Off Pred : Hi I havnt posted in a while because I... - PMRGCAuk


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Off Pred

Toobusyforthis profile image
18 Replies

Hi I havnt posted in a while because I’ve had to take myself completely off Pred ..because I’ve gone from seeing a private Consultant to waiting for months to be seen by the hospital at nhs . My Polymialgia is back 100% I’m struggling to get out of bed and ache over most of my body , but I’ve developed a strange sensation across my chest when I first go to move and wondered if anyone else had ever experienced it, it’s like a weird web of muscle spasms across the top of my chest/neck area it’s very painful but goes off once I’m up and moving around 🤷‍♀️ I’d be grateful if anyone can shed some light on this please? My appointment is the 20th September regards lisa

18 Replies
123-go profile image

I've had a quick read of your past posts and have it's clear you've had a rough ride. Prednisolone shouldn't be stopped abruptly and doing so has caused a major flare. Prednisolone is the ONLY medication that will reduce the inflammation in your body. The chest spasms may not be serious but need investigating. You have several choices in my opinion: ring your surgery first thing in the morning and explain all your symptoms; if your GP won't see you on the same day ring the hospital where you are to have your September appointment and tell explain your current condition and that you have no Prednisolone.

I hope this is all resolved quickly and will be thinking of you. Please let us know how you get on.

Toobusyforthis profile image
Toobusyforthis in reply to 123-go

Thankyou so much ..I’ve been hanging on but I may call the doctor and see if possible I could see someone, but I know at the moment Doctors are hardly taking appointments it’s just over the phone . Also my go surgery have been pretty useless and passed me on to the Hospital app ..I’ll keep you posted thanks again x

123-go profile image
123-go in reply to Toobusyforthis

Thanks for coming back 🙂. I do hope you will ring your surgery stressing that you need an urgent appointment. Many of us here have realised that sometimes we have to advocate for ourselves which can be a bit daunting if you aren't normally 'pushy'. Write down what you want to say so that when you do ring you won't leave anything out. As long as you are respectful you should receive respect in return 🤞🏼. It won't hurt to say that you are at the end of your tether! Good luck and if you have any questions you know where we are.

Toobusyforthis profile image
Toobusyforthis in reply to 123-go

Thankyou so much ❤️

Kendrew profile image

Hi Toobusyforthis.It's quite difficult to offer any kind of advice really as there's not much information regarding how much pred you were on or if you'd only received the injection.

All I can tell you, is that stopping steroids suddenly can have serious consequences, particularly if you've been on them more than several weeks. Adrenal crisis can be a consequence and pain at the front of the chest (precordial) can be a symptom of that. I'm not saying that's what's wrong with you and the area you're experiencing the pain doesn't quite match the area of the precordium but it does need investigation. Adrenal crisis can be extremely serious if not addressed promptly.

It's also important to have any new or unusual chest pain investigated just in case it is something needing rapid intervention.

I'm sure others with more knowledge will be along at some point to advise you further.

Toobusyforthis profile image
Toobusyforthis in reply to Kendrew

Thankyou so much for your response , my private specialist gave me steroids , which I had enough to last 3 months, but my Gp refused to treat me with them as she said she had no patient plan to follow and I should see my private person agajj in n 🤷‍♀️ . I was left with no choice but to slowly wean myself off Pred as I knew I only had a short supply. I have since received an appointment to see a Ruemy at Broomfield hospital on 20 sept. X

Kendrew profile image
Kendrew in reply to Toobusyforthis

Hi again. I would have expected your specialist (seen privately or on the NHS) to have sent a report to your GP (as is normal protocol) with all the necessary information, after any consultation. Both the rheumatologist and your GP should know that after 3mths you can't just stop taking steroids and any taper must have probably been much quicker than would ever normally be recommended.

If your symptoms persist or worsen I strongly advise seeking some medical advice straight away.

Toobusyforthis profile image
Toobusyforthis in reply to Kendrew

Thanks again ..the 20th can’t come quick enough! I’ll let you know the outcome xx

Hildalew profile image
Hildalew in reply to Toobusyforthis

If I have understood you correctly, I am appalled by the specialist and the GP.

Do you have any document -eg a letter to you or a copy letter to your GP - which gives your diagnosis and recommended treatment? I'm wondering if asking your pharmacist for help would at least enable you to get an immediate short-term supply of Pred. I can't imagine living though a month of PMR (and possibly other) pain with no relief.

Toobusyforthis profile image
Toobusyforthis in reply to Hildalew

It’s been a nightmare!! Once I went private the doctors didn’t want to know, said my markers were too low in my blood and they ‘don’t give out steroids like sweets’ ( insinuating my specialist had) 🤷‍♀️

Koalajane profile image

Your profile does not say anything so could you let us know which country you are in and when you were diagnosed so we can help more

S4ndy profile image

Who did you see privately and is it the same person you are seeing at Broomfield. I am under a rheumatologist called Dr Peddasomayanjula at Broomfield. He is really good. He also does private work. If it's him then my advice to you is to call his secretary as if you were private and see if you can get him to ask your gp to prescribe an interim prescription. Hope you get on ok.

Toobusyforthis profile image
Toobusyforthis in reply to S4ndy

Hi no I saw a Dr Ashok …I’m seeing her or one of her understudies xx

cycli profile image

stop being reasonable and get angry. It's your health not the idiot doctors. You need help NOW not in 20 days time.

Toobusyforthis profile image
Toobusyforthis in reply to cycli

Okey dokey ….your right! I’m ok no it x

PMRpro profile image

Your GP has caused this removal of pred by being intransigent? Or has the NHS consultant intimated they want to see you OFF pred for the first appointment?

Either way it isn't all bad - and after only 3 months of pred you shouldn't be at massive risk from stopping it. I had 5 years of PMR/no pred so I know what you are going through - but appearing at the long term rheumatologist with whatever you have in all its glory does tend to get at least some notice. Arriving well controlled with the treatment a GP or private rheumy felt was appropriate sometimes creates barriers that cause the rheumy to get unhelpful.

Toobusyforthis profile image
Toobusyforthis in reply to PMRpro

Hi ..yes my thoughts are the same, although I’m in agony at least when I do see the specialist we will be starting from scratch ! Only a few more weeks to go!! Thankyou for your support x

PMRpro profile image
PMRproAmbassador in reply to Toobusyforthis

Don't reject the thought of a wheelchair to get from car to appointment - and don't play the make-up and well dressed card either!

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