Hi I don’t know if I have asked this question before apologise if I have done
If I could taper down would this slow all side effects down
I have been taking them for a long time but I’m thinking if I could have a good go at tapering down it might help ie with skin problems eye problems artery in lower legs etc the doctors are putting all my problems down to taking steroids
Has anyone else been told this
Hello. Generally side effects reduce with dose but sometimes it is difficult to work out what is side effect and what is something else. What dose are you on? What are the docs recommending?
I’m on 7.5 and the doc said she would be happy if it finally went down to 5 and stayed at that
How long have you been on this dose? How have you been with other reductions?
Hi, what are your doctor's saying about tapering down? What was your last CRP result as I think it might depend on that ?
My husband was treated for over two years for Temporal Arteritis. The side effects of weight gain, moon face went but he still has problems with ateries.
Do the doctors want you to taper.
What eye problems are the steroids causing? Are you seeing an Eye Specialist?
What are his problems with arteries
The doc never mentioned it I did and she said if I wanted to try it up
To me but she feels staying at 5 would be fine
Blockages, pain.
I don't know much about it really, why does she want you to stay on 5, must be a reason ? Maybe you need long term treatment. What was your last CRP result?
Would she be happy to try you on 4mg, then retest CRP then 3mg if number stays down?
I didn't even know that steroids have a bad effect on the eyes. My husband 's treatment was to save his sight.
Edit :
ps
Thought you were on 5? If you're still on 7.5 why not wait till on 5 and see how you feel. Is your CRP reducing?
Hello. You can get arterial blockages for other reasons, so it may or may not be due to GCA. Is he still on Pred for these arteries?
Don’t worry, the sight saving with GCA is to prevent irreversible blindness due to blocked blood supply to the eye. The Pred can cause cataracts which is fixable, so is a risk worth taking.
Yes. I know.
He was treated for the Temporal Arteritis many years ago.
Was just replying to poster.
Interesting info about the Pred & cataracts though, thank you, as no one mentioned that at the time! Don't recall seeing that amongst the list of side effects when researching at the time but do remember that list being scary. RNIB medical helpline people were extremely helpful. Reassured me that the treatment was the only cure. And encouraged and advised us what to do.
His treatment lasted about 2& half years (or a bit longer). Was fully tapered off after reducing down to 1mg on alternate days. x
Hi,
Your side effects will diminish as you reduce, but to be honest if you need 7.5mg to control your GCA you need 7.5mg. End of!
So long as your symptoms are controlled, you could try reducing, but you need to do it slowly by using a taper such as below (others are available) - and only reducing 0,5mg a time.
healthunlocked.com/pmrgcauk...
I haven’t gca just pmr do you think Dorset lady if I can go to 5 and possibly be in a a bit more pain then I already have will it help with side effects or will it be the same as it is now another words would trying it be worth it
Sorry, misread.
If you can get to 5mg then you shouldn’t really have anything in the side effect line - or much at 7.5mg either - but you need to control your PMR as well. It’s sometimes a bit of a balancing act, and also it can be difficult to know what is Pred related and what PMR related.
Skin problems certainly can be related to Pred, but at low levels it shouldn’t be affecting your eyes - have you had them tested recently?
And not sure exactly what you mean by arteries in legs? Can you explain.p - but more clarification might help.
It’s all too easy for doctors to blame Pred, when it’s not always.
I have Pdv in lower legs where the blood doesn’t flow through the arteries
Yes have had eyes done had one cataract done that eye seems fine other eye now useless told to cover that one up when I can yes pills again
Can’t hear properly can’t see properly can’t walk at all can’t stand up have I given up NO lol 29 year old transplanted kidney touch wood doing ok so I am very very grateful for that so I must not moan and try to keep the kidney going as much as I can and the pills I take for that doesn’t help but they keep me alive
Do you mean Peripheral vascular disease?
Are you sure you haven't got GCA and not PMR? I see you mentioned it in a previous post - but it was dismissed by medics - but deafness can be a symptom of GCA - there was a recent post about it you might like to read -
healthunlocked.com/pmrgcauk....
I know you have a lot of problems going on, but don't be in too much of a hurry about reducing.
Sorry it was pad as for gca I will mention it to the doc at renal unit thank you I also believe you are correct about the tapering down
I am 72 so even if using these pills cuts life span down a bit as a doc had said I’ll be doing ok and I have kept kidney going for 29 years which is always my concern no matter what problems I have and if the family of the donors knew this I think they would be happy so I think I’m going to plough on lol
💐
No it won’t help. PMR will just rear it’s ugly head. Inflammation is ready to roll.
I am inclined to agree with Dorset Lady and Mary both. It may seem like 7.5 to 5 isn't a big jump , but, in actuality it is. If you do it, you must do it by .5 and hold. Pred is not evil, and its side effects vary from person to person. And what you may be perceiving as side effects of Prednisone may be the disease itself , subclinical GCÀ ,or something unrelated to either.
No decisions should be made on a CRP number. A 2011 scholarly article by Dr. Das Gupta (an expert in this field) and his colleagues , tell us that it is now believed that people with PMR have a subclinical overlay of GCA and vice versa, and a percentage of people with one or the other will go on to develop the "sister disease".
And there is the risk that progress you made, could all blow up into a relapse and take you back to the beginning. I went down to 4mg from 5 mg., and was miserable both physically and emotionally. I am now getting my Prednisone by injection of 120 mg. every 3 weeks. That computes to approximately 5mg a day. With my dr's full approval , I take 3 mg + orally a day =8mg a day.
8 mg a day is a dose I can live with, function, not sleep during the day time, but I am not going lower because a doctor says so.
Of course, it's your body and your decision. Give it careful thought. Good luck in your decision making.
I've been on pred for nearly two years. Initially 30mg for suspected unconfirmed GCA with PMR. I had several symptoms as I reduced. Some were due to high dose pred and others due to pmr. It is very difficult to differentiate and if you read the side effects list attributed to pred you will understand what I'm saying. As a retired Pharmacist I have sympathy with Rheumys who want to get us off steroids because of the cumulative negative effects they have. I say this from the experience of a patient. I'm now at 4.5mg after a struggle to get there. Not because of flares but because of adrenal glands waking up and lack of cortisol. This is another minefield because some symptoms of AI are so similar to those of pmr and it is so tempting to increase the pred dose. I've done this. I bruise far more easily now. My skin is a lot thinner now, all because of the length of time I've been on pred. Someone who hasn't been on long term pred has no idea how hard it is reducing, especially once we reach that magic number of 7mg. My advice to you would be to understand how your illness manifests in you. Try to work out what are withdrawal symptoms and what is a flare. Paracetamol or ibuprofen will stop withdrawal pain but not flare pain. Accept that there are emotional and mental difficulties associated with reduction in your pred dose. And unfortunately we are all getting older so our bodies are wearing out anyway and the pred has masked the effects of time..........
Take care.
Most has been said already. But the bottom line is that if you have PMR then you need the dose that manages the symptoms as well as the starting dose did. If you think you can get lower and "manage with the pain" all you are doing is opening yourself up to a flare of the PMR and return to a higher dose of pred - exactly what you DON'T want.
You need enough pred to wipe up ALL of the new batch of inflammation created every day. If you don't then the excess will build up slowly, like a dripping tap fills a bucket, until it overflows and bang - back where you started.
It depends on the person - some people have fewer or less extreme adverse effects at 5mg than 7.5mg. But if it is at the expense of letting in a flare there is no point.
You will reduce when you are able and you do need to keep trying but now you should be attempting 1/2mg at a time and slowly. No heroics.
No heroics should be a mantra for us all!
As a newcomer to this site I can see how fortunate I am in my own journey to overcome GCA. Diagnosed in July 2018 and confirmed with a biopsy, my initial 60 mgs dose of Prednisolone is now down to 3 1/2mgs. When I had my second flare at the 7/8mg stage, instead of taking the suggested methotrexate I introduced weekly sessions of acupuncture and then reducing the pred dose by 1/2mg every two weeks. When feeling more fatigued or stiff I have stuck at the dosage for 4 weeks instead of two. To date this seems to be working. I'm fortunate in having a rheumatologist who agreed with my suggestions and just told me to contact her before my scheduled check up in December if I run into trouble.
I did also do 6 weeks of the Paleo AIP diet at the start of this journey and take various supplemends as suggested by my nutritionist. I stick pretty closely to a gluten free diet The result is no drugs apart from this tapering Prednisolone dose, my hair loss and skin bruising stopped at about 5 mgs dose. I'm just coping with the neck shoulders and hip stiffness and fatigue if I do too much. I'm 76 and was in good health beforehand. Seeing other people's really tough struggles I send you much sympathy and wonder if any of my complementary strategies might help you.
Everyone is different and there are people with GCA and PMR who got off pred in 2 years with no problems. Bear in mind that forums do tend to have a lot of people with problems - ones who don't have problems join, stick around for a bit and then go back to normal life and forget the forum.
Lots of us do use complementary strategies but no single one helps everyone. You have to try something and assess if it helps you. I have found Bowen therapy very useful in the past but can't access it here at an affordable price. The same would probably apply for acupuncture. OTOH, the physio and pain clinic departments at the hospital have been a lifeline, not for physio but therapeutic massage.
I was eating gluten-free when PMR appeared - and at that time it didn't appear to make much difference. I eat low carb - and eating more carbs than usual does make a difference. But then, so does the weather!
"I'm just coping with the neck shoulders and hip stiffness" - that suggests to me you HAVE gone to slightly too low a dose for YOU at the moment.
Yes I suspect this may be so but am staying at this level for a couple more weeks with added acupuncture before upping the dose as I am finding the acupuncture so helpful in this regard. Many thanks for your comments.
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