steroids

[Sandrakee]

I have an itchy rash tapering from steroids 50 mg to 5 mg now ! My skin is on fire any tips ?

[Turquoise-1]

Hi Sandrakee,

You have my sympathy as I too have had 2 weeks of side effects taking Prednisolone, itchy skin included. The 14 day trial of daily 30mg dose has not suited me at all & has not given me any relief whatsoever with SLE Lupus symptoms. Rheum Dr I’ve spoken with today has told me to stop taking them, no tapering off, simply don’t take any more.

Side effects = Waves of hotness, night sweats, red, itchy rash around neck & over chest, extreme fatigue, severely depressed & low mood, all usual joint pains & SLE problems (Malar rash, red dots on face & hands + bleeding skin lesions on hands).

I have definitely felt a lot worse over the last 2 weeks whilst taking Prednisolone than I felt prior to taking them.

Added to this I had Anaphylactic Shock in July following a Depo-medrone Steroid injection whilst in the consulting room at Rheumatology Hospital. 2 doses of Adrenaline + 999 ambulance to A&E. As a retired Paramedic I am fully aware of how life threatening the situation was.

Steroids are definitely not for me!

I recently also tried Hydroxychloroquine and had many side effects with that too including feeling like my skin was on fire as you describe on your steroids.

Hope you’re soon feeling much better ……

[Sandrakee in reply to Turquoise-1]

Sounds like you have had a rough time I’ve been on hydroxy as well it was awful for me ! I’m trying now to get off the steroids but would be so easy to put them back up as this is so frustrating

[Turquoise-1 in reply to Sandrakee]

I totally agree that it is so frustrating especially when others seem able to tolerate these drugs. Even the Doctor I spoke with today seemed at a loss what to say to me when I pointed out that surely I can’t be the only patient she’s ever come across who has had side effects from both Hydroxychloroquine & Steroids. I prefer to take nothing than suffer the side effects …… Strangely, bloods were all in range but I feel terrible, yet when I felt well, inflammatory markers were all out of range!

It’s the weirdest illness ever…..at least there’s like minded folk on here which I find helpful.

Nice chatting to you, wishing you brighter days ahead 🙃

[Haired in reply to Turquoise-1]

Hi Sandrakee,

You poor thing the burning skin is so difficult to deal with especially at night. I developed Skin Lupus due to a PPI medication for stomach problems. I did not have the butterfly rash on my face but the rest of my body was covered.

I had skin biopsies and was diagnosed with lupus and Sjögren’s syndrome. Over the past 6 years it has transpired I am very allergic to medication. ( Plaquenil, Methotexrate & Imran. ) The imuran caused liver problems after a few weeks. Like you I was on Steroids decreasing nearly continuously from 2017. The steroids would start to help the skin but when I got to approximately 5 mg the skin would flare again.

During this time the “Burning inside my legs and arms “ was awful and night time was the worse. Breathing was also bad and fatigue.After many trials on other meds I am on 6 month Rituximab infusions since Jan 2021 the skin has really improved but unfortunately when I gave up steroids rash started again. I am on maintenance steroid 2.5 One day five the next.

My Rheumatologist gave me amitriptyline 10 mg last year to help with the burning pain/sensation which has definitely helped. I could not manage the 10 mg prescribe so I take 5 mg due to sensitivity with medication. Like with so many lupus sufferers it’s very much trial and error. But I sympathise with you regarding the burning skin. I find Material in clothes can even hurt the skin.

I should also mention the dermatologist I attend has recommended tablets for photosensitivity which I think are helping HELIOCARE ULTRA D. They are not on prescription I order them online. The Photosensitivity has been much worse for the last year (eyes and skin) so I also take their Heliocare lotion for my face every day also on vitamin D Desunin 800X2 daily and folic acid.

Sorry for the long reply and I wish there was an easy answer but unfortunately it’s day to day which can be hard to come to terms with. I hope things improve soon for you.

Take care x

[PMRpro]

Have you tried taking an antihistamine? Always worth a try. Has your skin dried a lot while on pred? That is a common reason for itching with pred and a really good emollient cream such as Doublebase or Diprobase is what most of our members on the PMRGCAuk forum find helps with pred itching. We are all on pred.

Do you mean it has appeared now you are at a low dose or did you also have it at higher doses?

[Sandrakee in reply to PMRpro]

I’m on them yes they aren’t helping ! The rash arrived 9 months ago with covid and never left

[PMRpro in reply to Sandrakee]

Hmmm - you have my sympathy! But is it really the pred?

[Sandrakee]

I’ve no idea but it’s worse now I’m tapering so low ?

[ShannonB in reply to Sandrakee]

Hi - Sorry to see this. If your rash is getting worse as you taper the steroids down, my rheumatologist has had me increase again, get the rash under control, then taper more slowly. Have you discussed it with him/her?

[PMRpro in reply to Sandrakee]

We see it in people who have developed allergies to go with their autoimmune disorder. High doses of pred manage it well - but the symptoms return as the dose goes down.

[AlyaAlkaly]

hello stop using steroids cream use Elidel cream

[Smudge4465]

Morning, sorry to hear you are in so much pain and discomfort. I’m not clinically qualified and based in the UK. But I can tell you of my experience 4 years ago. I have lupus and several allergies . Large doses of steroids saved my life whilst in a burns unit via A & E. 50% Liquid Paraffin. 50% White Soft Paraffin Ointment in large pots is very hydrating, soothing but also reduces temperature of rash and is readily available without prescription . Very oily to use but when yr desperate who cares if it gives relief. Dermatology and rheumatology worked very closely as a team. They were fab. If you start to blister don’t be reticent to go to A & E. I wouldn’t want anyone to go through what I did if it can be resolved early and avoided. Stay positive, which I know is difficult. You will get there, this is just a phase. Private message me if you need any further support. Best wishes x

[Paprika60]

You have my sympathy! We all have gone through this phase one way or another.

It is important that you taper steroids down slowly and the amount of reduction is really individual especially when it is below 10mg. Try and error. You didn't say what you are taking right now. Did your doctor advise you to take 10mg down every week? You might consider going up for four days just to get some control and then taper down slowly from there. I took two years to go down from 2.5 mg to 1 at one point. I started from 35mg. It took me 7 years to reduce to none. Believe me, it can take a really long time. It all depends on each individual. Meanwhile have you tried different antihistamines? I was given so many different types and none had worked at all. One time a locum doctor asked if I ever had tried Piriton, a very basic one. I had nothing to lose but try. And lo and behold, it worked! I couldn't believe it. All those years of itchy burning blistering rashes all over my body! It was the ordinary broadly used piriton that helped along with tapering steroids. Also try organic aloe vera gel (99%). It won't get rid of your rash but it takes the heat down and reduces the itching, also good for your skin. I used to use hot water bottle when it was so itchy...even hot melting candle wax! I was absolutely desperate as doctors gave me nothing to help with the itchiness. Then I had to use ice pack when the rash starting burning...I did everything natural. Cool oatmeal bath and etc. Also no alcohol and sugar. Hope you find some tips from this site helpful. Also try your best to stay less stressed. I know that is impossible when your body is itchy. But stress makes it far worse. Hope you get better soon. BTW, hydroxychloroquine does work but it takes really long time to start its effectiveness. In my case I think over four to six months. However, finding the right brand is important as wrong brand can give you stomach issue along other side effects. It all takes time to figure this one and doctors don't necessarily advise you on these aspects. I had to find it hard way but HU really helps with loads of infos and posts. You just have to look for the item. 🙏