Itching.

[Bedwell]

can anyone help with itching prob? Skin so sensitive.. legs particularly . On 1mg still. Rheumy says no symptoms show pmr?!?!

[PMRpro Ambassador]

The most common cause of itching is dry skin - try a really good emollient and don't use any soap.

1mg can be loads to manage low disease activity - so don;t go mad yet and drop the pred!

[Bedwell in reply to PMRpro]

Thanks. Even 3/4 mg not acceptable?!?! Nearly 3 months on 1mg.. 😘☹️

[PMRpro Ambassador in reply to Bedwell]

By drop the pred I mean just stop it - there are doctors and patients who will try to tell you that 1mg can't possibly be doing anything. Of course try 3/4 and even lower - IF IT WORKS.

[Bedwell in reply to PMRpro]

Are you actually saying drop the pred completely ? If 3/4 doesn’t work?!!! Or have I misunderstood? I don’t want to stay on 1mg for the rest of my life.. however long that may be?! Don’t feel well on 1mg. (But even worse if I drop down.. )

on 1mg .. Dizzy exhausted tickly.. but also have neuropathy !!! Throbbing hands and feet.. blimey! Give us a break?!?!?! 😘😘

[PMRpro Ambassador in reply to Bedwell]

NOOOOOOO! You need the dose at which you feel best - or maybe least worse. And what is the matter with 1mg for the rest of your life if you are telling me you feel worse at 3/4mg? Do you feel better at more than 1mg? If you had a thyroid problem you would be on thyroxine for life, as a diabetic insulin for life - what is the difference being on a very small dose of pred for life IF THAT IS LIVING YOUR BEST LIFE?

[Bedwell in reply to PMRpro]

I haven’t actually felt well since I was on pred .. though wonderful to be able to put my arms up from next day! And still can!! And touch my toes! No problem! And I do know that ageing has to be accepted.. friend of my age was off all pred in 2 years … mustn’t compare!!!!!

Hope to swim more often as weather gets better. Also have new homeopath soon.

I will go on trying.. maybe just one day a week.

[Uglow]

snap always itchy

[Bedwell in reply to Uglow]

Hello hello. Hope to see you soon? What do you do for the itching???

Scratch?????

[Uglow in reply to Bedwell]

Yes my feet on top and legs tbh most of me itches if I’m lucky I get a back scratch 😉

[diana1998]

Doctors here recommend Dermol Lotion 500. Good for itchy skin.

[Bedwell in reply to diana1998]

Thanks. Will get. But what is cause actually? Still inflammation?! Although Rheumy insists no more pmr as I said!!

Have an inch of Prosecco some evenings! Oh dear!!!!

[PMRpro Ambassador in reply to Bedwell]

No, dry skin will do it - it is unhappy and letting you know. Perhaps 2inches of prosecco would be better? 🍾

[Bedwell in reply to PMRpro]

Will take your advice.. perhaos 6 ins would be better!

[Uglow in reply to Bedwell]

A bottle lol no don’t really

[Bedwell in reply to Uglow]

What do you do for your itching. ? I went for a swim. Showered well… and my legs are driving me crazy.

[Uglow in reply to Bedwell]

Nothing just get irritated

[Bedwell in reply to Uglow]

Not good enough!!!!!! Wondering about coconut or caster oil. Very thinly spread! Have ordered some emollient stuff. It obvs doesn’t keep you awake! I’ve started sleeping naked and that seems a bit better. !!! You’d be popular?!?!

[Uglow in reply to Bedwell]

I always do fest irritaes it

[herdysheep in reply to Bedwell]

🤣

[Bedwell]

awful night itching all over. Could it be a flare?! Should I take 5 mgs this morning and see if it helps. ???? Have ordered emollient suggested.

[Angelsmummy]

Hi Bedwell,if you are able to get into a bath,try a very large handful of E45 or similar-in your bath water.You will have to mix it in well though !Does the trick for my dry itchy skin.Plus a good moisturiser after drying .Skin is worse in this weather due to central heating I think.xx💐😜

[PMRpro Ambassador in reply to Angelsmummy]

Moisturers/emollients work better when applied to damp skin - keeps the moisture in!

[Angelsmummy in reply to PMRpro]

That’s why I put it in my bath!x😜💐

[Bedwell in reply to PMRpro]

I’ve been scrolling back to 10 years ago and itching!!! And the subject of bread came up. I realise I’ve been eating more white bread recently (organic prob but?! )and wonder if that’s why I’ve got the itching. Will cut it out .. and just have rye Perhaos?! Or none?!

[HeronNS in reply to Bedwell]

Now that is a thought, maybe it's modern wheat? I too have been eating more wheat lately after nearly cutting it out for several years, and also have itchy skin, like being very sensitive to one's clothes even! I think this is unrelated to the apparent flareup of skin sarcoidosis but maybe cutting out wheat again would help both conditions? This recurred for me a couple of months after reaching zero pred and although taking pred again has reduced the development of patches of rough red skin it hasn't made any difference to the sensitivity and I would dearly love to either reduce the pred or get off it again entirely. Thank you for suggesting the possible connection with wheat.

[Bedwell in reply to HeronNS]

Yes to sensitivity to clothes even!!!!!!

[PMRpro Ambassador in reply to Bedwell]

Wheat starch made me itch! In fact, so badly it might have been the skin version of coeliac disease but it isn't gluten - I could eat pure rye and even spelt and kamut were fine as well as French baked products. I even went gluten-free for a long time until I reacted to products made with Juvela g/f flour which is made with washed wheat starch, Now I'm on enough pred and TCZ to suppres the immune response and don't have the problem.

[Bedwell in reply to Angelsmummy]

My E45 is a small tube!?! What is it a handful of?

[Bedwell in reply to Angelsmummy]

Question about E45? Mine is a little tube! So how can I get a handful please?!

[Angelsmummy in reply to Bedwell]

Morning Bedwell,because of my dry skin,I asked dr if I couldhave it on prescription .He kindly did so now I get it in a large pump action dispenser.If you play on the fact that the Pred is making your skin fragile and dry ,which is true ,it does to many people,pretty sure dr would oblige you.If not E45 ,other,such as Cetraben ,which is a bit more tricky to work into water.Good luck!xxx💐😜

[Bedwell in reply to Angelsmummy]

Thankyou. Will ask the doctor .., last night wonderful. Never know!but … Had taken a low dose antihistamine. Also managed some camomile in my bath. And a light smear of E45 cream on legs.. wow! And I wondered if eating more white bread than usual could contribute to itching.. but prob just very low pred! And age!!!!!

[Angelsmummy in reply to Bedwell]

White bread!YUK!Nice whole grain if you have to have bread,white too processed methinks!Nice whole grain flatbreads are good too!Glad you seem to be having a bit of relief B,long may it continue.What I like about putting an emollient in the bath B is that a nice long soak,soothes muscles and the the emollient DEFINATELY helps with the dryness.As PRO said,applying to damp skin is better so maybe don’t dry yourself too much after shower or bath eh?Good luck!xx💐😜🤞🏼

[PMRpro Ambassador in reply to Angelsmummy]

Wheat is wheat is wheat - whether white or brown!!

[Angelsmummy in reply to PMRpro]

Of course but I know what I would sooner eat!

[PMRpro Ambassador in reply to Angelsmummy]

This is very true - though my favourite is proper pure wholegrain rye that isn't sweet like the Polish or Russian sort.

[Bedwell]

thanks all. My cranial osteopath suggested chamomile in the bath.. !!! I have ordered the emollient someone suggested?!coming tomirriw. Sleep well!