I was diagnosed with SLE and APS last year after being ill on and off for years. I was started on hydroxychloroquine and then azothioprine was added in too. Despite following all advice I still feel poorly. Rheumy said she won't increase or change meds as my bloodwork is OK now. She advised me to give up work but i camt afford to do that.Why do I still feel so poorly and what is the point of taking the meds if they aren't making g a difference. Please help as I am getting v fed up. You have all been v supportive in the past...thank you x
Written by
hebdengirl
To view profiles and participate in discussions please or .
I'm sorry to hear that you are struggling despite being on treatment and your consultant saying your results are ok. Are there any symptoms in particular that you are struggling with most?
If you are unsatisfied with the care and treatment plan you are currently receiving, you could ask your GP to refer you for a second opinion. Perhaps to a lupus specialist?
Thanks for your speedy reply. It's mainly the fatigue, joint pains , chest pain ( though this has definitely improved since starting hydroxychloroquine) memory problems and a general feeling of not quite rightness I can't put in words.!
Rheumy said joint pains were not inflammatory ...so to take paracetamol..which doesn't really help
Good idea to ask for 2nd opinion...will see if I can get referral to leeds lupus centre. Thank you
No problem. If you do get referred to one of the lupus specialists at Chapel Allerton, let us know how you get on.
In the meantime, if you haven't seen our series of blog articles, you may find some of them helpful. They include loads of tips for dealing with various symptoms, many of which you have mentioned. lupusuk.org.uk/category/blog/
You can never give up on yourself or with life, with this coward disease. I would encourage spirituality and focusing and relying on God (not sure if you are a spiritual person) for your refuge. We cant help that we have SLE, but we have total mind control and action / reaction on how we choose to deal with it. Seek knowing that you will were not given a spirit of fear, but that of a sound mind. I was say a prayer for you, sweet friend! Keep that head and chin up and focus on all that is amazing in your life. I promise you have lots to be thankful for : -)
Please don't give up even though you are feeling down! I got into a tizz thinking hydroxy wasn't doing much ( after over a year on it). Stopped for a couple of months then realised I was very, very, wrong.
You've got really great replies so I feel there is v little I can add, but maybe something in this bit of my story can help:
Am vvvv much relating to your post and how you're feeling. I was in a somewhat similar position 2 years into treatment for lupus when the only meds in my daily prescrption treatment plan were hydroxy + amitrip.
At that point, treatment had at least helped my lupus-related blood work to be relatively "ok" e.g. my complements had risen from below normal to just at the lowest of normal range, but my lymphocytes & immunoglobulins were below range. And treatment had damped down the joint pain in my smaller joints (elbows, wrists, ankles) + I was slightly less fatigued. But I was still highly sun & heat/cold reactive. And I was still prone to numbness + vasculitis rashes (especially on the bony parts of my legs & feet). And pain in my larger joints (sacrum, knees, shoulders) remained. And my comprehension, stamina + resilience were disabling mentally and physically: I still felt & moved more or less like the zombie I'd been for many years. So I was still experiencing some of the stubborn symptomatology that's troubling you
Then a wonderful lupus uk form friend urged me to explain all this to the rheumatologist at my lupus clinic. I did so right before the first foreign holiday I felt just about able to take (thanks to hydroxy + amitrip) with my husband in many years (to switz) ....and the locum rheumy gave me a 4 week 10mg pred taper paper to take in case anything flared while I was away, e.g. from past experience I knew vasculitis rashes could get going. I did have to take the pred taper, which helped loads (this dose damped down ALL the remaining symptomatolpgy hydroxy + amitrip hadn't helped). When I reported this at my next lupus clinic and pressed the locum rheumy to reconsider my treatment plan, she & our chief rheumatologist decided to try adding daily mycophenolate. I immediately responded just as positively as I had to that 4 week pred taper. Had myco not helped so much, am sure rheumatology would've tried another add-on med
So my feeling is that maybe hydroxy + azo at this dosage simply isn't the best combo for you...maybe it's worth trying another approach
I am extremely lucky that my chief rheumy is a True Detective Medic who has the experience and confidence to trust & value patient feedback as much as clinical examination, imaging & bloodwork. She cares for lupus patients at a major uk university hospital's rheumatology dept dedicated lupus, vasculitis & connective tissue clinic.
So, I agree with the others who have replied: consider a second opinion from a rheumatologist at a lupus centre of excellence e.g. Leeds. Meanwhile, continue to monitor your condition, log your symptomatology, take photos of visual signs. And make the most of all the self help you're doing while continuing to feel this "poorly" 😉. Believe in yourself. And roll-play practice presenting your case here on forum, &/or with understanding friends, so that you're well prepped to present at a second opinion
Meanwhile, you probably have already, but double check the self help & lifestyle management advice on the Lupus Uk website...try to not give up work until you really really have to make a change (that's what I did...and my employer was v supportive, e.g. Let me increasingly work from home). My hope is that a more lupus-experienced rheumy will at least let you trial other add-on meds than azo in your treatment plan, which could make it possible for you to continue working
Sorry for such a long reply, but this subject means a lot to me
Thank you barn clown for your considered and really helpful reply. I have really been struggling the past few weeks and felt completely deflated when the rheumy said she wouldn't consider anything else in the way of treatment. I will get a referral to leeds and see what happens. You have all been so amazing propping me up I cannot tell you what a difference you have made. So thank you. Your advice and thoughts are so valuable. X
So sorry to read you are still feeling poorly despite treatment. I totally agree with your other great replies about seeking another opinion and I wish you lots of luck. What I will say is if you decide you must do less hours at work contact citizens advice who can help with looking at your personal circumstances and seeing if you can claim anything to make up any shortfall. They will also help you fill in the forms. They have a good website too adviceguide.co.uk with helpful info and links to other organisations.
I just wonder how long have you been on Aza?. Sometimes a pred taper as Barnclown says can be helpful to tide you over till Aza works. Those drugs can take up to three months to work.!.
I do hope you feel better soon and let us know how you get on. X
Thank you for the reply....I only work 2 days at present as I've had to cut my hours right down as I get really tired Had never thought about claiming anything that's an interesting idea . I started azothioprine in January but I really don't think it's working at all but rheumatoid says it is from bloods. will definitely get a 2nd opinion thank you x
Sorry forgot to mention...she did previously (when i started with azothioprine)give me a months supply of 5mg prednisone but said try not to use it. Do you think I should start on it to see if it makes things better.
OK, we aren't doctors so cannot strictly speaking advise you on what meds to take when & how...but, hey: this is EXACTLY the sort of consultant-led meds trial i was describing in my long reply...i.e. If my rheumy locum hadn't given me that 10mg 4 week pred taper for my swiss trip, i couldn't have proved an add-on med could help so much....feedback like this is invaluable to patient & doctor alike ⭐️⭐️⭐️⭐️⭐️
Talk to your gp first just to give a heads up? To at least warn a trusted medic you're going to try the low dose pred your rheumy has prescribed...and start this on a monday so medics are in office incase you need help
I found Mycophenolate much easier to take. Some of the drugs take time to work. I don't know how long you have been taking them.
It was a bit insensitive of your doctor to tell you to give up work. She should be trying to get you feeling a lot better. Perfect blood results are fine but you have to feel better to justify taking them.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Bad bloods but feel well- ish?
Feeling worse than before... still looking for cause
Prednisolone diary 5: still on 4mg
ANA now negative but still ill
