I've only got GCA-I've done a silly thing I'm reducing following a flare and have been on 10 mg for three days including today. Half asleep took 10 mg at 00.06 this morning and have taken a second 10 mg at 04.16 also half asleep. do I need to do anything? I write the time of my doses when on a chart but omitted to look at the chart before taking the second dose.
Been on Prednisolone for 3 years 9 months
All advice gratefully received
Help
Colin
I think many of us have done similar things. The advice I was given was "don't worry about it, just continue with the original reducing plan"
I think you will be fine Hun x
It’s so easy to do and get mixed up x but you are doing the right thing by using your chart x it will get better remembering it x
I take 60 mg and can’t wait for the reduction to start xx
But please keep going to optictions as we had a support meeting a couple of weeks ago about steriods having an affect on your eyes and it’s the light of sunlight that effects them . So I went and oh dear I have now the start of cataracts through steriods xx I am 53 x
Protect your eyes through either strong sunglasses or prescription sunglasses x I have just got my new glasses yesterday and the are the reactors where they go dark x up to now x brilliant x sorry for going on but it was an after thought as we didn’t have a clue they cause cataracts Xx
I am GCA since Nov 2014. Started at 80mg. Developed cataracts within 6 months. Surgery on both eyes spring of 2016. Now I must have Laser surgery next week as I have developed scar tissue on both eyes, sight is very cloudy. My neurologist thought I might be pretty much done with GCA but the big prednisone doses and long term use put you at high risk for cataracts and glaucoma. I am still struggling with PMR and feel I will never be done with horrible condition.
Please be very careful about your sight and report any changes to your doctor.
I will for sure xx I am so frustrated about it all x as in 2009 I had 12 blood tests one after another and the doctors wrote beside possible ta x
And not one thing was done x no wonder it’s taking so long to break down x
I am furious that doctors ignored the signs and I am paying the price big time with pmr too x
Dear Woodlesmum
I also have the dreaded cataracts. The hospital told me about the one in the left eye but not about the one in the right eye. I only found out about that one by looking over the shoulder of my Nurse Practitioner when I was havingf my CRP blood test and testosterone injection one day. Luckily they are both very mild and won't need doing for many years according to the consultant. I've always worn sunglasses when sun very bright as a coarse fisherman they protected my eyes from the sun's rays bouncing off the water surface. Seeing the damage caused to my skin by the sun during my trips wearing the glasses was a sensible precaution
Best wishes
Colin
Long before pred, I had cataracts in both eyes. Honestly, the surgery wasn't as painful as getting a tooth filled. And the transformation of the world that occurred from the morning to mid-afternoon made even an old cynic like me believe in miracles.
I so agree. Having been on Prednisone for 3 and half years I was only just legal to drive.
All sorts of worried remarks from the Rheumatologist about having them done while on steroids but I found an amazing Opthamologist in Bristol and have recently had them both done. The procedure was painless and the difference is immeasurable. Although I can now see my wrinkly skin and over dyed hair.
The up side is I paid extra for the trifocal lenses
and after 50 years, no longer need glasses.
There is always an upside
.
If it was Middlesbrough mtg then the Speaker is writing an article for the winter newsletter.
When I was diagnosed with GCA, the opthamologist told me I had the start of cataracts, so they had been coming along beforehand.
I also changed my glasses to reacotlite rapide.
5 years on pred and now 6th in remission and they still have not grown at all.
Me: GCA 5 year Remission into 6th.
Yes that was it x he was great x and the support is amazing x
I’ve done it too, even after all this time. When I did it I went down by 1 a day until I got back to my original dose.
Hi Colin.
Don’t worry about it, just get back to normal tomorrow. If you use a dosette box or similar, then you can’t overdose because you’ve counted out the tablets previously.
Enjoy today!
Thanks Sue
When my different meds got up to 14, I designed a chart where I make tick as I take each one. Being half asleep at 00.06 I recorded the time and made the tick. Didn't check the chart before having the second dose which is where I went wrong. I've spoken to "111" and they were quite helpful and have referred me to my own GP as a safeguard. Luckily because I'm coming down from the "flare" I'm only taking 10 mg a day so not too bad. I will watch me today in case there are any unusual symptoms. My GP is ringing back at 09.20 this morning.
Best wishes
Colin
Shouldn’t be a problem, as it’s only one dose. You'll probably just feel more energised today, but don’t be fooled into doing too much, it will be back to normal tomorrow!
It gets a bit difficult when you’re taking lots of tablets at different time.
When my hubby was very ill, I used to sort out his tablets in an evening for the following day, and put them in the little plastic measuring cups you get with liquid medication. That way I was sure he took the right amount.
I know some tablets have days on the foil so it shouldn’t happen, but if you’re taking multiples in a day obviously that doesn’t work!
Sue
I've got a dossette box as well but that is full of the eight paracetamol daily I'm still taking for the pain from the fractured spine bone, the osteoporosis and the lumbar region pain. Thankfully there's no pain from the dodgy liver and the gall bladder. Still don't know what's causing the dodgy liver was thought to be statins and my GP took me off those before she went on holiday for two weeks. The gall bladder I'm still waiting for the CT Scan appointment at the hospital requested a week ago by my relief GP. Next blood test for CRP and liver function is next Tuesday 10/10/17 and I've booked a telephone consultation with my GP on her return from hols. on 11/10/17. I get very twitchy whenever a doctor mentions the liver because that's what killed Janet but lightning couldn't strike twice and my darling had that for 51 years.
I think that's brought you up to date Oh there was one item of good news i managed to buy 2 lavender plants for the garden whilst I was out this morning.
Best wishes
Colin
Might be worth investing in another just for the Pred.
Know where you're coming from about the liver- that got my hubby as well. However, better news - mine was slightly raised when I was on Pred (also on statins) but its back to being okay now. Hope the same for you!
Love lavender!
Dear Sue
I did as you suggested and bought a smaller one this mor ning when I collected some meds. from the pharmacy. Filling it when I got home I could see what a good idea it was as I can see instantly what I'd had. Some of the foil strips on the pills are so difficult to get off. Some of the paracetamol ones especially. Interesting comment from PMR2011 about Paracetamol and the Liver. I'm going to be in a right fix if I have to stop the paracetamol which I've been on for 18 months. I'll ask my GP if she knows of an alternative if the Liver continues to react. I did start out with Paracetamol and Codeine mix but that gave me frightful constipation.
And on that bright note I'll say farewell and best wishes
Colin
Hi Colin,
Agree with you on the foils on some tablets, I find the 75m aspirin a nightmare, dread to think if anyone had arthritis in their hands they’d cope! Trouble, as usual it’s H&S gone mad and able bodied people designing products for those less able.Dont get me started on that🤐 or co-codamol.
Ain’t life grand!
Hi Sue
I've got arthritis in my left thumb and in the top joint of my left index finger that one's so bad that the top joint has started to bend away from upright and I can't use it to type anymore. I leave the index finger sticking into the air and type with my middle finger. i agree that the aspirin silver paper is a real pain and as I prefer to have aspirin loose in a tub I dispense from the foil strips into the tub. So much easier than leaving in the strips. I do have one of those implements to remove pills from foil strips but as aspirin is so small it invariably cracks the pill in half or a fingerful of crumbs. Not very good.
Hope you're enjoying your Sunday.
Regards
Colin
Yes, lovely and sunny, so got washing on the line, and now going to sit in sunshine having a cuppa and doing the crossword - trying to keep the old grey matter ticking over.
I also have done the same thing and inadvertently taken an extra dose. Your extra dose gave you what I am now taking daily having been diagnosed in May with GCA, so no worries.
I did want to caution you tho. If you have liver troubles, Paracetamol is metabolized by the liver and taking lots can contribute to liver issues, so please be careful with that.
Best of luck!
I was interested in the comments about cataracts. I've had GCA for three years and four days ago I came down from 11mg to 10mg pred. I've been there before without problems, but now my left eye is watery and aches. I'm worried, so I mentioned it to my GP yesterday and she said go see an optician. She's probably right, but was very offhanded about it. I mentioned that my left shoulder (same side as aching eye) was very painful. She looked at her watch and said I'd had my ten minutes and if I wanted to talk about my shoulder I'd have to make another appointment. So I have, but with a different GP at the practice.
I've made an appointment with the optician for next Monday and hopefully that will put my mind at rest about eye issues. My mother had glaucoma and I had an uncle who went blind in old age. So now with cataracts possibly on the horizon I'll have a few sleepless nights over the week end. But that's nothing new; pred is the sleep robber!
This might help you with appts. I always asked for the last appt of the day and a double one. It worked.
Hi jinasc. Many thanks for the advice, which I shall take. I recall that when GCA first kicked in, my GP always booked me in for a late appointment. Now the penny drops! He was brilliant, but the practice has reorganised itself and I've lost him. I'll have to train up another GP.
Everyone has done it one time or another. Just go back to your normal dose tomorrow - and enjoy the good day you should have! And don't worry - it isn't an overdose in the normal sense of the word.
Prednisone is a Catch 22 medication. It serves a very good purpose only in the short term.
To overdose you would have to take 100mgs or more before you notice itching, fuzziness in your presence and in some cases severe enough to require an ambulance.
It is safe under doctors supervision to take in an asthma attack 50mg a day for three days and no weening. If necessary to take it for longer then you have got to ween yourself off. Usually by 1/2 dose for three days, then 1/2 25mg tablet for three days, then 1/4 25mg tablet for three days.
In the case of long term use as in years, then I would suggest, in the case of treating inflammation in Lupus, you are going to have flare-ups. If you can have acupuncture during the withdrawal time then it may be of great benefit.
Warning:- Prednisone is a drug that can and will make your bones brittle and can cause your eyes to bleed amongst other side effects. You can look these up online.
Know what you are putting in your mouth.
Ask your doctor if a normal anti-inflammatory will help in its place?
Warning:- If you are an asthmatic you must tell your G.P. as some anti-inflammatory drugs can cause a severe asthma attic that may hospitalise you. Question your G.P.'s knowledge and if he/she seems knowledgeable then go ahead. If not, then question it.
Anyone on long term Prednisone or even considering it, then either get off it (putting up with the flare-ups until off of it, or don't begin taking it unless your doctor confirms it's short term.
Note:- Long term users should ask their doctor for a Bone Density Scan.
Hope this information helps.
Really this info is not relevant in this context.
"Warning:- Prednisone is a drug that can and will make your bones brittle and can cause your eyes to bleed amongst other side effects. You can look these up online."
After 8+ years I have never had an eye bleed and my bone density was unchanged after 7+ years. It is not inevitable as a lot of people on the forum can attest.
"Ask your doctor if a normal anti-inflammatory will help in its place?"
This is totally irrelevant on a forum for patients with GCA and PMR as we all are. Pred is the go-to medication, antiinflammatories are of no use whatsoever in PMR and are unadvisable alongside pred - which is essential for patients with GCA.
"Anyone on long term Prednisone or even considering it, then either get off it (putting up with the flare-ups until off of it, or don't begin taking it unless your doctor confirms it's short term."
Pred is never going to be short term for us - and it is the only medication that provides any quality of life in PMR and, in the case of GCA, reduces the risk of irrreversible loss of vision. It is the determination of some doctors to make pred short-term for us that causes problems.
And I refer you to this study:
practicalpainmanagement.com...
Long term pred for PMR is not half as black as it is painted.
Dear -Lori-el, I am not sure that you are that knowledgable about prednisone. I do think you should be careful of making some of the statements you have made which in my opinion are incorrect and may mislead people, particularly as you are on a PMR/GCA forum for people who take pred long term and it does seem you do not know the excruciating pain encountered by people before they start taking steroids and also the pain they would encounter if they just stopped. There is currently no alternative for steroids if you are diagnosed with PMR or GCA. In fact by not taking them there is the possibility of blindness in some cases.
PMRpro
You are correct that it works. I have first hand seen what it can do to patients though.
My mother fractured her spine just by reaching round for the soap in the shower. and before you say it, the Doctor confirmed its cause was due to long term use of prednisone and she wasn't on it as long as most of you.
It is unfortunate that it seems to be the go to med. Whilst luck has probably played a huge part in who gets symptoms and who doesn't, the fact still remains that in long term use, it's harmful. No matter how annoyed you get with me, it's a given.
I think, ultimately doctors are at some point going to have to look for a new drug to do the same work that Prednisone does whilst not doing the same damage.
I wasn't having a go or telling you not to. I was just saying that long term and especially as you get older, it really can be a bad thing. I understand the flare ups. I am sorry that you took offence at what I said. I really only wanted for you and anyone else that read it to be aware and to communicate with their doctors more about its use and how much and how often.
I hope this will now stand corrected.
Lori-ellen
I didn't take offence in the least - but was pointing out that your comments are irrelevant on this particular forum. Pred is the go-to for all doctors who treat us because it is the only medication that works at all to relieve the inflammation and symptoms. In the case of GCA patients it remains the only drug that reliably stands between them and blindness. And, whether anyone likes it or not, both GCA and PMR are chronic conditions which require longterm medication to provide relief that isn't achieved with anything else. In the case of GCA it is now potentially possible to reduce the pred load using a biologic drug. Which potentially has even worse side effects and is a major financial burden.
God knows - none of us WANT to be on pred. But it is that or disability, even blindness, as an alternative.
PMRpro
I understand all of what you are saying, hell I have to take it. I was just trying to make people aware of what it does outside of the good it does.
After all if we are taking it then shouldn't we make ourselves aware of all it does? Without debate, then where would we be?
You are well informed but what about others that may not be? I've seen all too often people who are not informed who take Prednisone, then have a side effect or two and they say "But why wasn't I told?"
Your informed so I'll leave you be.
Lori-ellen
But the point of this forum is that we DO explain the side effects - and how to minimise them or live with them. If you had met as many people in tears and terrified at the idea of pred as I have you'd understand where I and most on the forums are coming from. We fill in what the doctors don't tell or admit. But all too often we are trying to mop up the damage a doctor has done by telling a patient they must get off pred because it will kill them. There are two sides to every story.
PMRpro
Also, the doses that I referred to about asthma was just an example of how much it can take before you have a reaction or overdose, so not to be worried about the extra 10mg.
Lori-ellen
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