Omg...surely these things can't be happening.... prednisolone?

Ok so I won't ramble on. The pharmacy were meant to deliver an emergency Prednisone pack. I'm currently on 40mgs (I know it's a lot and that's not very safe...but have no choice) a day and they are the only drug keeping me alive right now (bad lungs and RA) and there is a local festival going on so the pharmacy couldn't get to me and had to return them to pharmacy. I'm meant to have taken them 2 hours ago and here I am wondering who I can ask to help me out and go and get them (I'm fully disabled by this and can barely move at all....and since getting sick I've not had any friends either) and I am so sick of asking people to help me, feeling like a damn cripple who can't do anything for herself and realising that even now how bad it all is....nobody really cares. Why do things always have to be so hard, why can't I just wake up one day and skip to the loo and dance to music....why can't I just be the person I used to be, instead of this wreck .... And I'm really scared what will happen to me if I go from 40mgs to nothing for the weekend... I think we all know that's not safe :(

28 Replies

  • Not sure what to suggest, that is an awful situation, would contacting either 111 or your out of hours doctor on call be of any help. Sorry i cannot think of any other way to get you the medication you need. Could a neighbour collect them for you ? Most people will help out in an emergency. or is the pharmacist who was going to deliver them yesterday able to do so today? most of them are open till lunchtime.

    Why have you ran out of them? has your surgery not followed through on a repeat prescription.

  • Yes that's exactly how it happened. You saw my other posts so you know my situation. I had left hospital a week ago and have been back once to collect more steroids and antibiotics, I have them on repeat anyway but the hospital had changed me to a much higher dose and then my symptoms flared badly when I tapered to 30mgs so the Rheumatology consultant told me to go back up to 40mgs so I ran our quicker. So I phoned the pharmacy Wednesday to request an emergency delivery of them and the ad-cal I needed, Thursday they delivered the ad-cal without the steroids, they came late so I didn't get to call them till Friday, at which point they said a block had been put on it (I think because of the dosage change) and I explained situation and told them it's desperate and I simply can't run out! They promised to get them out to me on before the end of Friday. Then the roads were blocked because of the festival so the driver took them back to pharmacy....I really can't believe these things keep happening, I've been trying so hard to handle everything better but it's just one thing after another that I shouldn't have to deal with. Honestly you guys will laugh. The local food bank has sent out thousands of leaflets giving out my home phone number as their contact's honestly a joke lol

  • My Dec (19 year old carer and son) will be walking to town to collect them for me, thank God bless him. He was on the ball and told me he would go do it without being asked. Ita been really hard for him lately as he's taken on my care. I know he loves me and wants to look after me, but it wasn't exactly any of our life plans, he's 19 years old and all his friends are out earning a proper wage, clubbing at the weekends and taking their girlfriends on dates, my son's girlfriend is fostered by me, she's been through a lot with her own family and I'm all she's really got too, their time together is spent looking after me, my two younger children and our home. It really shouldn't be like this. I'm 38 not 83 :(

  • The very reason I don't let the pharmacy deliver my meds - they cock it up so often it's dangerous.

    I realise you don't have a choice it just makes my blood boil, surely they must understand the importance of people not running out of certain meds??! It's their job FFS.

    Anyhow, deep breaths.

    Your son and his girlfriend will be better for it, as much as it might not feel like it to them now. It sounds like he's a compassionate, thoughtful and considerate young man. His time in the big wide world will come, and he'll be much better equipped to deal with it than some of his peers.

    All the best.


  • Thank you ade, again you are spot on. I like your candid nature. :) It really is upsetting me right now. I'll be honest and I guess you all realise I've not been coping very well in the week I've been home, I am very aware of the pain in my lungs, they especially my right lung feels incredibly swollen in there...I'm now four hours overdue and I know ill be ok once I get them...but it's quite scary too. Thank you hun for the support. Im glad I didn't leave the forums because it's awful having no one to talk to about these things. I mean I talk to Dec but a lot of medical stuff goes over his head, I guess he's about to really start Learning

  • You're coping better than I would.

  • Thank you :) this week has been mind bending and I've been through the crying and the anger and accepting that this is really happeningto me and I can't just make it all go away or pretend it's not. I am definitely feeling more positive now, I'm a bit of a medical marvel anyway, maybe I'll also be a medical miracle too and be here beyond expectations...I really hope so :)

  • Glad to hear you feel more positive, there's always hope. Always.

    And we all have spells of feeling like everything is wrong and 'why me?!' etc. At least I do, and then an hour later I'm laughing with the kids (or crying 😀).


  • Lol I just clicked about the neighbours option haha. If you look on my other posts, you may have commented actually, my neighbours have actually offered to help, but they are the neighbours from hell. And I will turn in my grave before I ever ask them for anything lol I wish that were an option though

  • Rambling again lol I'm so sorry I'm driving everyone mad. I'm infamous for talking too much at the best of times.. but when I'm stressed it's like a blooming freight train haha no wonder I can't breathe half the time lol

  • I'm so glad your sons helped. He sounds like a star. And you too for supporting his girlfriend. I've also lost friends while being housebound and it's a bitter feeling. But I really value the few people who do still keep in touch.

  • Once when telling my partner about my struggle to open a milk he said go out of the front door and stop someone! Only problem is that I can't always open it as it sticks. So I hurled it at the wall and ended up mopping up as best I could.

    It's scary being alone and in pain


  • Oh hun in the last two years I've been there so many times. It's a cruel world living in constant pain and being unable to do the most basic of things. I think as adults we all feel like we should be doing everything and then suddenly we cant. Thank you for the comment about my son, he doesn't get much appreciation for his efforts except from me, I really couldn't cope without him and thank God I have him. And all my kids of course, but being my carer is one hell of a job that goes underpaid and all he ever heard is how he should get a real job.

  • I wish I had a son like yours. If he is doing a lot of caring, can he do courses online to help him develop? If that's something that interests him of course. But there's quite a lot of qualifications you can do, while developing computer skills. I suppose, as you say, we do appreciate the good things we have when in situations like this.

  • Very true hun. To be honest this has all happened so suddenly, he came out of school (to be honest his school history was awful he didn't function well in a classroom and it was a rare teacher that could educate him, he's very intelligent but learnt from me mostly) and then within one year his girlfriend was battling a long gruelling court case against her abusive father and his mother went from doing everything for all my kids to barely being able to walk to the toilet. RA literally hit me like a sledgehammer, it took four months between diagnosis and complete disablement. I'm single and have been since the younger two were born. It was the right thing for our family at the time but I regret it now as the whole heap has landed on my now 19 (16 at diagnosis) year olds shoulders :( it's a sad truth but I have to look at it that I'm just so grateful I have him. And my two younger kids are only twelve so he's a massive part in their upbringing now. The kids dad moved to Thailand after I got sick so he's not much help....not that he ever was in this country :/

  • That sounds like a lot to handle for you all. My recent experience has shown me that although I thought I'd reached the bottom in terms of mobility, I have been able to gradually gain back modest things. Like we went out for a meal in a restaurant this week with our grandson and I managed to get up from a normal seat without any trouble. After my two knee replacements I was reassured by the post op nurse who said to take things at my own pace and not fret because I wasnt dancing around immediately (sadly very far from it!). But I have found that very small advances can really make a difference. I hope you can get some more help with the RA, there are a lot of options arent there.

  • Bless you Hun that's really good to hear though, ya know? Every little step in the right direction is always appreciated when you have experienced it so much worse, I'm very glad for you that the surgery seems to be helping, little steps though I know and I'm sure it's frustrating cos we all want to do more than we are able. My neighbour (a nice one) had her knees done over the last couple years and seems so much more comfortable as she walks now. It's much better when you get some relief and start being able to actively enjoy life, albeit dramatically different from the life you envisioned. I did have some level of remission for about six months with enbrel and I wish I'd been more active but it was never a full remission and I could get about the house a bit better but not out the house. Then my lungs failed again. Sadly every avenue I've tried has either not benefitted me at all or made me more Ill. Now I'm not sure I'm allowed or want to try another drug to control the RA. So at the moment it's just steroids and pain relief and lung medications and thyroid meds.

  • Hi Orchidcass,

    Your Dec sounds a super star and a lad to be very proud of! 🌟

    Have you asked for any kind of home help... As you've recently come home from hospital I would have thought that you would qualify the NRAS help line might have a clearer picture on that option. It would create a bit of 'space' for you all. Also keep pushing for that move of house... It's demanding trying to sort stuff when it takes all your energy to just be but it will be worth it in the long run!

    Keep going girl we are all here rooting (or is that routing??) for you and yours

    All the best


  • Lol thank you Ali I really appreciate it :) he really is, I'm a very proud mammacass. Yes I believe things are all starting to fall into place with more help, the respiratory team will be round in a couple of weeks and every day since I got home I've had at least three appointments booked in with the multiple departments I need to be in touch with, I'm sticking things off a massive list which I'm also still adding things too....I'm getting there kinda but it really does seem so much on my plate when I wish I could just be in a comfortable home with my family and able to enjoy my time as best as possible. Some of it seems so ridiculous, things go wrong and roadblocks in my path every step of the way....but that's life I guess, it's always been like this lol. I am so glad to have all of you to talk to. X

  • I couldnt get by without lists! There are a few things which have transformed my life often suggested by the physio I see. One of the best is a rollator with a seat. This makes trips out much easier especially, if you have problems with breathing, to be able to sit down from time to time.

  • Yes I have one at home and it's been a life saver though I have only managed to try it walking to the shops once and I didn't get to the end of rhe road before I was in tears and retreated home, I have a wheelchair too but I can't manoeuvre it myself as my hands are too bad and in all honesty I got so heavy my son and mum couldn't push me :/ I've post 5½ stone, just gained the ½ back since being on steroids again. I now have a scooter too but haven't been able to even face getting about on that yet...I have bath lifts toilet risers and perching stools ergo handled sticks that still hurt and swell my upper body to use and I have arm rest bar sticks which are simply too bulky and difficult to use. I mean don't get me wrong I get up and moving about as much as I possibly can but sometimes I can shuffle up to the bathroom and most the time I can't and have to use my tiny downstairs loo, I sleep downstairs. RA literally hit me so hard and fast. It was considered"rapid onset severe rheumatoid disease with anti CCP positive antibodies" it was so quick honestly in four months only my children recognised it was me at all. I love reading any positive stories though and seeing other people live as fully as they can with what can be an awful disease, my hat's off to you all. Amongst my fellow warriors I see some of the bravest, most inspiring, caring individuals I could ever hope to meet. Xx

  • Oh and thankfully my disease path is very rare to happen like this, so I'm sorry if my posts can seem quite scary to anyone on their journey with Ra. And I do pray regularly that what's happened to me shouldn't be able to happen again to anyone, if my case can help them recognise these complications and save someone else then I'll be glad of it. But please don't worry that all Ra patients will end up like me. But I do want my story heard ....I just wouldn't wish to upset anyone with the doom and gloom xx

  • I know what you mean and I try not to dwell on the difficulties too. But they are there and if you're unlucky enough to have it in that form, its better to share.

    I do try to keep thinking that although there might be some treatments eliminated because of reactions, they are doing research all the time so I hope they'll help you soon.

  • Thank you hunny I really hope something comes up, if it doesn't I hope the research will help my kids if the genetic link continues as it has done in the past xx

  • Just a thought but it might be worth asking your care team if you could trial one of those vagus nerve stimulators... They've had some good results with them in trials but I am not sure of their availability in the UK and my understanding is they are still in trials (could be wrong there!) ... No harm in asking though 😎

  • I'd seriously try anything to be honest. I will look up aboit them I'm sure I've heard them mentioned recently

  • Hello, I'm sorry to read about ypu situation. I'm steroid dependent, I was in hospital for 7 mths before I was fully diagnosed with all sorts of diseases/illnesses, 2 of which I have to have steroids. I can't take prednisone so I have Hydrocortisone. I was advised to always have at least 2mths supply, in case of an emergency. Whether that they manufacturers stop making them, what has happened once in the last 7yrs, or the chemist is out of stock. You've always got them. I have 90mg (3 x 30mg). I have Addison's Disease, Adult onset Stills Disease. I also have to take Fludorcortisone, haven't had any problems with them. HHope you get it sorted. Take care. Ann

  • Thanks Ann yes I usually do have emergency packs of steroids even though I wasn't on maintenance dose at all in over a year. Just major doses for chest issues mostly. But with having had to use them as I was heading into hospital and this is the second time I wasn't given them or not given enough since leaving hospital. It's such a serious matter. I'm also meant to have antibiotics rescue pack but still haven't sorted that yet. I have a double gp appointment coming up soon so I'm gonna see if I can get one gp behind coordinating all the health issues as one human being because I really can't go on like this. I'm so sorry for your diagnoses hun. They never just seem to come along on their own, it's always multiple conditions in one person! It's not very fair but hey at least student doctors love us and learn from our medical Marvel's. There were a few other things I remember dreaming of becoming.... medical oddity wasn't in the list

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