Does Anyone else think there’s a link?

[LLH76]

Hey Everyone

I haven’t been on here for a while, apart from a few mild symptoms and what I think is malar which is always present, I’ve actually been pretty good for the past few months, in fact I booked my second opinion referral which finally got through for Guy’s and St Thomas and hesitated because I’ve been ok for a while...

However, my hayfever has just started so I started back on antihistamine at the weekend, I work outdoors so I have been exposed to the early sunshine etc, my question is this...I have had a terrible night, headache started yesterday afternoon and has disturbed me all night but my forearm and hands have flared up again, fingers are puffy, face feels puffy and generally feel like I’ve been hit by a bus, morning sweats are back...has anyone else noticed a coincidence between hayfever and a flare?! I will be back on the 100spf today to cover all angles...

[Lupiknits]

I take an antihistamine all year round, and two when the trees are pollinating, so I can’t personally help there. Not a doctor, but could the sun be the reason? Where I live, there hasn’t been much for quite some time. Could it be that? Summer sun knocks me for six, though. I wear the strongest sunscreen but the sun itself seems to make everything worse.

[LLH76 in reply to Lupiknits]

Hi, I really don’t know, we’ve had a couple of sunny days down here and I know yesterday I made comment without thinking that the sun was too much for me, I just can’t believe how hard it’s hit me in 24hours, been a bit tearful to be honest because I feel like I’ve gone backwards after a couple of months of barely anything other than the raynauds and other bits that I’ve just excepted as normal, today I’m wishing I was back on the hydroxychloroquine, got taken off it even after I told them it was helping, hence the second opinion referral to somewhere with a specialist Lupus unit.

[grannyjogger in reply to LLH76]

Hi LLH76, I can really relate to your frustration being taken off your meds. I agreed to a reduction suggested by my rheumy and then stopped for a few months but symptoms started to return and I wanted to go back on hydroxy. My rheumy's response was to discharge me and write to my GP saying that I had been discharged 'at my request'. I made a doctor's appointment and 7 years of frustration came pouring out. After listening and looking at pictures of my rashes, swellings and various inflammation, my wonderful GP gave me a prescription and has now also referred me to Guys and St Thomas and I've got an appointment booked.

I hope things go well for you. x

[LLH76 in reply to grannyjogger]

Hi, that’s virtually identical to what’s happened to me, however my gp doesn’t seem happy to overrule what the rheumy said and put me back on hydroxy so I’ve got to wait for my appointment at Guy’s and St Thomas in May.

[grannyjogger in reply to LLH76]

I have to admit my GP wasn't keen at first but I was feeling quite emotional and just couldn't stop talking. She has been my GP for years and I think my outpouring took her a bit by surprise. If I'm honest I did consider putting off re-starting hydroxy until after my hospital appointment as my symptoms have always been much better when I'm on the meds. My bloods have always been negative - at least I think they have because I have never seen actual results of blood tests, I've only ever been told everything was OK. But then I've been told a lot of contradictory things in the past!!! My appointment is in May too. I'm keeping my fingers crossed that they will be more willing to look at the full picture of symptoms and not just bloods.

[LLH76 in reply to grannyjogger]

Yes, my bloods have always been negative too, I’ve kept a photo diary and done a health timeline to help back me up, my gp was curious as to why I was insisting on either St George’s or St Guy’s, but when I explained he was very understanding, yes, fingers crossed..

[Lupiknits in reply to LLH76]

I’m so sorry you feel very down about it, and I would, too x