Steroids and itching : It’s me back on here again... - PMRGCAuk

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Steroids and itching

Doraflora profile image
68 Replies

It’s me back on here again!

Since my diagnosis of PMR 2 years ago (starting at 15mg of Pred and now down to 5), for the last few months I’ve suffered so badly with severely itchy skin which is really dragging me down.

When I get to speak to my GP I’m going to insist on a referral to a dermatologist & not be ‘fobbed’ off with yet another cream. (Antihistamines haven’t helped either).

Despite trying countless remedies from the GP, I’m now starting to wonder if it could be a very late reaction to the Pred? And, if so, what could be a good alternative?

I’ve been back on the 5mg a couple of months now and can see myself staying like that for a while. I’ll just live with the shoulder pain as long as I can

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Doraflora profile image
Doraflora
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68 Replies
SheffieldJane profile image
SheffieldJane

I hope you mean antihistamines! Are you on any other drugs? I was given Tramadol at one stage - it caused intense itching. The trouble is that if it is Prednisalone causing this there really isn’t much you can do until you are off it apart from what your doctor has prescribed. Base cream seems to soothe my skin, even my Psoriasis. I just use E45 cream regularly.

lgreene123 profile image
lgreene123 in reply to SheffieldJane

I started Prednisolone on 40mg three years ago and I am down to 2mg. After six months on 2mg, I started itching all over. Antihistamine did not help, and there was no hives as I did, when I had urticarial Vasculitis. Eventually, my clear GP sent me for a barrage of blood tests, and picked up on ‘some liver issues’, and referred me to the liver specialist asap. Please press your GP further.

Doraflora profile image
Doraflora in reply to lgreene123

Well, I’m awaiting the results of recent blood tests so will see if they show anything.

I still think it’s coincidental that we got a water softener installed just prior to the itching started, but they’re designed to improve skin not worsen it🙄

Doraflora profile image
Doraflora in reply to lgreene123

I’m happy to report that my blood results today showed my LFT ‘normal’ as is my eGFR.

Mind you: the GP worried me when she said my kidneys were all over the place and below normal. Then she realised she’d been looking at the wrong thing!! She apologised profusely but that was after I said she’d worried me he’ll of a lot. In fact she thought it quite humorous 😡.

However, all good in the end, just a tad low on the sodium (128) and borderline with cholesterol. Phew!

lgreene123 profile image
lgreene123 in reply to Doraflora

That is good news.

Doraflora profile image
Doraflora in reply to SheffieldJane

Oops, Sheffield Jane, predicted text🤣. I’ve amended my original post.

Well, I’ll wait & see what the blood results are.

SheffieldJane profile image
SheffieldJane in reply to Doraflora

Yes, it did strike me that we could do with some, if they weren’t so deadly.

SheffieldJane profile image
SheffieldJane in reply to Doraflora

I just googled itching from water softener and learned that in some people it can cause increased dermal absorption of chlorine and this causes itching. What a complete drag. It is the culprit!

PMRpro profile image
PMRproAmbassador in reply to SheffieldJane

OH's mum had a water softener - hated the darn thing! I grew up with about the hardest water you could have - did me no harm. My aunts got water from the Birmingham water supply from mid-Wales, so soft it was yellow!

The water here is pretty hard too - like where I grew up, filters down through dolomite here - calcium magnesium carbonate. Maybe that is why my bones are good!

Are you sure that is it?

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to PMRpro

Hard water area mist of my life as well -only time not in Outer Hebrides -where it was the colour of peat! Bit disconcerting first time we ran a bath…

PMRpro profile image
PMRproAmbassador in reply to DorsetLady

Peat colour is strange isn't it!!!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to PMRpro

Especially a bath ful😳…kids weren’t impressed-especially teenage daughter!

Just add to a lot of strange things in OH -could write a book just about those 2 years…

PMRpro profile image
PMRproAmbassador in reply to DorsetLady

Even more off-putting to drink if you haven't experienced it before!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to PMRpro

🤣😂

PMRpro profile image
PMRproAmbassador in reply to DorsetLady

Good reason to add a bit of whisky ... ;)

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to PMRpro

Same colour….😳

PMRpro profile image
PMRproAmbassador in reply to DorsetLady

Exactly :)

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to PMRpro

Pity I don’t like whisky - but himself made up for me.! In those days used to drink Bacardi - and that didn’t look right….

PMRpro profile image
PMRproAmbassador in reply to DorsetLady

Wrong tone of brown ;)

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to PMRpro

Bacardi’s white rum 😉

PMRpro profile image
PMRproAmbassador in reply to DorsetLady

Oh OK - I wouldn't know, never drank rum except during a science meeting on Antigua many years ago :)

SheffieldJane profile image
SheffieldJane in reply to DorsetLady

No wonder you look so young having been in a mist of hard water all your life. All those minerals! 😊

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to SheffieldJane

🤣😂

Doraflora profile image
Doraflora in reply to PMRpro

When we moved to our new property last September my hubby was adamant he wanted to get a water softener. I was against it but he said I could choose everything else in the house, so I thought that was the much better deal😀👏

Tbh, our water in this area is so damn hard, it’s ruined countless kettles, irons, shower trims etc, the water softener has really eliminated all that.

And, no, I can’t be 100% certain it’s the softener that’s causing such itching, PMRpro. I’m going to insist I see a dermatologist when I speak to my GP this week. I’m fed up of being fobbed off with yet another cream. It wouldn’t have been like this at my previous surgery but, hey ho....

PMRpro profile image
PMRproAmbassador in reply to Doraflora

I think it was SJ I was asking - can't find it now.

I really don't like tea made with soft water and I don't think my shower here suffers. I choose kettles without an exposed element and you get self-descaling irons. Not that I do enough ironing for it to be a problem ;)

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to PMRpro

Ironing? Me nether😊

PMRpro profile image
PMRproAmbassador in reply to DorsetLady

I do iron - just very selectively ... t-shirts/vests and bedding - nothing like freshly ironed duvet covers and pillowcases that were dried outside :)

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to PMRpro

…very 😳

SheffieldJane profile image
SheffieldJane in reply to PMRpro

I just googled “ does water softener cause itchiness” and got the above information. I think I can smell chlorine in our tap water sometimes. I read that we sold the good Yorkshire stuff to London.

Doraflora profile image
Doraflora in reply to SheffieldJane

I’m still not convinced though, Sheffield Jane. Not until I have some skin tests done - that’s when I can eventually see a dermo person, of course...

I guess it could be anything causing it.

SheffieldJane profile image
SheffieldJane in reply to Doraflora

Good luck Doraflora it must be maddening.

Doraflora profile image
Doraflora in reply to SheffieldJane

Thanks, Sheffield Jane. I will get to the bottom of it.

Pandora2 profile image
Pandora2

As well as PMR I also have PBC, an autoimmune liver condition. Quite a few of my fellow sufferers have what they call the dreaded itch. If I were you I would ask for LFT. liver function test next time you see your GP, as itching is a symptom of many liver problems. X

Doraflora profile image
Doraflora in reply to Pandora2

Well, I’m still awaiting the results of general blood tests, Pandora2. Would this LFT be part of the ‘normal’ test for the liver?

I’m also a carrier for haemochromotosis, which means (for those who’ve not heard of it) that I carry an iron overload, which is checked regularly by a ferritin serum test.

Pandora2 profile image
Pandora2 in reply to Doraflora

I don’t think the Liver function test would be included even in a full spectrum blood test, I just always ask for it to be included because of my PBC. They never remember to include it automatically, it’s quite a rare condition so half of clinicians don’t know very much about it and forget to monitor it.Other liver conditions can cause itching so I would just mention it to your GP as a possibility and ask for an LFT.

I asked to be tested for PMR and was proved right. I think you need to be proactive in your own health care these days. Good luck X

PMRpro profile image
PMRproAmbassador in reply to Pandora2

If I have blood test they always include LFTs - but then I'm not in the UK.

Pandora2 profile image
Pandora2 in reply to PMRpro

Oh that’s good, you should get the information that you need then. I hope you get to the bottom of it with something not too serious. X

PMRpro profile image
PMRproAmbassador in reply to Pandora2

Not me with the problem - I was replying to Doraflora asking if LFTs are routine

Doraflora profile image
Doraflora in reply to PMRpro

I don’t know tbh, PMRpro. I’m currently trying to get through to the surgery to ask (this new surgery is rubbish though!😡).

PMRpro profile image
PMRproAmbassador in reply to Doraflora

A common refrain!!!!

Pandora2 profile image
Pandora2 in reply to PMRpro

Sorry got you two mixed up, I’m new you know! X

PMRpro profile image
PMRproAmbassador in reply to Pandora2

It's OK - but if you look at the reply, on the computer at least it tells you who a response is meant for if it is someone other than the person who started the post, HU has a really silly nesting system so a reply is sometimes a long way from what it is replying to.

Pandora2 profile image
Pandora2 in reply to PMRpro

Yes indeed! Probably not helped by my using an iPad, the body of thread is often off screen when replying.I’m sure I’ll learn eventually. X

PMRpro profile image
PMRproAmbassador in reply to Pandora2

They are a mystery to me - I couldn't do what I do on one, I need a keyboard. I do now have an iphone - I can take pictures with it!!!! And send an email. I don't really need it though I might get the cheapest contract and see how it is for being a hotspot for the computer ...

Doraflora profile image
Doraflora in reply to PMRpro

I like the PC for some things, PMRpro, but prefer my iPad for most things as the speed is much quicker, as is my iPhone.

And talking of contracts, when we joined a new provider when we moved house, as part of our broadband package they offered a £2 a month SIM card, which is a great win win. I’d been paying £20 with my old provider.

PMRpro profile image
PMRproAmbassador in reply to Doraflora

Cheapest contract here is 8.88 euros a month (don't ask - it's Italy) and has more internet than I have on my broadband! Still debating - i usually struggle to use 5 euros a year on my burner phone!!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to PMRpro

Still see who you, or anyone has responded to on iPhone, iPad

PMRpro profile image
PMRproAmbassador in reply to DorsetLady

Thought you might ...

Doraflora profile image
Doraflora in reply to Pandora2

Ha, pandora2. If it’s any consolation I’m still getting used to this site, too🤣

Pandora2 profile image
Pandora2 in reply to Doraflora

Thank you Doraflora, don’t worry, at my age one doesn’t bother about feeling foolish, one just goes on regardless. X

Doraflora profile image
Doraflora in reply to Pandora2

Hey, Pandora2, we must be in the same club as I don’t give a hoot about making myself look silly: I do it often😂.

Pandora2 profile image
Pandora2 in reply to Doraflora

Almost worth getting older, to not give a hoot isn’t it?🤪🥳👺😬

Doraflora profile image
Doraflora in reply to Pandora2

Yep! I’m quite enjoying it actually. “Say it as it is....”

Doraflora profile image
Doraflora in reply to Pandora2

I’m happy to say that my LFT and kidney function results are all fine, Pandora2. That’s a relief!

Pandora2 profile image
Pandora2 in reply to Doraflora

So pleased about that but where does that leave your itching problem. Are you still suspecting water softener ? I went to see doctor today and she agreed to refer me to the osteoporosis clinic when I refused AA. I have had pains in my shoulder blades since I took my first dose 10 days ago. Only just worked out that the pain is wind, caused by AA, as it moved about. I’ll be burping for weeks. She also agreed for me to adjust my own Pred dosage, so I only have myself to blame if I get it wrong now ,don’t I? Anyway a productive consultation. X

Doraflora profile image
Doraflora in reply to Pandora2

Blimey, I’m jealous of your ‘went to see my doctor’, Pandora 2. Our surgery doesn’t seem to have that luxury I’m afraid. I so miss our old surgery (prior to moving home).

This one is just about triage phone calls. Even when my skin was really, really bad they wouldn’t see me!

Anyway: on a positive note, My skin is feeling slightly improved since I stopped drinking the hard water yesterday morning, so hopefully that’s the culprit. 🤞

I’m happy that you had a good consultation today. Onwards & upwards...

Pandora2 profile image
Pandora2 in reply to Doraflora

Don’t get too envious Doraflora, notice I didn’t say MY doctor. Our surgery is just the same “telephone triage” mostly, was very lucky to get a face to face, I argued with the surgery pharmacist who seems to have become the go between for the doctors. I only actually know one doctor in the surgery now all the old team have either died of COVID or retired in fear of it. The doctor I saw was a locum who I pleaded with to consider staying. Glad your skin is feeling better, hope you’ve pinpointed the problem.

Yes indeed .. onwards and upwards… we’ll beat this bugger yet!!! X

SheffieldJane profile image
SheffieldJane

This was it> aquahow.com/why-does-my-wat...

Doraflora profile image
Doraflora in reply to SheffieldJane

Thanks, Sheffield Jane. It’s an interesting article but I’m trying to find out just who this chap is who wrote it, other than a “blogger”. Whether he has a medical background etc.

The water issue I’m definitely going to flag up again, although I have mentioned the water softener to the medics before & they made nothing of it. They will now though🤣.

Thanks so much for alerting me to this.

I had raised this with the water softener company ages ago but they made nothing of it. Wonder why.....

PMRpro profile image
PMRproAmbassador in reply to Doraflora

Can't imagine!!!! I'll happily continue to wipe the shower down! And the cost of a water softener will pay for a lot of new kettles!

SheffieldJane profile image
SheffieldJane in reply to Doraflora

It’s the sensitivity to chlorine for the Dermatologist to test that caught my eye. I can smell it on my water from the tap sometimes. We drink filtered though.If it is that, there could be a solution. He does sound like a special interest blogger, but with no commercial axe to grind apart from sponsors. He boasts of academic qualifications. Maybe he’s on FB or another platform ( get me!)

My granny collected rainwater in a barrel to wash her hair, she swore by it. ☺️

Doraflora profile image
Doraflora in reply to SheffieldJane

Well, we had a separate hard water tap connected when we had the WS installed as i didn’t fancy drinking softened water. I’ve been drinking shedloads of the stuff since (that’s when the itching started) but first thing in the morning it tastes fine, but after leaving in the glass for 10 minutes or so it then smells putrid and I’m unable to drink it. You’ve given me something to think about there, Sheffield Jane, the itching might be down to the chlorine in this hard water tap and not the WS itself.

I’ve gone out today & bought some bottled water to experiment with.

Sorry for all this folks, but this problem has caused me some distress these last few months (more than the PMR tbh).

PMRpro profile image
PMRproAmbassador in reply to Doraflora

I would contact the water company to ask if they can test the water.

SheffieldJane profile image
SheffieldJane

Fingers crossed!

Doraflora profile image
Doraflora in reply to SheffieldJane

Well, I’m not tempting fate, but I’ve not drank water out the hard water tap for 24 hours and, maybe it’s psychological, but my skin has felt a bit better. Time will tell.

And yes, I will contact the WS agent, PMRpro if not.

SheffieldJane profile image
SheffieldJane

We drink tap water that has been stored in a filter jug in the fridge. Cheaper than bottles.

PMRpro profile image
PMRproAmbassador in reply to SheffieldJane

And infinitely better for the environment ...

Doraflora profile image
Doraflora in reply to PMRpro

The bottles I bought are recyclable thankfully

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