Yesterday I dropped my pred dose from 3mg to 2.5mg. I felt OK, but I couldn't sleep last night due to persistent feeling just like an insect was crawling across the back of my neck. I jumped out of bed 3 times, brushing the area and shaking my nightie to dislodge the insect. But a minute after getting back into bed it started again. Then it went to my shoulder. I also felt itchy on my scalp and tingling on my calves. Eventually the feelings stopped and I was able to doze off. My question is, could this be pred withdrawal, adrenals, or something else? It was really unpleasant!
Insects crawling on my skin?: Yesterday I dropped... - PMRGCAuk
Insects crawling on my skin?
Written by
Broseley
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I get this symptom from time to time. I find that a plain base cream soothes it. It is exactly like insects crawling. I think it must be another gift from Pred. It has only happened at the low doses.
Thank you, at least I know it is pred related and that it wasn't a real insect! My Fitbit shows I got to sleep at around 3am!
I get it on my forehead, it’s weird.
If I get it again I'll try to ignore it.
Plain unscented cream does soothe it. I bought a back scratcher because it happens in unreachable places sometimes. I haven’t mentioned it to the GP, it never reaches the top of my priority list.
I know what you mean. I feel like I'm wasting their time if I ask them about such things. I went recently because I developed a weird feeling in my mouth. It felt like I had been eating lemons. My lip kept sticking to my teeth and the insides of my cheeks and lips felt lumpy and swollen. The GP had a good look and couldn't see anything. He prescribed me some drops for oral thrush just in case and some mouth rinse that numbs - mainly for sore mouths, but it wasn't sore. I used it for a few days but gave up as it didn't seem to help plus it was difficult to fit in when you couldn't take both at the same time yet had to do both 4 times a day. It went away on it's own. I felt like I had wasted the GP's time and the expense to the NHS of a wasted prescription.
But if he HAD identified something nasty you couldn't see - it WOULDN'T have been a waste of time ...
Strange you mention that, I have just the same thing. They said it ‘might’ be thrush from my inhalers but the drops didn’t help and as you say they are a nuisance to take 4 times a day.
I'm not sure it was thrush. There were none of the usual symptoms. The GP said he couldn't see anything unusual, but to me, my mouth didn't feel right. And I discovered I couldn't whistle - pursing my lips was actually difficult. I am a lady whistler! GP said to go to the dentist if it didn't clear up. I might mention it when I go next week.
Try rinsing your mouth daily with a half to one teaspoon of honey, works for me! Better than nystatin!
I have this also - dry mouth on waking and discomfort with gums/teeth and swallowing. I found Strepsils helped quite a bit, but I am going to talk to my doctor (who is excellent and really listens) if this carries on.
With me, it's not that my mouth was dry. There was plenty of saliva, but it felt too thick and sticky. And my lip lining was definitely swollen. Now it's gone back to normal I can see the difference - when I pull down my lower lip the lumps have gone. I'm wondering if it was a mild allergic reaction to something. Of course my GP would be totally unfamiliar with what the inside of my mouth normally looks like.
I had something similar a while ago
Stinging sensation all over my body was really painful but no marks and nothing there
Not ever had it again
I get it occasionally on my leg. I assumed it was nerves ‘fluttering’!
I think I'd been taking pred for two or three days when I had that creepy-crawly feeling. In my case it felt like it was inside, in my bloodstream if you know what I mean. At the time I thought, well, if this is the worst side effect I get from the medication, I can stand it. But have never experienced it since. Have considered it was probably widespread vascular inflammation receding.
I've had similar; itching which seems to be under the skin. No amount of scratching relieves it.
And if you scratch your itch, being on pred you bruise/damage your skin!! You can’t win 😠
Apparently tapping the area also eases the itch by confuding the nerve signals!
That's what I do when my eczema flares and it is very itchy. I tap near the inflamed area and it helps to keep me from scratching. It is how counter irritants supposedly work when used for muscular pain. In theory, the brain gets flooded with "pain" signals and forgets the sore spot. One of my hats in a previous life was in topical pain relief.
Interesting. I noticed when in France and I got covered in mozzie bites, that lots of mozzie bites are actually not as bad as one... same principle I guess! Unless the French mozzies aren't as vicious as ours!!
Probably a bit more laissez-faire !😏
🤣 ooh la la!
Nothing is as bad as a West Coast of Scotland mozzie! OH didn't get on well with French mozzies ...
Cheshire mozzies are pretty bad. They have a mozzie alert system here. They breed in the nearby Dee estuary, which is marsh. We're on a red alert at the moment.
Not sure it can compare to the Blandford Fly - originally from River Stour, Blandford, Dorset as name implies, but now further afield -
fantasticpestcontrol.co.uk/...
I got bitten once [late 1980s/early 1990s] - before it was controlled, and on upper leg - within hours the area around the bite had swollen to the size of a dinner plate, was hard - and extremely painful..but didn't blister as described - took weeks to return to normal.
Not an experience I would want to repeat.
That's horrid. I hope I continue to avoid that fly!
No they are better controlled -although farther afield..
Don't talk to me about French mozzies! I got some bites on a Seine cruise that came up in blisters about an inch in diameter. (It was shortly after this that I came up with pmr, and have often wondered if that was the trigger.) I know I am flavour of the month for mozzies of all nationalities, but then...the French have always been keen on their cuisine...
That's interesting. Maybe the assault on your immune system sent it into overdrive. I never used to get bitten, but in 2018 I suddenly became a gourmet dinner!
That must be awful. I don't remember that this episode felt itchy or tickly, not a sensation which made me want to do anything about it. Thankfully! Maybe like the difference between something lightly touching your skin, which tickles, or being firmer, which doesn't?
Yes it was horrible. I once had a spider crawl across my face in the night. Panic just doesn't do it! I hate spiders! I thought this might be the same...
That happened to my daughter, and she came and got into bed with me.The next morning I found a huge spider on the wall, we certainly have big spiders in Cheshire.
Ugh! Makes me shudder!
I've been noticing it since being on 1.5mg. Head and neck generally, it's irritating but learned to ignore it and it then disappears. Usually happens at night time. Assume it will disappear eventually. If/when/maybe I get to 0mg and this is the only reaction that Pred has ever given me I'll stay pretty happy.
My wife (former psych nurse) tells me it's known as Formication (from the Latin for ant) and can be a result of a number of conditions, including withdrawal......Hopefully, it won't last. OP
I was diagnosed with PMR in January & about the same time started having a feeling of an insect crawling across the top of my head. I even got a friend twice to check there wasn’t a fly caught in my hair. My Rheumy asked if I had this feeling & I told him what I was getting. He said did I get it on the side of my head - no I didn’t. My doctor said that if it was on the side of the head it may be a pointer to GA. Thank goodness, although it happens a lot it is still only on the top of my head. It seems to be quite a common side complaint of PMR.
Interesting that your rheumy knew about it. I have GCA, but haven't had a recurrence of the headache or jaw ache, thank goodness.
Thanks, know that feeling! By the way, you can edit your posts. Tap on 'More'.
I am down to a quarter Pred and have had itchy back for about six months, never a mark or rash visible.
I thought it was a reaction to a shampoo or washing powder as I have had this head itch and back itch for ages. I am now on alternating days of 0.5mg. It has been getting worse since about 4mg.
Hi HalleysComet! Yes mine started around the 4mg mark, and getting worse, but now I know it is quite common so will try telling it to go away. Try anything!
I had the sensation of insects crawling on my skin long before I took pred. It's known as formication.
My GP said that in my case it was the result of my skin drying as I got older. He told me that I should use shower gel instead of soap. And he prescribed a zerobase cream and antihistamines (cetirizine I think).
I still have the cawing feeling at times but not nearly as much.
Yes, I ‘suffer’ it, too! I don’t treat it with anything, it goes away, then returns. I also get the sensation of water running down my legs (which is much more concerning, as my brain grapples with what’s happening!!) It’s so ‘real’ that each time I put my hand down to my legs to see how wet they are etc etc.
Yes ! On 3 mg Pred myself , The creepy crawly mostly on my Back , not just Bedtime either !
I have to scratch I’ve afraid ,
Thank goodness it's not just me! I'm at 4mg and the itchy back I've had much more recently now drives me mad. I moisturise daily but as others have said it's not on the skin but a sensation that is 'inside'. I have found that a gentle shower and Cuticura Medicated powder seems to stop it for the day (it says it's for dry skin conditions). I've just also had to deal with a strange insect bite on my upper back that itched for weeks and spread a huge red rash right across my back. Heard about Lyme's disease by accident looked it up and sped to the doctor ( practice nurse as we can never see a doctor these days). Just to be safe she gave me the treatment for Lyme's -3 weeks of an antibiotic. Poor body! Decided to shelve the next tapering to 3 1/2 until we've dealt with that. This is my 5th year in now - it's been a long haul.
You are lucky to get antibiotics. I had a nasty bite which was spreading red up my shin and was red hot. The practice nurse refused to give me antibiotics even though I told her we were about to go away for the weekend with hubby's family. It continued to spread, then went purple and I couldn't put any weight on it, it was so painful and swollen. I didn't fancy ruining our weekend by spending it at A&E - the nearest was 20 miles away. Luckily I had packed some antibiotics prescribed me once but which I never used. Penicillin. I took those and started feeling better quickly. However it backfired on me as I developed chronic diarrhoea due to the Penicillin. I had to see the GP and confess my crime. He was very nice about it, he realised I had little choice I think.
Lymes tick bites usually look like a target. My bite was two pronged like a vampire. I'm wondering if it was a spider. I hope yours is all OK now.
Hope he told the nurse off for refusing abx for a spreading reaction to a bite. Even if she had given you a script only for use if you needed it. Cellulitis - which is what developed if it went blue - is nasty,
No, she said it was practice policy only to prescribe abx if there was a definite infection. To my mind, there was, but she insisted in drawing around the red patch and said come back if it spreads. It did, but by then we were in the wilds of Kent. I had told her we were away and she said go to A&E. When I asked for a prescription just in case, she said it was not allowed.
I sometimes get that feeling too and I am not on Pred.
Hi Broseley! Yes I too have this occasionally, only when I am in bed and only started on the low doses. What a relief to know other people get this, but no I do not have sadistic tendencies! This really is a crazy world we have. If you explained this to family or friends they would think we have signs of dementia. In future I will just tell it to go away!
Broseley et Al,For mouth and teeth problems try different toothpaste such as GC tooth mousse ( expensive) andZendium.... both recommended to me by lovely folk on here.
Tooth, jaw problems now eased though fillings falling out... I eat lots of calcium rich foods.
Itching, creepy crawlies under the skin a little like that in Lyme disease(which is hell on earth). but it is fleeting whereas the Lyme bacteria go on creeping and itching non stop from dusk to dawn with no let up.
NB,
If bitten by tick get antibiotic ASAP and 3 months supply. Testing very unreliable in UK unless you go privately, live in Scotland or can afford private testing in Europe or USA.
Sorry ! but having had Lyme/ still have it I need to ensure others get
help. Gp,s still in denial re Lyme.
I use the Amphora frankincense and Rose face cream on the itches I can reach. V good for sunburn too...just good stuff...frankincense a great healer and other nice things in it like lavender, symphytum, citronella etc etc.
Or vicks vapour rub.
False widow spider bite... don,t underestimate. can put you in hosp....
Get help if bitten or swelling and very bad headaches some react very badly.. My on very ill from it, sepsis, EBV,
Etc.
Loads of cortisone and intravenous antibiotics saved him.
6 months plus recovery.
Love to all.
Thank you for this useful advice. I did wonder if it was connected with the toothpaste, as I had just started a new tube, Colgate Total Whiteness. Then we went on holiday and I switched to Oral B which I keep permanently in my toilet bag. The problem went away.
Useful advice too on Lyme disease. Thanks. I'm sorry you and your OH have suffered though.
Broseley,It was my son who nearly died of false widow spider bite not OH.
My bad typing.
Dear old OH died 19 months ago after 7 yrs dementia.
(Son was ill day of his funeral. Two days later in hosp with sepsis. etc. They called in a rheumatologist, thought he had GCA)
(I have never ever seen a rheumy . Now waiting list too long.)
I requested pm for OH because sudden death and no one present at death but was refused as he was "old and had dementia...."
Death cert signed by a doctor who never saw him even in death.?
He went into a home two weeks before death. They gave him a flu jab when I had absolutely refused flu jabs for him.
How dare they. How ignorant.
Only too late did I realise I could have paid for a private PM.
Re Lyme,
We both got Lyme a long time ago after returning from holiday abroad....bite, flu like symptoms rash followed by pain in R hip and knee.
Chiropractor puzzled...thought it must be a virus.....Lyme destroys the cartilage. We both ended up with arthritis in all joints. By 2015 I spent five months in bed..when I could finally get up and go to GP he
said it was. Ot scabies but senile pruritus and depression.
So I saw a private skin specialist... excema..and depression... wrong. Not depression but despair. I had children with excema...knew it inside out.
"Lyme test negative so you haven't got Lyme...."
Consulted a Lyme specialist. Yes he was sure it was Lyme £10 k to be treated.
Hadn't,t got 10k. Prescribed tablets to boost immune system £50.
Spent 7k on vitamins and other stuff over next two years.
It Lyme isn't,t treated promptly with two particular antibiotics over several months the bacteria stay in blood and eventually the brain ,causing PF dementia.
Read What Lurks in the Woods by Nicole Bell.
Her husband and mine died the same week. Exactly the same symptoms.
UK has yet to recognise the dangers of Lyme disease if not treated promptly.
My pmr started before OH died . I couldn't move so easily. Pain everywhere and by the end ofOctober I was crippled. I thought it was old age.
PMR prednisolone in Nov last year.
Now almost better... jaw. Teeth. No longer hurt.
Pain all gone except in hands and left breast.
Occasional brief bouts of sharp nasty headaches. New to me.
Googled...seems cluster headaches.
And the itchy crawling sensation.
Skin thin so bleeds if you scratch so Don,t scratch if oldish.
I hope you all get well soon.
Just go on hoping and help your body to heal.
I couldn't have managed without this site. I would have just given up.
Thank you all who helped me,
Thank you whoever discovered the power of prednisolne.
Shall Google him/her.
Love to all.
Sorry for you Brosely and hope it goes away eventually, but I'm glad that at last I don't think I am going batty by imagining insects crawling over me and the constant itch that moves to different places at a whim! I too have jumped (if I could jump) out of bed and inspected the bedclothes to no avail. I have noticed that some of the meds say they can cause itching, have suspected washing liquid, etc., etc. Did have a phone appointment and had to send a photo of my back on my phone, and was told it was Eczema and given a tub of moisturiser - outcome, still very itchy and drives me mad at night. Annoying when Pred already causes insomnia. It works well, but long term side effects are horrendous! Oh, yes - mine started when on a very low dose 3mg and under.
I get this too. Just a hint of a tickle. On my shoulders and back, I assume its a strand of hair. When it is on my ankles, I am looking for a bug - ant, mosquito etc.
Never had it before prednisone. I am currently at 3 mg.
I had something similar. I thought I had insects in my hair for ten days and asked a friend to check my scalp but of course there was nothing there!
I get this too and I am on prednisone, happens at night when I lie on my side, weirdest sensation. It's in my scalp area.
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