Anything I can do at home to lessen severity of possible lupus?

[Kyla65]

Hi! I've been experiencing a lot of symptoms that lead me to believe I have lupus, though am unable to get a diagnosis until January at earliest.

Sorry this is very long

TL;DR- I have lots of lupus like symptoms, no diagnosis and would like home remedies for stomach + lung pain and fatigue

I'm 22 female

My symptoms, most of which started 5-6 months ago, are: itchy rashes that randomly show up on legs, chest and arms (it's not like hives, more like a flat red rash with little red dots all around. I've had this one and off for over a year) moderate to severe joint pain in hands, elbows, shoulders occasionally, knees and toes, muscle pain in my legs and upper back, nausea that worsens after eating, sharp lung pain worse with deep breath, laughing ect (this first occurred in 2014 and has continued on and off since. Diagnosed twice with pleurisy and once pneumonia) dull ache in my stomach on upper left side that's pretty constant, mouth ulcers (I get at least 3 at a time, never had this problem until last month) I've had uveitis 4x in 2 years (swelling of the white of your eye) extreme fatigue that comes and goes (I believe that's when my flares are maybe?) weight loss of 5-7 pounds in a month no change in diet or lifestyle

I saw my GP for the joint pain 2 months ago, as that's what bothers me the most. He ran a bunch of tests and sent me to a rheumy because nothing obvious came up. I looked at the results and my sed rates were high (forget exact numbers but about 20 over the norm) and I've had protein in urine in 2 tests in past 2 months, both of which can be signs of lupus but my ana and rheumatoid factor were negative.

Saw the rheumatologist who told me he found nothing wrong aside from runners knee in both knees (no clue how I'd get that as I do no sports and only take short walks every few days?) he said it could take years for a diagnosis and because I have no rash or positive Ana he can't do anything. Said I have 0 inflammation but prescribed meloxicam (which is for RA inflammation??) but it didn't help so I stopped it.

I feel he was very dismissive of my symptoms because he relies on lab results that don't even necessarily mean anything. I'm seeing a female rheumy in January (I feel that make docs often dismiss female patients problems as either hormonal or made up) and hopefully have answers as I feel worse each day

My question is: is there anything I can do in the meantime to feel better? I wear knee braces for the runners knee and take aleve if the pain is bad, but the fatigue and lung/stomach pain is really getting to me.

[AnnNY]

One thing you could do is ask your GP for a trial with prednisone. If your symptoms improve it generally means you have something inflammatory going on. Many of us will go on prednisone temporarily for our flares. If you are fortunate, when your finished the improvement "sticks" to some extent. If you are really fortunate it can stop the flare all together. The problem is that you are trying to diagnosed and if you get much better, you are more likely to have "nothing" show up on your blood tests. On the other hand, if you do get better, when you see your new rheumy, you can tell her that you get better on prednisone. And some rheumies seem to take that into account.

My opinion is there isn't much that helps other than meds for pain. Other people feel diets have helped them, etc.

One of my rheumys had told me I could take Advil and acetaminophen at the same time, which I used to do when my pain was bad. There is hot baths with epsom salts and heating pads. Rest can be really helpful, and making sure you don't overdo. Use your sunscreen and make sure you take care in the sun. If you do have lupus, a lot of sun can really make you worse, so you don't want that. I also sometimes use homeopathic remedies sometimes. Two that have been helpful to me are rhus tox and arnica.

I don't know how it works other places, but in the US if you just ask to get in earlier they can work that out.

Good luck with all of it.

Oh, and also if you could ask your new rheumy if you could try plaquenil. If you do have something autoimmune that isn't showing up in your tests, you may feel better on plaquenil, although it does take months for you to start noticing the difference.

[Kyla65 in reply to AnnNY]

I am unfortunately allergic to pred I may try some homeopathic things for now and see what happens. I didn't know about the sun thing so next time I'm out I'm gonna check and see if I feel any differently.

Thank you for the reply.

Also, do you take the herbal supplements daily for it to help or just when the pain is bad?

[AnnNY in reply to Kyla65]

I've tried a whole lot of herbs and other anti-inflammatory things and never got a result. But I do get some help for homeopathic remedies, if I have nothing else. Since I have a prescription for Tylenol #3, pills just are easier to take and more reliable. But I do pull out my homeopathic pharmacy for various ills.

[maeows]

Don't take arnica if you have/suspect lupus, seriously. Anything that enhances your immune system is the last thing you need. Same goes with garlic, unfortunately!.

All the rest is what I also do to avoid flares. Maybe ask your doctor for some kind of stronger non narcotic painkiller ( i had good luck with amaltryptline so if you are having any sleep problems it helps as well or naproxen, or any other nsais)Also remember to eat before any anti-inflamitoriy medications, I big time messed up my stomach before I was diagnosed and killing the painkillers.

The one thing to expect is the first year before diagnoses and the first year after, suck! And it's ok for it to do so, and it's gonna feel a bit like you become a walking pill bottle, so accept it, take whatever meds you can get to try and feel better because it's not always gonna be like that.

One more thing, if you do get a trial with prenisolone, take calcium/vit d supplements. Osteoporosis is no joke and people tend to not remember that this does actually happen. If you do have lupus steroids are gonna be a reoccurring part of your life!

[maeows]

Also switch to a sodium laurel sulphate free toothpaste if u have ulcers, it makes them hurt a lot less when brushing and (this is from a mouth doctor) many people have sensitivities to it which make the ulcers worse from irritation!

Salt water rinses are your friends for all mouth troubles.

[misty14]

Hi Kyle

Sorry to read you are having problems with diagnosis and symptoms and not seeing a Rheumy till Jan!.

Firstly you can ring the clinic and see if you can get on the cancellation list. Also if your symptoms worsen significantly your GP can write to them requesting you to be seen sooner. They may also have a lupus nurse who could see you first and then liaise with the Consultant. Your bloods can vary a lot with these illnesses and by the time you see them your ANA may show up!. Also take photos of your rashes to show them.

Be very careful with herbal and homeopathic remedies as they can boost your immune system and make you very poorly like a previous correspondent has said. Stomach pain should be checked out by your GP as has number of causes and he'll be able to prescribe the right treatment or refer you to a specialist if necessary. Persistent mouth ulcers can be very painful can't they?. I can recommend Difflam Mouthwash as it has a mild steroid in it and it numbs the pain so helpful for eating!.

I hope I've been helpful as the path to diagnosis can be a long and tough one!. Keep us posted how you get on and I hope your seen sooner. X

[Paul_Howard Partner LUPUS UK]

Hi Kyla65 ,

I'm sorry to hear that you are struggling to get a diagnosis for your symptoms. I hope that you get on better with the next consultant you see. It may be worth trying to get a referral to a rheumatologist who specialises in lupus, as they will be likely to have more experience in diagnosing and treating it. If you'd like information about any who may be near you, please let me know what area you live in.

We wrote an article earlier this year which compiled information and advice for managing fatigue in lupus which you may find helpful. You can read it at lupusuk.org.uk/managing-fat...

As other members of the community have already said, you need to be very careful with herbal/alternative treatments. Many of them can potentially have side-effects or interact with other treatments. Lupus is a very varied condition, so what works for one person could potentially be harmful for another. It is always best to check with you doctor before starting any alternative treatments, supplements or radical diet changes.

If you need more information about lupus and how it is diagnosed, we have a free pack which you can request or download from our website at lupusuk.org.uk/request-info...

[minka]

if you do get a trial with prenisolone, take calcium/vit d supplements. Osteoporosis is no joke...

this like below is most important !!!!! And if you can walk ok try and get in as much as you can just dont veg if u can walk BUT DONT OVER DO IT i dont know if you can or not You mention knee pain is the pain like feel water like in them then dry up at night and get hot. then keep some ice in the fridge on a flannel put it inside a cloth then massarge your knee BUT REMEMBER NOT TO DO TO MUCH TO COOL THEM DOWN COS ICE CAN BURN YOU REMEMBER keep it moving over the knee cap. let me know if this is the case in your knees that will cool them down for bed time also be aware thaz\t that the ends of the feet can go red hot and be cold KEEP AN EYE ON THESE FOR BLISTERS or if it feels like you are on pin walking ALWAYS ALWAYS WHERE FLAT SHOE THAT GET YOU A MORE FIRMER STANCE THAN A HEEL!!!!! this will take pressure away from the front of the knee. they can also do all your bloods etc etc and it will show up negative like me but you may have a slightly elevated white cell count or blood or glucose in your urine. another sign of lupus.

runners knee my back side Do you feel wile your in bed at night like little pin tinks in your knees this is the old emune system going daft.

another one that i did very well on in the early days massage your knees with olive oil at night and massage 2inh below knee cap this is a nerve femral to ankle