Hi all just laid here thinking and thought I'd ask, been on immunosuppressants for 4 years due to stage 4 nephritis and neutropenia due to lupus really at first I was so scared taking them but the alternative was worse so i get them monthly from my gp use to be hospital have a blood test before and a blue book!! My gp understands my low white count more now and prescribes them without a problem however when I went fri script hadn't been done so called in sat as my dr now opens weekends and has a set of new gps just for the weekends the receptionist spoke to a gp and he refused to give them to me saying because of my blood count it's against the medical guidelines set out for this drug, I said has he seen my bloods from the past and she said yes and that he still wasn't willing to give them to me so iv been pondering all weekend over it, why are they giving me these drugs against medical guidelines I understand gps dnt have as much knowledge as consultants my blood count has been lower than this before and I've had them no questions asked, when I express my concerns over these drugs at my hospital appointments they play them down but everytime I swallow one I think of the harm aswell as the good they could be doing my question is how long have you all been taking them and what dose has anyone ever stopped taking them and found alternetive drug?

Thank u in advance it's strange because over the four years of going to the hospital iv met 4 medical professionals who take these drugs so I no it's not just little old me and what is your opinions on these types of drugs ??

10 Replies

  • Hello. I have been taking methotrexate(immunosuppressant, 20mgms weekly) since 2010, I have monthly blood tests, and regular prescriptions with no problems.a GP checks the results and I access any comments online. Of course these drugs are nasty, but the alternatives of not taking them , are often life threatening. I am also on Prednisilone daily. My diagnosis is Cerebral Vasculitis.

  • This is the issue with GPs, different ones have been reading different manuals and regulations, or not been keeping tabs on new regs and giving out outdating information, or the old guard just does what it wants and carries on.

    TBH I think people get too paranoid about reading the 'possible side effects' and panic - they seem to forget the POSSIBLE in the sentence, i.e, it's not a guarantee that you'll get any of the side effects.

    With this said, many immunosuppresants are in circulation and we don't honestly know exactly how they work. But then again we don't know how lupus works either, or we'd have a cure by now.

    I stop reading about side effects, and I already have accepted I'm not immortal - I'm going to die anyway, probably sooner than other people. I'm not worried about longetivity; I'm concerned about quality of life. If the drugs give me an improvement in general function, then I will take them. If I'm drowning, I don't look at the 'caution' label or pricetag on a lifesaver, but that's just me.

    Ask yourself if the meds helped - did you feel better? Sometimes I think they're not doing anything for me, but when they stopped working? Man, I felt that for sure! If they do, take them. If the actual side effects you experience (not the ones you searched up on Google and scared yourself with) are worse, then maybe try something else.

    The suppresants regulation has literally just changed again, so it's very likely you were considered eligible for these drugs before, but aren't now. It's not you; they've moved the goalposts for costs or management or something which probably has more to do with making a profit than it being dangerous.

    Just my thowts

  • Is there any link you could kindly post ( for the change of regulation) please, Silvergilt?

    I am on Cellcept but GP flatly refused to prescribe it. I hear this is a "geographical lottery" thing going on. Do your GPs have a shared care arrangement with the consultant?

    Poodlegal, that must have been so upsetting. Some GPs know no bedside manners whatsoever. Pure arrogance. I know they are busy and stressed but they get a massive paycheck. It won't hurt to sound a little more caring. Doesn't he realise how dangerous to suddenly stop medications without specialists input??????? He is clearly out of line there.

    Wish we wouldn't need to deal with NHS primary care GPs meddling with our treatments as GPs don't understand our condition or our treatments whatsoever except some understanding ones (exceptions). The only problem that I see, it's not the hospital which will hand out our prescriptions it's that dreaded GP surgery dealing with us, inappropriately (unless you are lucky enough to have a good GP).

  • I'll try and find the link, I know I have heard consultants tearing their hair out about it, will see what I can dig up.

  • I would be inclined to contact rheumy to ask advice and if they say it's ok to then write to GP....after all it's they who make the decisions to prescribe immunosuppressant s like methotrexate. Whilst it is fairly toxic it mostly seems to keep the condition at bay, so I keep taking it. I do mine by weekly injection now as was having stomach issues.

  • So sorry your having to go through more hassle when you're already unwell. If it's any help I've been on them for 32 years with a continuous low white count! Up until now I've not really had any serious problems and they've saved my life on occasions. I don't know why the GPs don't speak to your consultant and agree between themselves. Hope you manage to get it sorted out x

  • I have taken them for 8 years. Recently changed from methotrexate to mycophenolate. Mycophenolate is "off book" which means it's not supposed to be used for lupus, but for organ transplants. If I didn't take them I would suffer organ damage. Learn as much as you can. Good luck 🍀

  • Hi everyone thank u for the posts spoke to my gp this morning she said the other gp didn't know my history and was been cautious so I have my script now,fern tree I no exactly why your gp won't prescribe it too expensive!! I had the same until I got changed to azathioprine then go they were happy to prescribe it ,at work we have a medical book like drs do and I read the cost of a month worth Of azathirprin cost £6-50 but cellcellpt cost a whopping £90 per month!!!!! silver glit I admire your way of thinking!! Your post made me smile and Sallyk21 thinking of you and thank u all for taking time to reply xxxxxxx

  • Good grieg £90 per month, there's no wonder my GP doesn't prescribe it. I was on Azathioprine for 18years but was then changed to Mycophenolate due to abnormal LFT's. I've been on those now for 4 years. I have monthly bloods at the hospital but if there are any problems the Rheumatology Nurse sorts thing out. I'm also on steroids( interstitial lung disease) which have caused Drug induced Diabetes and have to use insulin . My point being, sometimes you do get unwanted side effects which then in turn have to be treated, but it keeps my Lupus and Lungs stable and gives me an extremely good quality of life. I'm glad you've got things sorted xx

  • Hi anne59 this book is 2008 addition so price could of gone up it said £90 for a pack of 28 so as you know you take between 2 to 4 daily so imagine the cost! The minute I went back to hospital and said my gp says he can't prescribe the kidney dr says oh he can but he won't as they expensive! I was paying 30 pound in a round trip some months to get to and frm hospital for the monthly script and tablets as the hospital is a ball ache to get to via bus changed to aza last year as I want to have a baby so my gp was more than happy to give them to me x

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