Good morning everyone. I'm experiencing some difficulties with my steroid meds. I'm only on 7.5 Prednisolone and I'm sounding off walls, my eyes pop open at 6.00 every morning and I could eat for Ireland my appetite is so vigorous. I have to say though that I am almost completely pain free, my wee bungalow has never been cleaner and the garden is in perfect order.........but.......I feel like I'm plugged into the national grid.......
I saw the lovely Bronagh on Tuesday there just past and she said that if I hadn't approached her that she would have been s Ning for me to come in anyhow to talk about weaning off the Prednisolone as I've been on it now for well over a year and in her opinion that is long enough......all sounds perfectly reasonable but my problem is that there isn't any alternative available for me that I can tolerate. Been through MTX and everything in between including 5 Bio's.
I'm m seeing my loved Rheumy Consultant Dr Armstrong soon and there are only two treatments on offer to me, one is the ancient remedy to f Gld injections and the other I don't remember, begins with a C but that all I remember.
I was just after talking to my GP on the fone there now and he said it doesn't sound great for me. I was diagnosed 6 years ago and have been on a sort of roller coaster with regards to my pain/pain relief, like most of us really. I be amazed when I hear of sufferers being given MTX and they just go back to normal or near normal life. Don't get me wrong I'm am very, very happy for them and the very best of luck to them. For me unfortunately it hasn't been so straight forward. I'm sero negative by the way.
Just thought I'd write down my thoughts as I'm not going to be in a great place if the 'gold' doesn't work. I can still remember my early first year and a half and it really was a very very dark place indeed and I don't want to go back there. Unfortunately my wishing ng isn't going to do much for blatant reality.
I told Bronagh that I was booked to go on a,cruise in September, my first holiday since being diagnosed (planned and booked while manic on steroids....I had visions of zooming down water slides!). She told me to come back to see her before I go and she would give me a steroid injection to see me through my holiday. I told her about how much I was looking forward to the water slides and she laughed and told me she would do whatever she could to get me up the steps to the slide.......god bless the NHS and my darlin Bronagh.
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Jeanabelle60
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I ask about the gold injection and iwas told had to go to hospital weekly and its a old method,i said the old ways are sometimes better it when straight over her head hope you get sorted soon
I had gold injections between my two sets of children. Around 1992 - 99. I cannot remember frequency and much more about it except it was beginning to loose its efficiency towards the end. It was talked about re-visiting it when I was struggling to find something to work 2 years ago. Not much help sorry. Farm
Farm your the first I've heard from who actually had the treatment, so any comment is appreciated. At the minute I'm struggling as I was actually looking to have the steroids increased as a lot of my pain has returned. You jus never know with this disease do you? Thanks agin for the info. By the way did you have any side effects from the 'gold'?
No side effects that I can remember although it was quite a painful injection. The GP nurse used to do the injection in my bum. Myocrisin is the trade name. You don't hear it used much now but I think it was used quite a lot at one time. Farm
Gold injections were the first drug I had and it did hurt getting it,didn't manage to have it for very long not even enough time to see if would be any good for me. I didn't realise I had a reaction to it ,my Rheumy noticed a very small rash on the top of one of my feet and said it would have to be stopped.
Yes that's right, some develope a rash, I did hear that somewhere. I'm hoping that they work for me as it's all that is on offer to me at present and so really anxious that I can tolerate them, even if they do hurt like blazes, but I really don't have a very promising history. Anyhow, thanks for your reply and all the best. Jean.
Thanks for getting back to me so soon June. I agree, sometimes the old ones can be the best. I remember a brother-in-law of mine getting them years ago and he seemed to manage alright. My fear is returning to the dark days when I was waiting to get on Bio's, it was awful. I live on my own and when you have to do everything yourself if can become very hard to get through your day.
Something always had to go by the wayside and it was either the house work or walking the dogs everyday. I hate my wee bungalow not looking it's best but more than anything I get upset when my wee lovelies don't get out. Having said that any dog owner will tell you that when you are I'll they seem to know and they will settle down beside you and wait for you to get better, they seem to understand that you are not yourself. I have a need th our who would walk them for me but he is not too well these days himself so I wouldn't ask him now.
The one thing I've learned about being ill is that as humans we always find a way of adapting. So I'm hoping the will to survive will kick in and I will get through this too.....and my wee dogs will too. XX
Sorry to hear things are pretty rubbish for you right now, what a wretched condition this is. I just wish there was a drug that worked for everyone and kept working! Giving us some peace to get on with our lives.
Re your dogs, have you heard of the cinnamon trust? It is a charity providing volunteers to walk your dogs if you can't manage. Might be worth looking into just in case you need it?
Thanks for the reply. I've never heard of the Cinnamon Trust. I live in the north west of Ireland and it doesn't sound familiar at all but it certainly sounds like a great idea. I'll see how I get on as the steroids decrease. I have to decrease them over a very long time......by 1mg per month! That will take me into October!! When I see Dr Armstrong ill know much more and will just have to manage as best I can for now. Hope your well. XX
Hi Jeanabelle, I am on 15 mg of prednisolone daily, have been for about 8months,if it wasn't for a collapsed vertebrae giving me pain, my joints have been good, the odd flare, but no agonising pain.I have also tried several biologics,not had gold though,unable to have methotrexate due to chest problems.Seeing my rheumy this month, so not sure what's next,maybe gold injections,will keep you posted.x
With regards to pain they were excellent but I was out of control. An example, I went out to the garden to trim a 13 year old Canary Creeper and over the space of 3 days and evenings I tore the thing to bits u till there was nothing left but a stump. My neighbour came out and too saw off me. She had been watching me all the time and knew she had to stop me as I was going at it for 4 hours non stop, I was like a woman possessed! It was after that I foned my Rheumy nurse. I'm starting to get very sore and already but I'm hoping my new pain relief Gabapentin will fill in the cracks......I hope!
Hi Jeanabelle,I'm so sorry but I had a picture of you in my head cutting away at your Canary Creeper,had a little chuckle to myself and then stopped short as I know just what it feels like and I have just started on high doses of prednisolone,only on my third day of the 10 week course,my mind is working overtime and have had very little sleep my hubby is telling me to sit still when all I want to do is everything, but laughing aside it's not very nice at all.I really hope the Gabapentine gives you some relief.Gentle hugs and please let me know how you are doing.
Had gold for about two years it was my last dmard and had no side effects and it gave just over a year remission, but for me it stopped working.. I'm now between treatments. it is an injection into the bum and stings a bit , regular blood tests are a must
Now that's what I want to hear......a remission of any length is always welcome isn't it? I've had iron injections n the past so I know about injections that sting. Anyhow with all that we go through with this reched disease a bit of a sting in the bum is nothing. Thanks so much for you input, means a lot, take care......being in between can be 'difficult', all the best.
I am just amazed at how long some sufferers have been on steroids! As for eating I've put on 3 kilos in 18 months. Now that may not seem like much but when your 4ft 11in, and getting smaller by the way and with boobs like Dolly Parton 3 kilos is way too much. I'm told that steroid weight comes off easily once you stop taking them. I used to have to tell myself, while standing looking to see what was in the fridge, that it was the steroids talking......don't don't work very often but I did try. Thanks for the reply. XX
Yes I do attend Altnagelvin and he is of course the one and only Dr Armstrong. Isnt he just great to see? Puts you so much at ease, chats away to you but is also a very fine Rheumatoligist. I would trust him with my life......he and I have a great laugh too. Tall, lean and, I think, quite handsome too. Do you live in Derry? Thanks for getting in touch and I hope you are well. XX
I live in Coleraine but saw dr Armstrong in ballykelly. I was then transferred to dr burns probably cause it's nearer to me. However I would like to see dr Armstrong again as I had more faith in him. I'm on mtx injection but still in a lot of pain and I don't feel like I'm on the right medication. Like you I booked a holiday back in January and I go in 3 weeks to Greece but feeling quite concerned because of pain. I have an appt on 23nd June and I will be asking for steroids to see me through. I'd love to go back under dr Armstrong care but feel like I would be looked on as a nuisance if I asked for this. Hope you enjoy your cruise and are feeling better with gold injections. I need to be a bit mire outspoken on 23 June as I'm getting nowhere fast
Dawn, I know how lucky I'm with my Dr Armstrong, he is just wonderful......the women all love him. I told him that once and he just said "Of course they do, just look at me", I was silly laughing. All that aside he is a gifted Dr too. I have every faith in him. Listen if you think your not getting what you need you have every right to change, it's your disease, your body and you know best what is going on.
Dawn I'm like a wean waiting for C'mas......so long as I can get up to the water slide I'll be contented......I might only be able to do it once but that will just have to do me. As I have said Bronagh said she will give me a steroid injection before I go if I'm not in great form. Again my first class Rheumy team looking out for me, I'm so glad I have them.....as I said before god bless the NHS for all that it has and continues to do for me.
I really hope you enjoy Greece, all the lovely sunshine always makes us feel better even if we are in some pain. Take care and enjoy yourself. You can PM me if you like but still let you s know how you get on. Take care darlin and all the very best. XXX
Thanks jeanabelle , I just love Derry and nothing more do I enjoy then getting up there on the train or bus. Great city and lovely people. If I don't get any satisfaction on 23 I'm going to ask to be referred to the yes ... Very handsome and very funny dr Armstrong. He's a very gifted man as you say. I might even run into you if I get an appointment with him lol take care and I will let you know how I get on xxx
Hello - gold injections were my first ever DMARD back in the seventies when I was diagnosed. It was extremely effective. I had to come off it after 18 months because of protein in the urine - it can affect the kidneys - (that was the only side effect I experienced).
However, I was told that many people had been on this drug for many years without any problems so once again it seems it's just the luck of the draw. The injections were painful but the effect was great.
Thank you very much Jude, very encouraging. I intend to have a look at the side effects. I had to stop MTX as my liver was a bit iffy......I haven't a great history of tolerating most of the drugs I've been put on but as we all know it's a journey to find the 'right' one for us......my journey continues. My Rheumy team are brilliant and look after me so well that it's a comfort to know that I'm in the best of hands. Take care and thanks again. XX
Had a look on this site and my only worry would be the auld liver. I had to come off MTX because it was attacking my liver. Time will tell. I'm a a good bit more positive though about Myocrisin, to give it its pharmaceutical name. Thanks for the link, a big help. All the best. Jean xx
You sound lovely with your hyperactivity! Hope you can reduce steroids slowly and the gold works. My mum used to have them and got bruises but I assume they can avoid that. Enjoy the water splash! I have fantasies of going to Iceland one day and swimming in hot pools
Cathode I have friends who did that last year and said it was just wonderful......when your up to it have a go......life's too short! How are you anyhow? You have really had a rough time recently. Please take care and I'll let you know how I get on with the gold. XXXXX
Thanks. Well I had post op and nurse practitioner was v pleased with me and told me to take things steadily. Having 2nd rituximab on Monday and already I feel more supported but there's a long way to go. We're off to loch broom by Ullapool next week which should help.
Ah yes the magnificent Ullapool. That will ease your soul and thus your body. Relax, breath in that healing air and you will start to come back to yourself again soon, I have no doubt. You deserve some body and soul R&R. Be good to yourself you lovely woman. XX
I had gold injections for many years when I was first diagnosed in the seventies and they were pretty effective, though I wouldn't say as effective as the more modern treatments. Also, there are some nasty side effects and many people are unable to tolerate the drug. It may well be that it will work for you as it did for me.
As regards steroids I have been on daily prednisolone for 40 years, plus many injections. They have made life tolerable. However, developed osteoporosis a few years back, no doubt caused by long term steroid use. This has been effectively treated with yet more drugs!
You need to manage your own case and do lots of research on the many and varied newer treatments. Hope you find the right treatment for you. Everyone is different. I started on rituximab infusions about 8 years ago and this drug has changed my life so much. Can't undo the damage to my body but has relieved pain and controlled the disease. Best of luck.
OMG.....40years on steroids! Was that not really long? I was only on them a year and a half! Thanks for telling me your experience on 'gold' that helps a lot. It's good to know too that they can really work. I intend to do some research on the side effects but I will as always be guided by my wonderful consultant Dr Armstrong. He is the type of fella that you can sit and ask questions, speak about how you feel and as honesty as you like. In the end I always go by him and he has never been wrong. Thanks for your reply and I hope you are well. Jean
No doctor in their right mind would have you on Prednisone that long, in good faith. I was on it 7 years, and besides the huge weight gain, it messed with my psyche. You can also develop a disease from too much Cortisol in your body from Prednisone, called Cushings Syndrome. You might want to go to an Endocrinologist to make sure you don't have that. I remember a few nasty symptoms from Cushing Syndrome. The most common is dark purple stretch marks all over your stomach and breast area, extreme moon face, irritability, shaking in my hands and even my head would get the shakes that I could not control, and even though I wasn't eating that much anymore, I kept gaining wait for no reason. I was basically unrecognizable.
In the seventies there weren't many alternatives and believe me I tried everything. After having my son the gold failed to work when I restarted it and steroid treatment was the only thing that kept me on my feet and able to function to a limited extent. In the absence of other effective therapies I had no options as my disease was extremely active and destroying my joints.
Everyone is different and I am fortunate in not having the weight gain and moon face with steroids, though had had to deal with osteopenia/osteoporosis.
I am now 64 and still continue to take 5mgs prednisolone daily along with my other treatment and my condition has stabilised. I have no regrets about anything. I am still here, happy and living a fulfilling life. Without the steroids I dread to think of the years of pain and suffering I would have endured.
Am now able to benefit from modern interventions and I hope that everyone can get the best treatment for them so that they don't have to suffer the joint damage and deformity that used to be the norm.
How long have you been on Prednisone? If you are on it too long, you can get a disease called Cushings Syndrome, which I did because my Rheumatologist had me on it for 7 years. Now I cannot put any kind of steroid or cortisone in my system to help with pain. Please don't stay on Prednisone too long. The first medication I was put on after Prednisone worked great. It was called Arava. It was a pill I took daily. But after so long that quit working as well as in the beginning. I recently started bio injections called Cimzia. Maybe that's the medication your doctor wants you to try. It works great for me. Also another warning about Prednisone is that it can mess with your psyche. I never had ADD as a child. I did great in school and was very outgoing. I now have ADD, memory problems, a hard time concentrating, not to mention the weight gain. After about 2 years of being on Prednisone, I became very depressed and didn't want to socialize anymore. I really think Prednisone is a very dangerous drug.
It certainly has serious drawbacks. Again I'm amaz d at how long some people have been on steroids. I have only been on Prednisolone for 18 months and if I hadn't contacted my Rheumy my nurse she said she would have been sending for me as I was on it long enough.
For me it more or less stopped all pain, its effectiveness was unlike anything I had been on before and that includes 5 Bio's. I agree with you that Prednisolone is not to be played about with, a very potent drug indeed.
I have had some very positive comments from other who have been on gold so I'm a bit more positive about trying it. Take care luv and thanks for your reply, Jean. XX
I hear you about the prednisone, I too have a much cleaner home, even did some painting in my hallway, along with gardening. I just started back on prednisone, 5mg 3weeks ago, pain is gone. Have you tried a lower dose? I have never gone over 5mg and when I felt really wound up I lowered it to 2.5. I still felt good and accomplished things at normal speed. I took myself off and for @ 3 months felt good until recently, when I started up again. I am not taking any other meds, but lots of anti inflammatory supplements and I feel I can cut the prednisone down again. As much as it can be hard at times I keep my stretching exercises up every day, it really helps. I do try to be careful and rest when I feel tired, and am learning to pace myself, hard to do sometimes when you suddenly can do things! Hoping for the best for you.
You know exactly what I talking about don't you? I started off on 5mg but it was then increased to 7.5mg as it was loosing its pain killing relief. It was when it was increased that the mania kicked in, it was just awful. My brother asked me once while we were speaking on FaceTime if I was 'on something'. He told me I was talking none stop and laughing all the time. I started to link that with the behaviour I was becoming aware of. I put up with it for about 6 months until I could stick it no longer, even with the great pain relief. I was going to do myself an injury it it kept up. As I'm being weened off Prednisolone lim being weened on Gabapentin. I found it just left me unable to get off the sofa when I was first put on them so I had to stop them and gradually reach the target of 900mg per day......ill be on 700mg from tomorrow so I'm getting there.
But as I said my Rheumy team were moving towards taking me off all steroids anyhow as in their opinion 18 months is long enough on Prednisolone. That is how I've landed on planet Myocrisin aka gold injections.
I do exercise everyday by walking my dogs and I'm also looking after my two elderly and increasingly unwell parents so that keeps me going too. If these injections do t work I dread to think about how I will manage my parents but for now I just have to keep going and hope for the best. Thanks for your reply and all the very best to you. XX
I was on prednisolone on and off for about three years and a few steroid injections.. this was a god send at the time.. though weight gain... steroids caused me to develop high blood pressure and now I have been told I have 20 percent cataracts in each eye at 51!!, new cataracts could be a problem with steroids, but when in pain do you care? no!!, will get cataracts done whilst still working, as can have them done before they progess too badly Nhs have to wait until they are v bad.. I have a small private policy.. RA excluded naturally.. but had my knee arthroscopy done on it as it was an "injury"
Good morning Summer, glad to hear from you. I have been amaz d at what these drugs, steroids, have done to people, its incredible. Believe me I know what it's like to have pain from my jaw to my toes and when you take a tiny pill that makes it all go away it is very difficult to have to stop using it or be stopped. But there comes a time when you know yourself the damage it is causing and you have to take control, that is my opinion anyhow and I know it's difficult but for me I'm will to try something else rather than slowly continue to damage other healthy parts my body.
I'm 66 now and there is still much I want to do and there are people depending on me so I have to keep experimenting until I find the right drugs for me. Isn't that what we were all told when we were first diagnosed? That's what I was told anyhow. I have been through so many drugs over the years some worked for a wee while, some didn't work at all and some were going to damage my body, liver and kidneys mainly and so they were stopped. I would be no good to anyone one on dialysis would I?
At the end of the day it is each persons personal decision and I respect that completely. My mother Mocular degeneration so I know how important your vision is to you and I hope you get it all sorted soon. I wish you all the very best in yourself, take care luv. Jean XX
Hi just reading some posts as i was on holiday. I was on gold injections a while ago nurse did them every week they worked for me very well started to get side effects and it was stopped but hope they work for you good luck x
Hello beeckey, how long were you on them and what kind of side effects did you have? I meant to look up what they can be but I forgot. I did here that if they effect my liver I would be taken off them. I've been on a lot of different meds and for one reason or another I had to come off the. One of the meds, I can't remember which effected my liver so I had to come off it so I may have a propensity to liver damage. Anyhow thanks for your reply and enjoy your holiday. Jean.
good luckHi Jean It was 6 Years ago so quite a we while it is hard to explain they just made me feel very odd the nurse said she could see me change in front of her ryhmy took me off them right away but because it is an old does not mean it will not work for you so i hope it does and good luck x
Oh I very much understand where you are at now, I'm in the same boat, ra drugs have not been very good to me and sadly my Ra came on and hit me so hard and fast I didn't get a minute to see what was happening. My lungs are now badly damaged and I'm living on Prednisone...it's not ideal or much fun. I just wanted to let you know I totally get your feelings. Wishing you a better transmission than you are expecting and strength to get through it
Hello there and thanks for taking the time to write to me. At present I'm nearly off the dreaded preds now, just 1mg per day. About two weeks ago my RD came back with a bang. Severe fatigue, complete loose of appetite and the pain all over my body is so bad but I know from past experience there is worse to come. I am in free fall right now. Back wearing splints so I can continue to drive and squeeze the dish cloth!
I'm off on my first holiday on Sept 1st and my Rheumy nurse told me she would give me a steroid injection to see me through the cruise I'm looking forward to so much, so at least I have that.
As for the gold injections I haven't word to start them just yet. My thinks no is that they will wait until I've had my holiday and then make arrangements.
To make matters worse I'm the only one to look after two elderly parents, my father is nearly 92 and my mother is 88 now in September. Yesterday she had a very bad fall and is in hospital. When I was waiting with her last night to go to X-ray one of the nurses came in with a chair for me, which I was very, very grateful for as I was going down fast. She asked me what the splints on my wrists were for and when i told her she more or less told me to go home as I was in no state to be there for what could be hours. I did stay until half past nine at night and then I had to give in and go home.
So you can see why I'm looking forward to getting away on my cruise around the Med for 11 days. I need it soooooo much.
Thanks again for writing and your kind words. Hope you are well. Jean XX
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