Severe Itching

[Deiniol]

I have developed severe and sporadic itching. It's mainly on my forearms and back of neck and is worse when I get too warm. It also seems to jump about my body, on my scalp, legs, face, anywhere really and it's driving me crazy. I've tried antihistamines and E45 itch cream but to no avail. I've put cold compress on my arms which seems to suppress it but comes back once removed. It's not there all the time. Anybody experienced anything similar and how to treat it? I have lupus and on various medicines including prednisolone, hydroxychloroquine, methotrexate, blood pressure tablets and angina tablets. Thanks in advance.

[Mandalou]

Hi Deiniol

I don’t have Lupus but Seronegative RA and am on Benepali injections and Hydroxychloroquine.

I have been taking both since 2016

I take 400 mg of Hydroxy , 200 mg in the am and 200 mg pm. Always just after food to protect my tum.

I am also very allergic to it and suffer the exact roving itch that you describe.

Forearms, particularly, legs, hands, face, scalp.

Unbearable after a shower!

This happened after I had been taking Hydroxy for about a month but my Consultant says the benefits outweigh the allergy.

To combat the itch I am prescribed up to 10mg of Certrazine Hydrochloride ( Benadryl) 5/6 times daily.

So five times the amount that people take over the counter for hay fever.

I take a tablet alongside my Hydroxychloroquine morning and evening and usually this has the prophylactic effect necessary to contain the itch.

I always carry some with me and if the itch breaks through then I pop an extra couple of Certrazine.

This has worked brilliantly for me. So speak to your health professional team and then my advice is to always pop one in when you take your Hydroxychloroquine dose and then if you get the tell tale itch on your face( mine is always by my nose when it starts) or arm etc pop an extra one.

Good luck and hope knowing you aren’t alone in experiencing this side effect helps a little.

Mx

[Turquoise-1 in reply to Mandalou]

Hi there Mandalou,

I have that too. Unfortunately I had a lot of side effects with Hydroxychloroquine & Prednisolone so no longer take either. Hydroxychloroquine actually worsened the itching particularly on my scalp.

I have SLE Lupus diagnosed by a Consultant Rheumatologist but I am soon to see Dermatologist also.

I keep my very dry skin moisturised with Dermol 500 lotion but it definitely does not prevent the itching - last night was awful, heat, hot water, sunlight all make it worse. I have tried various antihistamines at the advice of my GP & do get a bit of relief ….. sometimes.

I rather feel that the more meds I take the worse I get, maybe a detox would help.

Incidentally my Husband who has Rheumatoid Arthritis, suddenly (at the age of 61), became Coeliac; I’m convinced it was due to his gut being subjected to a barrage of various different meds, DMARDS & Biological Treatments. Although, since having Rituximab IV infusions his RA is much better controlled & has given him a new lease of life.

Sorry I can’t offer you anything in terms of practical help but I really do empathise and extend to you my moral support. Helps me too sharing my own ‘stuff’ with fellow suffers as sometimes I feel like I am the only one having all these weird symptoms!

Others may have more helpful advice for you from their own experiences, just know though, you’re not alone.

All the best 🙃

[Deiniol in reply to Mandalou]

Thanks very much, I will have a word with my clinic.

[Tellyfic]

Please get your kidney function checked out. It could be they can’t filter the toxins in your body efficiently and it accumulate in your body. Kidney disease is a silent killer, specially for people lupus and diabetes.

[ange726]

Hi Deiniol

I have CNS lupus and take hydroxychloroquin. I go through phases of itching just as you prescribed. It is awful. The itch would jump all over and I would be furiously scratching my body. I couldn't use any kind of sponge or shower scrunchy to wash with and still can't. I very rarely use perfumed shower gels/wash now. I try and use an oat based or simple wash. I gently pat dry my skin and use menthol cream if it's bad. It's gotten better over the years but it still pops up every so often. Hope you find relief soon. 🤞

[Deiniol in reply to ange726]

Thanks very much, I will be speaking to the consultant.

[OldTed60]

Hi. For me it felt like a neuropathic itch on both forearms with no rash apart from a follicular one I caused with scratching. I got a few long lasting lesions which were really strange - with white chalk core. Sent photos to my dermatologist who thought it was something called relapsing perforating collagenosis secondary to my CTD overlap - but as it was during lockdown too risky to biopsy. These finally went away with an increased dose of Mycophenolate after 6 months of itchy hell.

The only thing I found that helped the awful itch was Dermacool cream - which a friend recommended. I get it on prescription and have some 2% and 5% menthol - depending on where I need it. It gave me some respite when nothing else would. I still don’t know the cause but I thought at the time it was skin tightening due to scleroderma for me. Not sure though because I don’t have this disease in my skin although maybe the Mycophenolate and Iloprost help. Antihistamine did nothing for this itch for me.

[Deiniol in reply to OldTed60]

Thanks, I'll ask my GP for that dermacool.