Lupus??

[cakerbaker]

Hi All you lovely people

I was diagnosed with lupus in February 2020. I also have developed skin lupus. I have been feeling awful recently and am awaiting a review. Bloods done today are fairly ok.

I am taking steroids 5mg azathioprine 100mg and hydroxychloroquinne 400mg

I have a normal CRP and ESR but still hurt a lot and tiredness well thats another level. I have a high Dsdna and CTD screen but negative ENA. ( I cant remember but i think it might have been + initially but not now) Do you think my Rheumatologist has got it wrong? I cant make head nor tail of my bloods vs symptoms. I just feel so awful.

I have also just got my PIP refusal. Apparently I am not sick enough.

Thank you in advance everyone for any advice.

[whisperit]

Hello cakerbaker

Sorry to hear you're feeling so awful. What do you think your rheumy might have "got wrong?" Obviously, you'll know that anti-dsDNA is a highly specific test for SLE/lupus, so presumably you're satisfied with that primary diagnosis?

Is it that you feel so bad, you can't believe that your markers aren't showing more obvious disease activity? I can't speak for anyone else here, but I gave up trying to figure out a connection between most of my own bloods and the activity of my disease a long time ago. My fatigue in particular is often completely debilitating, even when there's nothing shown on blood results.

For me, the one I keep a close eye on is CK levels, because I developed polymyositis a few years ago and super-high CK levels turned out to be a good early warning of inflammatory muscle damage from pm. Similarly, I know other people who are hot on their complement results, as that's something that is a good indicator for them. My tentative suggestion is that our bloods vary from person to person depending on the exact combination of affected organs or systems we have.

Does that help at all? x

[cakerbaker in reply to whisperit]

Iyes it does help a lot thank you. I think you are right that i am second guessing things. I am upping my meds butnot getting better. I think i am still at a post diagnosis angry stage to be honest. I spoke to the rheumy nurse and exained how i felt but her reply was well your bloods are ok so......

My CK is normal and comement is bottom of normal.

Thank you for replying its nice to know i am not losing the plot. Hugs

[whisperit in reply to cakerbaker]

Yeah, that anger can take a lot of working through. I think a lot of us find the first years a time when we gradually realise that we ourselves can have a better insight into how our body is reacting than some of our blood markers suggest. Altogether, its a very challenging illness - or rather, illnesses. x

[sewalongwithme]

Hello there Cakebaker,

I am sorry you feel so rotten. I have a similar range of drugs but at different strengths. Tbh I have concluded over the years that it isn’t what the results say that really matters, it’s how I feel. The bloods might be relatively good, but that is irrelevant if I feel awful. I started with being seen at my local hospital, but was then sent to a Centre of Excellence in London. The Consultant there was very clear in his remarks that I should be treated in accordance with my presentation/experience , rather than the blood results. I had been left to the point that my skin was scarlet, pretty much head to toe and this was due to lupus. My joints/body were also significantly impacted. This consultant had the approach of treat the impact of the symptoms on myself, so my treatment plan commenced with higher doses of these drugs, which over time have come down accordingly. I recall the steroid dose was very high initially to get things under control. His approach was really helpful and I came to realise with his care and help that the quality of life is really most important. All these drugs are potent and the impact of side effects potentially huge. However, I would always push a consultant to recognise that I want to experience a better quality of life, rather than focus on blood results.

If you are not being seen at a centre of excellence why not request it along with a review of your treatment plan?

I am sorry to hear you are having an unpleasant time and hope things can improve soon.

[cakerbaker in reply to sewalongwithme]

Thank you so much. I think i will push for an appointment somewhere. The centre of excellence sounds a great idea if its possible. I am not getting anywhere otherwise. Having a bad day todayand.feeling sorry for myself. No fix for that one. Thanks again for the help though.

[Cas70]

all I can tell you is that you have to push and push to get listened to. Don’t hesitate to change Consultants too or get referred to a Centre of Excellence like Guys and St Thomas’s as even good Rheumatologists know tiddlywinks swat about Discoid Lupus or Sjogren’s. Life is one big struggle every day for this condition as not enough is done for us. We need clinics like diabetes sufferers have.

[sewalongwithme in reply to Cas70]

Exactly and that’s the centre of excellence I was referred to. They are superb. I was fortunate as I live in the north and my GP had previously referred patients there and they had very positive experiences. Sorry to hear you are having a bad day Cakebaker. Maybe Google the centres of excellence and make a plan about how you intend to go about pushing for change and improved quality of life? Take care

[Sheilainacton]

Re PIP refusal:

Have you appealed yet? If not you must. Their tactic is to fail everyone & see if they bother to appeal or not. If there is a 'centre for independent living' in your area or Citizens Advice Bureau they can help. In the 1st instance you just write to say you want to appeal & then you can gather evidence: GP /consultant letter etc. Have you just been rejected based on your application or have you had a face to face assessment? It is definitely worth pusuing this. I did- it took 18 months or longer. They eventually set a court date for a tribunal- again assuming people will back down but i didn't & in the end they just said we've reviewed your case & found in your favour. Post on here again with any queries-there are lots of people who have been in the same situation & they'll help you.

Re the fatigue- it is so difficult for anyone who hasn't experienced it to comprehend- but we do 🤗

[cakerbaker in reply to Sheilainacton]

Thank you Sheilainaction. I rang them today and lost the plot. Although i wasnt rude i must say. I just pointed out that have some post schoolboy read a list of questions at me was not in any way an assessment as they couldnt see how i was in myself. Also i could have saved the nhs money and done that myself. Then i pointed out that if she could have some patience we can do a better assessment. In all fairness she did talk to me rather than just fire the questions at me.

Lets hope it gets sorted.

Thank you all for your help with all of my woes

[Katrina999666 in reply to cakerbaker]

I would suggest you contact Fightback4Justice 01616727444 regarding your PIP refusal excellent organisation with qualified legal team at the helm.

[cakerbaker in reply to Katrina999666]

Thank you for this. I may try when I get the strength to continue the fight.