I got diagnosed with SLE back in October 2022 after a bad flare up and was put on hydroxychloroquine. I had an allergic reaction to it in December 2022 and have not been given any medication since.
I'm just wondering if this is normal procedure?
I have been suffering from muscular pain, digestive issues as well as extreme fatigue at varying intensities since then but there has not been a single day that I have not been in some kind of pain.
I have a skin rash too, the usual butterfly rash across my face but also little circular rashes all over my body. I'm under the registrar rheumatologist who told me that my last blood test (April 2023) was 'ok' but referred me to have a muscle enzyme test which I am on the waiting list for. Still no medication from April to now, I spoke to my GP last week explaining that I'm waiting to see my Rheumatologist but I'm really suffering from fatigue and pain and was told because I'm not in active Lupus I don't require medication (based on April's blood test) and that she checked and I'm still on the waiting list for Rheumatology and the muscle enzyme test. She insinuated that because I've been ill for a long time could it not be that I need to build my activity levels back up and prescribed me amitryptilin for the pain. I have 2 children a 1yo and a 4yo, I drag my self out of bed everyday to be a present parent for them and when they are in nursery I try to catch up on sleep and household chores. I used to go running and on long walks, I've been so active my whole life and outgoing, meeting friends as well as working as an SEN teacher in a special needs school. It was just a real punch in the stomach to have my GP say that to me whilst I'm going through a constant daily struggle. I know this is not just 'laziness' I can barely carry my 1yo as my arms just get weaker and weaker so I put her back down as I'm worried I will drop her.
Basically I feel like I have exhausted all the medical help I have available to me, I just want to know should I challenge the medical advice I have been given and ask for other opinions?
Had anyone else had to wait 7 months for a change of medication, all the while being unmedicated?
Sorry for the long post, but I just feel like I'm clinging on and desperately trying to get answers but coming up with nothing.
Thank you in advance.
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CorlaRo
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Might be worth asking about the alternative anti-malarial Mepacrine.
I had an allergic reaction to hydroxychloroquine back in 2014 but was put on mepacrine and have had no problems with it.
It is unlicensed in the uk but my previous surgery was quite happy to share care with my rheumatologist.
Since moving to a different area and health board though, my new surgery has flatly refused to prescribe it , I've been waiting over 2 years for a referral to a rheumy in this area (really want to stay with my original one)
Fortunately, he's brilliant and is happy to send me a prescription every 3 months.Very frustrating though!
My GP regularly refuses to prescribe meds suggested by secondary care services - so annoying for us patients!
I’ve started to ask for a prescription whilst at the Consultation because invariably, the Consultatant/Dr/Nurse/Specialist says they will write to GP to ask them to prescribe the suggested med. This results in long delays getting the drug and often a battle with GP surgery 🙃
When you had the allergic reaction where did you go for treatment? Have you been given a nurse helpline number from rheumatology department? I've found this wonderful in-between my consultant appointments.
I don't understand your gp response at all. The consultant put you on medication for lupus, therefore they saw the need for medication to control the disease. So that medication needs to be replaced with something else.
Ring the rheumatology depart.ent up yourself. Ask for the secretary to your consultant.
Fighting a battle when you feel so crap is very ,very hard. I hope you get sorted flower, keep us updated x
I’m so sorry to hear what you are going through Corla. It is so frustrating and hurtful when the medics don’t understand what we are suffering and make judgements based purely on blood results. I’ve had this recently too. I told my Rheumy almost 2 years ago that my fatigue was getting worse and I was struggling with classes at Bannatynes 3 days per week which I’d previously found challenging but coped with very well. I also walked 3 miles with hubby most days. His answer - do more exercise!!🤷🏼♀️ When he didn’t recognise my Lupus rash earlier this year allowing it to spread untreated until the Dermy confirmed it was a Lupus rash I had had enough. He also based his conclusions on my blood results which suggested my Lupus wasn’t active. But my rash said it all!!
I’m surprised you haven’t been put on a course of Prednisolone while you wait for the muscle enzyme test.
I left a message on our Rheumy Helpline and asked for another opinion and luckily because we have 2 female Rheumatologists along with the male I was seeing, I said I preferred seeing a female anyway. I saw one of the females 2 weeks ago and what a difference! It might be worth trying to do the same Corla.
My heart goes out to you because as a retired primary school teacher I know how hard you work as an SEN teacher and with little ones at home too you must be on your knees with your health letting you down at the same time. I hope you get another opinion soon and some medication to help you.
Let us know how it goes. Wishing you all the best. Xx
I too had a severe reaction to Hydroxychloroquine (Aug 22) & Prednisolone (Oct 22). Plus Anaphylaxis following Steroid injection (July 22). So like you, I’ve had no specific Lupus meds for many months & have the same symptoms you describe plus others. My bloods often show no active Lupus but I feel absolutely dreadful, so you’re not alone there xx
I take my hat off to you for ‘managing’ with all that you do and send you lots of empathy for the dire situation you’re in - Your GP sounds as bad as mine! Some really have no idea, and infuriate me with their throw-away, hurtful, disparaging & judgemental comments. They often make incorrect assumptions…..
If your Rheumatology Hospital has an Advice Line -
1. Leave a message …. everyday if needs be
2. Send them an email …. everyday if needs be
3. Contact the Rheumatology secretary/ies
4. Ask main reception to put you directly through to Rheumatology Clinic during clinic times (Desperate needs call for desperate measures!)
I waited patiently for a follow up appointment but, after months of nothing, I resorted to my above suggestions. I did have a F2F review with the CTD/Lupus Nurse March ‘23 & 2 further telephone consultations but I found out only this week, she’s now on long term sick leave. So I am still pending starting another medication…..
I realise Rheumatology departments are busy & I’m not their only patient but I’ve been left in limbo & suffering as I deteriorate without any Lupus specific meds.
During the time I was waiting for my original Rheumatology consultation following initial referral by GP, because I was waiting so long, my GP referred me to Dermatology as they can also diagnose & to some extent treat Lupus.
I waited 9 months to be seen by Rheumatology for my 1st consultation & did get seen by them before Dermatology, who I now also see.
Maybe ask your GP to refer you to
1. Dermatology
2. A Pain Clinic of which there are 2 types - a) Community Chronic Pain Clinic/ IMPACT Course & b) Anaesthetic Pain Clinic.
Primary Care & Secondary Care Trusts provide differing services across the UK.
Plus there are various other pain relieving meds your GP could prescribe in the meantime which might help you out, also ask them for Ibuprofen Gel which I find to be very effective. Many GP practices now have Advanced Practitioners who can prescribe medications and also refer to Secondary Care, they come from professional healthcare backgrounds such as Physiotherapy, General Nursing, A & E Ambulance Service (Paramedics), Mental Health Nursing. Some are very good and might be better than your GP if your surgery has them.
Speak to pharmacist as well regarding pain relief & advice about your rash (some are extremely knowledgeable), & try a tonic such as Metatone, Floradix or Feroglobin.
In my experience, Amitriptyline ( which GPs readily ‘dish out’ as it has various uses), is totally ineffective as a pain killer and is counter-productive for fatigue as it is a muscle relaxant….it gave me awful hallucinations so I will never take it again!
Being a former Dental Nurse, Amitriptyline or Diazepam were prescribed to very nervous patients to take prior to treatment. As a retired Paramedic, I saw many patients who found it no use as a pain reliever. You may well find it effective, but you may also not feel any worse for not taking it.
I hope things turn around for you soon, take care 💝
Hi CorlaRo. You have been treated very badly. I can only concur with what everyone else has said. I hope you get something sorted and feel better very soon xx
Hi CorlaRo, I know it is not for everyone but when my daughter went through similar struggles with different GPs we were so exhausted we reverted to private care just to get her started and get proper diagnosis and start treatment. You could then ask consultant to refer you to NHS. At least you have diagnosis and medication and able to show your (or another!!) GP. Wishing you all the best, we know it is very hard.
I’m sorry that you feel like you have been let down by your consultant, please see below blog article that you may find useful to read before your next appointment:
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.
Anxious wait? 
4 months and no answers!
Newly positive S.L.E. test
Sick and tired of life.
