because its really works ☺ with healthy diet, enough sleep, controlled too much emotion the pain will go away ..once in a while I experience dizziness, headache and abnormal blood pressure, but it handled properly by my doctor .. untill now I'm still taking this herbal capsule for the past 3 years and never take steroids again.. ☺ maybe you could find herbal meds around your community and ask about it.. there's nothing wrong trying some alternative meds.

#keemovingon💐

[misty14]

Hi Lisalu

Welcome to the forum, hope you find it helpful. Sorry to read of your lupus and Vasculitis diagnoses, will take you time to process and come to terms with it as big change for you!.

By all means try alternative remedies but just be careful as some can stimulate your immune system and may make your condition worse!. Also if you did try conventional drugs as well , you have to watch interactions too!. Have you been prescribed painkillers for your back?. Sometimes one to one Pilates can help or maybe a referral to a pain clinic if it's really bad!. They can help in different ways with injections, different painkillers, specialist physio and a support group teaching pain coping strategies!. Maybe something to think about.

Be kind to yourself , lots of TLC and I hope you feel better soon. With having Vasculitis you may find you need some steroids. They're not too scary if managed properly by your health team. X

[Treetop33]

Hello Lisa,

I was recently diagnosed too and at first really balked at the idea of medication. Then the pain got horrific and I grabbed the first thing I could which would make me feel better, in my case prednisone and hydroxy. Three months in I am not completely pain and fatigue free but I am functioning. I've not had any observable side effects yet but am tapering off the pred. Down to 4mg currently. I'll be making an effort not to get back on it again but I'm hoping the hydroxy will do it.

However, I do take things like vitamins and fish oils. I'm also on the AIP diet. I have no idea whether these things make any difference but with the diet and medication I'm feeling on the whole quite well. Plus I've not put any weight on, even with the pred (no round cheeks or belly either).

My doc agreed that it isn't desirable to be on medication but with a disease like Lupus you have to stop it in it's tracks. It took me a good 3 weeks before I decided to agree with him.

I'm not advising you to make one choice or the other, just giving my experience and that I do understand your position and feelings.

Take care x

[Paul_Howard Partner LUPUS UK]

Hi Lisalou69 ,

Welcome to the LUPUS UK community forum.

It is admirable to want to avoid steroids as much as possible because they can have undesirable side-effects, but they can also be very effective (sometimes life saving) treatments for lupus, so it is important to consider your consultant's views if they feel you really need them at any point.

Having a healthy diet and taking part in regular physical activity can be very helpful for managing lupus and we have a couple of blog articles about these which may be of interest to you;

lupusuk.org.uk/diet-and-hea...

lupusuk.org.uk/lupus-and-ex...

Some people with lupus may find that certain complementary therapies are helpful for aspects of managing their condition, but it is important to bear in mind that lupus is different in everyone and what works for one person could be potentially harmful for another. It is important to discuss any treatments with your consultant first so that they can advise you of any potential adverse effects in lupus or interactions with other treatments.

I am sorry to hear that you are in pain. We published a blog article about pain management which has a lot of advice that you may find helpful. You can read it at lupusuk.org.uk/pain-managem...

[Hidden]

Hi and welcome. I have SLE and a number of associated conditions. I can understand you not wanting to engage in the medication cycle particularly steroids, however, once you get a handle on the pain and inflammation the medication can then be altered to managed your condition long term. Mine have been changed many times but I think Ive found a balance now.

I can only agree with misty14. Be careful of some alternative medicines as they do interact with regular meds. Pace yourself and do whats important and needed the rest can wait. Take regular rest periods but stay active, it will help your circulation and the vasculitis. Eat well, drink water, and enjoy life. Life may need to change but sometimes change is good. Ive found that pain management is based on lots of things on just medication, relaxation is one of those.

All the best.