How many of you have had complications with steroids (pred)? What dosages did you have and what did you do to correct it?

Anyone on prednisolone have weight gain, diabetes, bone thinning, easy bruising, thrush, cataracts, glaucoma, fluid retention, depression, leucocytosis/neutrophilia, addisons, cushings or anything else? Is there anyone who just cant go off it and has to deal with its effects?

[flaxton]

Hi

I have been on prednisolone for 2 and half years starting on 30 mg a day. It has been wonderful for pain and allowing me to function until I was diagnosed with RA Jan this year.I started on. Methotrexate and began reducing the dose from 20 mg down to 10. I have gained 4 stone in weight have trouble sleeping thin skin etc etc. I had to give up work because of my RA so thought getting off the steroids would be ok . It is a long haul I become impatient and reduce too quickly, 1mg reduction every two weeks this is too fast,I end up having to go back up to 10mg to reduce the massive flare. I am on alternate days of 7mg,6 mg this has been OK for the last month. I am now going to try 6mg only and then in a couple of months alternate to 5. I feel my body has become reliant and addicted to them, my GP did apologise for getting me hooked( his words). There is a balance with quality of life and the side effects very difficult I know. I am now on the biologics and am determined to get off the pred, but I anticipate it will take a least a year to do so. My advice taper down very very slowly and be prepared you may have to increase from time to time. My face in now a lot slimmer and the weight is starting to go. It is hard and frustrating but you can do it. I think I could have worse things to deal with so stay positive, I write a diary of my struggle with Pred.

Hope this helps a bit, My Ra is coming under control slowly hopefully for a sustained period of time and I can say bye bye PRED.

Good luck and best wishes

Lorraine x

[Hidden in reply to flaxton]

HI Lorraine, thanks for your story, it sounds familiar to mine. I was just wondering at what point people started having problems with steroids as my history of those drugs is too complicated to track back. I did taper very slowly but always end up back n higher doses again because of flares. I will explain a bit more below.

[Hidden]

Hello

Yes there are contraindications and one of them is weight gain, there are other problems that you mentioned so if you are feeling this bad you should go and see your GP and get this medication looked into

Sometimes if you are taking NSIDs they also can cause bruising so it is possible that medication is not suiting. you

You have given a long list so you really need to see your GP

Happy New Year

BOB

[Hidden in reply to Hidden]

Hi Bob.... I hope you are enjoying the holidays

Yes Im under quite a few docs including a rheumy, ortho, neurosurgeon, endocrinologist and GP. My meds do include the anti-inflammatory Mobic but Ive been off it for 2 mths now due to recent surgeries and I still have petechia and haematomas forming and when I was off pred but still on the Mobic, the easy bleeding/bruising cleared up.

The list I gave was a general one to see what peoples experiences are and how they coped with them however I do have most things I named....put it this way, the only things I dont have on it are glaucoma and addisons disease. I am just hoping to get info so I can make an informed decision about my options and their consequences.

[Hidden in reply to Hidden]

Hello

Netbuddy

Merry Christmas

Sorry I misunderstood, thought you were contraindicating on a litany of medications.

You need to watch steroids as they can cause some serious problems, and sometimes a decision may need to be taken on weather to take them or not. especially if you are taking other medications as well. That is how I read your script

All the very best

[oldtimer]

I have been on 30mg in the past, up and down according to blood results and signs of inflammation. I had problems 6 years ago with my bone marrow packing up and becoming very anaemic, this resolved with high dose steroids. Apparently a rare complication of auto-immune disease.

I have over the last year been tailing down from 10mg (increased at the last flare). I have to do it very very slowly. From 5mg only by 0.5mg every four to eight weeks. I'm on 4mg currently, but will stay on this because of the state of my joints just now.

Because of the bone marrow problem, steroids probably saved my life. But reducing them has been a problem - the lowest I have got to has been 2.5mg in the last six years. Then the anaemia returned and I had to increase them again.So I may have to stay on them for ever.

I do have some problems with thinner skin and bleeding easily. But my bone density is above average (lots of weight bearing exercise). By being very careful with portion size, I have kept the weight gain to only 15Kg at its worst, now down a bit to only 10Kg over my usual weight. (I find on higher doses I have no feeling of having satisfied my need for food). If you know what the side effects are, I think you can manage them unless the doses are high.

I assume you are either having steroids or thinking about them?

[Hidden in reply to oldtimer]

Hi, thanks for sharing your experience with this frustrating medication. Sounds like it has been a stuggle at times to reduce them, you are lucky you havent had any complications with them... why do they want you off them?

To answer your question, yes, Ive been on high doses for asthma all my life and ocassionally its been long enough to cause problems but they always disappeared when I went off it. However, 2 yrs ago I spent 6mths in hospital and was placed on high dose dexamethasone which pushed my sugars up and I ended up on insulin. After I came home the sugars dropped to near normal but my joints and lethargy were so bad that I couldnt get out of bed. I had been like that before the hospital stint but my back and neck were in such a dangerous state that they had to take priority to be fixed before I ended up permanently paralysed.

When I was diagnosed with RA a few mths later, I was placed on SSZ (2000ug), Mobic 75mg, MTX 20mg and Prednisone 20mg to begin with then went up and down depending on flares or the state of my chest. We reduced to 3mg twice but I always flare below 10mg so my GP put me on 15mg which I felt great at. Then my sugars went crazy often showing a HI reading whihc is greater than 33.3mg or 600mmol/l in US terms.

SO now the rheumy wants me back off it but all the other docs want me to stay on it as they feel they can control my health better with them than without them. I feel like a piggy in the middle.... and its my fat that is going to be bacon if I dont decide who to comply with.

[julie_warwick]

I have been on pred since august varying doses but 30mg daily at the moment , it allows me to function but the doc has advised I slowly get off it and replace it with depo-med injection as horrible palpitations and high blood pressure just to add to the fun. I can't sleep and have gained weight , think I have fluid retention too as my face looks swollen , not nice but a small price to pay for the relief it gives. on 25mg this week , we'll see what happens. let us know how it goes..

[Hidden in reply to julie_warwick]

Thanks Julie, I feel for you as I know those symptoms and also know how much releif that steroids can give you. I would like to hear how it goes, Ive never heard of the depo-med replacing pred so it will be interesting to hear what it does.

[julie_warwick in reply to Hidden]

I'll keep you posted. day 2 of 25mg and I feel like I've been beaten with a baseball bat. not good..

[Hidden]

I was on a very high dose of pred [60mg] for a number of months when I had a severe breathing problem [rheumatoid nodules in my lungs and a massive infection]. In total I was on 60 down to 40mg for 8 months and then gradually tapered off over about 6 months. I have had bone loss, easy bruising, out of control bleeding [during surgery] and cataracts from pred. I'm now completely intolerant of the tablets - I get dreadful insomnia and a kind of manic hyperactivity after 48hrs on them - but I am ok on the depo injections but try to rarely have them because of the high level of damage they have caused. I should add that I've had a life-time of steroids having had kidney disease since childhood. I've had years on end with steroid moon face and the attendant weight gain but having stayed off them for the past 4 yrs or so apart from injections, I have determinedly lost the weight - but each time it seems more of a struggle My joints don't like the extra weight. When I was first diagnosed as well as a depo injection I was started on a low dose of pred until the meds kicked in. They can be a life saver and were the only thing that allowed me to breathe during that acute incident. But best managed without if at all possible - for me this means accepting a higher level of pain and inflammation that means I have to take long-term pain relief at a higher level.

It's an individual decision, if you are newly diagnosed then they are probably necessary to deal with the inflammation until you get on a DMARD that suits you.

Hope this helps,

Cece x

[Hidden in reply to Hidden]

Thanks for the info Cece... Intersting that I never put my insomnia together with the pred but it fits.

Can I ask what damage has the depo done? I have been told I have mild kidney disease too but they said it was probably from the diabetes.

I was diagnsed with the RA approximately 18mths ago but my history is saying I have probably had it for quite a number of years but we just treated everything individually not as a whole disease.

I am currently on Leflunomide after changing off SSZ. Ive been on MTX tablets for the whole time too but now the rheumy wants to change it to injection because she feels im not absorbing the tablets. My GP wants me on biologics but its up to the rheumy and she just wants to lower the steroids even though my other specialists want me on it. Its all so confusing.

[DrWhoFan]

Hi, I have been off steroids for about 6 weeks now after nearly 4 years. I too have been up and down trying to get off them. My highest dose was 20mg. I started on them for polymyalgia rheumatica, which morphed in to RA about 2 years ago. Unfortunately my inflammation levels are creeping up again, and am very stiff and in pain. I am also on 25mg methotrexate (2 years) and on 2000mg sulphasalazine (3 weeks). My bone density is ok but have thin skin, muscle wastage and bruising. I am hoping not to go back onto steroids, but how do you balance health with quality of life. At the moment I can hardly walk anywhere! Anne

[Hidden in reply to DrWhoFan]

I cant balance it either... I know how you feel. On one hand I can have steroids that make me feel like a spring chicken (almost) but give me so many complications that Im at the docs twice a week or not have them and be in horrible pain unable to get out of bed and when I do, I can only reach the damn toilet. Sigh....

[nettie4lyfe]

I use 10mg prednisone and I'm still swollen and still have pain. My GP wants me to up it to 20mg but I'm scared to do that. I tapered to 5mg in November but I was back to being in horrible pain so my GP gave me 10mg but wants me to use twice a day. I'm having insomnia, I get angry outburst, , bloating. I'm flaring again, and just may have to take 10mg twice a day. I love the energy I get but gosh the side effects are terrible. Waiting to see a new Rheumy in Jan. I use plaquenil, mobic, folbic.

[Hidden in reply to nettie4lyfe]

Im so sorry to hear this Nettie, it sounds like you need them too just in order to keep things in check and not be in pain 24/7. I hope you can sort out the dosage, just keep an eye on the side effects particularly if you do go to 20mg.

[Hidden]

Yes me! I was diagnosed with type two diabetes after having two steroid injections. I went on a low carb diet, and I changed to none diabetic. Since then I have eaten normally, and still been fine, until I had a steroid injection into my hip earlier this year, and wham, up the blood sugars went again. I have decided hat steroids are a o go for me from now on, but it did fix my hip, so I should ever say never.

Sorry. I just re read, and you were asking about people who had to take it. My story might be some help to someone, so I will leave it.

[Hidden in reply to Hidden]

MS I wanted to hear from all people especially like you who can trace the sugars back to the pred and still go back to a relatively normal level when they go off them. I have read that it doesnt always go back so I would like to know how many it has affected permanently. So far, every time we reduce I have to come back up in dosage due to the RA and OA flaring again so Ive only got to 3mg and although the sugars reduced, they didnt go back to anywhere near normal - 8-14mmol/l fasting. My reaction to carbs results in very high sugar spikes so am also on low carbs (30-50 per day cept for a few sneaky things over xmas ).

My problem is that the steroids have a huge effect on me both good and bad so Im not sure whether to experiment with them a bit longer or not until we find a substitute (ie the Leflunomide is new and might work but I need to down the pred dosage to find out).

[Hidden in reply to Hidden]

I ultra low carbed too. I was sticking to around 10 to 20 grams a day. The trouble is I am ultra addicted to them. So it was hard for me to maintain. Which is a real shame as I felt so much better eating like that, and lost weight too.

I've just started leflunomide as well. Fingers crossed it helps us both.

[Hidden in reply to Hidden]

Lately I have only lost 3kg in 4 weeks but Ive had to increase the steroids again and they are what makes me hungry. Also, insulin is well known to increase weight so Ive been told to lose anything at this point is good. Im going onto Byetta soon - they are injections taken with meals for Type 2 diabetics - and that should help to lose the weight.

I find prednisone is a blessing and a curse at the same time.

Sure hope the Leflunomide goes well for you too....

[earthwitch]

Steroids are absolutely wonderful meds used short term, but there is no "safe" dose for ongoing use, and no "safe" period of time you can take them without getting problems. My doctors generally say that no more than 20 mg a day for no more than two weeks out of every three months (or no more than 4 injections a year) is as safe as you can get, but its still not safe. Some people get away with less problems than others, but the more you take (dose, and length of time in total, because the effect adds up in your body) the more likely you are to end up with serious problems, of which adrenal crisis and osteoporosis as well as diabetes are the biggest. Some docs say that 5 mg or less a day won't cause problems with adrenals (because that doesn't shut off your adrenal glands), but I've known someone who only took 5 mg a day and still ended up in adrenal crisis. She is now working long term with an endocrinologist to swap to different forms of steroids and wean off extremely slowly, but so far after more than a year of trying its not working. I just checked risks of spinal steroid injections because I have been offered them, and was horrified to find that a single epidural injection can increase your fracture risk by 29%, with subsequent injections multiplying risk further. Steroids aren't the only treatment for inflammatory conditions. I think sometimes if they work for us, our doctors just let us keep taking them, instead of working harder to find other safer meds for long term use. We all hear about the "risks" of anti-tnfs, but in fact they are an enormous amount safer than steroids. So are the DMARDs (if you find ones you can tolerate) - mostly because you can be easily monitored for potential problems with them, whereas you can't monitor or predict what damage steroids are doing, until its too late. I would say that the message is that if you are needing steroids to function, then absolutely insist that your rheumatologist works a whole lot harder to find a combination of other meds that works for you - and if necessary offers you anti-tnfs. If you can't get off the steroids, then ask to be referred to an endocrinologist for advice.

(and I do take steroids myself - but only once took them for more than two weeks, and that was under direct supervision from a doctor who had me tapering under a strict schedule - whether my pain increased again or not)

[Hidden in reply to earthwitch]

HI earthwitch ... thx for the reply

I agree with all you said.

I dont just take steroids for RA only, I also take them because I have unstable asthma and spinal problems too. I am already under the care of an endocrinologist, ortho surgeon, and neurosurgeon who all want me to keep on a low lose of 7.5 - 10mg (and just increase when I have a specific problem or when I have surgery, which is quite often).

My rheumy agrees for me to stay on 5mg but she would rather I be off it altogether as she said my ESR and CRP are still high and dont change with the higher steroid dosage. 2 mths ago she did try to work on getting me off pred by changing my other meds (SSZ to Leflunomide) and now wants injection MTX instead of tabs. My GP had asked her to try an anti-tnf but so far she hasn't, she wanted to try this first.

Sorry you are having back problems too.... its hard to know what treatments to go with. Ive been having fusions, lami's, and problems with cysts/abcsesses etc for 26yrs. Unfortunately 2 yrs ago I had a long hard bout of 6 major spine surgeries in 6 mths and I was on dexamethazone which they think upset my endocrine system to the point it now will never go back to completely normal. I cant complain, it saved my life from septicaemia, deep wound infections and haematomas forming in the spine so I'd rather be here and shuffling along, than not here at all.

I didnt know there was that much increased risk of fracture with the injections but I would believe it... I hope you end up in the 98% who dont need surgery for it. I will say that the last lumbar steroid injection I had wasnt a good one ... it was with local anesthetic and numbed my leg TOTALLY - couldnt feel it at all for 3 days and I thought I would never walk again. Luckily, the feeling finally returned. They told me it was unusual for that to happen but I have my doubts as I found out later that the doctor had more than his share of patients experiencing it. It was my first and last time with that doctor! So take care if u r considering it, research the doc as well as the procedure.

Thx again for the info...

[Juliette64]

I just got a prrscription for predisone for six days only . im not

thrilled at the idea, but I have a bad flare up now. I will let you know how it makes me feel.

[Terrpist]

I had a epidural in my back and had a semi psychotic two weeks,I felt not myself and in a fog for two weeks scared to do it again