Uncontrollable itching: Hi. I have recently reduced... - PMRGCAuk

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Uncontrollable itching

Wraysbury profile image
26 Replies

Hi. I have recently reduced my prednisolone to 3 mgs This has been a gradual reduction from 15 mgs over 4 yrs. however with this reduction I now have awful itching at the base of my skull, outer thighs and lower spine and forearms. It is a deep itch which scratching can’t reach and I’m now bruised from when I simply can’t resist scratching. The GP has given me a host of creams, washes, shampoos and antihistamines. None of which help. PLEASE, if anyone has had success with relieving this, let me know. I feel desperate and almost preferred the pain as I could get some relief from that. Thanks ps I have PMR and fibromyalgia

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Wraysbury profile image
Wraysbury
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PMRpro profile image
PMRproAmbassador

Have you tried upping the pred dose to see if it is the reduction on dose that is the reason? Itching can happen in adrenal insufficiency and it may be your body isn't keeping up getting back to producing cortisol as you reduce the pred.

Wraysbury profile image
Wraysbury in reply to PMRpro

I haven’t. I did wonder about that, but am very reluctant to increase as it’s been such a long hard struggle. I’ll talk to my GP. That does seem the most logical answer. Thanks

PMRpro profile image
PMRproAmbassador in reply to Wraysbury

Did it just start at 4mg? Were you OK at 5mg? Itching is so awful - especially when it interferes with sleep.

Wraysbury profile image
Wraysbury in reply to PMRpro

It started at 3 mgs

PMRpro profile image
PMRproAmbassador in reply to Wraysbury

Just occured to me - if it were me I would ask at the chemist for a homeopathic remedy called Rhus Tox. Whether you subscribe to homeopathic lore or not - all I can say is that I used it for my daughter when she had chicken pox and she never scratched at all!

LynnWeed profile image
LynnWeed in reply to PMRpro

Thank you, Pmrpro. During this last year, I have had some similar itching and a very red rash. I have meralgia parenthetical ( along w biopsy proven treated GCA, as you may remember).

The rash seems to go along the place of the inguinal tendon (affected by the mer. Paresthetica).

Currently using the prescribed cream for fungal infections. The rash and itch are high up on both thighs - into the crease between my legs -- stops at the vaginal area.

The cream seems to deal with the redness. After a few days, the itch returns, then the redness. I use the cream -- + onwards ?

Will be seeing the dr. - 10 days. Wondering if you have encountered this before, Pmrpro?

Will try the homeopathic treatment, which I prefer.

This is going on a year now, so medication advice - positively accepted. Ty much

Best, Lynn

PMRpro profile image
PMRproAmbassador in reply to LynnWeed

I had something like that, same place, in the early days of PMR, long before pred. The only thing that worked then was a triple substance cream, Trimovate, containing an antifungal, antibacterial and mild steroid. The doctor was of the opinion it was thrush (antifungal) that had a secondary bacterial infection. It fitted. Removing most carbs from my diet also helped - I had developed an allergy to something in the structure of wheat starch used commercially. I'm fine with spelt and rye so it's not gluten.

Wraysbury profile image
Wraysbury in reply to PMRpro

I tried increasing pred to 5 mgs yday and the itching started to die down, today I’ve taken 4mgs and I can resist scratching. I’ll see my GP tomorrow to find out if they can test if my adrenals are working and what can I do to stimulate them. Thanks for your advice. Xx

PMRpro profile image
PMRproAmbassador in reply to Wraysbury

The only thing you can do is stick at a low dose which is what stimulates the feedback system to produce a top-up of cortisol - there is nothing else that does it. It means a very slow taper with very small steps down so the body has a better chance of adjusting without too much discomfort.

Flutterbies57 profile image
Flutterbies57 in reply to PMRpro

I didn’t realise this . I am looking for a list of adrenal insufficiency problems .

PMRpro profile image
PMRproAmbassador in reply to Flutterbies57

niddk.nih.gov/health-inform....

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Flutterbies57

Listed at end of this link on adrenals -healthunlocked.com/pmrgcauk...

SheffieldJane profile image
SheffieldJane

When my grandson had Chicken Pox, I would give him oatmeal baths and then put calamine lotion on the spots. It worked like magic for the itch and he got no scars. I wonder if that could help you?It does sound pretty deep and internal though. Itching is mild pain, I read once.

You are at the stage where a Synacthen Test from an Endocrinologist would make sense, to see what is happening with your Adrenal function, picking up on PMRPro’s remarks.

HeronNS profile image
HeronNS

Looking at the other answers I'm reminded of when my daughter had chicken pox we got a cream from someone who made her own and she (my daughter, who was fifteen) claimed it worked much better than any of the lotions etc we'd got from the drugstore. May have been something like what PMRpro suggests although I'm afraid I can't remember any of the ingredients. They were all natural herbal things. I myself have found loratidine tablets (allergy med) helpful for mildly itchy skin as well as an annoying runny nose, so some sort of allergy may be involved.

Also, if the doctor's potions have included something like hydrocortisone you can experience a rebound from that. I had to wean myself off hydrocortisone cream years ago. What worked for me at that time was food grade hemp oil plus also a cream then called Impruv and made in Germany, now made elsewhere and called Physiogel, but has same ingredients, and gradually reducing use of the hydrocortisone (a much faster wean than pred for PMR!).

Wraysbury profile image
Wraysbury in reply to HeronNS

They wouldn’t give me a cream with steroid in

HeronNS profile image
HeronNS in reply to Wraysbury

Probably a good thing, based on my experience (but in my case it was just my hands, probably from frequent washing making skin very dry). How have you been otherwise?

Janstr profile image
Janstr

My husband experienced the same thing after the 2nd Covid vaccine, scratching at times until he bled. After many creams including a scabies treatment, drugs including prednisone & anti histamines & showering using the smelly pinetarsol , he eventually saw a skin specialist. He was told to stop showering everyday, replace soap with aqueous cream, & use cetomacrogol cream before going to bed. And it worked! By the way he was told it wasn’t caused by the vaccine , but by his immune response to it, & had the 3rd with no side effects

Amkoffee profile image
Amkoffee

Try ice/cold compresses to relieve the itching.

Alebeau profile image
Alebeau

I use peppermint cream and it seems to work wellMy itches are mostly on arms and quite annoying as the more I scratch the itchier they get. After applying peppermint cream (my wife's remedy) the itching subsides.

Worth a try.

musicality profile image
musicality in reply to Alebeau

~Where does one get the peppermint cream from please?

Alebeau profile image
Alebeau in reply to musicality

Sorry but my wife does not remember where she ordered it from. We are in Canada so you may want to search for some local to you.Good luck.

Pic of peppermint cream that works for itches
Singr profile image
Singr

I’ve had various kinds of itching. Frustrating leg and ankle scratching especially. During the night is the worst. This has now reached a new level. I now have Nodular Prurigo which has given me this disgusting looking rash on my chest and buttocks. Nice! Nothing seems to have remedied it.

Wraysbury profile image
Wraysbury

I’ve seen a new GP today who is a dermatologist! Amazing. My bloods are all normal, so we are going to eliminate the various tabs I take 1 at a time and see if the itch stops. It’s a deep itch, so if it doesn’t go with stopping any of my meds, he’ll refer me to neurology. So I was sad that he can’t stop it now, but as there’s no actual rash to see, just extensive bruising from scratching he says neurology won’t see me until we’ve checked the medication and perhaps the prednisolone on higher doses had kept this at bay. He’s also ref me to endocrinologist to have my adrenals. So I’m trying the rubbing rather than scratching which works on my arms, so thanks for that suggestion Blearyeyed and if I have to scratch my back I’m using my knuckles! Thanks xx

Karenjaninaz profile image
Karenjaninaz in reply to Wraysbury

When I exercise an area that I haven’t used in a long time, that area will itch and it’s has nothing to do with the skin. It is it is a nerve issue. What actually helped me was acetaminophen. You can also try Benadryl. Benadryl worked when I had shingles. It was suggested by the emergency room doctor when I actually went to the ER with extreme pain from shingles- a nerve issue.

Wraysbury profile image
Wraysbury in reply to Karenjaninaz

Unfortunately I’ve been given a strong antihistamine prescription by GP with no effect. And Panadol doesn’t touch it! Still we are all different and thanks for the suggestion. I’m really glad it works for you 😊

Wraysbury profile image
Wraysbury in reply to Wraysbury

I have a dermatologist appt on 8th for skin biopsy!! Incidentally I took my dog to the vets with extreme itching and she had a biopsy the next day! She has an autoimmune disease and has started prednisolone!! I did ask the vet to take my biopsy, I wouldn’t have needed a general anaesthetic like my dog, funnily enough she refused! Xx

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