I don't have a definitive diagnosis but have ongo... - PMRGCAuk

PMRGCAuk

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I don't have a definitive diagnosis but have ongoing problems with headache, blurry vision, jaw/facial pain, myalgia, arthralgia etc.

16 Replies

I am currently taking 8mg of prednisolone and 750mg twice daily of mycophenolate motefil. 3 months ago I developed an intermitent red rash on my face, it flares up and down over the course of the day, is worse at work ( hot and stressful environment ) and isn't particularly painful or itchy. My rheumy

doesn't know what it is and has referred me to dermatology ( long wait ). The rash has got much worse over the past few days and is really bad this morning. Has anyone ever had something similar?

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16 Replies
Celtic profile image
CelticPMRGCAuk volunteer

Keyes, could it be Rosacea perhaps?

polkadotcom profile image
polkadotcom

My thoughts exactly, Celtic. My daughter developed Rosacea at 27 and it really does seem, from that description, to be similar. When it is really bad she is put on a low dose of anti'bs over several weeks.

I did wonder about Rosacea, the redness comes and goes but doesn't affect my nose. I have a collection of very small pustules running in the line from my nose to top lip, they come and go as well and almost look seborrheic in appearance. In the same day I can have no rash and then later my face is covered. It calms down overnight and flares up again in the morning. Thanks for your replies, coupled with my ongoing swollen eye lids I don't feel very bonnie these days!

PMRpro profile image
PMRproAmbassador

Have you thought of keeping a diary about what you do/how the rash is? I think rosacea can be made worse by certain triggers so you might find it is something like coffee or something else you do more at work than you do elsewhere. It doesn't HAVE to affect the nose.

Hi PMRpro,

Thanks for your reply. Have been keeping a photo diary. I think there are a couple of things going on. I definitely have a touch of seborrheic dermatitis as the small vesicles/ pustules in my nasolabial folds are there permanently and it fits in with immunosupression. The intermitent redness and bigger spots may well be rosacea. My diet is similar most days now as ongoing jaw/ facial pain has limited my options.

Was just wondering if anyone else had the skin problems, am always looking for the final piece of the jigsaw to complete the diagnosis puzzle!

jinasc profile image
jinasc

Are you taking enteric coated pred?

If so, gently wash off the colouring agent. This sometimes causes a rash as you can be allergic to the contents of the colouring.

A Pharmacist told me before you ask where it came from.

venezia1 profile image
venezia1

Hi - I don't know if this has any connection, but I have been getting rashes on my face for about three weeks, following 12 days in Greece. On re-reading my pred leaflet, it seems I should have stayed out of the sun. Yesterday I was at a flower show, all afternoon in the sun, and today the rash is back. But it is slightly itchy. Confined to cheeks and forehead at the moment.

in reply tovenezia1

Hi Venezia1,

Thanks for your reply. Have been wearing factor 50 as mycophenolate increases the risk of skin cancer. It is definitely worse at work and have wondered if the fluorescent lighting and heat is to blame. Hoping that dermatology can give me some answers.

venezia1 profile image
venezia1 in reply to

yes, it'll be interesting to see what they say. What is mycophenolate? I take methotrexate plus 15mg pred down from 80, as i have GCA as well as RA - sometimes think I'm rattling!

in reply tovenezia1

Hi Venezia1

Mycophenolate is an immunosuppressant. It alters the DNA of the immune system to suppress it and as been used for years post renal transplant. It is very widely used for vasculitis and increasingly for Lupus. I have tried methotrexate, it worked fairly well but wore off after 4 days. I think at least one other person on here takes mycophenolate. I know what you mean about rattling.

Best wishes

Keyes

Hi Sambucca,

Just taking normal pred. The rash started whilst taking methotrexate and has continued now I have changed to mycophenolate.

jinasc profile image
jinasc

Keyes

You can get Factor 60 on prescription when on long term pred. Total Block.

Are you still using soap and other perfumed products. If so, ask for Double Base Gel (on prescription) and follow the directions. Quite a few people have found met with problems with perfumed shower gel, shampoo and soap once on Pred.

Johnson's Baby products are very good.

55grove profile image
55grove

May I suggest Shingles. I had shingles before PMR. The rash comes and goes and itching for some time before the rash arrives...whenever that may come on the body?

in reply to55grove

Hi 55grove,

I have had the skin symptoms for around 3 months now. It's not painful and thankfully is definitely not shingles.

rockyandzeus profile image
rockyandzeus

Hi Keyes,

I have occasional rash and acne like symptoms on my face which was diagnosed as rosacea. I believe it can affect your eyes as well. I use Metrocream twice a day when it is bad. It works like a charm.

Sorry to hear about the other symptoms.

Right now I am down to 6mg of pred and my feet are sooo sore.

Hope you get a proper diagnosis soon.

Dorothy

Thanks Dorothy. Hopefully dermatology will come up with an answer when I eventually get an appt!

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