rheumatoid arthritis : Hi All, I have been recently... - NRAS

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rheumatoid arthritis

Rose75 profile image
20 Replies

Hi All,

I have been recently diagnosed with rheumatoid arthritis. I have been prescribed Prednisolone. I have read about it. The side effects dounds crazy. I feeling very anxious about taking the mediation. I am on 20mg Prednisolone. Any advice please.

Thank you

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Rose75
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Lolabridge profile image
Lolabridge

Hello Rose75

I believe you've been diagnosed fairly recently? Have you seen a Rheumatology consultant yet? Is that who put you on Prednisolone? Are you prescribed anything else as well? It's often prescribed until one/some of the special DMARD drugs take effect.

I take it and cannot manage without it at present as my RA not yet under control. Yes there can be some side effects but not everyone gets them and mine are minor. It's more important to me that my inflammation, pain and swelling are all reduced so I can function! There are side effects with all drugs, including paracetamol!

See how you get on with the Prednisolone and contact your Rheumatology nurse or GP if you experience side effects that concern you.

Rose75 profile image
Rose75 in reply to Lolabridge

hi Lolabridge,

I have a appointment with the consultant in 21st November. I was in a lot of pain recently. I went to A&E and they prescribed it. They prescribed 20mg Prednisolone. I have other medical conditions. I have diabetic type 2 and high blood pressure.

Thank you for advice.

nomoreheels profile image
nomoreheels

Hiya Rose75, welcome. I was going to be naughty & say you don't know much about RD meds then but that's unkind of me because we were all newly diagnosed once & knew nothing about the types of meds needed to bring the disease under control, they're not smarties shall we say. Until you receive a firm diagnosis from a Rheumatologist I think A&E were attempting to bring down the inflammation & pain you will probably have. It's pretty common to try prednisolone prior to diagnosis & starting DMARDs (Disease-Modifying AntiRheumatic Drugs) even though NICE guidelines suggest not. They can help determine if there's a question over which particular one you have.

Whatever you've read about prednisolone will probably relate to long term use not short term as you'll have been prescribed. When you see a Rheumy you'll probably be off them in order for him to diagnose you properly, without the aid of steroids masking inflammation & of course pain. Bear in mind that drug companies who produce the med have to list every side effect that was found in the 3 stage trials that are needed before a med can be brought to market so you're not guaranteed to have any, or if you do it may be the more common ones, usually tolerable. I've taken it for 6 years, long term therapy, now down to 3mg & haven't had any side effects at all even on higher doses. I take it with my morning meds, as directed by my Rheumy.

So don't overly concern yourself, the likelihood is this is just a short course (28 days or less?) & you shouldn’t have any long term effects. You may be prescribed them a few times in your RD future as another of their uses is as bridging meds whilst waiting for DMARDs to take effect (they're not quick acting meds & can take around 12 weeks to be fully effective) or if you flare, they work very well in both instances. Of course each Rheumy has his preferred way of treating so nothing is written in stone but this is generally the way.

Maybe a read through the NRAS site at your leisure would be helpful given you probably understand little about the condition? nras.org.uk

Of course if you have any questions you only need ask, there will always be someone about to help you.

Hope some of this helps.

Mmrr profile image
Mmrr

Prednisolone has been my saviour , I can't manage without it and have no side effects at all.

Some people don't sleep so well on it, but by taking it first thing in the morning usually resolves that. Always take with some food to prevent it upsetting your tummy, I take mine with my breakfast.

All drugs have the potential to have side effects, some people get them some don't, you just don't know until you give it a go.

If you do get side effects that are too difficult to deal with, or are worse than dealing with the pain , then just stop taking it. But it is worth giving it a go.

Rose75 profile image
Rose75 in reply to Mmrr

Thank you for your message. It is good to hear. I am hoping it will help me too.

Rose75 if it works and takes the pain away you will love it. All drugs have side effects but short term or lng term you will get to know as you go down the RA road. I take 5mg and taper down to 3mg but know i might have to go to 10mg on bad flares.

Rose75 profile image
Rose75 in reply to

Thank you for your advice. I am hoping that it will help me and take the pain away.

Rose75 profile image
Rose75

Thank you all for your quick response. I hoping it helps me as I can't bear the pain.

Lyndy profile image
Lyndy

Hi Rose

I used to love that instant pain relief you get from pred and it can really help short term but make sure you don’t get stuck on it... particularly not at a high dose for any length of time. I have been taking it for years and it really doesn’t do your body any good long term but it is very hard to give up.

Hopefully you should soon be getting some better RA meds x

lilyak profile image
lilyak

Please don't worry, short term presnisolone is a miracle. It will reduce the inflammation and therefore the pain. All if the serious side effects are associated with long term use, and its unlikely that you'll need it long term. Prednisolone is often the bridge to keep the pain under control while we wait for (slow acting) dmards to kick in. Your rheumatologist would likely have done exactly the same thing and A&E, so please just take the medication and try not to worry. Enjoy the relief it brings you, and take care.

helixhelix profile image
helixhelix

The devil’s tic tacs.... I love them and hate them equally. But they can be magic. In my first year after diagnosis I took a fair bit, with no awful side effects or long term problems, since then I’ve rarely needed them. So I wouldn’t worry about long term use. Try not to be anxious about it - but then the pred can make you feel anxious about things anyway.

cathie profile image
cathie

It’s a short term solution a sticking plaster until they can find something more permanent. One thing to watch out for is what it might do to your blood sugar levels. I hope you get some longer term relief

Tillie20 profile image
Tillie20

Hi The hospital have proberly prescribe them to bring the inflamation down and help with the pain until your Rheumy appointment , I hope you get some relief soon we all know what it is like X

LesBev profile image
LesBev

Hi Rose, newly diagnosed is such a scary place to be but the overriding messages on here are that specialist rheumatology teams know what they’re doing. It can take a while (3 years for me) to find the best long term routine but prednisone can give you some respite meanwhile. I’ve taken it for over three years now with no side effects I’m aware of. Started at 20mg and this last year tapered down to 5mg daily. I hope to taper off completely but that takes a while.

It helps not to get too stressed and to deal with any concerns before they worry you. Be kind to yourself and hope you feel better soon. Lx

Troygirl profile image
Troygirl

I take it and cannot manage without it at present as my RA not yet under control since being diagnosed way back late 2017!

Have been on almost every DMARD, Every Biological for TNF, IL-6, and even JAK's! Even brought out the big guns, IV Infusions!!

Nothing has worked!

Therefore Prednisone has been the ONLY thing that has taken away the excruciating pain in my wrists and shoulders. It has been the ONLY thing that allows me to get to work & function without crying in pain!!

How can wrists and shoulders be in an endless 2 year flare?

Prednisone is great for short term use and to hold people over until their RA drugs kick in. But soooooo bad long term!

Anyway, because of being on Prednisdone for so long and at doses for months at 20-30mgs, I now developed Cushingoid.

Because none of the RA drugs ever worked, I could not reduce 1mg or I would be in pain again. So had to think outside the box since NONE of the RA drugs were working for me!

Did tons of research combing through medical journals & listening to people tell their stories on blogs like this.

I started REAL CBD oil almost two months ago and was able to reduce my prednionse from those high doses down to 10mg! It was a miracle.

Also started Tripterygium wilfordii (thunder god vine) and waiting to see if I can reduce even more next week.

All the "traditional by the book RA medications" are just not working for me and the side effects from them have been horrendous!

My RA doc says I am unique! Yes I definitely must be, but I will no longer be his guinea pig and let him keep poisoning my body with things it is clearly trying to reject.

Glad they work for others, but they are not for me!!

Hair gone! (from chemo like DMARDS & biologicals)!

On more medications because of side effects from RA drugs (high blood pressure meds, high cholesterol meds and lasix from swelling.

I don't even look like myself anymore! It is really bad!

Time to think outside the box!

Cowgirl68 profile image
Cowgirl68 in reply to Troygirl

Can you tell me more about the CBD oil you are taking?

Troygirl profile image
Troygirl in reply to Cowgirl68

Yes.

It is the species of the Marijuana plant called: Indigo (1:19)

1187.5 mg CBD

62.5 mg THC

I prefer the highest level of CBD with only a small amount of THC because I do NOT like the feeling of being "high" and loopy.

It's not cheap either!! $195.00 for 25 ml bottle!

But it really, really, really does take the edge off!

Takes about 2 weeks to start to work on inflammation.

PS.. I am down to 5 mg of prednisone per day! Yay!!

Deminem profile image
Deminem

Dont be afraid of it, be more afraid of not having it. I do get your apprehension but if like me you develop a healthy love hate relationship with pred it will serve you well. It is the biggest life saver, and deserves big love for that, and is an essential part of your treatment/therapy at the start, well it was for me anyway. The healthy hate should kick in after its reduced your inflammation to a manageable state and then Docs should have a kinder longer term med to switch you to. None of the longer term kinder to your body meds work as fast and as effectively as Pred does so gotta love it for that. Side effect are unpleasant but present mainly with continued long term use. Embrace the leg up its giving you but don't get hooked and move on to the next treatment when your symptoms are under control. You can have a crossover between most RA meds, but after new one kicks in taper the Pred and kiss it good bye and farewell.

D

windsor1944 profile image
windsor1944

Your problems sound like me,none of the biologics worked for me but made me feel worse. I finally found one that didn't give me side effects , Kineret 100mg by injection once a day. I give it to myself.

I have a laundry list of medical problems including kidney disease that is a big problem with my treatment. I've had RA since 2002

bear4ble profile image
bear4ble

You could google ncbi.nlm.nih.gov, open PubMed, and see if there is anything useful for your condition.

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