PMR and Itching?

[apttony]

I've been diagnosed with PMR for 4 years now, taking Pred during every day, and just worked down to 6.0mg / day, taking it in the morning at breakfast time every day.

Recently I've started to itch, terribly, around the waist, hips, and back, to the extent that I cannot sleep very well during the night. Taking paracetamol seems to blot it out sometimes. I've also noticed that it starts to return in the evening, though it maybe that distractions of the day take my mind off it.

A couple of days ago I did a search on this site for 'PMR + itching' and somebody said that itching can increase as your level of Pred reduces, but I cannot remember who.

I've also read various dicussions on the best time to take the steroids, and what is going through my mind is whether or not to spilt my doseage, say 1 or 2mg in the evening and followed by 4 or 5mg in the morning, thus maintaining the overall 6mg / day.

Has anybody found that this makes things better?

[jinasc]

Are you taking enteric coated Pred?

[apttony in reply to jinasc]

No.

[PMRpro Ambassador]

It isn't unusual for allergies to appear as the pred dose goes down and we have wondered if maybe we develop them as a result of the autoimmune part of PMR. Higher dose pred will suppress an allergic response. There are also several on the forums who seem to have developed mast cell activation syndrome - an autoimmune disorder.

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

Have you tried taking an antihistamine such as loratidine? It seems to help a lot of people - they are cheap and easy to get and may be the simplest answer. If they don't work - ask the doctor.

[apttony in reply to PMRpro]

I've being trying Piriton, but not convinced it really helps. But what about splitting the dosage?

[PMRpro Ambassador in reply to apttony]

Not sure - you can try. But if the problem is an allergy and the current dose isn't enough to suppress the itch, then splitting it MIGHT make it worse. You could also try lots of moisturiser where the itch is - dry skin itches.

[apttony in reply to PMRpro]

Early days though, but took 1mg Pred last night just before going to bed, applied lots of Dermol 500 Lotion, and had a better night, slept through to 6am, waking up with just mild itch. Then took the remaining 5mg to make up the 6mg daily quota. Have to see how this pans out.

[SnazzyD in reply to apttony]

I don’t think it’s the Pred doing it per say. My take on it from my experience of it is that the dose drop is allowing some sort of histamine rebound after being suppressed. It appeared somewhere below 7mg and wore off some mg further down the line. I might be wrong but that’s how it felt.

[Knip in reply to SnazzyD]

I have been taking Cetirizine twice a day for many years now (my GP prescribed it) and it really helps but I also use an anti-itch cream such as Lanacaine on my back at night. There is little worse than itching at night when there is nothing going on to take your mind off it. Hope you find a solution soon. 🙏

[Broseley]

I'm interested to read this. I started on 40mg, now at 12.5mg and all my itching and soreness has returned. Before starting pred, for years I have had itchy ear canals and a sore throat. My scalp itches like mad if I get hot. GP and rheumy not bothered. ENT specialist found nothing wrong but said it could be dry skin (which I have always had). It's funny though how the pred masked it, or did it actually cure it for a while?

[PMRpro Ambassador in reply to Broseley]

If it is an allergy problem - or an autoimmune problems causing it - then the pred will have helped at higher doses by suppressing the immune response. I developed an allergy to wheat starch, definitely not gluten but the starch, and itched in a similar way to dermatitis herpetiformis which is a variation of coeliac disease. When I am well above 10mg pred I have no problem and can eat ordinary wheat products - I can eat spelt and kamut anyway.

[autumnlass in reply to PMRpro]

Hay fever - something I’ve ever only had mildly in the last 30 years was virulent a few days ago with non stop sneezing and nose dripping like a tap. Oil seed rape in full bloom - Loratidine or Cetrizine didn’t help at all - resorted to a Piriton and Beconase Nasal Spray which seemed to do the trick. Also reduced to 9.5 mgm of Pred. Does being on Prednisone affect the production of histamine or is it the PMR? Apologies from diverting itch to sneeze.

[PMRpro Ambassador in reply to autumnlass]

Pred suppresses the immune system so SHOULD make hayfever better - I assume by reducing the histamine produced.

myvmc.com/banners-allergy-c....

uchicagomedicine.org/forefr...

Sure it wasn't Covid?

[autumnlass in reply to PMRpro]

It was very fleeting - am sure not Covid as constitutionally I felt and feel fine! Better do LFT? Feeling very well at moment and Easter weekend was busy too with family.

[PMRpro Ambassador in reply to autumnlass]

Lots of people feel really well but test positive - meet it a lot here as people still have to test to go to work and are totally surprised! At this stage probably not worth it now.

Oilseed rape would have done it to me - vile stuff. One of the joys of living in the mountains - none around here!

[autumnlass in reply to PMRpro]

I’m sure it was oilseed rape… it has been quite windy too .. blown off the fields. It is vile stuff. Use it for cooking though! 🤣. Beautiful day here in East Anglia - hope it with you Pro.

[PMRpro Ambassador in reply to autumnlass]

No - only olive oil. as befits a resident of Italy

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Used to make me sniffle and feel bunged up - have to drive past fields and fields on way to work in early 2000s. Not as much around nowadays though, due to many insecticides being banned -although obviously still enough to cause issues for some.

[PMRpro Ambassador in reply to DorsetLady]

Rape always struck me as a very effective insectitide - never saw as many I felt and birds disappeared too

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Too many sneezing and finding it hard to breathe….

[Longtimer in reply to autumnlass]

I am exactly the same...now on 7 mg, nose either blocked or streaming, feel at night like I can't breathe...Tried Loratine, salt nasal spray, now trying b econase, but doesn't appear to be helping. With so much fatigue don't want anything that will make me drowsy.. Have never had hayfever before, this started last September, has steadily got worse....Think I may have to ring GP for suggestions... have adrenal suppresion, don't know if I have be watchful of that...

[autumnlass in reply to Longtimer]

Am sorry 😣 that those meds haven’t worked for you. The Piriton at night really helped and stopped all the allergic symptoms and gave a good nights sleep too. Hopefully the more knowledgeable team will come to the rescue with a better formula. The chemist suggested an allergy powder which I bought to block allergens but it didn’t work. Hope the GP might prescribe something strong for you. Hope you’ll be feeling better soon. Having this in this lovely weather is tough and unfair. 💐

[Longtimer in reply to autumnlass]

It must be good old Nofolk that's the culprit!Will try Piriton maybe...thank you...

[autumnlass in reply to Longtimer]

It’s good old Suffolk then too! Piriton I found very good at nighttime - not during day though. Would knock me out. Hope you’ll soon be feeling better. It’s exhausting with all the sneezing. 🌈🍀

[Longtimer in reply to autumnlass]

Today totally blocked, don't feel like I can breathe, my mother used good out Vick for everything, might be inhaling that next!.....😏

[autumnlass in reply to Longtimer]

I feel for you how horrible - have you done steam inhalations with the Vick? I should make an appt with your GP - it’s really debilitating for you. xx

[Longtimer in reply to autumnlass]

Yes, I could do without this....expect GP will ring, and I will have to sniff my best down the phone!...😂

[Daffodilia]

Had antihistamine tabs and betnovate cream from gp for itching - now use Avenocream morning and night to keep it at bay

[Broseley in reply to Daffodilia]

Can you put that in your ears? No one seems to be able to recommend anything that I can use!

[PMRpro Ambassador in reply to Broseley]

Some suggestions here:

healthline.com/health/itchy...

[Broseley in reply to PMRpro]

Thanks, that's useful.

[Daffodilia in reply to Broseley]

I would put Avenocream on my ears

[oscarandchloe]

I've had itching from the start 2 +1/2 years ago when on 45mg Pred. As I reduced my scalp itched terribly, tried everything but in the end found that massaging a small amount of baby oil into scalp before washing and leaving in for 30 mins. + only washing every 10 days or so helped with this. Now at 5 mg. back still itches, not sure it's dry but use moisturiser, the itch seems to be under the skin.

[Broseley in reply to oscarandchloe]

I get that sometimes. It's horrid isn't it, because no amount of scratching makes any difference! Good idea about the baby oil. I only wash my hair once a week. My hairdresser says that's good when you have dry hair. I find Head and Shoulders conditioner really good, the one for dry hair.

[Purplegloss]

I have itches across my lower back, and I find that E45 cream works very well.

[witz]

I was prescribed zerobase cream and betnovate when my itching started which helped. I now use dermacare from Boots is better for my skin and I use it every day which seems to be keeping it in control they also do a shower creme .