Hi all am still waiting for referral to autoimmune specialist .now 7 weeks on from latest attack. Have symptoms of sjogrens and rheumatoid arthritis plus few others. Went to see my gp this morning and she has decided to go down the route that the useless rheumatologist that I saw has decided. Have been on 30mg prednisolone and 4x500mg paracetamol also4x codeine daily. Now going to up dose of codeine and paracetamol and start me on amitriptyline .going to reduce my steroids by 5mg for 5 days ,then reduce by another 5mg for 5 days and continue this pattern.they say it will be painful,I think it could be dangerous. Any thoughts? Alan

31 Replies

  • Hi Alan, the dangers are your uncontrollable symptoms, not the meds. Not sure about paracetamol though. I have codeine, amytripline, and diclofenac, for pain and swelling etc... Ibuprofen is usually the partner with codeine, but I'm no pharmacist. Tapering the pred down over 5 day reductions, is the norm, but as you say, it may be hard to tolerate. I'm in a similar state as you, re control of the disease. Need an immuno drug, but waiting on appt with liver dr,(still !!!). I have depo medrone jabs, 3 mthly, as well as oral pred, and I'm still suffering. Personally, I would see your GP again, to explain your fears, and make sure you have enough tabs to raise your preds yourself, if need be.

    Regarding the amytripline, it is a good drug, though I only have it at night as it knocks me out. It is a relaxant as well, as a pain killer. I was very uptight when first given it as I thought they were prescribing for depression or something. Having been on it for many years, I now could not do without it, if I want any sleep at all. I'm seeing my rheumy next week. Going to start making noises, as I've had enough. Think you need to get angry again too. ( by the way, don't take ibuprofen, if for medical reasons, you can't.)

  • Hi 6161 can u tell me what dose of oral pred u r on please it might help me many thanks .Alan

  • Hi 6161

    Good luck for your appointment next week, hope you get the help you need.X

  • Thanks misty have started tapering steroids today going for drop of 2.5mg a day will drop again in 5 days time and see how I go Alan

  • Hi Alan

    Best of luck tapering the steroids , you've got a good plan there.


  • Thanks misty going to go with the flow and see what happens.Alan

  • Thanks 6161 have got plenty of prednisolone tabs but do need to get off them as are starting to cause side affects.they wanted me to start tomorrow but because drs is only over the road and there will be no one there until Tuesday going to start reducing on Monday.if there are any problems they can then come over and scrape me up off the floor again.i really hope this plan works because I want my life back.seem to have spent last 7 weeks at drs, eye hospital, or A&E. I wish you luck with your appointment next week .thanks Alan

  • Hi Alan don't won't to confuse things even more for you but my rummie took me off amitriptyline,because of my sjorgrens which I know you have ,it was great as a muscle relaxer and I slept beautifully at night and I miss that greatly haven't had a decent nights sleep since I came off it ,I have been put on duloxtine instead the pain is much better but I am still suffering with fatigue and breathlessness and walk at a very slow pace now, not a pocket rocket anymore which is still one of my real frustrations it takes me so long to do anything Good luck. Chris

  • Thanks Chris I really do hope this plan works ,maybe I might even get my tears and saliva back.i don't know if this is possible. I hate having to put drops in my eyes 6 times a day and sipping water and chewing gum all do you cope with this? alan

  • Hi Alan I find it really frustrating all the things I took for granted , and being femail I can honestly say I can be quite vain and I hate wearing glasses and I can't wear my contacts anymore I am hoping when I eventually see eye specialty they block my tear ducks which the rummie has recommended but I have been waiting since March haven't had an appointment through yet and am quite fed up coz they won't put me back on Hydroxychloquine type drugs till I see him or her and the fatique drives me up the wall I have put a good 2 /. 3 stone on in weight I was quite tiny 3 years ago I feel huge now I am even considering getting a mobility schooter so I can take the dogs out myself ,when I mentioned this tonight to my son he burst out laughing down the phone , I am only in my early 50!'s and was a high heels type of mum which I think he kind of liked when I wasn't being a bit of a tom boy , I think I told you before my dad was a bricky like you if anybody called him a builder he would say no he wasn't he was a bricky but he also raised me on his own and when he suddenly remembered or noticed he had a daughter when I was about 14 he made me go to good grooming classes and my bike and balls were taken away and dresses were bought and dance classes instead I was not a happy girl .LOL although before he died I did take him out kite flying so he didn't really win sorry rambling and smiling . Hope you feel a bit better get back on topic have you asked about tear duck block ? They are supposed to be really helpful and yes I hate gum but it's better than the mouth spray and brushing teeth drys out mouth even more and we mustn't use mouth wash as the alcohol in that isn't good for mouth either . I like you want my body to work like its suppose to but I expect you have been told you have to be more accepting of how things are (that's when I get mad they don't realise what it's like ) someone said to me oh you have lots of little things wrong with you it's not that bad then , the trouble is it's the little things in life that make the difference isn't it . Chris

  • Thanks for your post Chris I am going to have to be very careful with this treatment idea because pred is the only immune suppressant in the mix. I don't like the sound of it at all but I can only think they r going to try and get the pred down to a dosage I can manage on until I can c other specialists .fingers crossed .Alan

  • I've put about 3 stone on too and found it strange as I barley eat don't feel hungry ,I have had to resort to mobility scooter as I wouldn't trust my self to drive not knowing when a shooting pain will go up my back or down my legs I'm only 44 ,had to get a new scooter yesterday ( invacare lynx from able would £449 nice and nippy) as my other one was struggling with my weight hope this helps,my Lilongwe lill days are long gone too lol xxxx

  • But I'm still not sure why it is considered a good idea to reduce the steroids if your symptoms are still present. If at all, I'd have thought an increase in steroids might be more appropriate in the circumstances.

    I probably don't have all the facts.

  • Hi purpletop don't understand it myself but they have to get me off steroids as they are causing multiple glandular problems was told 2 days ago that I now have steroid related diabetes.will only drop as far as pain relief will allow me to.might be able to get through on lower dose of steroids while waiting to see other specialists regarding dry eyes and mouth arthritis in hands etc have to suck it and see thanks Alan

  • Just read this and had to add, autoimmune diabetes exists too. So hope they know for sure which it is before stripping you of your meds.

  • Thanks 6161 blimey what other autoimmune diseases are there. Alan

  • Hi Alan55,

    I can truly sympathise with your experience as I have no definitive diagnosis, fortunately my Rheumie is treating my symptoms.

    I can understand why your Dr's want you off pred, what I don't understand is why they haven't prescribed another immunosuppressant to facilitate it!

    If your symptoms are anything like mine then codeine won't make a difference to the pain. I find amitriptyline helpful to improve my sleep but it does seem to give everyone a very dry mouth which won't help your symptoms.

    I am not familiar with your whole story but keep on pushing for answers. If you have a number of symptoms overlapping a few auto immune disorders it may be worthwhile asking for a referral to a multi disciplinary vasculitis clinic. There are a number in England and 1 in Scotland. They are used to seeing the whole spectrum of auto immune illness, the clinic at Addenbrookes is for Lupus and vasculitis.

    Good luck and I hope you manage to get effective treatment soon.

    Best wishes


  • Thanks Keyes can not understand it myself but will monitor the situation myself. I saw this so called rheumatologist horrible arrogant man on the 9th of May ,I had reduced my steroids on the 3rd of May by 5mg as my gp instructed, the rheumatologist came up with this plan and now my gp is acting on it. On 10th of May I had a flare up of my symptoms (probably down to reducing steroids and the stress of seeing this horrible man) I ended up in A&E .on the drs report from This it says observed symptoms of arthritis in hands and on examination of eyes anteria uveitis bilateral was seen. This is inflammation of the eye and automatic referral to rheumatologist.i cannot believe my gp has not seen this report as I have a copy. To be honest after having various symptoms on and off for the last 21/2 years this latest flare being my worst yet I am starting to wonder what my gp is doing.if after reducing steroids my symptoms take a turn for the worse I shall just have to pay to see a specialist privately otherwise I can see no end in sight.Alan

  • I'm on 40mg tapering down by 10mg weekly . Am on 30mg at the mo and by the time I get back to my usual 5mg, I will be back up on 40mg again.

  • That's a big taper 6161 I was going to ignore the dr and taper by 10 percent for 5 days so take my dose down by2.5 mg then do the same again as I read this was the best way to do it .i maybe wrong but think I will go this way. Many thanks,Alan

  • It is the best way Alan, but being conscious about weight issues, I like to get it over with. Of course it is what I am told to do, but have done it your way many times.

  • Thanks for that 6161 just took my first amitriptyline an hour ago feel quite strange and going to say goodnight now. Hope everybody on this great forum have a great pain free sleep. Thanks ,Alan

  • Me again, sorry, my Gdaughter, was pestering me, whilst replying. I know you've gone to bed, so hope you get this in the morning.

    Slowly, slowly, is the best but these Drs, like to get you off them ASAP. Often the last, 10mg down, will be in the smallest reductions. As daft as my opinion regarding weight issues for myself, of course, well-being is more important. But after many years of this roller coaster life, and never getting as many highs as I do, lows, my weight is the only thing I feel I can control. As for yourself, if the steroids are having adverse effects for you then, even more so, should your GP be hassling the consultant. It seems as with most of us that, you are already learning more about your own body responses, than the, 'experts'. Nothing you have considered is dangerous or likely to harm you so, go with your gut feelings. Hope you had a better nights sleep with amytripline. I have sjorgrens and still take it, but for some, it is too much, as it can make you even drier.

  • Hi Alan

    Just a note about the steroids as I'm trying to reduce mine and it's proving difficult!. You might find reducing by 5 mg ok to start as your on such a high dose but when you get to a lower dose you might find doing it by 1 mg over a longer period of time is better, it's kinder to our bodies!. I've found this. This way you'll find out if your high white cell count is your illness flaring or an infection. It's impossible to know!. Best of luck when you start and hope you get your Consultant appt soon.

  • Hi Alan - feeling for you + vvvv grateful to you for asking this question: you've got some grrrrreat replies! Which are v helpful to me experience of pred matches up with misty14's advice: slower taper reduction, for the very same reasons misty is giving. So far my tapers have been low dose (10mg dropping by 2.5 per week, over 4 weeks) and vvvv effective. But my consultants have prepared me for longer, higher dose tapers.

    I have a v experienced long-time lupus patient microbiologist buddy who insists slow is THE way to taper if your symptoms are bring tricksy. She advised me to be prepared to reduce by 1mg per week if my body reacted too much to the 2.5mg. So, my feeling is that these tapers are a "suck it & see" matter...which, basically, I think, fits with the replies you're getting.

    I also agree with these comments re amitriptyline: I've been on 20mg nightly for 2 yrs which is a relatively low dose, but, even so, has helped me level out my sleep patterns greatly (although I'm given amitriptyline for chronic pelvic girdle pain control....which the pred tapers & daily mycophenolate seem to help better).

    Sending you every best wish...hope you'll let us know how you get on

  • Hi Alan, I've been on prednisolone since 2007, hav got down to 10 mg, and have been told a very high chance I'll b on them 4 rest of mi life but wiv out them I'll hav no life so we as sufferers can't win just plod on iz best way of explaining it.

  • Thanks garykeanu have started my pred tapering today have reduced by 2.5mg going to reduce again in 5 days time ,will see how it goes .Alan

  • Is pred damaging your body. Is pred helping you? I used to take hydrocodone for pleurisy pain, now battle it with pred. My body is not harmed by.prednisone. Bone density test came back normal after 13 years of heavy steroid use. Tried covering up symptoms with pain meds, I would rather battle this where it hits. INFLAMATION. Been through useless docs who just wanted me off prednisone.I must be the only person alive, that it does not harm, but helps. If you were to go off pred, from 40 mg, a reduction of 5 every 5 days is to fast and yes very dangerous. I whittled mine down by 1 mg every week. If it hurts, what are they trying to accomplish? Making them selves feel better. I have a GP now who has RA and completely understands these flares. About a year ago, I fired my rheumy and found this GP. I personally want a doc that works with me, not against me!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Sorry just read what you are battling. I have been on pred since 2001, as high as 80 mg, as low as 2 mg. Most of it on the high side. Good luck and gentle hugs.

  • Thanks MamaDawn have started reducing pred by 2.5mg ,see how it goes, got to be honest have not got much confidence in my gp anymore .Alan

  • I will be praying for your success. Just boosted mine up to 80 mg (with docs approval) to get on top of terrible flare.

  • Hi MamaDawn, I hope flare settles down very quickly. Been in pain now close on 8 weeks and still very sore .putting drops in eyes is nuisance as well .have to drop my steroids very carefully and wait for apps with specialists .take care,Alan

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