Swelling : Hi everyone, I have SLE and I’ve been... - LUPUS UK

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Swelling

Lioness12267 profile image
8 Replies

Hi everyone,

I have SLE and I’ve been having a hard time recently.

I’m currently not on any medication as my blood count is far to low and it’s been hell.

My ankles and sometimes wrists are completely all swollen and I’m struggling to even walk and it is concerning me? Is this normal with someone with SLE or should I be concerned?

Any advise regarding this would be great

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Lioness12267 profile image
Lioness12267
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8 Replies
Muguet28 profile image
Muguet28

Hello Lioness, you may want to see the doctor for your swelling on the ankles, to check your blood pressure etc. Wishing you all the best. x

KayHimm profile image
KayHimm

@Muguet28 is right you need to contact your doctor. Take photos of the swelling. Even with normal blood tests swelling in the joints is a concern, I think. Not only are you not functioning well, it could be causing joint damage.

There is a woman here on the forum who got sudden sausage shaped fingers. She saw her GP who got her in to see the rheumatologist right away. Her steroids were increased.

Best of luck. You should not have to feel this I’ll without treatment.

xx K

soul22 profile image
soul22

Hi

Oh I have same problem off methotrexate due to serious infection it had calmed on methotrexate.

My orthopaedic surgeon said its inflammation as red.

I need see Dr then to as keeps coming up

Hoe u getting on with yours now

Lioness12267 profile image
Lioness12267 in reply to soul22

Hi, thanks for replying. I visited doctor and they didn’t tell me much, they just told me that they couldn’t put me back on methotrexate yet as my blood count is to low but they gave me naproxen and cocodimal which has been helping take some of the pains away.

I definitely prefer methotrexate and can’t wait to get back onto it but my blood count doesn’t seem to be going up at all. I’m pushing for a closer appointment with my specialist as I haven’t got an appointment until a months time

soul22 profile image
soul22 in reply to Lioness12267

HiYour welcome

Oh dear yep ,thats thing is blood count to low and was givr immuno suppressant you end up no immunity high risk serious infection.

So they are correct,that is good I can't have anti inflammatory due severe skin light sun sensitivity.

I end up lobster red skin bless you it takes time to climb back up.

I.do nutrition its good to up your antioxidants foods

If can eat

Blueberry

Raspberries

Cherries

Blackberries

That will boost immunity without boosting lupus into flare.

Reduce things that lower immunity

Caffeine

Sugar

Sweetener

No exercise

To much exercise

Stress reduction through meditation videos via you tube i use.

If overweight i suggest weight loss I do this professionally (not plugging sales pitch)

Just sharing knowledge, my rheumatology nurse studied nutrition said any auto immune condition requires alot low anti inflammatory foods high Antioxidants.

I do this I even went back to vegan as I was at start lupus journey rheumatoid arthritis journey.

Huge difference for me

Up water try get 8 hours sleep that i use heat therapy or cold to soothe pain I have fibromyalgia to.

So poor sleep cycle leads ill health, exercise ask what suit u best.

I can't do weights due rheumatoid arthritis I can do exercise bike treadmill gently.

Swimming is kind to joints to im 50 I had all my condition since 17 years old.

I do advocacy online giving back those need like I got support in beginning.

Libby95 profile image
Libby95

Hi, i would also suggest talking to your Dr about the swelling. I have had similar to what you have described and i was put on a short course of Prednisolone which really helped me so could be worth discussing with your rheumatologist. I have also been put on short course for this to bring my blood count up.

soul22 profile image
soul22

Hi No I'm not allowed that due to severe infection just getting rid of a fatal infection I have go without steroids even low dose.

Thks reply though once back on methotrexate it will go down.

soul22 profile image
soul22

Please can you take note don't suggest medication to ask for when your not a Dr don't know the patient needs problem Thanks

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