Is my itching lupus/meds/combination?: Good evening... - LUPUS UK

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Is my itching lupus/meds/combination?

ange726 profile image
18 Replies

Good evening

A few months ago I started to itch. This only happened when I was in the shower and when I dried myself. I thought it was my shower gel so proceeded to change shower gel 10 times until I settled on a natural soap called Beco. The itching carried on. I then changed my washing detergent and use ecoegg and an eco conditioner. The itching did not stop. I then thought it was the hard water but was on holiday to somewhere that had soft water and it made no difference.

My itching has now worsened and now it won't stop. Arms are the worst but it is all over.

I am diagnosed with CNS Lupus and I am taking the following meds; hydroxy, micophenolate, nortriptyline, tapentadole. I have been to the Dr and he prescribed a cream called aqueous to see if that helped but didn't. I get my blood tested every 4 weeks and was last taken last week. The nurse said that if my results showed any concern they would alert me straight away. I have also tried E45.

Is anyone else suffering the same and can offer any advice on how to control this?

Many thanks

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ange726
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18 Replies
leapingmonkey profile image
leapingmonkey

Sorry I don’t have the answer for you, but know you’re not alone, I also have itchy skin, my GP prescribed Aveeno to wash with. I also use an in shower moisturiser which helps. I’m not sure of the cause, auto-immune? Meds? Age?

ange726 profile image
ange726 in reply toleapingmonkey

Hi leapingmonkey. Many thanks on replying. Sorry to hear you too suffer. It's just another thing to add to the list of ailments that is happening...sigh...As you have suggested, it could be many things. My GP thinks the most likely culprit is my hydroxychloroquine so is looking into reducing my dose which I'm hoping doesn't cause a flare up. Thank you for your support. It means a lot knowing I have people who understand and know first hand about what I'm going through

PMRpro profile image
PMRpro

Soap is soap is soap - if it foams it will be stripping the natural oils from your skin and drying it. Dry skin often itches.

There is also what is often and incorrectly called an "allergy to water" : aquagenic urticaria. You said it stopped after your shower originally - did you have hives with it?

rarediseases.info.nih.gov/d...

But basic stuff would be to look at the medication you take. Tapentadol can cause allergies although it is rare:

"A very serious allergic reaction to this drug is rare. However, get medical help right away if you notice any symptoms of a serious allergic reaction, including: rash, itching/swelling (especially of the face/tongue/throat), severe dizziness, trouble breathing."

Hydroxycholoroquine and nortriptyline also both list itching, nortryptiline lists rash, hives, urticaria.

None of them list it as common - but even rare doesn't mean it doesn't happen.

ange726 profile image
ange726 in reply toPMRpro

Many thanks for your reply PMRpro. I only turned to soap (with only natural ingredients) because I had tried all different types of shower gel . But I totally agree about the soap drying my skin so I used e45 or Aveevo after. I don't have any rashes it literally is just itching.

I may contact my lupus nurse in London to get her thoughts.

Many thanks again

KayHimm profile image
KayHimm

I have damage to my nerves which causes itching after a shower. I am told in my case it is related to temperature change. The thing that has helped is to use a hair dryer from head to toe after showering. Do you also have autonomic dysfunction? Hope this helps. This itching can be so severe.

ange726 profile image
ange726 in reply toKayHimm

Hi KayHimm. Many thanks for taking the time to reply. I have never heard of autonomic dysfunction but as my illness is to do with the nervous system I will investigate further with my GP.

Shorthouse profile image
Shorthouse in reply toKayHimm

I also have reactions to different temperatures .hives and rashes.this has lmproved over the years.i still carry epi pens .feeling weird at the moment with change in temperature.l don’t think anyone knows .goes with other a i stuff. I try to keep everything kpure. Food toiletries cleaning products x

Supul profile image
Supul

So sorry you are suffering. It's horrible isn't it? Especially, trying to figure out cause.

I developed itching, though I did get a rash the first time. The itching drove me crazy!

I agree with everything PMRpro. She is correct on all of those suggestions. I know, because I had to research so much, when I suffered itching, and I also got skin testing.

I eventually got chemical testing via a dermatologist appointment.

I was diagnosed with significant allergic reaction to metals cobalt and nickel. I was given a list of what to avoid.

Metal is now getting into food, drinks, cosmetics, toiletries, medications, water, clothing, fabrics, building materials... the list is appears endless... and, metal toxicity is increasing within the population.. car fuel, fish, on n on the list goes...

I can no longer use OTC toiletries, cosmetics, hair dyes, etc..

Oats and wheat were particular triggers, though I had previously eaten weetabix and porridge. I could no longer use aveeno..

I now use a body wash and moisturizer prescribed.

I was also found to be over prescribed levothyroxine, at the time of investigations. Levo was being dumped into my blood... this med dose has been reduced twice.

I was also found to have 2 small lesions on the liver. I do not drink alcohol fortunately, as I cannot tolerate it anyway.

I was told, that itching can be a sign of liver disease. As the liver is the powerhouse of detoxification. I was also told, that the lesions on my liver could have been there from birth. No action to be taken.

Thankfully, once I stopped using stuff I was advised to avoid, my skin itching stopped. I feel sure when you find your triggers yours will too.

Good luck.

ange726 profile image
ange726 in reply toSupul

Hi Supul. Many thanks for your email. This has given me a starter for 10 and with the advice from PMRPro I can at least have a discussion with my GP. I am very fortunate that my GP is a very thorough Dr and is open to discussion and doesn't shy away from things he may not totally understand.

I'm so sorry to hear what you have been going through but it's a comfort to know that you have found what made you itch although, as ever, nothing is straight forward. Reading what you had to research and navigate sounds like it took a while to find all the answers. This is something that I'm used to so will prepare myself for a potentially long process but with a hopefully positive result by the end.

GERY profile image
GERY

HI ange726. I sympathise with you, I am 75 and have had discoid lupus since my 20's, and with every flare chronic itching everywhere, worse on my scalp with hair loss patches. I am not on any medication other than a steroid gel SYNALAR which I have to apply as soon as any spots start and also on my scalp. I don't really like using this as it thins the skin overtime but as my itching has become unbearable I am using it more. This was prescribed over 20 years ago & I haven't seen a dermatologist since that time. I really feel for you & hope you find a solution to your problem, kind regards

ange726 profile image
ange726 in reply toGERY

Hi GERY. Thank you for your kind supportive words. I'm so sorry to hear you have been battling and suffering for so long. I thought 2 years was exhausting! My GP thinks it could be my hydroxychloriquine but wants to speak to my rheumy first before taking action. My only thought was that since i have been on it for a while (18 months) why now. Ill carry on doing my research and hopefully find a solution soon. I hope you get some relief and wish you well. Warm regards

Chanpreet_Walia profile image
Chanpreet_WaliaLUPUS UK

Hi Ange726,

I am sorry to hear that you are experiencing an extremely itchy rash at the moment. Have you been referred to see a dermatologist about this?

We published a blog article on coping with itchy rashes which I hope you will find helpful: lupusuk.org.uk/coping-with-...

ange726 profile image
ange726 in reply toChanpreet_Walia

Hi Chanpreet. Not been referred . GP thinks its my hydroxychloriquine and wants to reduce my dose but is going to chat to my lupus nurse to make sure they are happy. Thank you for the link. Ill definitely be reading it to hopefully get some ideas on how to help.

Chanpreet_Walia profile image
Chanpreet_WaliaLUPUS UK in reply toange726

Okay, great. Please keep us updated on how you get on.

nileshg profile image
nileshg

can you try moisturers and coconut oil on your skin after bath. If its due to dry skin then it might reduce.

Anti histamin medicines might help if its allergy related. tablets like mondeslor/deslor.

then u can suggest doc to do a microscopic analysis of the irritated skin with the help of a lab. to underatand the cause.

Vsully profile image
Vsully

Hiya ange,I have a problem with itchiness all over,so I've been given the Dermol 500 moisturiser for in and out of the shower,it seems to work but maybe just for a day,you could maybe mention it at your next appointment also maybe ask for antihistamines and see if theres any improvement x

ange726 profile image
ange726 in reply toVsully

Hi Vsully and thank you for your advice. Yes I also use that moisturiser. I now use childrens shower gel and pat dry, not rub and use the moisturiser. Thankfully its not every day.

Vsully profile image
Vsully

Yes I was also using baby farm shower,shampoo an moisturiser it is good,but was given Dermol 500 from Dr,

so been trying it for now x

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