Redpara54 Member Posts: 2
edited 7. Feb 2023, 10:12 in News Archive
I am new to this forum but not to arthritis as I've had Ankylosing Spondylitis since I was 18 years old. I've managed a full 46 years in the NHS before retiring but seldom.took time off work with my condition. However since retiring my health has suffered mostly of inflamed joints an OA, and not till recently have I managed to get the medics to listen to my story of excruciating pain, and aching. So much so I haven't managed a full nights sleep since 2010 and the lasrt 12 months I haventvslept in my bed only on a reclining chair to gain position to gain comfort and most of all some sleep. I have recently paid private to see a Rheumatologist and to start the ball rolling he's prescribed Steroids, Prednisalone which I've been told can make you gain weight and cause osteo perosis. My GP has warned me that the side effects are not in my interest, so now the Rheumatologist is looking to put me biologic DMARD which after hearing about the side effects has frightened me greatly. I.e Skin Cancer & Immune system being affected, so my question is to anyone suffering with my condition and on the same prescribed medication, what is its effects on you and have you had any side effects taking this drug....?


  • [Deleted User]
    [Deleted User] Posts: 3,635
    edited 30. Nov -1, 00:00
    Hi and welcome - try to ring our helpline 08005200520 but I'm sure you will get the advice you seek from our members
  • stickywicket
    stickywicket Member Posts: 27,608
    edited 30. Nov -1, 00:00
    Hi there and welcome to the forum.

    I do like your GP. He / she seems on the ball and well aware of the side effects of long term prenisolone use. Weight gain is one but, yes, it can cause osteoporosis and other problems too as it thins all body tissues not just the inflamed ones. However, please don't just stop taking it. That, too, is dangerous. Just taper off slowly as and how you have been, or will be, told. Pred is very useful as a short term, stop gap measure.

    I'm sorry you're struggling to sleep. It's a problem for all of us whatever type of arthritis we have. I have RA and OA but my back's pretty good. My Mum had a bad back, though, and she often preferred to sleep in her recliner.

    I'm puzzled as to how you've had AS for so many years but, apparently, only now seen a rheumatologist. Is that right? Have you not been on any medication? And, as you seem to be anxious about the meds affecting the immune system, you don't seem to know a great deal about AS. The thing is, with all autoimmune forms of arthritis, our problem is an overactive immune system so our immune systems attack not just' foreign invaders' but our own bodies too. They have to be dampened down. It's essential to keep the disease under some sort of control. These meds weren't available when I was first diagnosed with RA so, as a result, I now have OA too. But it is true that, when taking them, we should be extra careful about hygiene and always get a flu jab. It just makes sense.

    All medications have potential side effects but remember that they are, mostly, just potential. The leaflets are bound by law to list anything potential but most people don't get them. In fact, these forums don't really reflect the truth on such matters as those who have no problems don't come on here. They're just out living life to the full. You will, however, get more replies if you re-post on the Living With Arthritis forum as more people look on there.

    Meanwhile, here is some good, comprehensive info on AS and the meds
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello, I have had an inflammatory arthritis for twenty-two years and developed OA too as a result of the joint damage it caused. I loved steroids because they make me feel so much better but as they thin every tissue in the body they are not an ideal solution; I have enough bother without knowingly destroying my muscles, bones, heart, lungs and other useful bits and pieces just to make me feel better. I think people are under the impression that any medication is somehow targeted to treat only the affected area which is utterly untrue.

    Congratulations on managing your AS for so long without, apparently, under drugs to control disease activity. Who diagnosed you and what was their reasoning? As any form of arthritis is degenerative and progressive you seem to have been rather fortunate that you could carry on for so long. The progression of my PsA has definitely been slowed by the medication which I began back in 2002 but having been born with an over-active immune system arthritis was always on the cards.

    I have had little trouble with any of the medications: one DMARD have me cracking headaches so I had to stop that but it works wonders for others. One of the anti TNFs took agin me, I was not aware that things were going wrong but the blood tests showed that things were amiss. When we begin these meds we are closely monitored and rightly so, I was on fortnightly blood for years but being used to dealing with the inconvenience of things medical it was life as usual. :lol: I catch fewer colds now than I did probably because I am far more conscientious about hand hygiene, both mine and that of others. I have had an annual flu jab since they began thanks to my asthma.

    I began with one affected joint, now it's around forty: some joints have one, some the other end others both. I am convinced that if I had begun the meds earlier I would not be in the mess I now am but things have progressed, GPs are now much better informed than they were about auto-immune arthritis but they do not treat it, that is the purlieu of the rheumatologist. You will find more information about how others are coping on the Living with Arthritis board on here, that is where we discuss meds, appointments, treatments and the like, this board is more for announcements from VA about intiatives and programmes etc. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben