[Marshmellow]

Hello all

Well lovely spring sunshine has arrived here and ARGH!!! I've always been sensitive to the sun but this is ridiculouls!! My knees are swelling to double their size and going red and when they go down the pain is unbearble and I'm getting a inflammed bumpy rash on my neck as well as my facial rash coming up. All this with factor 50 spf, keeping out of the sun as much as possible and covering up from head to toe-the rheumie hasn't got alot of helpful advice beyond stay out of the sun......I just wanted to know does anyone else have such problems...please tell me I'm not alone!!!

Love to all Rachel

 

[Maia]

I had a lot of problems where I'd feel truly flu-ish after any time in the afternoon sun in particular - but that was in the early days. Now, either due to medication, or my better sun management skills, I don't suffer nearly as much. Try to stay out of the sun between 10am and 4 to 5 pm, wash your clothes in RIT or similar sun protection factor wash for clothes, buy some clothes with high SPF factor in them, wear sunscreen and hat/sunglasses, etc. There are a lot of things you can do... hope things improve for you soon!

 

[Marshmellow]

sorry to say i do all that maia but is is just getting worse!!!! boo hoo hoo!

 

[sheila t]

Hi Rachel, just wanted to say you are not alone with this. I love the Summer, but the sun hates me. Rashes, Rashes, Rashes. I also use factor 50 and still the rashes come. It is also know to start the lupus flaring. Hope you feel abit better soon.

Sheila x

 

[nicky00]

Im similar to Maia,

Plenty of symtoms prior to medications.

Not just the rashes but also systemic, flu like syptoms.

It was hard to tell what was a symptom of what...and even if sun was a factor.


If the sun triggers an immune response, then it sounds reasonable that rashes will not be the only fall out I suppose.

Be prudent and open minded

 

[Marshmellow]

i've been on plaq for 20 months and cellcept for 4 yet today i want to cry with the pain of my swollen knees!!! doesn't help that it kept me awake alot last night and i don't cope well when tired

Rachel

 

[nicky00]

Sorry to hear your in so much pain Rachel...

Do you take anything to help you sleep , like a sleeping tablet or a drowsy antihistamine.

I now take a particular anithistamine and it helps, although I have to say if your in so much pain I doubt unless you get some pain relief much will help.

 

[macfamily53]

Hi Rahcel

I do feel for you big time ((((hugs))))).I used to look forward to the spring time and now i dont look forward to the sun at anytime really.I have in the last seven months or so become so red just from the lights in my house and anywhere there is lights.I litterally look like i got a real bad sunburn but i dont have the swelling in my knees from it ((((hugs)))).Iwish i knew what to tell you but i think Maia gave the best oppinoin for sure.I even get the arms extremely red and no idea of why or but there from the lights inside.If you find a sun block to help out please let us know.
My Rhueme also has not been much help either but i am so with you on the frustraion for sure.((((((((((((((hugs)))))))))))))))). What happened to looking forward to the spring time ugggg.Oh well it is a very pretty time of the year fro sure.


Tammy

 

[Marshmellow]

yes i take anti histamines and celebrex for pain relief but it's not really helping this

i just don't know what to do, i follow all the sun self help tips and am suffering more than ever

i have my next rheumy appt in june so i don't know whether to stick it out till then or try and get in early-i told him about this sun sensitivity last time and he just gave me all the usual advice and i left feeling the limitations my 'mild' lupus was putting on my life hadn't really been taken much notice of-so feel almost embarrassed to go back with the same moan!! but at the same tmime i can't function without sleep!
Hmmmmm
Rachel

 

[keebler]

(((Rachel)))

I think I would give your doctor a call and try to get in earlier.
That would be an awful long wait to go in June.

Your doctor needs a good talking to. Sorry but it makes me mad when we are not taken seriously. Tell him point blank that you are doing all the extra care with the sun.

I hope you get some relief soon. :hug::hug:

Love,
Lyn