I'm quite new here, to all this. I've been on hydroxychloroquine, colchicine, and salagen for about 8 months and was doing great and then I hit a brick wall, called my Dr and he put me on short corse of steroids, in a few days started feeling better and about a week I got back on my feet and was feeling good again. I stopped the steroids last Wednesday and now I feel like poop again and on top of that I've got a sinus infection. Please, any advice would be helpful? I want to call my Dr and beg him to put me back on the steroids.

17 Replies

  • Hi loopy droopy

    Sorry to read your not feeling well again after improvement with extra steroids!. Could I just ask you say you stopped the steroids yesterday, did you come down gradually or stop in one go!. Hope you did it gradually as your body needs to get used to less slowly. If you didn't it might explain how you feel!. You might also need antibiotics for that sinus infection so a visit to GP could be good!. Steroids make you very prone to infections which is probably what has happened. The highs and lows of being a lupie!. I see you take colchicine, hope it's helped your chest like it has for me!. Maybe that dose could be increased for a short time to improve symptoms?. I hope you feel better soon. X

  • Thank you for your response. I was on 10 mgs/ day for 7 days and it was Wednesday a week ago I came off. He explained that I wasn't on them long enough to taper off. I had no adverse reactions coming off. I am on antibiotics for sinus infection but I still think I felt much better on the steroids over all. I felt better on them than I have in a while. "Normal".... do I dare say that word?? Lol!!! 😜

  • How long and what dose?

  • 7 days 10 mgs/day

  • Shouldn't have caused any problems either needing tapering or suppressing immunity, not long enough or high enough.

    If you have inflammation hanging around anywhere, pred can make you feel human. The trouble is, so many doctors are terrified of using them. I have been on pred for nearly 8 years (not lupus and it is the only drug that works) but I do know people who are on a low dose long term because it manages their symptoms better. Which is all any medication is doing in autoimmune disorders.

    If I were you, I'd discuss some longer term use with my doctors. They may be willing to try 5mg which is a really low dose and can be used long term.

  • Hi PMRpro, this is interesting as my gp absolutely hates steroids, she gave me a 5 day course of 20mg last July but I had to beg her for them and she told me that if I felt better on them not to ask her for more as she wouldn't give them to me!

    I saw my rheumatologist on Tuesday and he has suggested trying a long term low dose 5 or 7mg of Steroids, I'm on Plaquenil but still feeling ill everyday with overwhelming fatigue, joint and muscle pain and many other symptoms, he said I don't need stronger immunosuppressants at this stage, he was going to give me an injection of depomedrone but I'm having a colonoscopy soon so told him maybe I should wait until after that so I've got the prescription for it and my gp can give it to me, but I know she will be against giving me steroids. My concern is the 20mg a day made me very drowsy so I'm not sure whether to have the jab in case it wipes me out or start on tablets, at least with tablets I can stop if there are problems. I would love to feel human again!

    Have you had many side effects with your long term low dose?


  • Hi Diane

    It's good your Rheumy wants to put you on a low long term dose of steroids to help your symptoms. 5 mg is regarded as the safest everyday dose now. I think you've made the right decision to try tablets rather than the injection for your colonoscopy coming up, want things to show if they possibly can!. Overall the pills may help your symptoms anyway regardless !. I take 8 mg steroids at the mo and don't get any side effects like drowsiness so hopefully you won't either and will feel better soon!. Good luck for your colonoscopy. X

  • Hi Helen,

    Thank you so much this is really helpful, I feel quite nervous about the whole steroid thing especially as I'm facing a gp that hates giving steroids even at low doses, but you know I'd try anything now, I won't be starting them until I've seen my gp in three weeks time after my colonoscopy, the idea was to have the jab first to bypass my stomach because of my dyspepsia and if I got on ok with that then go on the low dose tablets but I'm wondering if I should not have the injection in case of side effects and just start with the tablets, this is what I need to ask the dr but I know she'll be against it, what do you think?

    I hope you're doing ok Helen?


  • Are you in the UK? If you have gastric problems ask for the enteric coated or gastro-resistant form which pass through the stomach and are absorbed further down. It saves taking a PPI to protect the stomach. Your mingy GP may try to tell you they are more expensive - that has nothing to do with the price of bread and they are now cheaper than plain plus the PPI.

  • Hi Diane

    Great advice you've had from PMpro about having the Gastro resistant tablets as I was going to ask you about taking a stomach protector! I think I'd go for the injection as there's less risk of side effects and you would get the benefit quicker which is what you need. It's good you'll be doing this after the colonoscopy and then can take the tablets as a top up!. I've had those injections without problems but maybe I've been lucky!. Your GP sounds even worse than mine re steroids!. She should be used to dealing with them as asthma cases need higher doses in primary care. My GP doesn't like them but prescribes when necessary and is fine for me when there is need!. I do agree with PMpro also that in some ways you need a GP who canput her own prejudices aside and prescribe when necessary!. It's not helpful to you her attitude you need her help!. I'm stuck on 8 mg daily at the mo , flarey after a virus!. Need to get to below 7mg ideally!. I've got my Gastro review on Monday. Hoping he'll be ok that I've only reduced 2 mg in two months!. We can spend our lives worrying about the side effects!. Hope I've helped more and best of luck with it all. Keep us posted and have a good weekend. X💐

  • You definitely have helped Helen, thanks so much for all your advice, its good to know others experiences and you're absolutely right about gp's.

    Sorry you've had a virus and a flare, I hope you recover from that soon and hope your gastro review goes well on Monday.

    You have a good weekend if you can too.

    Speak soon

    Diane 🌺😘Xxx

  • Luckily a consultant recommendation overrides a GP's unreasonable dislike of something - and it would be enough for me to find another GP to be honest. I do know someone who had a similar problem, the GP refused to give her a continuation of the script - which once you have been on pred at the dose she was on for more than a month is downright dangerous. We told her to contact the rheumy - who was utterly furious! It is nothing to do with the GP - if the stuff gives the patient their life back, that is the best you can hope for with autoimmune disorders that can't be cured!

    I was originally out on 15mg prednisolone and had few problems - but then, the relief of the symptoms I'd had for 5 years balanced everything else out anyway! I didn't gain any more weight but the weight I had already gained through inactivity rearranged itself to midriff, face and back of the neck. I never managed to get below 9mg without a flare but otherwise I was fine. Then I moved here to Italy where they use oral methylprednisolone - and I detested it from day 1 but there was no choice. I developed side effects - weight gain, my hair and skin went mad and I had a BEAUTIFUL black beard! And it didn't work, even 20mg at night left me in pain until after lunch. My GP suggested we try the only other option here, a special and expensive form of prednisone called Lodotra which you take at night and it releases in the early morning - and it was magic. Immediate pain relief on 15mg and I was able to taper to 5mg without any problems, I lost all the weight and more (although I also cut carbs drastically) and my skin and hair went back to normal. I've had a flare but am back to 7mg now - no side effects I can identify. No long term side effects - no cataracts, no diabetes, no changes in bone density.

    7mg is about the same amount of corticosteroid your body makes naturally in the form of cortisol - and while you are taking pred your body makes less so the level stays about the same. Side effects are due to the EXCESS - so a long term dose of 5mg or so shouldn't cause any significant problems.

    To be honest, if I had the choice I think I'd plump for oral over injections providing you don't have stomach problems that might interfere with the absorption. My granddaughter has severe asthma and was put on injections of methyl prednisolone at one point. Granted they were a much higher dose than you are looking at, but her side effects were bad, far worse than she had had with the same oral dose of prednisolone. It starts higher and then tails off over the following few weeks. With the oral form you get the benefit in a couple of hours and it stays relatively steady - and if there is a problem at that dose you can stop, try a bit more or less and adjust the dose. But Nome didn't have any problem with drowsiness - totally the opposite!

    Good luck.

  • Thanks so much this is all really helpful and reassuring and gives me courage to face my gp, on the whole she is very good I have been very happy with her it's just this steroid thing she has. Yes I'm in the UK, I do already take omeprazole for dyspepsia and I'm having an OGD in two weeks time so I can also discuss this with the gastroenterologist at the time re my stomach, I think it would be better to start with the low dose tablets, I just hope she will let me do that, I guess it depends how my rheumy has worded the letter, if he says to give me the injection first to see how I get on with that and then the tablets if all is ok then she won't veer from that advice and I'll have to go through the rigmarole of contacting the rheumatologist to get him to write to her and he's only at the hospital on a Tuesday and my Gp only works on a Wednesday so everything takes forever! this is how it is sometimes it's absurd and frustrating! She knows I have dyspepsia so really it should be a foregone conclusion to give me enteric coated but who knows when it's all about saving money! He suggested the injection to avoid my stomach, he said the injection of 120mg depomedrone would give me approx 3-5mg a day for approx 6 weeks but like you say it's having the control with tabs, with the jab once it's in it's in!!

    Your experience of methylprednisolone sounds horrendous, poor you, it really is trial and error isn't it?

    Thanks for your input it's really appreciated 👍🏼

    Diane 🌺x

  • Yes you are right, you don't need to taper when you are only taking steroids for a very short time. I have a friend who has asthma and when she gets a chest infection she takes 10mg for 7 days and then comes off them.

    I was told by Rheumatologist that the magic number is 3 months when it comes to having to taper.

    I wonder if you are still flaring and 1 week was not long enough. I had a flare back at the end of Nov. It took 2 weeks of being on 20mgs to knock the flare on the head.

  • About 4 days on the steroids and I was feeling good. I may have overdone things because I'm hosting a baby shower this Saturday and felt good enough to get caught up on some things. Would my over doing it push me back in to a flair? I just felt so, dare I say "normal". I'm gonna call my rheumatologist tmrw and ask about low dose steroids for a while. Saw orthopedic surgeon today and he started talking methotrexate. Would both steroids and methotrexate be contraindicated? Thanks for talking to me.

  • I totally relate to you feeling 'normal' once the steroids kicked in. And thus wanting to do 'normal' things again - we are only human .....

    When the steroids started to work their magic for me, I weeded 2 veg patches in my garden, weeded all the pots on the decking, and weeded the whole of the front garden - I was in 7th heaven!!

    When I hit 9.5mg (as I do have to taper) then that was when my body said 'hey no way' and I needed to go back to being more sensible again, ie pacing myself. So that may be the case re baby shower.

    Asking your Rheumatologist about taking a low dose steroid may be the option but personally I would be guided by his/her opinion. As you live and learn, ie in my case during a flare going up to 10mg steroid would not knock the flare on the head for me, I need a huge boost for a short period.

    I take MTX (Methotrexate) and Pred (steroid). Many of us do. Or at least we start there and then taper on the Pred. So you would not be unusual and when you read the literature on MTX they call it the 'gold standard'.

    MTX has worked for me and has really helped me when it came to fatigue, but be aware that it usually takes around 12 weeks for it to start working and in my case it solved the joint issue quickly but it took 6 to 8 months to lift me out of brain fog and fatigue.

  • Thank you so much for the info. It sounds as if you understand my situation perfectly. I did call my rheumatologist and he extended my steroids for 10 more days. If at that point I'm still needing something he wants me to come in and get blood work to measure my inflammatory levels and at that point will start MTX. But I don't think the nurse explained my situation correctly. I wasn't wanting the extra steroids for inflammation at this point I wanted it for energy and clear head, which my original call to him was fatigue, swelling and painful joints also but mostly because I felt as if I hit a brick wall. After about 4 days or so I was getting back on my feet some and by the end of the prescription I was feeling pretty great!! So we shall see, thank you for taking the time to talk to me about this. It really helps so much to have someone understand.

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