Steroids

[smk21]

Hi. Im only a few months into my life with RA. I've been on methotrexate for a month now and my rhumy doc wants to put me on steroids again. I hate taking these toxic meds and have almost decided not to take the steroids. What's your take on this please?

[s7j7e7]

Hello smk21. I'm so sorry you've just joined the RD "club"!

I had steroids for the first time this year (diagnosed in 2010; intolerant of everything except Naproxen and morphine) for an incapacitating flare in both hands, and Prednisolone was excellent for treating that - BUT it took me 6 months to come off (from 20mg) because the side effects from slowly diminishing the dose were so horrible. I also developed a very hairy and "hamster" face, with a hump at the top of my back, while taking them although they are slowly disappearing.

HOWEVER, I am now aching so badly everywhere that I am considering asking my Rheumy if I should consider going back on them at a lower dose for a very short time.

Sorry, that's probably not a lot of help! I am ambivalent about steroids, seeing both sides of the good they can do, but the awful disadvantages too. Good luck with whatever you decide.

[Suki1088]

Hi smk21,

I understand your frustrations as I have them myself. Choosing whether or not to take steroids is difficult. I have been taking them daily for a number of years something which I hate doing and constantly worry about.

Before you make a decision I would weigh up the amount of discomfort you are in and the relief you are getting from other meds you are on. In my case I have been resistant to nearly every drug out there for RA and so the steroids have been used to keep my RA symptoms bearable until something works.

They are really effective at calming down a flare up and are about the only thing that give me relief when it gets really bad and so I would recommend taking them if you are having a particularly painful period. They are not good to be on for a long time and this fact terrifies me as I have been on mine for a few years Hopefully you won't have to be on them for very long and if your MTX is effective you can continue without them.

x

[AgedCrone]

Go with your gut feeling.

Why does your rheumy want you back on steroids?

Ask for an explanation & if you still have doubts ask if there is an alternative.

It's easy to for me to say, but it's your body only put into it what you feel will help you.

I refused steroids after really a nasty reaction...my Rheumy was fine & agreed it wasn't the way to go for me!

Good Luck!

[Whiskers64]

Hi smk21, sorry to hear that you are diagnosed with RA I used to be on Methotrexate but had to come off due to a Lung complaint & now on Hydroxychloroquine but three years into my RA I can only say that when I've had a flair up and been given Steroids in prescriptions over one month periods, over the three years they have worked every time. So over short term treatments to clear a nasty flair up I would certainly take them but long term is not so good due to problems Steroids can cause. Talk to your GP if not with your Rheumy & if like mine you can discuss these sorts of concerns very easily to put your mind at ease.

[Bandido]

Advantages of prednisone are clear in terms of anti-inflamatory drugs. They work but you have long term bane damage associated as well as thinning skin and for the boys ED. I had seven years on them and am glad to be off. Yes I now take ibuprofen as required and that can damage the stomach but you can stop start them with no problems like steroids. Everything has problems but we can't be to choosey when you never know where the next pain is coming from. Most important is do what you have to do to get a decent life in spite of it all.

[rawillbebeaten]

Dear smk21,

I agree with the other replies, steroids are a necessary evil when required. I've been on them since the start in 2001. I got down to 7.5mg a day for quite a few years then a really bad flare in Jan this year effecting my eyes. This meant 3 days of an infusion in the morning in hospital and then 100mg per day reducing dose. Now been back down to 10mg for a couple of months and hair is recovering from loss and thinning, face is not puffy but have piled on the weight, partly steroids, partly flare went on to effect my feet and it to ages to slowly increase my walking from almost nothing to reasonable but not as good as I want. Without the steroids I know things would have been MUCH worse.

Take advice but as all the others have said, it's your body and Non Steroid anti-inflammatory drugs might be better for you.

Thinking of you and hope things go well for you and Methotrexate works.

Michele

[Jora]

I've been on a low dose (5mg) 0f Prednisilone for 3 years, since I was first diagnosed. I'm on 25 mg of Methotrexate and Rituximab infusions, but despite that I was in constant pain everywhere.

What upsets me is when some people whose RA is under control without steroids take a holier than thou attitude. We are not all the same. I would love to manage without them, , but I can't.

Jora

[Hidden]

Actually I prefer the steroids to the smart I took. Sulfasalazine was awful, the steroid got me through the worst. I think short term they're ok.

[Bookworm55]

I was prescribed steroids by my Gp before my RD diagnosis in Feb this year -40mg and boy did I need them as in absolute agony. Started mtx and hydrochloriquine at initial consultant app and have slowly reduced the steroids until off them completely a few weeks back. Blood tests and pain levels seem to indicate that my RA is under control atm but presumably they wouldn't have been recommended for you unless docs were concerned about inflammation levels.

As others have said, there are advantages and disadvantages with taking them. I had no side effects to speak of so would not hesitate to use them again for a flare up. NSAIDs btw had no effect on my pain at all. I believe it is important to keep inflammation as little as possible to prevent joint damage later on - I discovered that I already have OA in both knees and hands so don't want to risk further damage.

[smk21]

Thanks everyone. These a lot of thinking to do I think. Thanks for all the advice.

[Mandalou]

Hi smk21

I think your Rheumy must be concerned that your RA is not controlled currently and unchecked inflammation over long periods can cause so much irreparable damage that a short course of oral steroids would be the lesser evil.

If you respond particularly well to oral steroids then that is another diagnostic tool the specialists use.

Listen, no one WANTS to take this insidious drug but Jesus was I in desperate need at onset.

40mg a day of Prednisalone rescued me from total incapacitation, I won't go into the steroid induced diabetes that followed as that's all resolved and I am no longer classed as a diabetic.

As soon as I was on Biologics ( Enbrel) after failing three first line DMARD's I was able to taper my steroids and gave been off them completely since January.

Perhaps discuss taking them with set dates in mind for response to other drugs.... A plan of action if you like with your specialist.

I had a bone density scan after 5 months on them to check everything was OK.

Good luck with your decision and I would weigh up the pro's and cons carefully before arbitrarily declining treatment.

Very best wishes,

Mx

[Rosebaywillowherb]

Hi smk21, I've been on 15 mg of steroids for 14 months,they got the pain under control very well,but, my bone density is very poor,calcium/ vit d every day is helping,also weekly alendronic acid tablet.I do worry about continual use, but not having that horrendous pain every day makes me carry on. I have no other options drug wise, as had everything going over 17 years.I hope you find our comments helpful in your decision.x

[Joy_1]

Hi smk21

1 month is not long enough for the MTX to start taking effect. I was told by my Consultant that it takes 3 to 12 weeks before MTX kicks in. So maybe he/she wants you to take them for the short term to tied you over this period.

Pred for me WAS the magic bullet when I was first diagnosed with RA. I arrived at the hospital in a wheel chair and after a jab of steroids I was dancing round the room within 48hrs!

Steroids dampen down the RA as others have said. And as others have said it is the long term damage they do that you need to be aware of.

I was told that it's when you are on them for more than 3 months that the negatives start to play their part. But hey many of us rely on them while the immunosuppresants take effect. Sometimes we need them longer and then you need to come off them slowly. And some need to be on them for many years.

I hope the MTX delivers v soon.

Joy

[Hidden]

Hi smk21 - in addition to what others have said, one thing I wanted to mention is that sometimes we need to do things temporarily that we might not want to. In other words, you will most likely not always be in this state. But to get from here to there, it is helpful to use whatever tools we have at our disposal that work. I would consider taking the Prednisone to get you past this critical pain point and let you enjoy your life a little more.. Just my 2 cents

[Fra22-57]

If they help you take them .It's far better than to suffer . I have been on 10 mg prednisolone for 4 years.Was told rheumy would get me off them but then this year said I am on them for life. I take alot of medications so accept it.

[Gretchy]

I was given a steroid injection to tide me over until the methotrexate kicked in as it does take 3 -12 weeks to work. Sadly it turns out I am one of the rare people for whom steroids have the opposite effect, increasing the inflammation. Also turned out to be allergic to methotrexate, sulfasalazine and hydroxychloroquinine. I have a very aggressive form of RA but am on nothing whilst they reconsider what they can do.

I know all the drugs are horrible but I would be grateful if any of them work for you because it could be worse. You could be like me

[npkb]

Hi

I can well understand you are wary of steroids, and they can have serious problems if used long term. But it can't be denied that they do work, and all drugs have some side effects. Everyone is different, and you have to find what is right for you.

Bear in mind also that avoiding all treatment also could have potentially serious consequences .

I speak as one who has been on prednisolone for 20yrs, as I couldn't find anything else at the time that I could tolerate that worked. For the first 15years I had absolutely no adverse effects I was aware of - my ra was controlled, I felt good. Apart from two weeks initial high dose (20mg) I've been on 5mg daily and now, for the last 5 years, 3mg daily, always keeping the dose as low as possible.

Yes, I now do have osteoporosis, probably in part due to the steroids (also due to having always been underweight and limited in mobility by the ra), and my skin is now thin and fragile, definitely due to the steroids. But at 64, and having had severe RA for 40yrs, I do not regret the choice made by my rheumatologist and myself. It was right for me at the time.

The worst thing is that after over 20 years my body is now dependent on prednisolone. I have been told that the chance of ever coming off it is almost zero. If I try to reduce below 3mg my joints seize up and I feel very ill. But even so, for me, the benefits have outweighed the problems.

Be aware of the risks, take advice from your rheumatologist and do what is best for you. If that happens to be steroids for a while try not to panic. I'm sure you will be monitored closely and will not have to take them for too long.

Good luck☺

[AlexandriaUK]

Hi its 12 years since I was diagnosed with RA and have never taken any meds as I decided that the after effects of most of the drugs to treat RA are too risky, gave up smoking took up exercise and I don't think I'm any worse than those on a cocktail of drugs

[smk21]

Thanks everyone all good advice there.

[Mandalou in reply to smk21]

Don't forget smk21 to ask your GP for some calcium supplements if you take steroids for any length of time.

Any GP worth their salt would of course pre empt this without you having to say anything.

There are some good links on here smk21 to articles written by really experienced specialists who put RA into perspective, sorry I'm not tech savvy enough to point you in the right direction but I remember one article in particular that explained that there was ' no such thing as mild RA'

It was excellent and really made me understand the reasons behind treatment and why you shouldn't be scared of treatment.

I'm very glad some posters have been in remission enough to eschew all traditional meds and it's nice to hear of people doing well naturally, but all I can say is that my onset went from two achy fingers for a couple of years ( ignored by me) to explosive polyarthritis and total incapacitation.

After being unable to wash, wipe and feed myself and the lying prone in bed feeling as if someone had overnight put both my hands in a bag and smashed them to pieces with a hammer and the only thing holding them together was the bag ( my skin)

Now, I am back at work after 11 months in a very demanding physical job with unsocial hours and I am doing so well.

There is hope and I thank my stars I have had access to modern Biologic medicine.

Sorry to go on.

Take care of yourself and tell us how you get on with your decision.

Mx

[smk21 in reply to Mandalou]

Thank you for sharing your story with me.

Ive decided not to take the steroids but stay on thw mtx and give them a chance ro work. I feel im not bad enough to warrant the steroids, but won't right them off completely if things worsen.

[Amy_Lee]

Reading through all the posts, I think I am very lucky that I only took 2.5mg prednisolone daily for about 8 months. The dosage that many of you took here were so high.

Before my rheumy started the treatment on me in Jul 2014, she asked if I had anything to ask? First thing that came into my mind was the steroid side effects. Then she said steroid was a very good drug, the side effects came into place only when one overdosed and used them for too long. She said that steroid was just a bridge while waiting for mtx to work on me.

I was in great pain and my body swell all over, so I decided to surrender myself to her. She gave me 2 jabs of steroid to start with and I took mtx, prednisolone and other painkiller at the same time.

MTX started to work after about 4 months because I started to feel a little less pain and the swell was reduced a bit too. However, the pain was reduced to about 4 only after 10 months. I was told to slowly reduce the prednisolone after 6 months. My rheumy told me to adjust it myself because not everyone reacted the same. She said I could start to take it alternate day, if I was fine then skipped for 2 days, then continue to skip. I believe my dosage was very low and I responded very well, I started to skip one day, I was fine. Then I skipped for 2 days and I was fine too. Then I stopped for a week, I was okay also. Then I stopped them totally in 2 weeks.

It is very individual, but I do agree you should check with your rheumy to see what best for you. It is a very good drug I believe too after using them but as my rheumy said, we should not overdose it and we should not depend on it for long term. This should be used under professional supervision.

[Paulajolo]

Sadly so far it's the only drug I have been able to tolerate. When I was really bad I had Steroid Injection which was fantastic and lasted 6 weeks. I think short term you will be ok. I was really reluctant to take steroids but was left with no choice.