Lupus & Sjogrens with Rituximab Infusions

[Haired]

Good Morning,

I have been on Rituximab Infusions since Jan 2021 ( 6 monthly)just had double Infusion 2 weeks apart. Also on 5mg maint steroids and Mepacrine also Helliocare photosensitivity tablets, blood pressure tablets, folic acid calcichew, Asprin.

I had a really bad time this year with photosensitivity skin and eyes could not go out in heat/sun at all or skin would flare.Burning legs skin sore even when dressing. Also started to find red spots on scalp and flaky skin. First time this has happened ( wear hat when manage to go for walk)

Went on BP tablets in January I am having a lot of stomach issues nausea, cramps fatigue lightheadedness. Generally feel awful for a few hours then it just lifts. Never know from day to day.

Dr suggested spreading out the tablets and reduced BP medication which did help with dizzy spells and nightmares. Just wondering how others manage with photosensitivity etc it sometimes feels never ending. Sorry for the long post.

Regards.x

I

[KayHimm]

Haired -

You sound severely affected by photosensitivity. A hat alone is not sufficient. UV rays still get in, particularly when you on pavement or water. I find a hat with a veil has been life changing.

There are probably a lot more brands now but the first one I came across is from Solbari.

Others will have additional measures, I know. Someone like you can’t get enough protection.

🍀 Kay

[Haired in reply to KayHimm]

Hi , thanks so much for your reply . Have a good W End x

[65_women in reply to KayHimm]

I read on your meds. Of Mepacrine and Helliocare these might be causing all your problems.

Very hard on the liver when skin and eyes go yellow I know you don’t have the yellowing just be aware.

[Haired in reply to 65_women]

Good Morning, thank you for reply. Yes I am keeping an eye on the yellowing of skin /eyes with Mepacrine . Recently had bloods done and liver results ok. The medication that really caused trouble for me was Imuran ended up in hospital with liver problems after only 7 days on it.( Yellow skin and eyes). I am keeping a daily diary and I think if things don’t improve will go to GP.

Thanks for your help have a good day. X

[bathouse]

Hi

I never suffered from photosensitivity until I had the COVID Vaccine (AZ) I had an awful flare after the jab, not been right since.

I have excellent/exceptional care at Guys and St Thomas photosensitivity department.

I have had my car windows filmed/tinted with UV filter, you can’t tell it’s on but makes a huge difference

I wear solabri UV cardigan to drape over me if out in situations where I need to cover up.

I get sunscreen on prescription

The sun makes me feel so ill 🙁

[Haired in reply to bathouse]

Good Morning, thank you very much for your reply . Tint on car window good idea. I will also look up Solabri UV clothing. I bought 2 UV tops during the summer. I notice that some of the golfing clothes have UV protection.

Enjoy the week end.

[bathouse in reply to Haired]

Thanks, the window tinting has been a life saver, very professional fitting from a company called Global tint, would recommend

Very best wishes

Sue

[lad61]

Hi sorry to hear of all your symptoms. I don't know if these supplements will help with the photosensitivity, but my Rheumy started me on tumeric supplements and fish oil supplements and they really help with a myriad of symptoms and inflammation!!

[Haired in reply to lad61]

Hi, thanks for your reply. I will look up turmeric supplements. I am already taking fish oil ( Omege) for macular de generation , find it hard on the stomach.

Enjoy the week end.