Does lupus get worse?: Hi all hope your well. Just... - LUPUS UK


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Does lupus get worse?

Hhsegibs profile image

Hi all hope your well.

Just a quick one can lupus get worse over time? I have been diagnosed 2yrs and have been on hydrochloroquine since I suffer flare ups but manage day to day, however I am really struggling now walking downstairs hurts my legs my muscles feel like they will cramp up I am in constant discomfort with pain in my shoulders, joints in my fingers and my knees! I can't sleep because I can't find a comfortable position painkillers don't seem to do anything!

I don't like moaning because I know I am lucky my lupus is only mild!

Any tips help would be great! Not meeting specialist till September and doc doesn't have a clue blames everything on lupus!

Sorry for going on fed up now!! Thanks for taking time to read this

19 Replies

Hi, I have almost been diagnosed just over two years. I found that although the hydroxy helped I also needed a DMARD (methotrexate) as will still in pain. I still do have flare ups (though usually I can bring them back down within a day or two with heat bags, paracetamol etc. My muscle weakness does not seem to be as bad though like you I still have sore shoulders, and I have stiffness in legs/joints at seemingly random parts of the day. The fatigue is less. In answer to your question I consider my lupus wasnt being controlled until I was also on an immunesuppressant such as methotrexate. However, even on both meds I still have to pace, and things ache, fever at night time, regular flare ups (although pain much more bearable). I'm just thankful for the meds that are controlling it a bit and that it has not affected any internal organs (thus far). Hope this helps...I guess we are probably all a little different given that it is such a complcated condition.

Doc is probably right. I echo all that mstr says. You do often need more meds and steroids. Don't think you should wait till September though. Ring rhuemys secretary and tell all. Or ask GP to contact rheumy.


I have not been on this site for ages as I have been coping quite well with lupus and I tend to ignore it as best as I can.

However since christmas I've been feeling achy a lot!!! And today I'm really fed up so I have come on this site for some much needed support.

Then I read your blog and everything you have I have, achy muscles in legs,painful knees, struggling to get around can t stay on feet long or walk far, shoulders are a little better today but have been horrible.

I too have been told my lupus is mild but my pain is not being managed and my next rheumatologist app is not till middle of March. My doc doesn't t know what to do and I'm feeling very frustrated with it all.

The last thing I want is strong painkillers as they are additive and no one wants steroids they are horrendous. Normal over counter pain killers don't even scratch the surface.

It's so hard finding a doctor who understands that when we say we ache we REALLY ache.

I feel your pain and hope you get help and I will be speaking to my rheumatologist secretary if this carries on.

Also have you noticed any clicking of joints I'm clicking everywhere it doesn't hurt but it's very obvious .

misty14 profile image
misty14 in reply to

Hi Pinky 56

I'm suffering with aches badly just like you and isn't it hard?. My Rheumy has said these illnesses are worse in the winter . He can't decide if it's inflammation or not or if it is my joints or muscles so has taken bloods and will see me again in 4 months. I can increase the steroids if it gets very bad . My shoulders too are very painful and I wonder how I'll manage?. He wants to avoid strong drugs which I understand but suffering is hard and I'm wary of steroid side effects. If only the treatment was better for Lupus!. Good luck with your Rheumy visit. See if you can be seen sooner or get on a cancellation list, it's worked for me. Take CareX

in reply to misty14

Hello misty

I agree it's very hard to have constant aches I seem to suffer more muscle pain than joint pain so I find lupus so very rhuemy says it's more joint pain with lupus but my bloods are showing no other disease (thank god) lupus is enough so I never seem to get an answer.

He even suggested I'm over doing things and not to blame everything on lupus CHEEK !!! I told him that doing general housework should not leave me in so much discomfort that I have to spend a few days on the couch as my thighs are killing me.

Today my shoulders ache my knees really ache and my thigh muscles can't support my body but HEY it's not raining things are looking up.

Take care.

Oh ps when I'm feeling achy like now I always go to my GP and ask for my bloods to be done so I can keep an eye on them myself he now has given me two more blood forms to keep at home and use when I m worried. I just can t always wait six months to see rhuemy maybe you should do the same. Xxx

misty14 profile image
misty14 in reply to

Hi pinky 56

That's a really good idea about bloods which I shall do. My Consultant has just done some so I wait 4 months for the result!. That was cheeky of yours to say you've overdone it, they've no idea what it is like to live with. Mine is so I'm and fit, seems so unfair sometimes. He also said these illnesses are worse in winter and I should be better when I see him in May. Hope he's right!. Keep your spirits up. X

Lupus can get worse over time if the medication your on does not sufficiently control it. I can't believe you must wait till Sept for your Rheumy appt! Can you ring the hospital to bring it forward or ask your Gp to do it or get on a cancellation list?. You need to be seen much sooner. Good Luck X

farmerfester profile image
farmerfester in reply to misty14

Yes it can get worse since 204 mine has gonew from mild to quite severe don't work now but we are all different

MrsH_ profile image
MrsH_ in reply to misty14

I am glad someone else says Lupus gets worse overtime. After fighting with local doctors for 5 years (had fibro 14 years, and knew something else was wrong) I finally went to the Mayo clinic. I spent two weeks, they confirmed my fibro diagnosis and diagnosed me with lupus. Ok, I finally have an answer and treatment plan. One less stressor, knowing. I come home, i have to have a local rheumatologist, the guy is fresh out of his fellowship l, sees me for 20 minutes and has the nerve to tell me he doesn't think I have lupus because I don't look sick enough and I am only on 3 meds. Then he tells me Lupus does not get worse over time, either you have lupus or you dont, severe or mild. This contains he asks me why I am Angry with him, I tell him straight up, I have spent over 47k out of pocket, seen EVER specialist, received no answers then spent 2 weeks at MAYO you see me 20 minutes and disagree with their diagnosis. Unbelievable. Then he goes on to tell me MAYO only has a good reputation because of all the money they put out in sales and advertising and Barnes is much better. I told him I went to Barnes 4x, and.both my rheumatologist at mayo went to Barnes....

Good luck to.all of you It is a long hell is ride

misty14 profile image
misty14 in reply to MrsH_

I'm sorry Mrs H you are being given the diagnosis runaround by different doctors!. Very stressful!. I hope you can find a different local Rheumy who does think you have lupus!. I hope your consistent Fibro diagnosis is being treated!. X

lonelyone profile image
lonelyone in reply to MrsH_


Honestly mine started servere, was dx 2 yes ago at first visit.

Haven't been writing here for a while because I'm that I'll.

But always read. I'm going in a hour to orthopedic surgeon he also specializes on lupus.

Drs have been ignoring me like all of us.

Found out I've been walking around w 5 ruptured disc, l1-l5,and servere fluid on both hips, knees, torn archilles tendons.. Both!

I needed to type this and get encouragement before I leave to go.

I'm so depressed and can't handle this much more.

So my answer to question is yes.


Please prayers.



yes it can get worse please dont wait untill march get in touch with your rhumie soon pain like this is not funny Ive noticed my flareups are much worse these days than they were and I did phone my rhumie and she was so understanding and helpfull life is more comfotable these days.

Good luck judith

Sadly I'm the same as all of you , apparently mine is under control according to bloods I have double feet hand knees ankles hands wrist should pain as well as fatigue. I lived abroad and got great treatment, I've been back over a year the docs look at blood and go hmmm my rheumy is almost doubting my diagnosis and yep I've produced test results front he past 5 years, I just keep getting bumped appointment wise their answer line never bloody return calls to say I'm frustrated doesn't cut but hey it's free so be grateful and wait your turn :( ... I'm deteriorating he took me off imuran based of 2 clear bloods , it's taken 5 years to get to that point. Since he took me off I've had 3 hospital addmissions thunder clap headache angina attacks severe kidney infection and on Boxingday and all time low I think for me I laid in bed stretched my arms as I can't even move out of bed even for a pee unless I stretch , I stretched my arms above my head and really screamed ! I ripped the whole of the muscle from my occipital love up the back of,y head to my neck and shoulder and trapped a nerve I had to sit with my hand holding my chin up for over an hr I couldn't even move my jaw to speak I had to have morphia before they would even move me made a smashing Christmas lol ! Way too muc info but I'm beyond frustrated . For me it's got worse but I do t know if that's poor management . I always hope for a better day , hope something g will change. I've asked. Round other groups I'm in and despite alleged clinical remission I'm not the only one to still be in pain and suffer fatigue etc ... I'd call I'd you can get extra help, it won't hurt to try

Yes, it can get worse, lupus is a progressive disease. Medication we take is to control the symptoms and delay the progress but it doesn't really stop it. If your symptoms are increasing because of the progressive nature of lupus, then your current treatment plan needs adjustment to cater for that.

However, you may also want to consider that lupus tends to encourage other diseases to appear at the same time, e.g fibromyalgia. I'm no expert in fibro but the pain and discomfort you describe might be an indication of it.

Neither fibro nor lupus flares for that matter, necessarily appear on blood tests, so sitting down with your specialist and discussing the overall picture would be more useful than a simple blood test.

Hello, Do you have a rheumatology nurse in your clinic that you can ring and ask for your appointment to be brought forward? If you explain what you have just written about and say the pain is not controlled, I am sure they will help you. Also try to see a different doctor at your surgery to get a new perspective on your lupus. Don't give up, in my experience the ones who keep pushing get treated first. Lupus does tend to wax and wane, you need to listen to your body and find out what sets a flare off. I hope you get some help as we are often left for long periods between appointments, and this can be worrying. good luck.

Hi, I'm 15 and I have been diagnosedwith lupus for nearly three years. I think it is gradually getting worse as I can't walk up the stairs without being completely exhausted. My doctor has put me on hydroxichloriquine but it doesn't seem to be working. I also have sjrogens syndrome so I have an extremely dry mouth and eyes. I'm finding it really hard to cope with because my parents have just split up and we have lost two family members since december.

Bronn profile image
Bronn in reply to Sharie

Hi Sharie, so sorry to hear that you are suffering so much at such a young age. My advise to you is listen to your body and if hydroxychloroquin is not working get a rheumy appointment and be firm in getting your point across, tell your rheumy it's not working for you. It didn't work for me either. Sorry to hear of the loss of your family membersand parents divorce, as if being sick isn't tough enough you really have got a plate full. You ask for counselling helps some. Good luck!


I echo what has been said. Please don't wait till September. Does your local Rhuematologist not have a 24hr helpline that is monitored by the Rhuematology nurses? Usually you leave a message if they don't answer and they come back to you ASAP.

If not please call and ask to have an appointment soon 😀.

I hope you feel better soon x

try to join Dr Goldner free fb group and try adding green smoothie to ur need to change any food

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