Polymyalgia Rheumatica And GCA :: Reducing Prednisone Dose
Jul 7, 2014
I was diagnosed with Polymyalgia rheumatica last November, and the doctor started me on 15mg prednisolone. It was really great, and then started reducing by 1mg every four weeks. I am now seeing a consultant every month, and am down to 8mg daily, but have aching shoulders and arms. I also feel very lethargic. He gave me a prednisolone reduction regime which now has me taking 7mg for the next four weeks, 6mg for four weeks, 5 then 4 then 3 for 8 weeks, 2mg and 1mg for 8 weeks.
Has anyone else reduced by this method?, and will keep going, but would be grateful if they could let me know if it worked.
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On 25th Dec I reduced the pred from 7/8 mg alternative days to 7 every day, with a view to reducing to 6/7, but I had foot swelling and pain so I left it at 7 every day. I have been to the podiatrist who has said I have a bunion which has dislocated my toe next to the big toe, very painful ( ouch ).
Today I thought I would try to cut down to the 6/7 every other day, but would like your advice before doing so please, I am still in pain and my foot swells after being on them even though I am wearing the insoles the podiatrist gave me.
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I diagnosed my PMR after many flares. My GP did not know how to treat me when my Sed rate came back at 58. CRP in normal range. Called prescription of Prednisone: 60 mg one week, 40 next week, 20 following week. I knew that was not the way to treat it. 60 did not relieve symptoms , so I increased to 80. I know that was not the way to go but felt my GP didn't have a clue.
I have now been to a rheumatologist who changed my prescription to Methylprednisolone 16 mg tablets. I was instructed to take 48 mg. daily. I had reduced my 80 mg to 75mg before seeing him. I felt that was too fast. I started at 54 mg. daily. Was down to 40 but went back 48 mg.
My question: what is the difference in regular Prednisone and Methylprednisolone? Has anybody taken both and noticed any difference except Methylprednisolone is very much more expensive?
By the way my "rheumy" thinks PMR last for 2 years only and since I have had this since sometime 2014. I should be phasing out of this. What say you all? From what I read I don't think he's got a clue either. I feel sometime I'm surrounded be idiots. Might be time to find a new rheumatologist.
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I have had jaw aching and painful to open wide for 2 days. Just on left side. No headache except I did wake up this morning with both eyes aching around the rims. No other symptoms.
I've just re-watched the Youtube of Prof Dasgupta talking about the symptoms and how one problem is patients themselves not referring themselves in time and how some people don't even recognise jaw pain as a red flag symptom.
The question is, should I get myself to A&E (which seems to me to be over the top ) and start 60mg Pred right away???
I keep thinking that it's probably something simple - but should I be taking action?? I don't want to go blind.
Do you always have systematic symptoms as well like fever?
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Is it ok to have an occasional glass of wine while taking this stuff? I had one the other night and got a terrible headache. I am on a couple other meds too.
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I'm so worried about my stomach and muscle wasting with the Prednisone for my PMR.
I've only seen one author write about it, but that was in 1994. I don't see any more recent studies.
Seems a lot of benefits from it from what she said, but...I was was excited to read about Betaine for stomach healing, but it says corticosteroid users are at high risk, do NOT use.
I refuse to take PPI's for I hear they make one worse when the acid rebounds.
I'm so sad the Pred has messed up my stomach. My diet is restricted enough as is. I'm down to 6 mg, but still in pain, but refuse to go up. I'm not sure doctor's care if this messes up my stomach, I wonder if it will heal when all this is done!!!!! Or do they care? I have some relief by drinking aloe Vera juice before I eat and lieing on my stomach, but do not know if that is ok to do.
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I've had PMR symptoms since Dec, which was finally diagnosed in April. I've been on 20mg of pred since the beginning of April and mostly feel great. I'm running, biking, and actually took my kayak out to see if it would bother my shoulders, and it didn't. I'm a 68 year old male, who has always been active and in good shape.
When I read all these chats about people who are tired all the time I wonder if I am normal or if I can expect things to get worse. Is it the pred or the PMR that cause the tiredness?. My energy level seems good. I feel a little more tired during the day, but it passes. Sometimes I do take a nap when I do feel really tired. Functioning pretty normally with some awareness of mild muscle issues.
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It's now two years since first diagnosed with Polymyalgia Rheumatica and the first Prednisolone which was like a miracle and I guess still would be if I 'overdosed'. Currently well stuck at 10 mg there seems no way forward. I've tried the slow taper but the first day I drop there is a reaction so I had decided to just take a quiet view and stick at 10mg until the new year and then try the slow taper again.
I'm not uncomfortable at this level and it does not worry me to stay at this level.
But, the Hospital called today as there was a cancelation and I was overdue to see the Consultant. Chatted over my position and he expressed concern that I had become steroid dependant, something that can happen after two years. Whilst the dependency was not something that concerned him in itself it did however at the 10 mg level. Get to 5mg 'ish and that would be more acceptable.
So he wants me to go on Methotrexate, starting with a three month course running alongside the 10 mg of Prednisolone. This is to be closely monitored by a 'specialist' under one if the consultants (can't remember for what) and will mean blood test one or twice a week. Then after another Rheumy appointment in three months a decision will be made to start lowering the Prednisolone.
The whole thing seems horrific, especially as I have just noticed in an article on this site the following 'There is little evidence for the efficacy of steroid-sparing agents - eg, methotrexate or anti-tumour necrosis factor agents. Methotrexate is the most commonly used corticosteroid sparing agent.'
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i have started having heartburn I would swear was heart attack, if I hadn't recently had a heart cath, even though stress test was good, etc. Cardio wanted to be sure. I have been on mission to rule out GCA, due to headache and blurry vision. Biopsy came back normal. I have been taking acetaminophen for headache, which receives for about 5 hrs. I am on 10 mg Pred, down from beginning dose in May of 20. Any suggestions? Had drastic change in eyes since July, optometrist has been waiting for biopsy results, so I see him Wednesday, and Rheumy on 23rd, on and on it goes!
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how does the pred come in doses, at the moment my doctor has given me 5mg and 2.5 mg is there a lower dose so i can tell her monday.
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My symptoms started in mid-December. I went on 15 mg prednisone on Dec 31 but had only very slight improvement, then to 20 mg on Jan 5 (a week ago). After great improvement for 4 or 5 days (nearly pain free), the sharp pain came back in the arms yesterday (worse today) and hips are starting to hurt again. Alas! Any comment?
Also, when the pain is localized (like 2 x 3 inch area of arm), do muscle rubs or icing help reduce the inflammation?
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i have had PMR for 2 years and am now in a taper from 7.5m prednisone down to 7m. I have suddenly developed a sore spot on my throat. Also, I experienced acid reflux for the first time this past week, on one occasion. Is the throat soreness related to the prednisone? An infection? Thank you for any comments.
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i have had a mild sore throat on one side for almost a month and they have ruled out any infection.
i read just recently that this could be a possible side effect of the prednisone. Has anyone ever experienced this and if so was there a remedy?
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Has anyone ever had problems with kidney stones while on prednisone?
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Have any of you had more problems with your teeth, pain, cavities etc since taking pred? Also why wouldn't my dentist like to open out a tooth to crown it while I'm taking 15mg of pred?
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Lots of discussion about whether to take ibuprofen or naproxen for periodic pain. Some comment that one should never take these two pain killers because 1) they don't help or 2) they don't interact well. Read earlier today that if either of these drugs (also referred to as NSAIDs) work for you, you don't have PMR. So when some of you "flare" there is a tendency to increase the amount of prednisone as the antidote.
I am interested in your experience here. I have found that both ibuprofen and naproxen help a lot with the pain from periodic flares, and particularly at night. I have not had any adverse reactions in any form. I have resisted increasing the prednisone because I don't want to start tapering all over again.
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The thing I don't get yet is how come people still get pain and fatigue etc if you are taking pred? If you are taking the appropriate dose then why are you still suffering? I thought the whole idea was that you take the minimum dose to control the symptoms. I understand that you might/will get flare ups but surely it's just a case of increasing the dose and not just putting up with it?
I am still adjusting my dose and had a flare up last week because I dropped it too quickly, but I get that. What I don't get is why people are suffering when it seems a simple fix to up the dose when you get a flare up.
Or have I just missed the point?
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I wonder if anyone knows if I can have an extraction while taking pred. My dentist won't do it and I've been waiting for a clinic appointment for four months.i found out yesterday they'd didn't get the referral and I've got to wait again. The waiting list is 16 weeks.
my tooth is broken in two and I've had three abscesses under it the latter I'm now taking antibiotics for which make me ill.
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Does the Pred effect anyone's hair as it seems my hair has gone very dry it's a mess. Also my skin has got really dry.
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I was diagnosed on wed. I've been given 15 mg of pred for a fortnight to try. Fingers crossed after over 2 years of back and forth to the drs things will start looking up. I'm 40 and my dr said I was quite young to have pmr.
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I may have ask before but has anybody lost weight while on preds. I have lost muscle mass. Guess that would make you lose numbers on scale. I know I sound dumb to this but i am. I have so many questions that my doctor just seems to vaguely answer so i come here for answers. Thanks to all for any help.
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