Hi can anyone help ,I am so worried about still taking steriods as I have been diagnosed with osteoporosis, going back to January last year ,I was diagnosed with osteoarthritis in hips,this seemed to kick start rheaumatiod arthritis, I was put on Hydroxychloroquine which did help,a couple of months later fratured my spine in three place had dexa scan showed I had osteoporosis, then I got chest infection that wouldn't clear on Doxycycline for twelve weeks,had to stop takin Hydroxychloroquine, and was, put back on steriod ,although I am back on my fourth day of Hydroxychloroquine I am still on 20mgs of steriod ,I haven't started my treatment for osteoporosis yet ,and as they think it was the steriods that give me osteoporosis (taking plenty for chest over the years) I am so worried about taking all these steriods ,when I had dexa scan they said I had 50 50 chance of another frature ,I have tried coming of the steriods,but find the pain to much ,I would like to know other people thoughts on taking steriod when the cause of my osteoporosis was the cause of them ,oh dear I am a awkward one
Prednisalone : Hi can anyone help ,I am so worried... - NRAS
Prednisalone
what are your doctors telling you about taking pred? Are they saying it’s ok for you to take it? I think you need to have a discussion with them about it so they can reassure you. Hopefully once hydroxy starts to work in a few months you will be able to reduce down your pred and hopefully stop it. There are other meds they can give you other than pred so have that discussion with them.
Thank you Kitty,are they other meds things like diclofenic and ibuprofen
There are lots of meds including anti inflammatories, talk to your rheumy and he can advise you. Also if you have a look at the NRAS publication on meds it’ll show you there are many more you can try if hydroxy doesn’t do enough. Of course if your pain is from OA then RA meds won’t do anything for that but fingers crossed you start to get some relief soon
I have been told that I now have a lot of issues from steroids from taking so many in Past 5 years and have oa and osteoporosis too.
For me I have tried to stop but the pain too much so I have taken a decision that I prefer to be on them and reduce to 5mg when I can and up when I have too.
I use the words of my consultant medication vs conditions vs side effects vs quality of life so for me quality of life is better on pred.
Have a chat to your GP discuss concerns but they don’t have to live with the pain🥰
Hi ALice, I am like you,have osteoprosis shown on dexta scan,have been on 5mg for about 6 years, cant take the biologicals but agree with Deeb, take the lowest and when the pain in better and up the doze of Prednislone when things get worse.
Hopefully when Hydroxychloroquine starts working I will start dropping steriods ,sounds like you are welsh like me
Hi Alice, lOO per cent and very proud of it.
Have you had a look at the Bone Health site on Healthunlocked to see what people on there have to say about osteoporosis and steroids? It’s very difficult isn’t it when you kind of need to take them yet you know they are probably not doing other parts of your body any good. I’ve got osteoporosis too and I’ve found doctors all seem to treat ‘their’ part of your body without worrying - or in my case, even mentioning - how the treatment might affect other parts of you. Good luck with it all.
Yes you are so right different specialist different meds ,it's like as if we are not being treated as a whole
I take a very different approach to most. I’ve been on steroids for years, initially for polymyalgia and GCA, for which steroids are the only treatment. Unfortunately after being on them 3-4 weeks, they can switch off your HPA axis, which is responsible for producing your own natural cortisol. I have been left with severe adrenal insufficiency due to steroids. It resulted in me having a severe stroke, as a result of an adrenal crisis, which is how I was diagnosed with adrenal insufficiency. Any stress, good or bad, can have me deteriorating rapidly, with initially nausea, headache, lightheadedness. It can then progress to slurred speech, severe hypotension and collapse, if I don’t take steroids immediately. Sometimes that can be tablets, a lot of the time I need an intramuscular injection, which family have been trained to use, if I’m unable to do myself. I have to pre plan every day, and even then a simple argument, or a skid in my car has triggered the symptoms. I wake every morning with ‘flat batteries’ and it takes 2hrs for my steroids to kick in, and make me feel the way most folk feel when they wake. The highest my cortisol has been in the morning is 30, when it should be >450.
So I always urge people to look for alternatives, if they are available. Unfortunately in my case it wasn’t an option. I have a few friends who developed AI from just a few steroid injections or using asthma inhalers. Unfortunately there is no way of predicting who is at risk.
Over the 11yrs I’ve now been on steroids, I went from being at T score of -1 when I started, to becoming osteopenic at -2.3. I was on Alendronic acid for 18 months, in that time I had identical stress fractures in both ankles, a year apart. This was attributed to the AA so it was stopped. Using diet and exercise alone I have reversed my Osteopenia to a score of -1.3. So it is possible to improve your T score whilst on steroids. I don’t write this to scare you, its just Drs never mention adrenal insufficiency being a side effect. My adrenals are 90% atrophied and I now need steroids, and to carry an emergency injection kit for life. 🤗
I've been on oral prednisolone for 5+ years, despite JAKs, leflunomide and diclofenac acid, I can't do without them. Last year I had a spontaneous fracture of my hip probably due to the prednisolone. I had a hip replacement.
A few weeks after the hip replacement I was given an IV infusion of Zoledronic Acid to try and protect my bones. I'll have another Zoledronic Acid infusion next year.
Given my time again I would still take the oral prednisolone, as they have given me a quality of life over the past 5+ years that I would not have otherwise had.
Being constantly inflammed for 5 + plus years may have led to heart disease and other issues associated with RA, without having the benefits of reduced inflammation due to prednisolone
Everything has side effects.
Thank you for reply ,I will keep taking steriods ,and hopefully the hydroxychloroquine will start kicking in in a few weeks ,it is either this or pain
Hi Mmrr, how did you get on with the zolendronic acid infusion? I'm due to have my first next week, and am a bit worried about the side effects. I know they have to warn you of every possible reaction, but it sounds like I may have to plan for 2 or 3 days of feeling a bit rubbish... also do you have any way of knowing it's working?!
I did not get on too well with this infusion,caused neck pain each time I had it,so now switched to Prolia injection every 6 months at g.p. Under shared care with hospital.Had no side effects at all with this injection.
With the infusion advice seems to be,which I did not know before I went,take couple of paracetamol before you go,drink lots of water,even during infusion,and ask them to do it as slowly as possible,which they should do,anyway.Hope this advice is o.k. to give,please google it and it will confirm!Good luck.
Thanks for the advice! I'll go armed with paracetamol and a big bottle of water...
Just a quick update! I followed everyone's advice and drank plenty. Plus paracetamol. They wouldn't slow the infusion down so it was 15 mins plus a flush. I was fine afterwards - just a wee bit tired. Then 48 hours later, bam! stiff, painful neck. The pain is unbelievable. I've been on strong painkillers, used hot and cold packs, ibuprofen gel, tiger balm neck cream, ultrasound and TENS - you name it! Just wondering how long this will go on for. Its been 3.5 days so far. Also interested to know about Prolia - you said you were fine with it, but isn't it the same class of drug? I wonder whether next year's infusion might not cause so much pain? I was told you must not miss a 6 monthly injection as you can get rebound fractures, so there are downsides to that too. It's so difficult to know what to do for the best!
Hi
I am so sorry you are having the awful neck pain,I remember it well.They assured me it could not possibly be the infusion,but I was very sceptical.I had to take diclofenac tablets until it eased,which took a few weeks.I had the next infusion a year later,and the same thing happened on day 3 ,it could not have been a coincidence,as my neck had been ok.in between.This time I saw a neck man privately at The Rivers near me ,he said it was inflammation between 4 and 5 bones in neck area,and went in for a day and had a steroid injection into my spine under general anaesthetic,and it has been fine ever since.I refused point blank to have another infusion,and have been having the 6 monthly Prolia injection at g.p. for last 2 years.I had it on Friday,took a second , just like flu jab,and,as this is my 3 rd one have no no ill effects at all.Having a Dexa Scan on 23rd March to see how bone density is going and will let you know results.I don’t know what is in the injection but only know no neck pain at all since starting it.By the way,my infusions were over an hour,and in my opinion 15 minutes is way too fast,that was at Barnet Hospital.I am 80 this year and never had a fracture,although been on preds for 23 years,do my garden and decorating etc,so hope this continues!! Xx
Wow, you're doing very well - that's reassuring! I guess there's no way of knowing for sure whether the neck reaction is caused by the infusion until you go for it a second time. I've had a sore neck before, but never this painful! Tonight I'm in slightly less agony. It seems sleeping on my back last night with my head wedged in my pillow provided some relief and I got some good sleep. I'm hoping it'll slowly get better day by day. Everything crossed... at least I don't have to make a decision until next Feb about whether to go for the infusion again. Meanwhile, I'll report my symptoms to my consultant when I see him on Tuesday and see what he says. I'll be interested to hear about the results of your next Dexa scan and how Prolia has worked for you!
Apologies to Mmrr for jumping in here, it’s just I asked the very same question as you (WillowsMother) back in October. Kind people advised me to drink lots of water before, during and after my ZA infusion and to ask for it to be given as slowly as possible. I followed their advice (though the hospital said they always give at slowest speed but that it only takes 30 minutes, that was a bit quicker than I was expecting). I was fine, drove myself (40 mins each way) there and back, felt a bit fluey by the end of the 2nd day which continued for a day or so but I rested up and really it was only one day that I rested in bed for a while, I would have been capable of a normal day if needed. I did find though that a couple of times in the next few days I started to feel a bit “off” but realised I hadn’t drunk much water in the hours before so had a good drink and felt better. Next time I’ll know to keep up the fluids for a few days afterwards. My infusion was in November and I have had no other effects whatsoever since then. I have no idea whether it’s working, I suspect a dexa will happen in a few years. The consultant told me I’d need 6 years treatment not the usual 3. Good luck!
Edit: I was reading this post because I also have asthma and recently been on Pred plus on long-term steroid inhalers, and have inflammatory spondylitis (form of RA), agree each Dr looks at their own area.
Thank you for the advice. I already drink plenty because of another drug I'm taking... but I'll make sure to keep it up before, during and after the infusion next week. The nurses at the hospital said their standard speed is 15 minutes for ZA - I'll ask if they can go slower though. Am prepared to feel a bit rough afterwards (at least it's only once a year!), but hoping for the best.
I had absolutely no reaction at all. It was all over in 20 mins. I was really pleased as I have had so many reactions to meds.
That’s great to know, thanks!
Hi Mmrr, how did you get on with the infusion,any side effects.I am waiting to have my first, but alas am stuck with ongoin dental issues so must bide my time.
No problems at all, it was all over in 20 mins. No side effects.
If pred is the only thing managing your pain at the minute you need it, the last thing you need is to be sore and fal and injure yourself. This is just a temporary means to an end.
Osteoporosis is a multifactorial disease process. The pred you have taken in the past will have contributed to it but it likely isn't the only reason you have it now.
I don't think the Drs would give them to you if they felt the risks were too high.
I've been on pre for over six years and am unlikely to ever get off it but I've accepted that. I'm worried about side effects and trying to take as few as possible but at the minute I need them so I'm taking them.
Fair comment, thank you.
I’ve been on steroids constantly for 22 years.
My maintenance dose is 7.5mg.
I’m glad to be on them as they have kept me alive.
I’m monitored regularly for my bone density.
While I’m my own advocate, I have excellent consultant care at The Royal Free, Royal Brompton and The Birmingham WE.
If you have ayfears or concerns plytalk to your nurse specialist or email your consultant secretary.
Like you I have been on steroids for 23 years now,and have a maintenance dose of 5 mg.Am now on JAK meds for last year which are wonderful,and recently gradually reduced preds to 3 mg daily.Will not even try to go any lower after so long as adrenal glands may have stopped working!I have 6 monthly Prolia injections for osteoporosis at G.P instead of having to go to Chase Farm Hospital,also under Royal Free banner ,and have no side effects from them.Touch wood,although 80,have never broken a bone,so hope to continue that!Pain free at last thanks to JAK tablet once a day,and no injections.Royal Free have been brilliant for funding,first for biologics,which did not work,and now for JAKs.
I’m glad you are being looked after.
I am also on biologics without funding issues, all hospitals working together.
I have had a stress fracture but I doubt from the steroids. They have literally saved my life and I know I cannot reduce them x
Best wishes
Hi, how would you know appart from feeling really low and tied, that your adrenals are not up to much, thank you.
They test your adrenal function with an Acth blood test. Mine are borderline
Sorry to be so late in replying.I understand,as you say fatigue,also weight loss,aching muscles and also sometimes increased thirst.I don’t have any of these symptoms on 5mg or even down to 3mg,but not going to push my luck.Seeing rheumy tomorrow for 6 month revue so will see if he is o.k. with my current regime of JAK and 5mg preds.Been with him 23 years so do trust him to know what is best for me!
hi Alice
I have been taking 5mg Steroid daily for 6yrs. I honestly can't do without them, I tried to reduce down, only got to 3mg. The pain came back with a vengeance. I spoke with my rheumatologist he agreed to keep me on 5mg. I have always believed the steroids mask how much pain RA sufferers are actually in. I would rather be able to have a bit quality of life than not been able to get out of bed, which was the case when I reduced. Hope you get sorted soon and take carec
I was reading some of the replies to your query , I still think you need to discuss with your doctor or consultant asap they should bexable to explain tonyou what's happen and ebay any fears for you. One reply about Cortisol sounds very interesting Unfortunately after being on them 3-4 weeks, they can switch off your HPA axis, which is responsible for producing your own natural cortisol. I am wondering if cortisol supplement might help try asking your doctor, good luck.
Hi Alice, I was put on prednisalone, when I started with the RA about 14 years ago. I couldn't handle 12.5mg and suffered quite badly with inter cranial pressure, they were able to reduce it to 7.5 and everything was much better. I did try to reduce it further with the support of my rhuemy team, but almost immediately my feet and ankles swelled up. I've been on 7.5mg for years and have accepted that that's the lowest my body can go. Like others have said I think you need to have a word with your gp, or better still your rheumy team.
Hi Alice I have been on 5mg Pred for about 12 years and they have given me quality of life with little severe pain. I do however worry about adrenal insufficiency as this was mentioned in a letter re vaccs from my GP. Nobody seems to want to discuss this with me , hopefully seeing rheumatologist soon but been feeling pretty crap recently so worry if my adrenal gland struggling. |My cortisol level a few months ago was 46 but like the other replies I don't regret taking them as we all know how bad RA pain can be. Best of luck x
Hi Alice70,I can relate to your thoughts on Prednisolone (steroid tablets). I have been on this medication for over 9 years now.
I started off on 60mg, now sitting at 7.5mg.
My latest DEXA Scan showed Osteoporosis in both hips and lower spine.
Without doubt bring on this Medication for such a long time has caused me these health issues. Although, with my disease, it has helped me greatly cope with the pain and other issues.
There is good and bad in all meds. It is basically down to what quality of life you have.
All going well, you maybe put onto a short course of Prednisolone. Then you will be slowly weaned off steroids.
I hope you receive good advice from your Rheumatologist, and a treatment plan is developed for your needs.
Good Luck x
Hi again, have you or anyone else had side effects with the red colour pred 5mg anti gastric, just a thought. Thank you.
Hi
I have been on preds for 23 years and take 5mg enteric coated daily.I have had no gastric problems with them at all,and do not take omeprazole etc as don’t like the sound of them.I am going to try and reduce my steroids by 1 mg monthly as advised by rheumy as JAK now keeping me better than for many years,miracle drug for me.Have asked few days ago if I can have enteric coated 1mg tablets as don’t want to take 4 regular preds every day,as will probably then have to start omeprazole.Waiting for reply,but as my pharmacist says they are not too expensive hope it will be o.k.So,again,no probs for me on enteric coated .
Hydroxychloroquine
