Lupus : Can anyone give me some advice. I am really... - LUPUS UK


29,873 members26,442 posts


24 Replies

Can anyone give me some advice. I am really struggling to get a lupus diagnosis. have had pay privately to see a rheumatologist and I am now awaiting an NHS appointment which will take about 6 months at a different hospital. Have been told I need a trial run of lupus medication. Also needing a steroid injection for my thumbs but the Drs are insisting on a letter from the private specialist before they will even consider looking at it let alone give me the injection I need. Need amber drugs which I can’t have till I get to see the very same specialist at the NHS hospital that I see at the private clinic. Am in agony with joint pain and my Drs are so slow to act and are not supportive. I feel that they are not happy as I have copies of my medical records, have multiple symptoms and I am constantly wanting lots of answers. Its takes forever to get a Drs appointment then when I get it they will only look at one symptom at a time. It’s taking forever. Is there anywhere I could go that would look at all my symptoms and help me as am so unwell. I feel that I am slowly going mad. With no definite diagnosis yet and no medication I am really suffering. Is there any alternative medicine I could try as I cannot go on like this any longer. Just feel I am going around in circles. Any advice is greatly appreciated. Thank you. Elena. 😀

24 Replies
whisperit profile image

Hello Elena,

I ended up having to do the same thing to avoid the long waiting list, seeing the NHS consultant privately, before going onto his NHS caseload. However, I was able to start treatment immediately on the basis of his report to my GP. So it does seem a bit odd that you have been told you need a "trial run of lupus meds" without having a diagnosis, and without your GPs having received a letter from the consultant - normally they would have had to refer you in the first place, so a report back to them should be a routine thing? Did the private consultant provide you with a written report directly? Maybe it would be a good idea to contact him/his secretary again to chase this up? Either way, you should have a clear statement from that private consultation to guide your care now. Don't give up! x

in reply to whisperit

Thank you for your reply yes on the initial appointment I received a letter which I took to the gp. I have been advised that a trial of lupus medication for 6 months is advisable. I don’t yet have a diagnosis yet as my blood work is on the low side of positive. He told me it could be lupus I have as I have a lot of the criteria. Have been told if it doesn’t work it’s back to square one as they don’t want to give me anything stronger. I have just had a follow up appointment last night and am getting in touch with the secretary in the morning so I can have a second letter written up to make sure I can get the steroid injection. I have decided to change Drs and will call PALS for advice in the morning. Am now going to sell all my belongings and pay privately for all future treatment.

whisperit profile image
whisperit in reply to

So you are starting on some sort of meds for the possible SLE? Hydroxychloroquine and steroids? It may be worth seeing whether this improves your symptoms before selling all your belongings?! x

Thanks for the advice. Sadly I haven’t got the medication yet as my Drs won’t let me have it until I have seen the same private healthcare specialist at the NHS hospital in 6 months time. Am just ringing methley Park to get a quote on how much it will cost for 6 months supply of the hydroxychloroquine medication and a steroid injection I need in my thumbs Plus it’s £70 for their Drs appointments for 30 minutes so it’s worth every penny. Am so unwell and my Drs are very slow to act. I won’t last 6 months without help so am getting the ball rolling now. I am just so mad as it may help me and Drs will only do it when it’s forced on them. It’s all about cutbacks. I have been reading about others on this site struggling. It’s just so sad. Thank you so much for your advice.

AgedCrone profile image
AgedCrone in reply to

Have you tried asking the secretary of the private rheumatologist that you saw to fast track his letter to your GP?

Whenever I have seen a Consultant privately a letter detailing the diagnosis & recommended treatment has always been sent to my GP, who has acted on the consultant's advice.

A chat often solves a lot of problems rather than trying to navigate the ins & outs of various NHS "rules".

in reply to AgedCrone

Thanks for your help. I have the letter to the Drs and am now going back to them on Tuesday for the last time in which to sort it and if not will find another Drs surgery. Am ringing methley Park hospital on Monday where I will see a dr for 30 minutes which costs £70 and they will get me a private prescription and I will pay it myself. The NHS is shocking it’s all about money. I have friends who work at hospitals and they are saying they are wanting it to be bad so that when it’s privatised they will say it’s justified.

AgedCrone profile image
AgedCrone in reply to

Have you investigated the "shared care" agreement" where the consultant decides which drugs you need, writes to your GP & he writes a prescription, but the prescribing consultant is over all responsible for you..doses etc.

Some GP's sign it straight away....others don't. My GP fiddle faddled around for 3 months & I paid for my drugs.( It was on,y £25 per month but do check what yours will cost. Strangely enough I found they were cheapest in Boots)

I think there is a time limit for signing the agreement. My GP's excuse was he "didn't know enough about the drug', whereby my Consultant sent him reams of literature & I think the GP signed in the end because he knew he was Just being awkward because I had seen a Rheumatologist privately.

Hope everything gets sorted soon......if they don't speak to PALS(patient support system) at your hospital & they will give you advice & information as to whom you should complain.

in reply to AgedCrone

Thank you for your advice as I didn’t even know this existed. I am very unhappy at my Drs. It’s because I have multiple symptoms and illnesss and I find them all useless at my practice. I have friends and family with much better care but am in the middle of house hunting as I wish to move out of the area so I put up with sub standard care knowing I can soon change Drs. Will call the gps secretary and pals again. Thank you so much as I find this site and people like yourselves who have lupus very supportive. All your help and advice is greatly appreciated. Thanks again. Elena. 😀

AgedCrone profile image
AgedCrone in reply to

In fact Idon't have Lupus,I'm an emjgrée from the RD site.I think anybody with auto immune diseases has a tough time with GP's.They don't seem to understand we would have so much more respect for them if they said upfront they don't know enough about AI diseases & refer us on to a doctor who does !

Dr's & their ego's!

in reply to AgedCrone

I totally agree and I have had Drs tell me it’s psychological too. I remember seeing several Drs over a ten year period with all sorts of symptoms at my other Drs surgery and I heard it all. It’s my age, stress, anxiety. Etc. I once saw a lady dr was seeing her for over a year went on a Monday very unwell. She fobbed me off so I paid privately on the Wednesday and was told I had M.E ( chronic fatigue) and I was quite severe. I returned to see the same gp who turned round and said “yes I was thinking it was M.E”. I was totally taken aback, what a turn around. “we need to refer you to hospita”l. I was seen very quickly was told it was just depression I got back home in tears and got back on the phone and I insisted I see someone who was actually qualified and knew what they was talking about. Back I went saw a lovely M.E dr and within ten minutes was diagnosed with level 2 M.E in matter of weeks was at level 4 and was bedridden. It just shows that you could be unwell and the people who are supposed to help you wouldn’t recognise what was wrong with you even when it’s staring them in the face. I went on to develop fibromyalgia a few years later and only after many visits to several Drs did someone I met on a college course told me. You have fibromyalgia get back to your gp. Only after several months and many visits after that did I eventually see a neurologist who confirmed what I already knew. Talk about frustrating it’s no wonder people are so ill as they are left for years before they themselves diagnose themselves and chase it up or they find out when your so ill it’s screams illness even their incompetence can eventually get it. Mmmmm

AgedCrone profile image
AgedCrone in reply to

I think with the state the NHS is in all we can do is keep as calm as possible,, arm ourselves with as much information as possible & pray to find a caring knowledgeable GP one day soon.

Miracles do they tell me!

Kerrclan profile image

Hi. Isn’t it so unbelievable that NHS patients waiting times are so long everywhere in the UK. The pain and loss of function we suffer waiting for treatment and injections is horrific, made worse by the fact that it is the exact same person who will see you at NHS appt.Waiting three to six months for scans injections & treatment is an issue everywhere. Try writing to your local MP to see if they can help with waiting times. I had a good outcome before and at least it raises awareness. I live for the day our Rheumatology departments are truly multidisciplinary and multifunctional with Live real time treatment, same day access to an ultrasound and injection clinic same day with OT & Physio to alleviate pain and promote wellbeing. We can all only hope. Please insist your GP addresses your symptoms.

I wish you well. Take care

in reply to Kerrclan

Thanks for the advice. Have just managed to get copies of my recent blood work and I read my blood results which are not good And one was almost off the charts. Am going to tell them that its not sorted I am going to the newspapers as I am in agony with bone pain on top of all my other symptoms. If it wasn’t for my family I wouldn’t want to go on.

Kerrclan profile image
Kerrclan in reply to

So sorry you are in so much pain Jeromicus. I really think you should contact a medical professional today. I know how frustrating this must be. Your basic care needs have not been met. At least if the pain was addressed it could help you deal with the other issues ahead. Your family will be your support over the coming months ahead. They will see you at your worst, but thankfully you have them. I find having a hot shower helps with my pain, I use a shower seat from my OT, then I make a wee nest for myself on top of my bed with all my comforts. Pillows, blankets, comfy PJs, TV boxsets and some good company to distract me. Trust me, Once you get effective pain relief you will see things differently. I just message when I need anything. The hardest part is expecting too much of yourself. Put everything on hold until you feel a bit better. Good luck and please read Lupus UK advice downloads. Even if it’s not Lupus they have great advice.

Take care

in reply to Kerrclan

Thank you so much for your support. I never thought about the pain relief but am now on codeine which does take the edge off but the side Effects for me are the constant nausea. Will look at what I can do myself and get an mp to do the rest. Thanks again for the advice. Elena

Paul_Howard profile image

Hi Hidden ,

I'm sorry to hear that your doctors (I'm guessing this is your GP) are unwilling to treat your symptoms despite the advice from your private rheumatology consultant. Might it be best to try and change to a different GP?

Has your specialist written to your GP with their advice? If you need time to discuss more than one problem with your GP, try requesting a longer appointment when you book.

For more information and tips about getting a diagnosis of lupus, you may find our article here helpful -

Keep us updated with how you are getting on.

in reply to Paul_Howard

Hi Paul I asked for a double appointment and they said they had all gone. When I wanted an appointment I had to que outside the surgery till they opened the doors at 8am told the receptionist what was wrong then a dr rung me back at 8.20 and said all appointments have gone but we can see you next week for your acid reflux and the week after to look at your thumbs for injections. I just shake my head in disbelief as the private rheumatologist told me it needed doing over 2 months ago and this is my 6th attempt to get the Drs to do it. What’s worse for me is am allergic to everything and have had constant nausea and vomiting. The dietician I saw tells me I have GERD and in a letter to the go says my bone health is compromised and they may have to look at nutritional drinks. I don’t go back to see her for another 4 months. It’s insane. Our healthcare is failing us and we are basically left to be our own Drs. Healthcare on the NHS is now in a terrible state of affairs and unless you can afford to go private you just have to put up with sub standard care which doesn’t even meet your basic needs. Most people just give up which brings the NHS waiting lists down. I sometimes wonder if it’s done purposely to ease the burden that the NHS is in. You will see the NHS in the future will be privatised.

Loula82 profile image

Hi Jeromicus888

I recently went privately to get my diagnosis which although not confirmed 100% through bloods I had the private rheumatologist give me a private prescription for 6 weeks of steroids and hydroxychloroquine, it was under £25 (in England) for 6 weeks worth and after these made a difference he then confirmed the diagnosis and treatment is continuing for another 3 months before the next follow up.

I was presently surprised with the cost of the medication so would suggest asking the rheumatologist’s secretary for a private prescription.

in reply to Loula82

That’s really re assuring. I Am going to get a private gps appointment on Monday thanks for the advice as I have found it most helpful. 😀

Lisalou19 profile image

I also paid privately and managed to get referred back under the nhs by the consultant writing to my doctors. This was in January. My first appointment was due next Wednesday but has now been cancelled until July 😢

I have been given steroids to manage symptoms but am not able to access a treatment plan until a formal diagnosis is made. As the consultant said “we need to get this right”. Speak with your doctor about medication that can manage your symptoms until you finally get your hospital appointment.

I’ve suffered for 14 years, only this year have I been prescribed steroids as everything else has failed to work. It really does take years to get the help we need!!!! X

in reply to Lisalou19

Thanks for letting me know I think I am on the right track now with everyone’s advise I feel tons better. I suppose I just need to be patient. I trust that your feeling much better now yourself and I too will be well soon. 😀

Thank you for your advice. Yes am in the middle of changing Drs and am getting a second opinion next week as am booking in with a gp privately. It’s such a shame we are left so long but at least I know we will eventually get the treatment I need. 😀

Kerrclan profile image

Elena, there is a definite pattern of experiences here and we are all finding it so difficult to get timely appointments , treatment and care. Really we must self manage the best we can and share our experiences and help each other. We have all been where you are now and that is why we can help you through this.This forum has helped me so much. I have only just started communicating and expressing my experiences over recent weeks as it took me four years to find my voice. Reading other people’s tips helps us carry on.We can all help each other. There will be days when the pain clouds everything. These days will pass usually very slowly but the easier days are definitely ahead. We experience so many random symptoms which change from day to day from so many body systems. GPs can’t understand or prioritise our care. Only patients can understand how Autoimmune conditions make us feel. Hopefully the next GP won’t let you leave without assessing pain and nausea. Keep on top of pain with the recommended dose as this will keep pain at bay and remember codeine can slow bowel function so increase fibre whilst you take it and stay as well hydrated with water as you can. I use a heat pad for pain which is electronic , got it in boots. Plugs in, instant relief , low voltage & only 3 pence per day to run. Also keep as active as your body and pain will allow. Very concerning that so many in UK pay privately for Rheumatology appointments and now GPs! Good luck for Monday xx

in reply to Kerrclan

Thank you bless I must admit I was severely depressed as I was ignored and I had to push them over months to get a rheumatologist referral it’s only when I went private and gave them a letter plus a few more visits and phone calls to and from the private clinic and my Drs which finally forced them to write to the nhs hospital to get me a NHS referral to see my specialist who I already see privately. I think we all have to been our own drs write our our own plans and chase it through to the bitter end. I find the Drs very complacent I am going to see them next week over a GERD condition which links in with lupus. I only found out I had it as the NHS dietician mentioned it’s what i have. Apparently it was in my notes but I have never been told I have it or been given any medication for it. So it’s back to going through each and every page of my medical notes to get answers. I have researched lupus and every condition or illness I have ever had all links in lupus. If it’s not resolved I am going to look at going abroad to see other specialists. Maybe I need to look elsewhere. Am currently doing an anti inflammation diet and seeing a health practitioner who has given me some tablets which work on your cells. It’s esrly days yet but am now doing a diary too in a bid to get well. I hope your ok and keeping well. Take care. Elena.

You may also like...