lupus ?

[shell9518]

I've been unwell for 5 yrs on and off ..whole body rash,widespread joint pain ,low grade fevers ,photosensitivity ,hair loss and generally feeling rubbish and fatigued and chronic autoimmune urticaria and most recently I am unable to stand for long periods of time as I have horrendous pain in both my feet .when I first saw rheumatology 5 yrs ago she suspected lupus and possibly sjorgens as my face and neck would swell from time to time .

I was told it wasn't really showing in the blood tests so it was left at that as I started to feel better and then COVID hit so no appointments were given during that time .

I've struggled over the yrs and at times felt better then it would start up again .

3 months ago it all got bad again to the point I couldn't work I had swelling/pain in my wrists ,hands and feet and now & again my ankle and knees ,I have a physical job so I've been signed off sick.

it took me a month to see my Dr and get bloods done and 3 months to be seen by rheumatology again . the swelling has now subsided but I'm still in pain .....at that appointment I was told I've had a positive blood test for lupus (dsdna )but she thinks it is possible it's drug induced lupus as I'm on a relatively new drug for the autoimmune urticaria .

my last injection was over 9 months ago the longest I've went without needing this drug as for 4 yrs I've needed it continuously (every month or I would flare again immediately after stopping them ) I started these injections almost a yr after all this originally started so I'm struggling to believe this is drug induced . I've just received my next appointment with her but it's not till April next yr . Im struggling every day and I feel like I'm just being pushed aside and left to deal with this . she said because I have hypermobility that could be causing the joint pains and swelling . I know there's more to this but feel like no one is listening to me 😭 I'm sick and tired of feeling sick and tired .

[michaellasmith Administrator]

Hi shell9518,

Welcome to the LUPUS UK Community Forum, I am so sorry for the delay and that you have been going through such a terrible time!

How are you getting on now? How are you finding the new medication?

I have attached below a links that has information regarding how to change doctors, speak to pals if something has gone wrong and prepare for medical appointments:

lupusuk.org.uk/getting-the-...

You are also welcome to contact us at the national office on the link below:

lupusuk.org.uk/contact-us/

Alternatively you can contact me directly for support at [e-mail].

You can also call our helpline for advice on 01708 731251, which is open Monday to Friday 9am until 5pm. (I am also happy for you to ask for me)

Warm regards,

Michaella

[shell9518 in reply to michaellasmith]

thank you so much for your reply . I am really struggling at moment 😞 when I saw consultant I was in pain but swelling had subsided but it's started again I can barely move my hands past couple days and struggling to weight bear .I am not actually on any medication at all at moment other than naproxen which isn't easing the swelling or pain . consultant told me I had positive dsdna test but thought it may be drug induced from the injections I'm on for my autoimmune urticaria although I haven't had them injections for the last 10 months (longest I've been without them ) and then I got letter a week later for appointment for April next year and a physio appointment for November .

I've lost a lot of of my hair ,my mouth is constantly full of sores ,joints in hands , wrists, feet and ankles sore and swollen and I'm exhausted . I just feel like no one cares Nd I'm just being left to deal with it so I'm paying to see a private rheumatologist next week .

This is seriously impacting my mental health ,I can't keep living like this .

[michaellasmith Administrator in reply to shell9518]

Hi shell9518,

That sounds awful, it is frustrating how long it can take to get an official diagnosis and find the right balance of medications and treatments. Hopefully, you will have better luck next week with the private Rheumatologist, let me know how you get on. As I mentioned, I would be happy for you to call me at the office to chat and discuss?

Have you considered joining a support group? I would be happy to put you in touch, if this is something that would benefit you.

Warm regards,

Michaella

[shell9518 in reply to michaellasmith]

Hi Michaela, so after going to see a private rheumatologist who did loads of tests ,MRIs etc there's still a question mark over lupus so haven't officially been diagnosed with that.. despite having a positive dsdna 3 months prior to seeing him it was back to normal levels when he redone tests. however I have been diagnosed with palindromic rheumatism and started on hydroxychloriquine last week which I'm told would also be prescribed for lupus also so fingers crossed . At this point in time I just want to be pain free and to be able to function ,I was becoming seriously depressed. I don't care so much about the label if there's something that can help me I'll b happy . I've been unwell last week with chest infection but have been physically sick past 2 days not sure if that's the new meds or whether it's just off me being unwell but hoping it isn't the hydroxychloriquine not agreeing with me and the medication works 🙏

[michaellasmith Administrator in reply to shell9518]

Hi there shell9518,

Sorry to read that you have been unwell recently with chest infections and sickness, hoping you are feeling better now?

Its wonderful that you have made some progress with treatments, how are you getting on with your medication?

Warm regards,

Michaella

[shell9518 in reply to michaellasmith]

Hi Michaella , Im feeling pretty rubbish at moment tbh . I'm always picking up some illness or another on top of everything else . my stomach has started to settle,I do think it is the hydroxychloriquine that's making me sick and giving me stomach pain as it always seems to be worse after taking it but it is better than what it was last week so hopefully it's just a case of me getting used to them . consultant told me the meds aren't a quick fix and obviously it's early days so I'm just praying that they start to work so that I can actually start to live again . I know I sound dramatic but I literally live to work 4 days a week and although I've cut my working days in half I still struggle massively . my 3 days off are spent recovering in agony and exhausted to start the whole cycle again the following week .it's mentally and physically exhausting 😞

[michaellasmith Administrator in reply to shell9518]

Good morning Shell,

Sorry to hear you are still feeling so rubbish, hopefully in time everything will settle down and your body will get use to the medication. Have you considered looking into the different brands of Hydroxychloroquine? many people find they react better to specific brands.

Warm regards,

Michaella

[shell9518 in reply to michaellasmith]

in the box I had 2 different brands of hydroxychloriquine as I had 3 months worth .I think you're right and that I just wasn't tolerating the generic & seem to be fine on the quinoric brand as stomach problems have settled since only taking the quinoric . I've been unwell with with cold /flu for 6 weeks and just finished a second course of antibiotics and steroids for my chest so still feeling pretty rubbish at moment . still early days as far as the pain I'm in ,my feet are still incredibly painful and swollen daily but I have noticed a difference in my hands recently . my rings can come off (haven't been able to remove them for a yr ) and aren't as stiff as usual ,they are painful but bearable . whether it's the tablets starting to work or not I don't know but fingers crossed 🤞

[michaellasmith Administrator]

Hi Shell,

Thank you for the update, I really hope this is the case and things are still improving for you!

Warm regards,

Michaella