High all, haven’t been on for a while been trying so hard to get off the pred I have been stuck in 4mg for so long , I was diagnosed with PMR in June 2015 started on 20mg and tapered down with all the usual hiccups along the way , the Rheumy told my doctor I would probably be on a low dose of steroids for life which I wasn’t happy with . Last few weeks my body has started itching not unbearably but enough to be constantly aware of it . Anybody else experienced this , I recently took early retirement i’m 58, hoping it would do my health the world of good but now I have more time on my hands I just think to much about my health turning into a right hypochondriac thinking I have all sorts of health conditions . Any body else feel that way sometimes, or is it just my mind doing overtime . ?
New symptom Itching : High all, haven’t been on for... - PMRGCAuk
New symptom Itching
Bit of a long shot but you’re not taking anything with codeine or a related type of opiate are you? I was given dihydrocodeine pre PMR diagnosis and it made me itch. It’s a known side effect.
On the other hand, have you done something as simple as changed your shower gel or washing powder?
No , no change to meds or shower gels things like that , I haven’t a clue
Have you changed any products recently - or have THEY changed themselves? New improved and that sort of rot? And new medication? Or come to that, what medication are you on?
Some may take a long time to cause side effects - just to fool us! And if it is an allergic reaction to something you started at the same time as pred the pred may have been keeping it under wraps at higher doses.
I develop itching if I eat wheat, it's something in the straucture of the starch of modern wheat. I was fine at higher doses of pred - when I got to below about 10mg it was back. The lower the dose, the worse the itch.
Did your Rheumy say why he thinks you will be on steroids for life? I am not sure that many people fall into that category.
I was very surprised when I read the letter , I was cc into the letter from the Rheumy , it just said a certain percentage of people never get off them but as long as the dose is low it’s acceptable if the patient has a good quality of life , kind of an acceptable risk .
So the Rheumy was not saying you would definitely be on pred for life but was just covering their back do you think?
Sounds that way , discharged me back to my GP , that was 18 months ago , I managevtje condition myself plus the meds . It’s very frustrating I get more help on here than from the so called professionals .
Did you have a Synacthen test?
No have never heard of that one ?
It’s a test done by endocrinologists to see if your adrenal glands are capable of working. My GP arranged one for when I got to 5mg or below (they prefer less than 5mg). Whether the adrenal system works 100% is another question, but it helps to know if it is at least feasible. Try this
When I was first diagnosed was told that some don't get off pred at all and stay on a 'maintenance' of 1mg for life. 4 years on it looks as I'm falling into that category but at a higher dosage - Rheumie wants me to get back to 3mg if I can says he's happier with that dose than my current - on 4.5mg and is taking much longer than when I previously got to 3mg i.e. 4 months to reduce .5mg. I don't care how long it takes. Seems it's more common than we think but don't know percentages.
Hi I am soon to reduce from 11mg - 1mg at a time. How Do you know when it is safe to reduce or need to stay on dose longer. I have had 2 episodes of lower back long lasting I.e. 1 month+ muscles hurting every time I move, when I reduced from 40gm and now from 12.5gm. I would be glad of any advice.
If the lower back pain is holding you back I'd speak to your GP/Rheumie as it might not be related to your AI - unless you know different? Muscles hurting when you move indicate you're not ready to reduce yet, sounds like inflammation still around. Could be two separate things going on.
However, when you are ready, the rule of thumb is to be symptom free for a minimum of two weeks, ideally four weeks, ensuring the inflammation has properly settled, if it hasn't then remain on your current dose until it has. You'll know when it's right as you'll feel ready for the next reduction - it's always daunting anyway so need to give yourself the best start by knowing your body is 'ready to go'. No good trying to reduce too soon as you'll yo yo back and forth. That's why it's said getting to 10mg and below needs to be a much slower and sometimes by .5mg if 1mg reductions don't work for you. We are all different, what works for one doesn't another. As you get even lower, and as the adrenals start to kick in, it can mean staying on a dose for much longer than you've been used to, as you've seen I have to, but you are more likely to keep reducing if not in a hurry. Just listen to the body - it knows best. ATB.
Thank you Telian that was just what I needed to know. Unfortunately my doctor and Rheumatologist want me to come off it quick as I had GCA symptoms and was started on 40mg. Not sure what is the cause is of back problem but as it started twice a few days after reducing prednisolone I think it maybe the PMR/GCA it has lasted over a month this time so would slow everything down if I wait for it to go altogether. I am on 11.5mg reducing to 10.5mg, been on this dose nearly a week the back muscles are improving.
If you are feeling better on your last reduction that has to be good, but don't be rushed by the doctors - GCA is a risk to your eyesight if you are not on enough pred. If you get visual disturbance at all treat it as a medical emergency, because that's what it is. Your sight is precious. The PMR is not a medical emergency as painful as it can be. Hope the back continues to improve.
Thank you. I am so pleased to speak to you today. Food for thought. I am definitely going to head your advice.
Put Synacthen test in your search engine and then ask your Gp to refer you to an Endocrinologist for that test. It will tell you whether your adrenals glands have woken up and if they are fully functioning.
It annoys me that they know your adrenal glands have been knocked out with high doses of pred and once down yo 7.5mg or below, preferably 5mg. that test will tell you the exact state of those glands, which are essential to life. If they have not woken up then it is pred for life, but the endo guy will then take over and you will be monitored.
It is the best test I have ever had in my life, I fell fast asleep in warm room and a comfortable chair. I had taken a book to read as it is a long test, but they had removed my glasses and marked the page and woke my up with a cuppa when it was finished. Yup although 5 years on pred, and 5 years older, those glands were fully functioning.
This might sound odd, but have you talked to your GP about Hives. I don't know the symptoms, but Hives are one the the very rare side effects.
Don’t hives show up on the skin , bloches etc . I have no signs of redness or sores
Rest assured Gaz you haven't got Hives. About 5 years ago, a basic 'oldie' health check diagnosed a slightly raised cholesterol level and despite a normal healthy weight and life time home- grown healthy diet, my then GP insisted I should take statins. BIG MISTAKE ...... legs refused to work .........changed statin .......... within hours my whole body was covered in raised scarlet lumps, the itching was unbearable ........couldn't stand or sit. Sat in a cold bath which helped for a few minutes, then ......ughhhh. Hives diagnosed. Fortunately anti-histamine tablets, Loratadine, eased things within a few hours and statins became a dirty word in my household. Nevertheless, any itching is horrible and we can all react quite differently to even simple foods. A pal of mine succumbed to Hives after one benecol-type drink, It wasn't actually Benecol but something similar. Have you had a word with your pharmacist? In our household if any of us develop an itchy skin, we follow our shower with a final rinse of one tablespoon of cider vinegar in a jug of warm water - the vinegary smell disappears within a few minutes. It wouldn't work for Hives but it's really good for mild, irritating itching. Do hope you soon get some relief, please let us know how you get on.
I can’t relate to much itching , but I can to worrying about my health much much more than before PMR! And yes thank goodness for this forum, my doctor doesn’t know much and doesn’t think I need anyone else. Good luck.
PS GAZ227 How did u get on with the CBC oil???
Not good after a week all my aches where coming back , so I stopped and the aches went away . Expensive way to find out it’s not for me , but we have to keep searching for a solution to our problems
I am trying CBD oil. Not sure about it yet. I am slowly increasing dose. It is helping with anxiety but I bought it for stiffness.
You aren’t taking Tramadol are you? A friend of mine gets terrific itching if she takes more than 2 doses of the painkiller.
No tremodol , my meds haven’t changed for a year give or take half a MG of pred .
Hi Gaz.l know of someone having a skin problem after lowering the Pred,something like small lumps or spots.as previously mentioned by jinasc ,l believe it is a side effect.Have you had a liver function test ,itching can be connected to liver function .
I ha e had liver function blood tests previously combined with all of he others they do in general checks , but will ask for another when I see the doctor , the small spots is interesting I have noticed a difference almost like tiny skin tags that are very itchy . I’ll bring that up with him also , thanks 👍
Hi Gaz227,
I am also on 4mg. Recently had itchy legs from top of sock to ankle with what appeared to be a scaly pimple and I thought it was Psoriasis. Went to doc and she felt it was a dry skin issue. Told me to take a 5 minute bath with adding a half cup of a pure Bleach, in NZ it is called Budget or Value Bleach, ie no additives! Did that. Then she prescribed a topical corticosteroid cream called Elocon applied sparingly daily for 12 days which I do in the morning and apply Urea cream at night. Amazing difference in just 2 -3 days. Not saying that is your problem but worth considering. John
My rheumatologist told me that 50% stay on low dose steroids for life. I was quite shocked. I know my friend’s father has remained on 2mg for over 10 years now.
Liz.
I can relate entirely, Gaz. It sounds as though my journey has been similar to yours - I'm currently on 4mg and seemingly unable to budge. But I itch like crazy. There's no obvious marks on my skin and the itching moves around - back, legs, stomach, hands. I've never suffered from dry skin but I've been liberally applying a moisturising cream which seem to work for a short time then it's back to square one.
Thanks for the info , this condition is just a compete minefield , you just don’t know which way to go 😩. Soldier on 👍
Hi Gaz, Could this possibly be very dry skin. Mine made me quite uncomfortable, as you say , constantly aware of it. I had no red marks or rashes but if I wore something black it was quite white inside when I took it off.
My doctor gave me a lotion called Dermol 500 Lotion which I use as a shower gel, as well as a moisturiser twice a day. It is odd washing with something that doesn't lather but I am now used to it. I was assured it was hygienic (been tested on butchers seemingly).
I always use this in the shower now, but use Neutrogena intense repair body balm after, which I find more soothing and quicker to absorb.
It took a couple of weeks but I now do not itch at all and only need to put the Neutrogena on once a day. I fixed a thick, soft flannel to a back brush with a rubber band so that I could apply the creams to my back.
I hope your problem is as easy to resolve.
I had itching but only on my neck, left shoulder and arm mostly. It starts as a small itchy blister type thing then drives me mad. If I scratch it bleeds ( because of thin Pred skin). I thought it was folliculitis due to auto immune system not working properly. I am on 8 mg Pred. It has now subsided but I used Eurex, Nystatin, Cetraben Sudocrem and Germolene. All at different times I might add. It has now stopped but I have very small spot scars from where it wouldn’t heal up. I thought it could have been heat related with the unusual summer but it hasn’t come back and it was really hot and humid on my holiday.
I have itching skin most days. I moisturise a lot E45 or Aveena. It relieves it for me.
I had that I intermittantly ,It has stopped now I don't know why I had it ,could be other meds or are you in the house more than you normally were now you have retired .Think outside the pred as well . I found my skin drier when I briefly became a hermit 
Look for all sorts of reasons . If you are bored could you do 1 day somewhere voluntary work I have done vol work for the deaf society for many years and I loved it .I stopped a while ago because I cant work and do it as well nowadays but I will go back when I retire properly .Something sociable you make friends and it uses up some time . When you have worked it's very easy to become isolated and then your mind has no where to go but into overtime .It's like any retirement ,great for a few months then ,hmmmm now what .
You ‘be raised some very good points , the trouble I am having with a back problem is stopping me doing all the things I planned to do in semi-retirement as I teach martial arts , still working most evenings in the clubs so i’m Not bored just frustrated 👍😀
Itching in the pubic area can be a symptom of T2 diabetes......?
I have experienced this itchiness ever since I started Pred over a year ago and, frankly, just see it as one of the many things that can happen and don't worry about it although it is annoying. It seems to me that anything and everything can happen with pmr and pred !
That’s so right , but it hard to stop your mind doing over time . Sometimes researching these things isn’t such a good idea ,
Indeed ! But that's why I like this site and all its members. If we wander too far and wide one of the Aunties will pop up and keep us on track !
When on pred your skin thins - so I was advised to stop using stop and use Double Base Gel and follow the instructions and not to shower every day as you strip the skin of all t=its essentials. I was also told to use a baby shampoo.
GP issued prescription for Double Base Gel.................then I just bought my own. It helped so much and I still use to now over 12 years later.
Just had a thought ,the rheumatologist that I see said make sure to use a high factor sun cream because your skin will be more fragile ,I know the weather has changed now but have you been out in the sun much ?
I’m not really a sun worshipper but good point 👍
Sorry to hear you are itching. I have GCA and I've found something of this too. My friend told me to try putting cream on the affected parts which I did and found it helped.
Hello Gazz
I also get random itches from time to time. Worst is when its on soles of feet - usually at night. Maddening! Wondered if it might be connected w raised blood sugar? Heat and profuse sweating make it worse.
You've had a lot of good suggestions, but here's my tuppence worth:-
I rinse w mild warm water, avoid using soap, and do my best to keep blood sugar levels under control. When itch is too much, occasionally, I use Tea Tree cream, which does help.
(Started on 40mg 22 months ago. Currently on 7.5mg.)
Hi , I keep a close I on my blood sugars as I was flagged up as being border line diabetic , it’s has to be caused by the pred as I exercise a lot and have a good diet , I have never had a high blood sugar reading using the finger prick method but I was told at the hospital you can still be diabetic something to do with how hard your pancreas is actually working to cope . Interesting stuff but not helpful if it means your home testing kit isn’t really confirming things .
Your Hba1c is a far better guide to whether you are pre-diabetic/diabetic or not when you are on pred. Pred causes random release of blood sugar spikes which tend to raise the average BS level - but you won't know unless the test is done at the right time - and it isn't pre or post-prandial but random so very hit or miss.
Great info PMR pro , is there anyway round the problem to get a definitive answer ?
Have the Hba1c done - it reflects the average BS level over the past 3 months:
Maybe it's the kit? Some are more accurate than others. I got one from the GP, astonishingly enough. I got full blown steroid-induced diabetes very soon after starting prednisolone, and this kit does seem quite accurate. I always take a reading first thing in the morning, before eating, which gives a daily baseline for comparison. Mine is almost always high then - sometimes just a bit, sometimes more - definitely the pred. Maybe try comparing before and after meals. 2 hours after.
But if you're exercising, that's probably keeping you ok. Even just walking a bit makes a big difference to blood sugar levels.
And we'll get there. It's not going to last forever. (She said hopefully.)
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