hey Mild lupus friends, I have a question...meds/... - LUPUS UK


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hey Mild lupus friends, I have a question...meds/no meds?

dgleds profile image
21 Replies


Ok I have been later told I have mild lupus..so far anyways. At first I was going to be put on steroids (I refused them)...then plaquenil (hydrochloroquine) 200mg twice a day (no agree with my body)...Im down to one every other day now...(my asking doc/and my doing).

BUT....how many mild lupus folks out there, take no meds?

I also have hypothyroid issues..which is bouncing around a lot lately...(use to be stable on meds). Im in normal range at the mo...1.3

My latest beef is I get super bloated (likely water retentition)...I watch what I eat, and excersise as much as I can...

Been 3.5 years since menopaused too..thats in the mix.

21 Replies
tintin49 profile image

hi dgleds I hate meds. like you I refused steroids. it depends on your dr. some will offer steroids some wont. you have to do your homework and see what best for you ad take lots of advice.

when its been really hard I had some steroids injections as the pain was unbearable. now I just about take the hydroxyl 3 times a week. because I have to. really don't like quinine makes me feel really bad but its the least toxic of all lupus treatments.

I took no hydroxyl for 6 months but as I have said before my drs don't like me not taking anything. I have now been diagnosed with cardio problems the left side of my heart is only 35% pumping. chances its lupus related. so now under the cardio team. have been having very fast heat beat that had to be reset with adenosine.

just be careful and be aware

kazp profile image

It really annoys me that everything wrong with a lot of folks is lupus, its NOT. Not having a go at you at all, you need a lot more tests, bloods etc to confirm this, drugs do help like steroids are very helpful but not for long amounts pf time its a case of getting the right drugs that suit you.

ok, mild lupus really!

Having had this for 31 years mild lupus doesnt exsist,

Take care and hope you get a proper diagnosis

dgleds profile image

That's good to know..thank you TIN TIN 49,

Im sorry to hear about your heart probs...sounds very similar to my two brothers. One brother has heart that beats very fast and gets out of rythmn, and I think they have to jump start him(sorry for lack of a better) often. I think his problem is called bundle branch or branch bundle...to do with his heart. Other brother very similar problem...(that brother has major stress in his life, never dealt with). All 3 of us are bad at stress...I think that's likely how my lupus came about (stress, hormones).....presto.

After taking Hydroxy tin tin 49....What did it feel like off it?

PS/Kazp...I don't want it to be lupus, but rhumetologist says it is...with symptoms, plus ANA 1:320 speckled..homogemous too think it was...and crp inflammation high. Man when Doc turned and told me I had lupus..i thought wow Im done. He was pretty matter of fact too...I then had to tell my daughter(my only family)...It would be so great if it was a mistake...

Catlady56 profile image

No meds. If they help some people that is great, but having seen all the posts on here regarding side effects and the attitude of so many of the medical profession, I will stick will no meds. Some days are miserable for sure, but others are manageable. Having a husband who also has an auto immune disease (Crohns) who was seriously overmedicated for many years - I don't want those side effects. He is so much better on the very low dose of aziathaprine that he takes from time to time - as and when. It's not a competition about who has the worst Lupus, or who has had it longest, everyone reacts differently to same disease. Good luck :)

dgleds profile image
dgleds in reply to Catlady56

Thanks Catlady56

dgleds profile image

My Doc said mine is kind of controlled now.,.the plaqeunil will help stop it from coming back. His words...

jacamac profile image

Hi dgleds, I was diagnosed mild lupus 14 months ago, been on hydroxychloroquine, 200mg twice a day since. Infection in --August led to inflammation in lining of my heart, which led to pleurisy which left me with severe asthma!, stopped taking hydroxy for a couple of weeks and effect was quite dramatic, very tired, asleep by 6.30 every night and pain and stiffness in my joints. Back on meds and have ups and downs but have most of my energy back, as long as I don't push it, I have learned to slow down, enjoy life and smell the roses :-)

dgleds profile image
dgleds in reply to jacamac

yup im still pretty tired too..i think maybe half to 3/4 of my old self energy..i had horrible side effects on higher hydroxy..Brown urine, bad headache, no appetite...so cut down. I still was having odd stuff on less, but I have hypothyroid stuff too..and a bouncing around thyroid as of late. Ya gotta avoid stress for sure. Playing this by ear, and so good to hear others stories. Thank you:)

dgleds profile image
dgleds in reply to jacamac

I had to try to run for the bus(transit) or miss it yesterday...I felt like a gingerbread boy...All of a sudden my legs felt real stiff (lucky I didn't wipe out)..That's kind of an on /off thing, but you just never know when??? I hope your asthma isn't too bad.. I saw my Mom like that...long story(Heart, dirty hospital, Norwalk, pneumonia etc..then inhalers). A very strong British lady ,with good sense of humour...that saved her often.

Kazp it was the rheumatologist who actually said to me Mild Lupus he said there is mild and severe and I'm at this end of the scale Mild What do you mean there is no mild ? And I'm sure the main reason anyone would suspect Lupus is of a high ANA reading after many years of not feeling well with many symptoms no one could find a reason for a blood test showed 2560 everything points to lupus bit confused at your harsh comments

dgleds profile image
dgleds in reply to

One Doctor told me there was no such thing as mild lupus...he was a goof! I didnt say it, the doctor did...

Paul_Howard profile image

Hi Robyn63. Would you like me to send you one of our free information packs? It looks like you have quite a lot of questions about lupus and it may help to answer some of them for you. Please just send me a private message or email me at paul@lupusuk.org.uk with your name and address if you'd like one.

in reply to Paul_Howard

Funny my words seem to have been edited ?why ?

Paul_Howard profile image
Paul_HowardPartner in reply to

I can't see evidence that any of your posts have been edited. Could you point me in the right direction please?

Natura profile image

I feel your pain. It is so complicated. I have been just diagnosed with mild lupus too. Have not see a rheumatologist yet, but I am not going on any meds, unless I have the clotting kind which my brothers have. I have been doing my own research on me myself because I don't like doctors. I drink ginger tea for anti inflammatory aid, dandelion tea for water retention, my kidney scarring. Whatever my symptoms r for the day, I take different things. I was reading u have to try and balance immune support with anti inflammatory. If I take too much vit b for immune support, does it hurt me kind of thing.

Good luck..there is so much info out there. Oh, also tumeric is good anti inflammatory. Chamomile tea soothes nerves, anxiety. I am a super tea drinker these days. I saw my protein and creatine decrease in my tests. Must be doing something right. Exercise!!!! I was so scared of muscle weakness a year ago and now exercise everyday!

dgleds profile image
dgleds in reply to Natura

Also the omega 3 6 9 fish & flax oils are anti inflammatory too..

Ive always been into exercise, but got so tired from all this disease stuff for a while there. I couldn't do it that much...I still made it a very short block. I can go further now, but not quite my old self yet.

Natura profile image
Natura in reply to dgleds

dgleds....yes, omega and I take flaxseed pills. They work well. I walk a little, but I am really bike riding now. When I started a year ago, I could only do 15 minutes. I rode around the neighborhood and went home. I picked it up to 10 miles a day during spring, summer and fall. Love it! Saved my life.. You can sit and not put stress on your veins in your legs which is what happens to me when I walk too long. I see the veins on the back of my legs ease up when I ride. Get a magnet for riding in the bad weather and winter months. I managed my winter depression by pushing myself to ride. If I can't do it one day, I give myself a break. You can listen to music which motivates which is what I do. Or watch tv. I recommend this form of exercise for anyone having health issues! Do what you can. Listen to your body. Push a little if you don't feel up to it. But not too much. Take care...

dgleds profile image

Yes Id love to have a bike...

Years ago after I over did it with dance aerobics they said,..."swim, walk, ride a bike"...Sorry no bathing suits for me:)

Natura profile image
Natura in reply to dgleds

Some bike shops have used bikes if u cannot afford a new one. My husband got me a light framed alloy bike so that it would be light to ride on. Sometimes I don't have a lot of energy so the light bike helps a lot.

amanda73 profile image

Hate it being so called MILD by the professionals .if this is mild I would hate to see it severe I am in agony I am on half my pain meds at the moe because I had cut down to only one lot a day i have just started taking the anti mals 200mg twice a day I am in a flare atm and feel awful but got told Im not ill enough for steroids ..not sure how they work that one out xx

dgleds profile image

I hope you feel better soon Amanda...The anti mals should help, just they take a while to kick in real well (maybe even a few months)...You know the rhumy i saw almost put me on drugs first ,ask questions later...I think your Doctor is smarter as he seems to be working along with whats going on...OH, with the anti mals make sure to get your eyes tested by a good eye doctor every 6 months!!! MY Rhumy never told me that you needed your eyes tested, and I just found out that info by reading...That drug would be my choice if i have to go back on drugs for lupus, but it can in some folks, mess with their eyes...

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