I have been lucky/unlucky when it comes to treatment of my RD. In the past 4 years i have been on all the treatments that are available to me (can't take MTX and I'm Sero Negative).
I have been on 4 Bio's with results ranging from 'completely useless to very, very effective'. When my last Bio, Abatacept, showed signs of not working back in Oct last year my Consultant, the lovely Dr Armstrong, told me there was nothing new for me..... I was desolate to be honest.
I had an appointment with him on Tuesday and he confirmed his original diagnosis, no more Bio's for me. He did say there was something in the pipe line......he told me the name but as it sounded like it had 37 syllabil's I can't pass the name on to you. He said it would be some time before it would be available to me so no matter.
He has put me on 7.5mg of steroids for 6 weeks and then hopefully reducing to 2.0mg. I really, really don't want to go on this medication. I have had a battle with my weight since i was a teenager, I'm now 64!. Weight gain brings on Depression in me and I don't just mean feeling a bit down I mean a Depression where I don't go out of the door. I hide from contact with others, shop in line for almost everything.....this leads to all sort of behaviour....
What I want to know is this.....what would happen if I just stayed on strong pain relief and didn't take the steroids? He has put me on two different vitamins to help my bones and is organising a scan to test for ostioperousis (sorry about the spelling....spel check is useless on this site). He looks after me well and I told him about my concerns with weight gain......please would someone on here tell me its alright for me NOT to take the steroids......please don't think me a silly, uneducated woman, I'm not like that at all, really.
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Jeanabelle60
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Hello. No can make you take any medication I guess but I always think that the doctors know what they are talking about (mostly). If you are really dead set against taking steroids maybe you could suggest you get some strong pain relief with a tummy protector, after all, Steroids are only a pain relief too..
I guess its the same for all of us in as much we are all stuck between the devil and deep blue sea with these decisions..With you it's either weight gain and depression or more pain. Which pain relief have you tried so far?
I am sorry you are in this position but It sounds like you have handled the disease well up to now. lets hope this new medication becomes available to you soon.
Thank you soooooooo much, you answered the question I went all around the houses to ask! Are steroids simply for painn relief? Do they have any other function?
Hi yes steroids are pain relief AND anti inflammatory. In small doses they are unlikely to make you gain weight, only in larger doses. They have little other use for RA but a lot of people rely on them. Those little magical pills are a life saver for some (me) when I have a sudden unbearable flare, I 'knock it on the head' with a short sharp attack with them. The rest of the time I have other forms of attack depending on how bad the pain is, on the whole I am generally well managed with Embrel and sulfasalazine but on bad days forms of attack are, paracetamol, naproxen (with tum protector every time) then steroids for a last resort
Tessthomy, I can't get my brain to settle sinc I saw my Dr on Tuesday last. This is what I'm thinking.......stay on my Tramadol 100/200mg to see me throught the pain. 200mg help when the pain is quite bad. Then if they don't work I'll pop a few steroids and stop again when the pain has reduced. They do work resonably quick don't they? Ifu2 also said that you usually don't put on weight in small doses too. Are the just as effective if you just take them when you need them? Sorry for all the questions. I had to have teeth removed last week (I have RD in my jaw and its causing all sort of problems as my jaw is gradually closing, for the second time) and my dentist told me not to take them for a week or so after the extractions. Thank you for your encouraging reply. I'm demeting myself already and I haven't even taken any yet. I am quite good at tolerating pain now so as long as I can manage it myself without the dreaded steroids I should be alright. Thanks again.
Hi again sorry for delayed responses! I do hope you're not agonising too much over it all. Yes I think a short sharp burst of steroids over a few days for a bad flare a) won't cause weight gain and b) works pretty quickly. Depending on how bad the flare is I take 1 or 2 in the morning (with a tummy protector) for 2 or 3 days. This should tackle the pain but not gain weight, but always consult your doctor before taking.
This was the advice of my own gp when I get a flare. She said to take them as and when needed but not everyday. So I always have them in. They are marvellous for inflamation and pain but you really do have to be respected and not abused. if you are finding you are taking them too much then it's time for a drug review and a visit to your consultant.
Hi Jeanabelle60, What a sorry state. I have a little bit of hopefully good news. You generally, repeat generally, don't put on weight with low dosage steroids. The magic dosage of around 7.5mg is when your own immune system starts working again. This is a ball park figure and everyone is different but it is generally correct. I was on 40mg steroid and piled on weight. When I got down to 15mg the weight began to go, (very slowly). I am now on 10mg and not putting any weight on and I have got down to my starting weight, when it all began 4 years ago.
We hear a lot of reports about steroids, mostly bad, but they do help. They manage pain for me and I'm sure thousands of others. Also my sister has RD and was put on 7.5gm steroids 6 months ago. She has not had any weight gain. I hope things go well for you and that this has shed a little bit of sunlight in your life. lfu2
Thanks for your reply. You make the same point that testhomy does: that steroids are for pain relief and serve no other purpose. What about inflimation? Do they reduce inflamation? Its the inflimation that causesthe pain isn't it? Oh god, all these questions.
Jeanabelle60 , Sorry I should have said.... yes steroids also control inflammation...
"Prednisolone is a corticosteroid. Prednisolone works by preventing or reducing inflammation. It is used to treat a number of conditions that are characterised by excessive inflammation.
Prednisolone suppresses the immune system and so can be used to treat autoimmune diseases"... from NHS Choices.
You are absolutely right.... I never thought about it before... steroids reduce inflammation which in turn reduces the pain. Most of us get by on steroids and pain relief.... just work out what is best for you and use it. Tramadol is a good painkiller, (if there is such a thing), I take it myself.
I should have stated that I am on 100/200mg of Tramadol per day. This keeps the pain 'in the distance' if you know what I mean. Sorry for not meentioning this in my original post.
Ifu2, thanks so much. 7.5mg is what I'm meant to start with for 6 weeks and then reduced to 2.0mg if my bloods allow. If you read the reply above that I sent to Tessthomy you will see what I'm thinking......what do you think of my plan? Othere have also said that 7.5 is a low dose and that I shoudn't be too concerned. All my life I put on weight so easily. When I was first struck down with RD I lost so much weight. When I started treatment I gradually put some back on and now I'm at a weight that I'm satisfied with and have managed to maintain it too.Its just that I know what I suffered in the past and the amount of self loathing I put myself through. I have very good pain relief though if I decide nt to take the steroids. Thanks so much for your reply, it has been a great help. XX
If your plan works for you, then it is fine. The target is a reduction of pain.... preferably pain free. I know some of us only take steroids when required, and if that works for you ...brilliant ..... that is the important thing.
Concern for weight is huge that unfortunately, consultants don't seem to be bothered by (they are aware of the problem but they probably wouldn't quite understand the problem being so huge). I have seen marital breakdowns due to steroid use/weight gain. My major pet hate for these medications are : insomnia, hair loss and weight gain. Oddly, I do not see any medications which would not cause at least one of these. I agree. If you have high dose steroid, you do gain weight rapidly. Unfortunately, there are people who are on the high dose therapy.
If I decide not to take them this will be the first time I have went against my lovely Dr Armstrong's advice. In fact its the first time I ever wnet against any Dr's advice! Thanks for your reply......you know what I'm thinking, I'm going to ring my Rheumy nurse, who is an angel, I'm going to talk to her about it. She and I have talked about weight problems before, just sort of girlie chit chat but I think she will be more understanding, not that the lovely Dr Armstrong isn't ....but you know what I mean don't you?
Hi, I have been on Biologic's and waiting to get the all clear to start on Tocilizumab injections. Could that be the biologic that you were not sure what it was called, it is fairly new. Depending on the area you live in depends how available it is in either infusion done at the hospital or by injections done at home.
I understand how you feel about weight gain, I was taking 20mg per day and came down to 12.5mg until my consultant increased the dose to 15mg and stay on that dose until I have been on the Toci for at least
12 weeks. I struggle with my weight without taking steroids, but I was just starting to lose some weight at 12.5mg. I had no choice about taking the steroids as I wouldn't have been able to get out of bed in the morning otherwise.
Good luck with your medications and it is best to listen to your GP or Rheumy Consultanton, we are unable to give advise on medications as we are all different and taking various medications. Take care. S
Hello Angel, not I have been on Tociliamab and Humire, Embrel and Abatacept. They are the only bio's I can tolerate. This drug Dr armstrong was telling me about isn't available yet. I should haave had him write it down for me. You are right about them knowing more that we do.......but.......going up two sizes and the depression and self loathing that comes with it......its not everyone who undderstnds what that is like. Thanks again Angel....your an Angel!!!! XXX
Don't want to tread on toes but I have lost weight on steroids was on 20mg pred for several months and found it hard to get off. But I felt so ill and found it so hard to get on and off the loo that it was an inducement to eat less. So on low doses and without exercise it is possible
Lol....I think we all know that thats like....actually I've been thiking about getting a new toilet in, one of those that are higher up and makes getting down so much easier!
Yes. I got a plastic booster seat like you would for kids! Only for people like me. Handy in that if you're going on holiday by car you can bring it along. And not too expensive either
I can understand exactly where you are coming from. It depends on how things progress. My thinking is that the inflammation causes some of the pain and the steroids help with the inflammation. Trouble with this disease it changes all the time and how you feel this week can be totally different next week. Perhaps get the prescription and either wait and see for a while or see whether slightly lower is enough as long as you are honest with your GP/Rheumy when you see them as to what you have/are taking. Is your GP approachable and you could talk it through with him/her. Farm
I, too, am seronegative with my RD. I've been through MTX, Plaquenil, Arava, and now inject Humira, which is only helping so so. Steroids has always been the go to med for my Rheumy doc to prescribe when I have an unbearable flare. They definitely help to reduce inflammation, which is what causes the pain in our joints.
I have some trepidation about taking steroids as well, even though it is the only thing that has brought relief in a quick way. Not only do they cause me to gain weight, but long term use can cause damage to organs and bones. And steroids, along with the other meds for RD have resulted in some wayward blood test results that show my liver is slightly out of wack and my bone marrow is weak. For those reasons, I decided to explore other ways besides medications to try to get back the control over my body that I once had.
I drastically changed my diet to exclude all dairy, manufactured sugars, wheat products like breads and pasta, coffee, and red meat. I am determined not have to take steroids again or add any more RD medications if I can help it. I also take numerous supplements and visit an acupuncturist several times a month. All these things have helped tremendously.
Don't think that I am advocating that you stop all of your prescriptions! I still use Humira. But I have been able to reduce or stop most of my other medications and am anxiously awaiting another blood test to see if this is paying off.
Hi, I completely understand your reticence about steroids. I was on steroids for 20 years and there is no question that they have damaged me. I'm also sero-neg, Anti-CCP neg and have the HLAB27 Ank Spond gene (my father had that). However, I am curious about what you said in regard to biologics. I am on my 5th Biologic, Abatacept, and not sure that it is working sufficiently at the moment. I did very well for about 8 years on Adalimumab (Humira), but switched to another TNF because it wasn't controlling the uveitis in my eyes. Now Abatacept seems to be controlling the uveitis but not my joints! You can't win can you?!
There are 8 biologics available, although Rituximab is less appropriate for sero-negs like us, but have you been on or considered Tocilizumab? Whilst, I would not want to go back onto oral steroids, pain killers alone will not control your disease and it will progress with the consequent damage which is irreversible. There are indeed other things in the pipleline which may well be helpful for patients like us who are resistent to many treatments, so it's how best to manage your disease in the meantime.
A good and honest conversation with your consultant and team is needed and it sounds like you have a very good relationship with them which is great. They need to take your concerns into account such as weight gain fear, but equally, you need to listen to their advice re treatment options too. Not knowing your medical history or reason for 'no more biologics' for you after only 4, I would definitely query why that is if you haven't had Toci yet. Have you also talked about steroid injections either into affected joints or intra-muscular?
Hello Ailsa, thanks for your reply. I have had so many replies on this subject. Lots of good people offering me advice and well wishes. Some of these replies have helped me to come to a decision about what to do next. I think I'm going to have to try them as this disease has run through me in a very short space of time. If I were to allow it to do that again any quality of life I had would never return again.
As for the Bio's Humira was my first. It worked very suddenly and very well for about 2 months and then I had a bout of projectile vomiting so I was taken off it immediatly. I was put in Embrel next and came out in a complete body rash and the skin around the injection site became so enflamed to I was taken off it too. I was then put on Tocibamub that did nothing for me at all so I was then taken off that drug too. I was the put on Abatacept which was my 'wonder drug'. I had my life back and except the joint damage I was 100% better than I had been for the past 2 and a half years previous. Then in October last year I noticed some of my old pain returning and by December I had new pain in two locations, heels and right jaw. When I was put on Abatacept I was told that this was the last drug available to me at present so I know I was at the end of the road as far as Bio's are concerned.
Did you have weight problems with steroids? My lovely Dr Armstrong is aware that i really don't want to go one them but he felt they are the best option, for me, at preesent. I trust him implicitally and will abide by what he thinks is best.....for now! I am to start on 7.5mg for 6 weeks and then hopefully that can be reduced to 2.0mg then, as I said hopefully! I did ask him about steroid injections periodically but he said that wouldn't do what I needed.
He did tell me that there was something coming along but as I said on one of my replies it sounded like it had 37 syllables in the title!!!!! He laughed when I asked him to repeat the name and told me to 'keep up Jean'.......he is lovely as are all of my Rheumy team. I'm actually going to speak to see my equally lovely Rheumy nurse Bronagh. She is the type of woman that you can discusse almost anything with and she also doesn't do 'medicial speak' which helps when your a bit distressed.
I want to thank yu for taking the time to contact me as there are some real horror stories and fotos on the internet with reguards to steroid use, I'm very sorry that I looked at them. i know they are good drugs as far as imflamation is concerned but that they have awful side effects too. I'll think some more about it but I think I will take them as it seems 7.5 is a small dose and shouldn't do too much to me with regard to weight gain......after that I'll get my brother to cross my fingers for me!!!
Thanks again.
Jean
It is a hard fact that long-term steroid use would be seriously detrimental and damaging. It's a hard fact nobody would deny but consultants would keep prescribing steroid because it works (a major priority) at the same time, leaving the serious consequences of this drug (obesity, hypertension, osteoporosis etc etc which can eventually kill you if disease wouldn't) as a secondary issue (a trade off, if you like) to the patient. I agree, not a single drug will sort out all the problems and side effects / toxicity would also be an issue in all drugs (again, a trade off). It is certain that a little more "smarter" drugs ought to be formulated so that we wouldn't have to go through so many different drugs and problems associated with these before we get to find the one which works with minimum side effects. If you have a weight issue, steroid is not going to make you "happy". Sometimes, you just have to decide what works for you.
I'm late to this Jean, taken off my carers hat & put my RD on back on just now. You've had lots of good advice & I'm with those who say a short course of low dose steroids shouldn't affect you as you fear. I take low dose deflazacort on a long term basis as it keeps me level & I have no issues with it. It's written up that doses lower than 15mg rarely cause any adverse effects but do successfully reduce inflammation & in turn pain.
Dr Armstrong is doing his best to help you where he can as there are so few options just now, well none really, & I'm sure aware how steroids can affect you & considered this when prescribing this dose. If you're still unsure I would ask the advice of your GP who'll probably say something along the lines of he will not want you to become reliant on strong pain relief which will only mask the real problem, inflammation & in turn further damage, Dr Armstrong's fear. The steroids will bring that down & ease your pain over a short period.
I understand how real your fear is but really & truly the likelihood of your them being realised are more than likely to be unfounded at low dose. Of course there are no guarantees but it's true that steroids have the ability to increase appetite hence the weight gain but if you're aware of that & still fear putting on weight you can tackle it by a slight change in diet whilst you're taking this short course by eating low carb, Mediterranean type foods & your normal serving size.
I hope my thoughts help Jean & the DEXA scan goes swimmingly & shows your levels are on the low side so you have no added problems to contend with. x
Have you thought of asking for a steroid injection! I can't take oral steroids - I get really bad side effects - but something like Depomedrone takes the pain away for about a month. I find this brief relief from pain very therapeutic & it seems that for a while afterwards Naproxen seems to have more effect.
Guess we are all different ....but it works for me.
I am newly diagnosed and saw my Rheumy privately. He put me on reducing steroids he did say it would be for 6 weeks , when I saw him next for prescription he said 8 weeks reducing. I knew nothing about RA or Steroid treatment was a good girl and took these terrible pills. I have been off them for 18 weeks and have just had a CT scan because steroids ulcerated my windpipe , stomach, Colon etc. this is very painful and still have Explosive diaarheo.
Hello Saskia, you have had an awful time haven't you. I'm like you in that I always be 'a good girl' and do what the Dr says......but, when it came to steroids I stalled and then said no. I still haven't opened the packet of tabs and am doing alright, good days and bad days, just like everyone else with this disease. Having said that my 'bad times' are certianally alot more painfull. I have been keeping this under control with Tramadol and Paracetamol.......so far I'm grand and just waiting until something else to become available that I can tolerate.......all the very best luv. Jean
'Sero neg' or 'seronegative' basically means that people are negative for proteins commonly found in the blood of people with RA. One of these proteins is called 'rheumatoid factor' (RF), so if you are positive for RF you are seropositive and if you are negative for it you are seronegative. Most are seropositive and some who are negative when first tested might become positive further down the line, though some are never positive for it. This can make diagnosis tricky, which is why they don't go on any single blood test alone, but also other factors such as scans, symptoms and what the other blood tests show. Overall, those who are seronegative tend to have the condition less aggressively than those who are positive, though this is not always the case.
If you want any more detail, this article may be of interest:
Saskia, tell me about your experience so far, where do you live? Seems like you are not getting great care if you don't have a Rheumatology team looking after you. What medications are you on and how much? How long ago were you diagnoised? Keep on this site and ask as many questions as you need to. There are many on here who know a great deal about this disease and are only too happy to help and advise. I was diagnoised 4 years ago and unfortunatly it hasn't been easy going but I have had outstanding care from my team who are at the end of the fone if I should need help. Keep in touch Sashia. XX
Hello , I live in North West England. I had a fall in May 2013 ,broke my collarbone un-diagnosed until much later. I severely injured Hands, Wrists Knees and Ankles . Knocked out Front teeth and deep cut under Chin. Went to hospital no X rays just superglue to bleeding cut. From then on frequent visits to GP intermittent Swollen and very painful Fingers Wrists and Feet. In August 2014 I Paid to see Rheumatologist and he did bloods which show R.A. I have had no treatment since Steroids. I have Rheumy appointment end of April.
You poor thing, that was an awful fall you had. Firstly I think you should write a post so that others can comment on your history and where you should be going next, this all sounds very strange from a Rheumatoid point of view. Personally I've never heard of RD as a result of trauma but thats not to say it doesn't happen. As for your GP he/she is very slack to put it mildly in not refereing you to someone who specialises in bone injuries. With on going pain in joints and swelling you should have been refered to someone to start investigating excatly what was going on with your body. At least the Rhumatoligist you had to pay to see gave you a long awaited diagnoises of Rhumatoid Disease. As for treatment you should have been put on Methatraxate at least from the beginning. Seems to me that all of you you have not been very well treated at all. . There are loads of drugs available now RD sufferers. When you see your Rheumatoligist insist that you are put on a drug to limit the progression of your disease. Write a list of the questions you have for the Dr and take it with you so that you don't forget. Also take someone with you as sometimes there is so much information and what you miss someone else will hear. Please post your story so you will get much more needed information that you have not been told about. Also have a look at the k the links on this site, it will tell you so much more than I can. Please come back to me and let me know how you got on at your appointment. All the very best Saskia. XX
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