Not coping

Is there any danger in stopping prednisolone abruptly after 3 weeks? I was started on 30mg and a week later ophthalmologist suggested I increase to 40 mg prior to test for GCA. Had the biopsy done, in the mean time GP follow up blood test result showed that inflammatory markers were well down. Told nurse my pred. would run out in4 days (at the weekend) And requested new prescription. Went to collect it of the Friday and chemist said it hadn't been sent, went back to gps spoke to receptionist who said request had been seen already but not ok'd by doc. She didn't know if it was an oversight or if I should no longer be on the drug. She said she would see the doc and ask him again for it and that the prescription if required would be sent through to the chemist. I got up Saturday morning ,went to the chemist... No prescription . Explained all this to the chemist, she said if I had just run out she would have had no problem giving me enough for the weekend but because the doctor knew and hadn't acted she was concerned and called the out of hours service who authorised it . Now I M wondering if the good blood tests mDe the doc decide to stop medicTion. I feel like a drug user trying to get something I am not entitled to. Weepy, over emotional, angry, feeling all this isn't helping. Still waiting for biopsy result although surgeon said artery was friable (not good) but patent (good) ... Looked this up and got even more anxious. dreading going back to docs tomorrow to sort this. Live in rural area so no choice in doctors. Sorry for sounding off here and everything so negative , I just needed somone to talk to. I am lucky really , nearly all the pain has gone and even the headaches have stopped . I just don't get why I feel so unable to deal with everything / anything

calmly and rationally.

9 Replies

  • I hope that someone more knowledgeable than I will be able to answer your questions more adequately and soon. However, you are quite right, after being on prednisone for three weeks you should not come off it abruptly and it is negligent of your doctor not to have made sure you had adequate medication. Even if your doctor thinks you don't need it any more (and your description of your positive response to the treatment makes me wonder why he would think that) you certainly need to have time to wean yourself safely off the pills. Are you anywhere near a larger centre with a proper emergency department where you could get care?

  • It sounds like the pred is working well for you. I had the same problem with my pred prescription a while back it just disappeared going across the road from the surgery to the chemist. Mind you it was by email so it may have gone via Timbuctoo. It was just a bureaucratic nightmare, the receptionist did not have a clue and blamed the chemist, the chemist blamed the surgery, but the chemist said they would ensure I had some pred to tied me over thank goodness, as it took three days to sort out as they had to write a new prescription in the end. In your case it sounds as if your prescription has disappeared somewhere down the cracks too. The pred can make your brain a bit fluffy and can make it difficult to cope, I am sure it will all come out in the wash though.

  • Similar carry-ons at my surgery/pharmacist. By far the most helpful is the pharmacist. You can sit there any time and watch the toing and froing whilst each side blames the other for the non-appearance of prescriptions etc. At least now I can view my and check if the required change in dosage from my specialist or spec.nurse has been actioned by whoever in the depths of the GP's admin is supposed to see to it. Your entitled to become panicky when such a cavalier attitude seems to prevail. I was down to my last Parkinsons 24 hr patch which you absolutely must not stop suddenly and had a right to do with the receptionist to get an appt.with the nurse practitioner to sort it out. (can't get this at all now).

  • Hi doubtfullee, really sorry to read your feeling like you are but not surprised. It seems to me, from experience and reading here, that the preds are helping you big time but messing with your thought process. This is not uncommon. The situation with the prescription, the doc and chemist are also all too familiar. Saying all that I would definitely be trying to get the preds to ensure you keep taking them. It might pay just to ring your surgery and ask the doctor to call you back. It's certainly better to be on the safe side and keep the steroids going I feel than to stop and get a flare up. The inflammation markers were most probably down, as if read correctly, the bloods were taken after you started the steroid regime? I hope you can get this cleared up quickly and start to feel better soon, the pred brain (foggy head) does get better. Good luck.

  • Hi, Just got over a random bout of tears, started at 6am out of nowhere, until my other half woke up and soothed me out of it, unfortunately just one of the many charming side affects of preds.

    However, no one should come off of preds abruptly & you should have been given a steroid treatment card to keep with you at all times,

    it states "I am a patient on STEROID treatment which must not be stopped suddenly". Under this heading, is the following "If you have been taking this medicine for more than three weeks, the dose should be reduced gradually when you stop taking steroids unless your doctor says otherwise". Any health professional should understand this and provide the steroids first and sort out the prescription problem after. Sometimes unfortunately you have to be forceful, even though the preds are making you anything but. Remember it's your health, your body and it's better to be the troublesome old fusspot than have some jobs-worth put your health and body at risk.

    I hope this has been useful, it's certainly helped me over my teary spell! Good luck, it does get better, eventually.

  • After 3 weeks at that level of pred it would possibly be OK to stop it abruptly, it is very much the borderline but it really isn't something to recommend.

    What is more to the point - OF COURSE your ESR/CRP have fallen - you are on a highish dose of pred and that is the aim, to reduce the inflammation which is indicated by the blood results! The improvement in the symptoms is also what is being aimed for - and I imagine the ophthalmologist saw something that made them suggest you took an even higher dose of pred to be sure.

    You aren't able to cope with the messing about for two reasons - one is the highish dose of pred, even a moderate dose of pred can cause brain fog, and the other is the very likely fact that you have GCA which is a serious illness and can also cause brain fog as well as all the other things that being ill does to us. I only have PMR and am on a far lower dose of pred - coping with anything calmly and rationally without having a meltdown afterwards was next to impossible for a very long time.

    The speed with which OOH approved the handing out of more pred indicates that THEY felt you needed it. There is no reason at all to stop or reduce the dose you are on until the histology of the biopsy comes back. What the surgeon said means that he felt there was something wrong - which could suggest vasculitis affecting it - but that it wasn't blocked completely which does sometimes happen if the inflammation is very bad and blood was still flowing through it. It isn't anything to worry about any more than what you already know: you might have GCA.

    If you have GCA then I think your GP should be encouraged to send you to a rheumatologist or back to the ophthalmologist as an EMERGENCY, not urgent, that can take months. Having a biopsy that doesn't show giant cells doesn't mean you don't have GCA, they sometimes skip a bit of artery or haven't got to that bit. I would hate to thing a GP stopped your pred abruptly just because the blood tests look good. If they can't sort out what should be an urgent prescription then you have to wonder about their knowledge base. It may have been the nurse's/receptionist's mistake of course.

  • Hi Doubtfulee. I have GCA and (as always) agree with the very good advice from PMRPro. I too have moments of complete irrational emotional meltdown, less so now that I am on lower dose and have more understanding of GCA and Pred effects. I understand completely how you feel. When first diagnosed I was confused, angry, in denial. My Rheumy gave me very little information, I felt he just fobbed me off with Prednisolne and told me to come back in 4 months. I felt like a complete schizophrenic hypochondriac! For me it was a vicious circle, anxiety caused by the diagnosis fuelled by the effects of the Prednisolone.

    Two important points ... When you had the biopsy you had already been taking Pred long enough for your markers to come down. So this may affect the biopsy results. Also I had only been on Pred 2 days when the biopsy was carried out and yet it's was a clear negative. The GCA was found in a follow up PETCT Scan.

    So, I know it is difficult but keep nagging at doctors until you have the answers. You know what is normal for you, listen to what your body is telling you and keep telling the doctor(s) until you are happy with the situation. Good luck X

  • Thanks everyone, what an absolute relief to have such knowledgable people at my back, to a large extent it compensates for the isolation I am feeling. I did the practical thing and sorted out the prescription, it looks like things might flow easier for a wee while! I have so stay on 40 mg till consultant sees test results, I will also keep in mind that no doesn't always mean. No when it comes to GCA! My sense of humour and perspective have returned and I will remember when the next melt down time rears its tearful head, that it too shall pass. MY husband (bless) sees me looking better and doing better and can't get his head around why I feel the way I do. West coast of Scotland engineers are not known for their touchy-feely side! If I had a rash or a cough he would understand but invisible isn't in his rule book. Anyway a huge ,deeply felt thanks for replying, advice is great and so is just knowing that there are others out there who have handled this and won.

  • Men are fixers mine was the same got Kate Gilbert's book (Amazon) marked up section on GCA Sat him down with a cup of tea and said read then we can talk ,left room for 15mins. Not looked back if anything the cotton wool became to tight all joking aside glad your sense of humour is back you will need it here is one to start you off

    There is a word that is banned from you lips and all doctors offices plus hospitals F.I.N.E

    F=Fed up or any other F word




    In my family anyone who uses this word is asked whole word or any particular letter

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