This is my first flare up, resulting in a diagnosis 6 months ago.
I have had no remission for 10 or 11 months, & no sign of one anytime soon. How long does the first flare-up last, on average?
How likely is it that I'll never have a remission?
Why do I shake, & have no strength & poor balance & co-ordination?
Do most of you have adequate pain control? What meds, please?
My life is blighted by severe anxiety; is this common? Do you get any help or treatment?
Why is there no-one in charge of my care, progress & needs?
Is it usual for eyesight to deteriorate very quickly, & why?
I can not even get an appointment with a GP now - just have to ask for rpt presc.s. I'm fairly sure it's because none of the GPs have a clue what to do...
Written by
AileenT
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Welcome to LUpus Patients Understanding & Support (LUPUS) at HealthUnlocked.
I was about to log off and saw your post. I can see you are understandably anxious. I will try to respond more tomorrow.
We also have another website called the LuPUS Message Board where you can also post questions and talk to other people. Registration is FREE and we offer free information and free online psychological support. We specialise in psychological support with our own counsellor/psychotherapist available.
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Sometimes we need to talk to people who understand and who are not family or friends.
With good wishes!
Ros
Disclaimer: No attempt is made to diagnose or to make any medical judgement. You are advised to seek the advice from your own physician. LUpus Patients Understanding & Support (LUPUS) is not a substitute for your own doctor.
Please do! Any problems, please let me know and I can register and validate your account.I do this manually to help prevent spammers etc and depending on the time lines/regions, this may take 24 hours.
It is unacceptable not being able to see your GP. You may have to go to the surgery and ask for an appointment and say that you need to see someone urgently.
You mention you had a diagnosis 6 months ago. Who gave you the diagnosis? Was it a rheumatologist/lupus specialist? I do not know where you are located so it is difficult for me to give any advice. Not all rheumatologists are expert in lupus. Unfortunately, many GPs do not know very much about SLE.
The best place is St Thomas' Hospital Lupus Clinic, London, a centre of excellence where patients come from all over the UK. You only need a referral from your GP. You must be seen within a set-time period and I would recommend you ask to see Dr David D'Cruz, the Director of the Lupus Clinic.
Are you taking Plaquenil, an anti-malarial? If so, you need to have regular appointments with an ophthalmologist. If you have not yet seen an ophthalmologist, get a referral as soon as possible. Please note: this is a medical doctor whose speciality is eyes and not an optician.
In terms of the questions you ask, no one can answer them. You need to speak to your rheumatologist. In fact, I would contact your rheumatologist and try to get an appointment, explaining why.
I also understand you suffer from anxiety. SLE can cause neuro-psychiatric symptoms, but there may be psychological symptoms as a result from the traumatic experience of living with an unpredictable, painful and chronic disease. I would also ask your GP to referral you to a psychological service for an assessment. There are many different kinds of psychological treatments which can be very confusing. I am happy to discuss this with you.
I don't have a rheumatologist yet; tho I await an appt.
There are NO specialists in Glasgow, where I am.
It's not possible for St. Thomas'.
I've had M.E. for many years, well over 10, & been unable to work.
For that, &/or for other reasons, I was ALREADY taking:
* dihydrocodeine;
* ibuprofen;
* fluoxetine;
* diazepam;
Since my diagnosis, I can not take NSAIDs (the ibuprofen); the others
are all as before, and in addition, I must take:
* prednisolone;
* mycophenolate;
* hydroxychloroquine;
* ranitidine;
* paracetamol;
* ramipril;
* amlodipine;
* furosemide;
* nortriptylene;
BUT ... the anxiolytics & rhe codeine were barely adequate even for the M.E., as I had been cutting down the dosage of both, gradually, over the years - tho I'd not reduced either for some time.
The point is: they do not even TOUCH the SEVERE pain of Lupus, nor the anxiety, from which I have suffered all my life...
There are many medications for pain relief and your doctor should be able to prescribe for you; or send you to see a pain specialist (anaesthetist).
The anxiety/depression, in my view, needs to be dealt with by a psychotherapist, especially if you have suffered from this for a very long time, perhaps going back to childhood.
You don't have to reply because this is a public space. If you would like to find out more about therapy, I suggest you either contact me privately at the LuPUS Message Board, where you have registered or email me at: roz [at] [lupus-support] [dot] [org] [dot] [uk]
Being anxious is totally normal, especially if you feel you have no one medically to turn too. and very scary! I urge you to get a referral to a rheumatologist as soon as possible. They will help you, I'm sure of it. Also a dermatologist for any skin flare ups you may have too. General practitioner's have no clue about lupus, send for the experts.. I was put on a course of antimalarial drugs (its been found to help some patients with lupus too.) And also steroids. neither of them helped, and actually made my anxiousness worse! I also suffer with fibromyalgia, yet another medical mystery, and feel very let down by the nhs, so felt compelled to reply to you. stay strong ((hugs))
Hi Beks, thank you so much for your lovely, reassuring & supportive message.
I've was asking my GP for referral to Rheumatologist for ages; I don't know if he ever did it.
Finally, I asked the renal O.P. clinic to refer me, a few months ago - and I JUST got an appt, only yesterday!! It's not til 1st October, but at least it IS happening.
Re the medications you mentioned:
I too am taking an anti-malarial, and steroids; and I will have to take them the rest of my life...
I also take mycophenolate, an immune system suppressant, again for life.
And diuretics if & when needed.
Also 2 hypertensives, I may not ned to take them all my life, but it is more than likely.
My problem is: I was ALREADY being presribed both diazepam & codeine before I had Lupus, as I also have M.E, and have had for nearer 20 years than 10.
But the doctors will not increase the dosage, even 'tho they are not effective against the terrible pains and crippling anxiety of Lupus, & the side-effects of some of the medications - as you found yourself.
you poor thing, at least there is a glimmer of hope now you have an appointment!! try to focus towards that, and prepare yourself well. I found it helpful to write things down, as its very hard to remember everything, and appointments sometimes seem rushed! good old nhs, eh?! It really is slow getting into the system, but very quick to be chucked out again with a leaflet and confusion to show for you're efforts!! lol! many lupus sufferers have other overlapping illnesses. Ros, am I correct in saying that if you have other conditions as well as systemic lupus, Its called mixed connective tissue disease? Maybe Aileen, it would be advisable to ask if this could be what you have. Not that there is anything they can do for it I'm afraid to say :0( ((hugs)) and support and upmost respect from me though my fellow "lupie!"
I need to take more diazepam, and am over the max dose for tramadol, and GP's don't like giving them out at all. Tramadol is a controlled drug, and monitored by the home office??!! Possibly the worst drug pushers in the world if you ask me!! sorry to speak out of turn, but the with drawl effects from not taking them are akin to those suffered by heroin addicts going "cold turkey". They gave them out, took them away again, and then put me back on them...and now there is concern again and I am being referred to an addiction clinic (I wonder what pleasant people I will meet there!?!) and I have demanded to go back to the pain management team!! I wonder if you would benefit from being referred there also. They suggested acupuncture, meditation, and self help relaxation techniques that are helping to a point, but I can't have acupuncture all the time on the nhs, its 3 treatments for 3 weeks and that's it, you have to get re referred to get more, its really expensive to have it done privately. and as far as meditation goes, I live in a very busy house, in a very busy council area, and its hard to zone out and find inner peace while the neighbours are arguing about stolen wheelie bins, lol, my dad is demanding, and the kids...well, they are kids, and I love em!! I have no time for inner peace though, just sleep!
Hope this helps Aileen, and pleased you replied to me. I have followed you, and I am here to help in any way I can :0)
Mixed Connective Tissue Disease (MCTD) is a confusing title for patients and doctors. According to Prof. Graham RV Hughes, an internationally acclaimed lupus specialist, to all intents and purposes, it is a form or variant of systemic lupus erythematosus and should be diagnosed and treated as lupus.
Withdrawal from opiods and other forms of pain relief can be acute. These drugs must NOT be stopped suddenly. IMHO, this is dangerous. Sometimes, a variety of pain relief may be offered until the right combination is found. If a patient is experiencing chronic pain, this has to be managed. Sometimes,it is advisable for a referral to a pain clinic where the patient will see an anaesthetist, but also have the options of physiotherapy and forms of psychological support, such as individual and/or group therapy. Drama therapy, art therapy etc are also helpful to many people.
Some people find Mindfulness helpful and there are posts at the LuPUS Message Board. I know at least one person who does Mindfulness there.
Some GPs are too scared when it comes to pain relief and rather than refer or give pain relief as necessary, they err on the side of not giving pain relief.
Talking with other people can be very important as isolation is often a key factor in depression.
Both anxiety and depression occur in lupus, either as a result of the inflammatory process, and/or as a "normal" human response to having a painful,unpredictable, chronic disease which impacts on the individual and the family.
It is said that while only one person may be given a diagnosis of lupus,the whole family suffers from lupus.
A very supportive post, Beks. Thank you. Many patients are prescribed hydroxychloroquine (Plaquenil) for the treatment of SLE. It is good for rashes and fatigue.
It is interesting that recent studies have shown SLE patients presenting anxiety rather than depression. That is to say,both may appear prior to any physical manifestation of SLE. Unfortunately, many patients are dismissed with the "all in the mind" because lupus is poorly understood and taught. Not all rheumatologists have experience with lupus; and many have never treated a lupus patient. This is why I encourage people to find a lupus specialist.
FM is similarly poorly understood and patients report they are not taken seriously. I think about 25% of lupus patients also have fibromyalgia.
LUpus Patients Understanding & Support (LUPUS) was formed about 16 years agooffering free information and online psychological support.
Both anxiety and depression can be the result of inflammation from SLE. Equally, they can also be a "normal" response to an unpredictable, painful and chronic disease.
Hallo again, I can't understand how to navigate this site, or find the message board.
By now I've deteriorated dramatically.
I had to ask many many times for referral to speialists, but none have had ANYthing to offer: I was diagnosed in hospital by the renal consultant; he has now retired & not been replaced.
My GP also just vanished. I'm still registered at a practice, but their policy is same day appts only, you must phone very early, & by the time you get thru the day's appts are often all gone. I'm too ill to function at that time anyway.
I went to Rheumatology, who said there's nothing they can do for me & I'm not a patient of theirs now.
I can hardly see; went to ophthalmologist: I have cataracts both eyes, but loss of vision pre-dated them; in any case, nobody is going to do anything more.
I have terrible neurological symptoms: when I FINALLY got appt with a neurologist, he tested my reflexes with a hammer-thing only, asked nothing about symptoms (as nor did any other "specialists"), & announced there's nothing wrong with nervous system, & that whatever I was experiencing is caused by stress ot a trauma.
There are NO specialists in auto-immune disorders in the entire health board area; nor money or the will to refer me outside it.
I am so weak I can't function, I can hardly walk, nor even type - this is very difficult now.
And no GP to help me.
I'm losing weight, & I feel the life force seeping away from me.
PLEASE can you advise me? I've wasted almost 2 yrs now looking for any help of any kind: there is none...
I don't even want to exist like this: I'm housebound & isolated, and have little motivation, and less ability to actually DO anything due to cognitive dysfunction in every area...
Please do reply, even to tell me how to ask for information at message board.
I see you live in Glasgow.I think the first thing to do is for you to get an appointment with a GP. If you are refused, even though you keep ringing at soon as the surgery opens, I suggest you go there and ask to speak to the Practice Manager and to explain your situation.
I am sorry I can't do more for you but you won't get anywhere without seeing your GP.
I am concerned that you are house bound and alone, especially over the Christmas break. Do you have any family or friends you can invite round to see you?
LUpus Patients Understanding & Support (LUPUS) is not closing for the break.
Contact me here.
If you want I can Create an Account at the LuPUS Message Board which is here:
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It's not til 1st October, but at least it IS happening. 
I stopped taking my lupus medication, I feel fine, how do I tell my Rhematologist?
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Mysterious red leg!
CNS Lupus & Noise Sensitivity
