Reducing Pred : Can reducing pred cause red skin... - PMRGCAuk

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Reducing Pred

madhouse1 profile image
madhouse1

Can reducing pred cause red skin and itching?

56 Replies
PMRpro profile image
PMRproAmbassador

It would be helpful to know a bit more about dose and history.

It is possible that you have an allergy of some sort or another condition which is being managed at higher doses but once you get to lower levels it can re-emerge. I have an allergy to something in wheat starch - at higher doses I can eat small amounts of wheat without itching but as I reduce I can eat less and less wheat.

madhouse1 profile image
madhouse1 in reply to PMRpro

I’ve posted the dose and first Rheumy app carry on xxx

PMRpro profile image
PMRproAmbassador in reply to madhouse1

But it isn't on your profile or in the post.

madhouse1 profile image
madhouse1 in reply to PMRpro

I’ve no idea I’ll have to see if I can find it 🙈

PMRpro profile image
PMRproAmbassador in reply to madhouse1

HU does sometimes swallow things - when you do a long post it helps to do it in Word first or to block it and copy it before clicking on reply!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to madhouse1

Where? profile says "Diagnosed with polymyalgia oct 19 started on prednisolone 40 mgs now down to 15mgs" and that's fair enough. As you joined in June 2020, presumably you were at 15mg then....but its useful to know what you are on now, especially as you are asking about the effects of reducing Pred.

madhouse1 profile image
madhouse1 in reply to DorsetLady

Typed a long post last night but can’t find it anywhere. I’ll do it again.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to madhouse1

It's not the best site to use, - things do have a habit of disappearing, so if I'm doing a long post(especially if on iPad or iPhone) - I draft it first in word or whatever and then copy and paste onto forum. Not ideal, but saves doing it twice.

madhouse1 profile image
madhouse1 in reply to DorsetLady

I had reduced to 10mgs on the 25th Dec. 9mgs from March 25th. Struggled as pain was increasing but GP on a mission to reduce to nil. Long awaited Rheumy appoint was on 14th of May.

He decided I shouldn’t have been given pred in the first place as I haven’t got PMR despite having all the symptoms.

He said it was just shortening the length of my life as I had diabetes and I had osteoporosis.

I asked what on his screen supported Osteoporosis and he said nothing so I asked why he said I had it as no dexa scan had been fine at the start so he has no baseline to make a judgement like that. He replied he’s just sure I have it.

He wants me to reduce pred starting in the 14th to 8 mgs amd reduce it 1 mg every three weeks.

There’s no point in him seeing me before 6 months as he can’t do any tests until I’m off pred.

I asked what pain relief he suggests as the only thing has had any effect at all was pred. The five other pain relief scripts I’ve been given never touched it at all. He said he’ll talk to my GP and see what she can offer.

His said codeine, morphine nefopam or tramadol could be prescribed.

I said codeine & tramadol make me sick, nefopam have my head floating round the ceiling, morphine makes me itch.

He sent me for X-rays of my shoulders and hips. Dexa scan of left leg, has an MRI in the pipeline but no one at the hospital knows anything about that, and a raft of blood tests.

Since then I’ve had red itchy skin. It is red as though I’ve been in the sun all over my Bach chest as arms apart from where under where is. It itches like mad. Skin isn’t dry and I’ve never had itchy skin before.

Xx

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to madhouse1

What a mess, so what does Rheumy think you have if not PMR, and why not PMR? or hasn't he said?

Is there any way you could see a different Rheumy (it would probably have to be privately)..not sure if that possible.. but you really do need to see somebody who takes a more sensible and reasoned approach.

Also, is there a different GP within the surgery who might be more sympathetic?

My late hubby was diabetic, is there any way it could be connected to that (even though you haven't had it before) or a reaction of diabetic meds to the new ones you've tried?

Sorry I haven't been able to give you a definitive answer...

madhouse1 profile image
madhouse1 in reply to DorsetLady

I asked him what he thought it was. He thinks it might be the structures around the muscles but not sure.

PMRpro profile image
PMRproAmbassador in reply to madhouse1

Well you've certainly drawn the short straw in terms of medics haven't you! And one with x-ray eyes and a crystal ball to boot. AND him saying so means a GP can magic pain relief out of thin air! Have you started on ANY new tablets before the itching appeared? What sort of pred are you on?

Where in the UK are you and is a private appointment an option?

madhouse1 profile image
madhouse1 in reply to PMRpro

Just done detailed reply snd it’s gone! I’ll do another in a bit as tired xxxx

SnazzyD profile image
SnazzyD in reply to madhouse1

A good rule of thumb is never to leave the page you are writing on without hitting the reply button first. Unfortunately if you accidentally touch any of the bits and pieces on the screen that lead you to another page, say goodbye to your typing.

madhouse1 profile image
madhouse1 in reply to SnazzyD

I’m sure that’s what’s happened. I’ve answered various folk and hope it makes sense apart from the typos🙄xx

HeronNS profile image
HeronNS in reply to madhouse1

Another tip, you can actually edit replies, so if you feel you want to add more but don't have time or energy, or want to proof-read later, just go ahead and post the reply and add any info or make any corrections later. At least that way the reply is entered onto the site. You won't be the first, or last, to write a nice detailed reply and later discover you didn't actually hit the "reply" button! You find "edit" by clicking on the "more" option after your reply.

madhouse1 profile image
madhouse1 in reply to HeronNS

👍

madhouse1 profile image
madhouse1 in reply to PMRpro

I’m in Derby, Derbyshire. Not had any news tablets or wash powder etc. All the same apart from reducing from 9 to 8mgs of prednisolone. I don’t know how I find so many medics who haven’t a clue. The locum GP was amazing and really on the ball but can’t locate her since they weren’t allowed at the surgery one lockdown happened

HeronNS profile image
HeronNS in reply to madhouse1

I suppose the theumatologist is right in the sense that pred can mask some things and he'll be able to make a more accurate diagnosis if you aren't taking it. It doesn't help you for the next few months, however. Did he tell you the reason why he doubts the PMR diagnosis? What tests had your GP run at the beginning? They often rule out a lot of things at that stage, and then PMR is what's left.

Also has anyone given you any guidance on how to manage diabetes while on pred? A lot of us get raised blood sugar and some even become diabetic while on pred, and in that case a very strict elimination of carbohydrates, especially the "white" carbs and added sugar are very helpful. I don't know if that's enough for pre-existing diabetes. Do you have to take any medication for it?

madhouse1 profile image
madhouse1 in reply to HeronNS

I said I’d had these symptoms for between 15-20 years and he said it can’t be PMR as it has been 20 years since it started. I said between 15-20 as I can’t remember the exact date as it crept in gradually. Well 20 yrs makes you 45 when it started and women under 50 don’t get it despite you having the symptoms.

GPS had done all sorts of blood tests, scans, etc over the years and nothing showed up except raised Liver Function but that was slight and nothing showed up as to why.

I had got so bad and legs and arms lost their strength that I was on my hands and knees to finish the last few steps to get upstairs.

I was referred for a second opinion as nothing wrong and I saw a locum who was amazing.

She had read my notes from start to finish and said it was one of two things. One they could treat, PMR, and one the couldn’t, Fibromyalgia .

She was giving me prednisolone and it would either make a huge difference if it was the treatable condition or none if it was the untreatable one.

The difference after a day was wow! And after two days unbelievable.

This was the deciding factor that it was PMR.

She didn’t monthly monitoring, we worked together for the best outcomes and for the first time in years my Pain was gone and I had my life and energy back.

Lockdown came amd locums not allowed at the surgery and you all know the rest!🥲🥲

PMRpro profile image
PMRproAmbassador in reply to madhouse1

All that description does sound very PMR-ish - and at a guess she suspected either fibromyalgia or PMR. Pred doesn't work for fibromyalgia.

The rheumy is wrong - people under 50 CAN have PMR, it is just less common. Mine started at 51 and there are people younger than me on the forum. Mine also crept up slowly - and 16 years on I still have it. The UK rheumies I saw just didn't want it to be PMR - and I had a similar response to pred but he didn't want to hear.

You aren't alone. I, OTOH, have doctors who treat the patient, not the textbook.

If you didn't have diabetes pre-pred, you can probably make a big difference by cutting carbs in your diet drastically. Was it diagnosed by checking your Hba1c levels or just random/fasting BS levels.

HeronNS profile image
HeronNS in reply to madhouse1

Oh my gosh, that sure does sound like PMR! PMRpro's advice will be the best, as she too had many years of untreated PMR and also experienced the pred miracle. I "only" had about 14 months of what I'd say were definite and worsening PMR symptoms, but it is possible that I had it earlier which was just put down to osteoarthritis. The real flare which ultimately led to a diagnosis (and the pred miracle) was I think caused by several fairly high stress events all happening at around the same time, otherwise I might still be chugging along believing only that what I felt was simply normal aging. As you were properly investigated at the beginning it does seem very unfortunate that the "specialist" now is second-guessing the results rather than helping you find the best way to control the symptoms and move forward.

Someone posted recently that only half of physicians achieve more than 50% in their marks - and this is why we should seek a second opinion :D . Any chance of that?

madhouse1 profile image
madhouse1 in reply to HeronNS

I’mGoing to have to save up and go privately. There was a lady in here recommemded a Rheumy chap who was excellent she saw at Nuffield in Derby. I’ve not been able to work for the last two years because of PMR and because we’re self employed won’t qualify for benefit. Dave is on his pension but I don’t get mine until October when I’m 66 so we’ve had to be very careful

HeronNS profile image
HeronNS in reply to madhouse1

Oh dear, you are caught on the horns of a dilemma. Can't offer advice on that score as I'm not in the UK.

madhouse1 profile image
madhouse1 in reply to HeronNS

Diabeties has been managed by me taking 500 mgs Sukkarto one then increasing to two a day but two upset my tum so it’s one a day and avoiding carbs and sugar. No diabeties before Prednisolone xxx

HeronNS profile image
HeronNS in reply to madhouse1

It is true that this effect will lessen as your pred dose is tapered, but in the meantime you will only benefit from pred if you are taking enough to manage the pain symptoms. As PMRpro said long ago, and I keep repeating, "It isn't slow if it works".

madhouse1 profile image
madhouse1 in reply to HeronNS

I understand that fully HeronNS, but unfortunately the dippy medics I have to see don’t at all. I told the consultant that what he is saying doesnt match what’s advised on the NHS website or the support group they recommend we join (PMRGCA uk). He just looked down at his desk. I know I need 15mgs to get rid of pain but GP had me tapering regardless and set my tablets to repeat every two weeks literally to the day so absolutely no room for manoeuvre at all. Then consultant says off them tapering down every three weeks and they’ll sort pain relief but won’t take any notice that only Prednisolone works. I’m between the devil and the deep! We all know what should be happening but it’s trying to get those ‘supposedly in the know’ to understand too. Sorry for the moan. We both had Covid in January which has left us washed out woth very little energy since. The only illness that kept me bedbound for over two weeks in my 65 years.

HeronNS profile image
HeronNS in reply to madhouse1

This very forum is the one connected to PMRGCAuk

pmrgca.org.uk/get-support/o...

HeronNS profile image
HeronNS in reply to madhouse1

Did you know this:

covid.joinzoe.com/us-post/s...

PMRpro profile image
PMRproAmbassador in reply to HeronNS

Not to mention rash being a part of Long Covid:

businessinsider.com/coronav...

madhouse1 profile image
madhouse1 in reply to PMRpro

I didn’t know a rash could come so long after having Covid. We tested positive 27.1.21 but had no loss of taste or smell, no temp, no rash. Just a cough, great difficulty breathing and exhaustion. 15 days just been to bathroom to bed.

There are no spots just red skin as though I’ve been in the sun and it itches.

PMRpro profile image
PMRproAmbassador in reply to madhouse1

There is an awful lot that still isn't known about Covid - short or long forms.

madhouse1 profile image
madhouse1 in reply to PMRpro

It’s going to be a learning curve for a long time to come isnt it. Itching has begun to settle a bit today. I’ve done nothing different so I’m praying it continues to calm down. Thank for your advice and the rest of lovely folk on here. I’ve just said to HeronNS that seeing a different GP in the practice wouldn’t make much difference as the consultant has instructed me to be off pred asap. Devil amd the deep comes to mind xx

madhouse1 profile image
madhouse1 in reply to HeronNS

Yes I did which was why I told the Rheumy consultant that what he’s saying is the opposite to what this forum recommends and I am a member of. He wasn’t interested more looking at his desk!🙄

madhouse1 profile image
madhouse1 in reply to HeronNS

Yes I do and gave told my GP on several occasions and that it’s also who the NHS recommend for support too. She isn’t interested just as the Rheumy consultant wasn’t either. I might just as well never said a word. Xx

madhouse1 profile image
madhouse1 in reply to HeronNS

It’s getting the medics to understand that I’m afraid. I seem blessed with ones who don’t want to know or my GP has a one dose fits all strategy. I don’t know any other docs in the practice as I only moved there at the end of last year. X

HeronNS profile image
HeronNS in reply to madhouse1

It is difficult when moving, or even when having to find another primary care doctor for other reasons. I developed PMR just a few months after my doctor of many years retired. The young doctor who took over part of his practice I think viewed me as a hypochondriac old woman, so I spent the better part of a year not filling her prescriptions for heavy duty (and in my case actually contraindicated) painkillers. Fortunately I never was given prednisone at that point so didn't have to deal with what would almost certainly have been bad management of PMR and pred. When she left the practice for another area I managed to see another doctor and she turned out to be a dream - diagnosed me almost instantly, ran a bunch of tests to confirm not anything else and, after initial guidance, for the most part left me to my own devices regarding tapering (I asked her about a slow plan found on the forums and she approved). I've been very lucky since then. Well not lucky in the sense that PMR is not going away, but you know what I mean. At least that second doctor and my current one seem to care.

madhouse1 profile image
madhouse1 in reply to HeronNS

I’m so pleased you found a gem. I’m going to have to take a chance and go amd see another go there. I’ve had so many tests over the years and it wasn’t until I saw the lovely Locum that a diagnosis was given and Pred was like a magical wonder. The pain in my thigh muscle is horrid but nowt I can do and I’m supposing now the Rheumy chap has said off pred none of them will contradict him. 🥲

I found pred actually helped itchy skin, so yes, reducing pred can cause a pre-exising condition to re-emerge and I suspect could be worse than before, judging from my experience (pre-PMR) using hydrocortisone ointment for itchy skin and discovering the benefits of tapering after acute flare up when stopping. In my case I think the itching and redness was really caused by dry skin, and gradually reducing the ointment while introducing a very good moisturizing cream, also food grade hemp oil, eventually sorted the problem.

madhouse1 profile image
madhouse1 in reply to HeronNS

No pre existing itchy skin xx

HeronNS profile image
HeronNS in reply to madhouse1

Anything else changed? Soap, laundry detergent? Outoor activities exposing you to something new in the environment?

madhouse1 profile image
madhouse1 in reply to HeronNS

No just a reduction in pred which shouldn’t as far as I know do that.

madhouse1 profile image
madhouse1 in reply to HeronNS

No x

Itchy legs below the knees bugged me for years. Then Pred worked its magic - on the itch as well as the rest of me. Well I can only guess it was the Pred the fixed the itching because recently, since dropping down to 4mg the itchy legs are back - and worse than ever. Aaargh!

Pred sorts out all sorts of things including allergies - as I found when I reduced the dose below 5 a few years ago. There are quite a few of us on here who have allergy problems along with the PMR. I'm struggling to get a diagnosis despite being referred to Immunology, they refer to it as 'spontaneous urticaria'. I personally think it is mast cell activation problems but they won't dx that because there isn't a treatment path for that on the NHS so they don't want to know. The other thing they thought it could be is venous eczema. My GP gave me some steroid cream to apply which seems to help. I'm trying to get a referral to dermatology.

I too suffered from a widespread bright red rash while on rather high dosage prednisone. (20 mg/day, down from initial 40. I’m in the US). I’m 72 and never had a shin rash before. Stumped rheumatologist and dermatologist but the latter told me to take a twice a day antihistamine pill and it went away and hasn’t come back. Theory is that histamine receptors are somehow affected by Prednisone, but ironically Prednisone remains the treatment of choice for many allergies, skin or otherwise.

madhouse1 profile image
madhouse1 in reply to RiverKings

Thanks for that info. It just co-in used with the drop on prednisolone so wondered if it was connected but have had Covid quite badly too last jan and apparently that can case a rash woth long Covid. I can’t say it’s a rash as there are no spots just red skin as if I’ve been in the sun. I wish it’s rained here for weeks but the gardens need the rain. They’re flourishing!

Hey ho medics are performing well again. Requested repeat of pred, Omeprazole,Alendrolic. Acid and Sakarto. Collected tonight as no pred left. Only Omeprazole and Sakarto have been prescribed. Omeprazole is under review and pred is only allowed to be prescribed if the do tor says so!

I now have no pred, receptionist understands the drug and the doctors will look at it tomorrow. 🙈. I said I’m not to miss a dose and she said again the doctor will look at it in the morning. Other scripts done on the 27th but no text, phone call, email etc to say I couldn’t have them.

PMRpro profile image
PMRproAmbassador in reply to madhouse1

Possibly worth a 111 call - since you have no pred left. They can authorise emergency scripts - and in fact, the pharmacy should provide a couple of emergency doses for a long term patient.

And obviously the receptionist is SO well qualified ...

madhouse1 profile image
madhouse1 in reply to PMRpro

They really take the biscuit! Formal complaint I think is needed. They can’t be any worse if they take umbrage can they? I’ve managed to borrow some for tonight. X

PMRpro profile image
PMRproAmbassador in reply to madhouse1

I think so, yes. Because it COULD make someone very very ill...

madhouse1 profile image
madhouse1 in reply to PMRpro

From experiences to date I can’t see it making much difference but will do it anyway. I’m feeling very low at the moment with consultations etc at the mo as pred down to 8mg and reducing 1 mg every three weeks till zero. Pain is increasing as is difficulty in mobility especially going up stairs so the outlook doesn’t bode well for you the next few months at all x

PMRpro profile image
PMRproAmbassador in reply to madhouse1

Have I missed something - is there a reason for reducing pred like that? It's certainly a bad approach for PMR but reducing at that speed isn't allowing time for a return of adrenal function either - and that could introduce even more problems,

madhouse1 profile image
madhouse1 in reply to PMRpro

9 days ago post. Saw Rheumy who decided he wants me off Pred asap as I haven’t got PMR even though I have all the symptoms. Right nightmare he is but I’ve got to play his game or go no further or find money for a private consultation with someone who listens and has some knowledge of PMR. XXX

PMRpro profile image
PMRproAmbassador in reply to madhouse1

Ah yes - just re-read it. Glad he's not my rheumy ...

You could discuss it with your GP and request a referral to another rheumy - having done a bit of homework here to find a suitable one local to you.

madhouse1 profile image
madhouse1 in reply to PMRpro

Certainly doesn’t seem to know what’s what with regards to PMR. Someone in this group recommended a chap at Nuffield Hospital some months ago. I’ll gave to go back and search. Xxx

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