A brief question on corticosteroids: Hello everyone... - LUPUS UK

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A brief question on corticosteroids

Lotar profile image
15 Replies

Hello everyone,

apologies if this post is somewhat irrelevant, I've been looking around here for somewhere to post a questions I have about a drug called prednisone. I decided to post in this group as I understand prednisone is sometimes used to treat lupus, and so people here might be able to give me some advice.

So here's the deal: I've been feeling pretty sick for about three weeks now. It started with a battery of odd symptoms that arrived very fast, including headache, back pains, tingling in my hands, feet, arms and legs, abdominal pains, mental disorientation, excessive thirst and excessive urination. I was very worried that I was seriously ill with something like meningitis or was having a diabetic episode (I am not know to be diabetic). I went to my doctor and he sent me to the local hospital, where they performed blood tests, urine tests and an abdominal X-ray, and the results said I was basically OK, apart from a bit of constipation. Which was great, but I was still feeling pretty bad. The doctor at the hospital told me to modify my diet, and that should sort the constipation out. Sure enough, I stayed away from red meat, wholegrains etc, and even had a bout of diarrhea, but after that the abdominal pains subsided. Still, I continued to have pains in my back, which are quite bad, as well as the tingling in my arms and legs.

I felt OK for a few days, before developing a severe cough, with lots of thick, yellow sputum being produced. I could hear a crackling sound in my chest when I lay down in bed, feeling the mucus moving around. Eventually, the coughing became so bad that I lost my voice completely. I returned to the doctors, where I told him I suspected a chest infection of some sort, maybe bronchitis or pneumonia. The doctor performed a very, very brief examination and concluded that I definitely didn't have an infection and it was just a bit of laryngitis, so he sent me home with a prescription for some painkillers (a stronger form of ibuprofen), and a mild steroid inhaler spray, called Budesonida, I think. The painkillers were good, my back pains and the tingling in my hands and feet went away, but I was still coughing up tons of mucus, and was still without my voice.

Today I returned to the doctors for another appointment to explain that my voice is only just returning after almost two weeks. Now, this is the thing I want to ask about. After meeting my doctor several times with plenty of unusual and distrubing symptoms over the past few weeks, I had not been prescribed anything that I thought was particularly effective. Especially since I didn't think he was considering with dealing with my cough and chest mucus, which is of course the reason why I have laryngitis in the first place. He was, and is, insistent on simply treating the symptoms of my illness. What was strange today, however, was that he decided to prescribe a very strong steriod to deal with my laryngitis, after being fairly reluctant to give me any serious medication. He said I should take 30mg of prednisone twice daily for four days, and then go down to just once per day for another four days. He also prescribed omeprasole to protect my stomach from the steroids. I went home and took the medicine then went to work.

While at work, I started to read more about this drug, and I was shocked at how many horrible and serious side effects there are. The doctor didn't mention anything about this, he prescribed it like he was telling me to take a couple of paracetamol. As the day went on, I noticed my throat and chest felt great, my airways were wide open, I could breath easily and I wasn't coughing so much. On the other hand, I started to feel very light headed, my eyes started to feel strained, and my back pain came back right away. The back pain has been with me all day, and is worse than before. I also noticed myself feeling a bit disorientated, constantly tapping my feet, sweating from my thighs, scratching my head every few seconds. My legs also feel very weak, and stiff. It's like I felt bad from my toes to my back, great from my back to my nose, and not so good from my nose to the top of my head. I still feel good in my chest and throat, and fortunately the fidgeting and sweating has gone, but I'm still stuck with my back pains and leg pains.

So here I am now. I'm going to have dinner soon, and then I need to decide if I am going to take the other dose like the doctor suggested. I really, really don't want to though, as I think the dose he prescribed sounds very heavy handed for a bit of (improving) laryngitis. I don't want the weird disorientation to disrupt my sleep like it disrupted my work this afternoon. Also, I understand that you can very easily become dependent on prednisone, as it can effectively shut down your adrenal glands if you get too much corticosteroid from the drug (another reason why I am concerned about my back pain, with it being around my adrenal glands).

So my plan at the moment is to take half the dose the doctor suggested. I'm not usually one to go against the doctors orders, but I've never, ever, been prescribed such a dodgy drug like this. I was planning on just taking on prednisone in the morning for four days, then go for half a pill for the next four days. I would hate to end up dependent on some horrible drug just because I wanted my laryngitis to go away. If the doctor had told me what prednisone can be like, I would have taken my chances with over-the-counter painkillers and rest. So what I would appreciate is some advice on using this drug, and if you think it is at all wise (or at least not entirely stupid) for me to reduce my dosage.

Another question is this: will I be OK drinking a few beers after taking prednisone in the morning? I wouldn't mind a couple this evening after a long week at work, but I don't want to end up in any trouble because of it. My doctor didn't mention anything about avoiding alcohol, but he knows I often have a couple of beers most days. The information with the pills also said nothing about alcohol. However, on the web, there have been some strong suggestions against having a drink when on this medication. I understand that while prednisone doesn't react with alcohol, prednisone does take its toll on the liver and kidneys, and alcohol on top of that can cause problems for those with liver and kidney problems. Now, the doctor at the hospital said the X-ray and my blood and urine tests suggests all my organs are in great condition, however, I'm a little paranoid with my lower back pains starting up again, in case they are kidney related. Any advice on this would be much appreciated.

Thanks to anyone who reads or responds, and apologies if this is irrelevant, but I would feel better with some advice from those who perhaps know more about this temperamental drug than I do.

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Lotar profile image
Lotar
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15 Replies
AnnNY profile image
AnnNY

As far as I know, all those horror stories about prednisone are for long term use. Prednisone is used frequently in these short bursts. So I do think you are worrying ways too much. You might be a little hyper until your dose goes down. I also tend to feel more pain the first day I take prednisone and great the next day. Although mostly I have used prednisone for my connective tissue disease. I was given it for a sinus infection once. But a few days on prednisone is unlikely to do anything bad to you, although if you do have infection, if may just make you feel better by reducing inflammation, but not help the infection.

Good luck.

Lotar profile image
Lotar in reply to AnnNY

Thanks for your response,

I'm glad to hear that the long term use appears to be where the problems are. It's just I've been ill with some mystery illness (I've had tons of symptoms, but no diagnosis beyond laryngitis, which itself has resulted from my other problems). I wouldn't say I was so much hyper as disorientated. As I said, I feel much better now, as I think it has worn off somewhat, although the positive effects still seem to be with me. I was reading that doctors aim to get the desired result with the smallest possible amount of prednisone. As I'm feeling OK now, do you think I will be OK without the second dose? Part of me is thinking, since it seems to be doing its job by reducing the inflammation in my chest and throat, I can be justified in decided to reduce my dosage myself, since it's clearly working, and I might as well not subject myself to the side effects. Also, all the things I read advising against reducing one's dosage I interpreted as advising against swift withdrawal, but of course I've just started, so that shouldn't be an issue. I'd rather stay at a lower dosage than run the risk of hurting myself by going for a strong one. From what I have read, 60mg per day is pretty heavy, which is another reason why I'd be happier not going above 30mg per day. But I am still a little disturbed that I needed to find all of the out myself, after the doctor had been so unconcerned about my illness, and then suddenly prescribes a really harsh drug, without mentioning anything about this. He could have at least tried to reassure me and say that while prednisone can be dangerous, I should be OK for just a few days.

I did ask my doctor about my chest problems and all the mucus, but he said it was also just inflammation. However, this seems somewhat circular to me - my larynx is inflamed because I have been coughing, which according to the doctor, the coughing is caused by my bronchial tubes and mucus mebranes also being inflamed, which is caused by the larnygitis, and so the cycle goes. However, I don't mind a bit of extra symptomatic relief, as I wouldn't mind getting my voice back.

You said you sometimes take prednisone for your connective tissue problems - what kind of dosage do you take? And do you ever drink alcohol after taking it (obviously not right after, but as in on the same day)? Obviously I don't drink so much as to require a beer every day, but it feels a bit miserable on a Friday evening not winding down. Also, I wouldn't want this stupid drug to interfere too much with my social life. While I am a frequent drinker, I hardly ever drink to excess, I usually just have a few beers, so I don't think I will have any risk of overdoing it. But with prednisone, I just don't know what to expect.

Anyway, thanks ever so much for your response, I feel a bit more reassured now.

AnnNY profile image
AnnNY in reply to Lotar

So, your doctor said 60 for 4 days, then 30 for 4 days?

As far as I know 20 is the highest I have ever taken. I have had 5 day courses of high dose, going down every day--poison ivy, sinus infection. For lupus I have had 20 for 4 days, 15 for 4 days, 10 for 4 days, and 5 for four day. Lately I've been on 7.5 for a couple of months, now 5 I guess for a couple of months.

I don't want to contradict your doctor, but no wonder you feel a bit odd on 60. I'm hyper on 20, but I feel very good on 15.

AnnNY profile image
AnnNY in reply to AnnNY

I don't know why they say not to drink. Maybe it's because of the stomach irritation. I don't drink much. Never more than a glass of white wine, but nothing bad has ever happened to me.

Lotar profile image
Lotar in reply to AnnNY

Thanks again for your response.

Yeah, I agree, 60mg seems like a lot. In the end I decided not to take the second dose, so I've only had 30mg today. I don't think this decision was too foolish, as the symptoms of my laryngitis have improved a lot today, and I didn't exactly feel great this afternoon, plus my back pain is still present. I think I'll try to take the doses when the doctor said I should, but just half the amount, so tomorrow I'll take 15mg in the morning, 15mg in the evening, do the same for two more days, and then just do 15mg in the morning for another four days. I hate over-ruling medical professionals, but as I said, from everything I can see, his prescription was very heavy handed. I can't complain too much as my laryngitis has improved a lot since I took just one 30mg pill this morning, but even that felt a bit much in terms of the funny feeling I had all afternoon.

I had suspected that the non-alcohol suggestion was related to the stomach complications, in which case the omeprasole should keep it at bay. As I said, my doctor knows that I drink beer frequently, but not excessively, as he asked me all the usual general health questions when I registered, but he didn't warm me not to, and there's no mention of alcohol at all in the information leaflet that came with the drugs. That said, the doctor also didn't mention the long, long list of potential side effects, so naturally I had wanted to get at least some confirmation that it will or won't be OK.

Thanks again for your advice, it is really helpful to hear from someone with some experience of this drug.

Fighting profile image
Fighting in reply to Lotar

Evidently, few doctors look for the cause or the root of the problem. They seem more and more like the car mechanics who make a guess, provide a fix and hope you don't come back. When you do come back they make another guess and provide another fix. This after 2 hospitals, a nursing home, and an internist kept feeding me salt tablets. The salt levels in my blood kept dropping. Those salt tablets are horrible horse pills. More hugs Lotar

Have you considered speaking to your pharmacist?

ripon1756 profile image
ripon1756

I wouldn't touch Prednisone with a barge pole but then I'm allergic to it as it caused me AVN which resulted in me having 2 hip replacements. I was only put on the steroids for a very short while for an overactive thyroid gland problem and 20 years later I was diagnosed with AVN.

Fighting profile image
Fighting in reply to ripon1756

I never heard that AVN was an allergic reaction to Prednisone. I have heard that it was an unintended consequence. ( iatrogenic) I have you beat with 2 hip replacements and 2 shoulder replacements. One hip has been revised. Life is fun.

lfu2 profile image
lfu2

Hi Lotar, Prednisolone has had a bad press but I wouldn't be without it. I have been taking it for about four years now. I started off with 60mg which was quickly reduced down to 30mg. I have had a very gradual reduction and I am now on 10mg. Any flares or pain/inflammation that I have had, has resulted in an increase to 30mg each time for possibly 2 weeks, and then to carry on my normal dosage. If you can control your pain with only 30mg, then that's brilliant. Doctors tend to swamp your system with steroids in order to gain control over the symptoms. I would request to be referred to a consultant as GPs, brilliant as they are, do not have the experience for dealing properly with your condition. As for drinking with prednisolone.... no worries. I have never had any reaction with alcohol. Just treat it responsibly. Like yourself, I also enjoy a few beers and regular intakes of wine.... as I said... no problems. Hope this helps.

Fighting profile image
Fighting

A friend of mine has frequent sinus infections and she is prescribed prednisone the way you were prescribed it. Apparently, when the first antibiotics don't work, Doctors prescribe a brief course of prednisone.

I'm very surprised that it can shut down the adrenal glands as mine failed, shut down, in response to being taken off of long term prednisone. I had been on a low dose, prednisolone 2mg per day. The rheumi thought I could come off it. NIGHTMARE. Just about any drug tells you to avoid alcohol, concern about liver and kidneys. I drink occasionally. I'm just not willing to eliminate everything listed in the warnings. Long term prednisone use primarily affects the bones. Hope that you do not have to take it long term. It is not in the class of drugs that can cause addictions. Putting anything into my body can frighten me. It sounds as though you are also like that. Hugs Lotar

Rudeforth66 profile image
Rudeforth66

Hi, I have been on prednisilone for the past 8 years. I have severe rheumatoid arthritis. I am now on maintenance daily dose of 7.5mg. As with all drugs even aspirin there are side effects, and whilst you need to be aware of these, the side effects occur rarely, and seldom do you get all the side effects mentioned. Because I have used pred for many years I am regularly monitored and have annual dexa scans. Without pred taken in conjunction with my other meds I would be unable to walk, use my hands etc, my RA would be so much worse. I have with my Consultants knowledge tried to reduce my doseage, but cannot function when I drop below 7.5mg. Yes there are side effects with prednisone but the benefits certainly outweigh the side effects. You have been prescribed the usual high to decreasing dose as a short term measure to bring your symptoms under control. Unless the side effects are too terrible to bear, finish the course. If they are unbearable, go back to GP immediately, you should never just stop taking prednisone without your doctor's knowledge. When taking prednisone you should avoid alcohol. If you Google prednisone avoiding alcohol is top of the list. Sorry but you should give your daily tipple a break until you have finished your course of steroids. Hope this has been useful, but try not to delve too deeply into side effects of drugs as they all do have side effects, ask yourself if you are better with or without the drug. I know which I would choose, without my cocktail of drugs and infusion treatments I would still be in a wheelchair, dependent on carers,they may shorten my life span, who knows! but I will have had quality of life as opposed to quantity, but we are all different, hope you get sorted soon.

Lotar profile image
Lotar

Thanks again for all the comments, this has been very helpful. Apologies for not replying sooner also, I was busy yesterday.

I agree with the comments that explain how useful it is, I've seen first hand as my laryngitis symptoms have improved greatly. It's just that I think the dose prescribed seems very heavy, given that I was already starting to get better when I saw the doctor. Also, it's not a long term condition, I usually have no problems at all with my throat, it's purely because of this bad cough I had that I managed to make myself so hoarse. I don't have asthma, arthritis, lupus or any of the other conditions which prednisone is often used to treat (at least as far as I know), so I'm really not expecting to be taking it for very long. I appreciate the comments from those who said how useful it has been over the years, but I hope you can see that I don't want to end up with any long term problems just for what would seem to be a fairly innocuous problem (the more disturbing symptons I had a few weeks back, before the laryngitis, have somewhat subsided).

With regard to taking a reduced dosage - again, I appreciate the comments which said that I should observe the course prescribed by the doctor, but from everything I can see, this has not been a bad decision. Yesterday, for example, I took 15mg (instead of 30mg) twice during the day, and felt fine. My laryngitis symptoms were much improved, and unfortunately I did feel a bit of back and leg pain, but it was not nearly as bad as on Friday, and I didn't feel any problems with my eyes or any disorientation. Of course, I agree it is dangerous to stop taking prednisone suddenly, but as I only started on Friday, I shouldn't be in a regime where my adrenal glands are getting lazy, so I shouldn't feel significant withdrawal symtoms, and I also intend to taper the dose like the doctor suggested, I'm just planning on taking half as much as he said in the first place. From what I can see, this can't be any worse than not taking it at all, in which case I'd just have to get better with time and rest.

With regards to alcohol: thanks for all the responses, it's good to hear both sides of the argument. I did have one beer with lunch (about 4 hours after taking 15mg) yesterday and I didn't feel any problems at all, so hopefully I can enjoy the odd drink over the next few days without too many problems.

Thanks again for all your responses, this has been very helpful, and please, if you have any further advice or comments, feel free to reply.

Purpletop profile image
Purpletop in reply to Lotar

The natural steroid level in our bodies is approx 7.6mg per day - it is secreted by our adrenal glands. When you hit the adrenal glands with a high dose of steroids for long periods (more than 5 days) the adrenal glands believe their input is no longer needed and they stop.

That is why a steroids course that exceeds 5 days in length needs a tapering period, I.e. reducing dosage progressively over the next few weeks. It is slightly concerning that your doctor put you on 60mg per day for a week, then taper to 30 mg for another week. Then what? You can't stop steroids at 30mg if you've taken it for longer than a week, you will need to taper that off with maybe another week at 20mg per day, followed by another week at 10mg a day and finally a 5mg a day.

As for the dosage - I suspect your doctor was concerned about all the inflammation and wanted to make sure that it is stopped quickly. If you are uncomfortable with the 60mg, then reducing it will probably mean a longer time to recover.

I'd be more concerned about the short tapering period.

Lotar profile image
Lotar

Hello, thanks for the response,

I think I might not have made clear what the doctor prescribed me to do. He said I should take 60mg per day for four days, then 30mg per day for another four days, so I would only be on prednisone for a total of 8 days, which hopefully won't be too long to cause adrenal problems. So as I said, my plan at the moment is to do 30mg for the next two days, (as I've already done two days on 30mg) then go down to 15 for the next four days, hence I planned on following his timetable, but simply halving the dosage. I was actually thinking of tapering a little further, i.e. maybe do two more days on 30mg, then two days on 15mg, and the last two days on 7.5 mg. I don't know if this is a good course of action, but hopefully it is understandable that I don't want to get into further health problems because of some laryngitis which was getting better before the prednisone anyway.

I agree that my doctor wanted to try to "blast away" the inflammation, hence the overly strong dosage. I'm glad I am receiving some agreement that this dose is stronger than what is really appropriate.

I also agree that my laryngitis will probably improve faster if I stick to the higher dosage, but it isn't worth it if my back pains and leg pains get worse, and I run the risk of adrenal problems. I was reading that doctors usually like to weigh up the benefits and risks when it comes to using oral steroids - from what I can see, using anything more than a small dose for a few days would increase the risk beyond having to put up with my laryngitis for a bit longer. I'd take the laryngitis any day, to be honest.

Thanks again for your response.

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