I notice that many of you seem to self-managing your Pred reduction. How does that work with your GPs? Have you come to some sort of agreement with them that you’re going to manage it according to what your body is telling you?
I have been on Pred for two weeks now. Started at 15mg but taking it at 8am meant that pain didn’t go until mid afternoon. At beginning of second week, I experimented with taking it at different times and found that 5am meant that the pain was much better in the mornings and relief lasted through to the evening. But pain still there so I upped the dose to 20mg on Monday. Pain is much better now though still some stiffness in upper back and neck. Talked to GP yesterday and she said I should cut back down to 15mg on Friday. (In a rushed telephone call with no time for discussion)
From what I’ve read on this forum, that seems too soon and too big a reduction. But I only have 5mg tablets and not seeing my GP until Friday 17th. (Fortunately this will be F2F with my named GP - the earliest appointment I could get with him when I was in severe pain a month ago - so I might actually be able to have a proper discussion about it rather than rushed phone calls with the duty GP.)
Thanks so much to all of you for your advice so far.
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Lyra42
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Hello Lyra42. Dare I suggest that it may have been better to stay on the 15mg for more than one week to give the Pred a chance to do its thing? Some people do have almost immediate relief after embarking on Pred and for others it may take longer but I wouldn't advise upping an initial dose after only one week. A 70% reduction in pain is acceptable. Others will be along to comment if they haven't already while I'm typing.It will be ok for you to return to the 15mg after only a week on 20mg.
People do manage their own tapering regime but as far as I'm aware usually later on in their PMR journey.
I hope your forthcoming appointment will be useful.
Yes that was my initial thought when the GP told me to up the dose to 20mg after only week. That’s why I insisted on trying different timings instead in the first instance!Thanks for the reassurance - I will go back down to 15mg and then have a good chat with my doctor next week.
If the GP told you to go to 20 that is fine - possibly a bit soon to give up on 15 but really preferable if it worked better. You will be OK to drop back to 15mg at this stage - I originally had just 6 weeks of 2 weeks each of 15/10/5 and stop and I had no return of symptoms until after missing the first 5mg dose. If it were me I'd wait until after the weekend to go back to 15 unless you work - in which case resting over the weekend having done it might be a good idea. You haven't gone back to normal activity levels because you feel so much better on the pred have you?
Many who manage their own dose have come to an agreement with their GP, others never got to see a GP to be able to do so and just get a repeat prescription when they ask for one. Some GPs happily admit the patient knows their PMR and their body best. Most of the adjustment you hear about on the forum is during a tapering stage - where they may have dropped in too big a step or even if in a smaller step, it is now too low.
Thanks. No, I feel so terrible with the fatigue that I’ve been signed off work for the next two weeks. I’m off-loading everything I can to make the next few months a bit easier
My regime cannot be compared to my doctor’s as my doctor has NEVER told me how to reduce or if it comes to that how to handle PMR. The only time I talk to him about PMR is if my inflammation levels rocket up which they do every now and then for no apparent reason. In fact I even organised a hip replacement without ever seeing him. I talked to a trainee over the phone who organised an xray and that was it.
All the trainee did was what I told him. The surgeon had asked for me to have an xray. I was going privately, but it meant I could have the xray on the NHS. I was using the taxpayer to subsidise me!
That is true I am supporting the NHS financially!! I have just thought , I probably am not as I would never have got to the front of the queue with the NHS.
Don't agree with you saying that you were using the taxpayer to subsidise you for your xray, Piglette, rather you were going to private for your op which helped the taxpayer! ❤️
The truth is if we use the NHS we are all using the NHS to subsidise us. I do feel it would be a good idea to let people know how much NHS services cost. I believe in some countries they do let people know how much their drug prescription costs.
Hi Piglette, I think that many of us would have a shock if we had a tally of the costs of our medications. I know that Methotrexate costs 'pennies' according my Rhuematogist when I told him that I wanted to stop in some years ago because I was in remission. I have several repeat prescriptions which are all necessary for the different ailments that I have. I do appreciate the NHS and can clearly remember my mother, when I was just five years old, breathing a sigh of relief that the chest xray she needed would be free. We are fortunate that, in the UK, it is possible to buy a year's pass whereby you pay the equivalent of thirteen prescription items which then covers all the prescription charges you need for a whole year. I did this until I had a qualifying illness. Some GPs also help people out by prescribing two or three months meds at a time. Kx
My medical care in Germany was free at point of delivery - and eventually, overall. Not sure what would happen if you couldn't hand over proof of insurance at the time but I don't think you would be just left. However - either the hospital billed the insurance directly or they sent you the invoice to pay and claim back. Under a given threshold, your employer covered the insurance, above that you chose your own. But what it did mean was that you knew what everything cost - especially drugs as you paid for them and claimed it back.
Here every pack of medication has the price printed on it and we have a small copay - again above a certain household income.
There is an asthma inhaler in the UK that costs nearly £100 each time it is dispensed. Many people treat it as disposable - knowing they can "just get another from the GP - it's free".
I discuss my dose and tapering plans with my GP (who oversaw my care the first 3 years after diagnosis), and with my new rheumy (as of Oct/21). Both are ok with my suggestions re tapering, although my rheumy did initially prescribe pred based on her taper suggestion (drop 1 mg a month). Well that worked for the first drop, then I needed to drop .5mg each time, over a 6-7 week timeframe. I also discussed splitting my dose with my GP when I remained stiff each morning.
My GP and I did discuss me seeing a rheumy last fall as I was stuck on 9mg for two years. I then started Methotrexate in Jan to help me taper….so far, so good.
I think our relationship with our doctors is a collaboration. I’m an expert in my body, symptoms etc. They are scientists who specialize in the conditions we have, or hopefully have some knowledge of our conditions and the related medications for treatment, steroid sparing, etc.
Unfortunately though, this is not always the case! My first rheumy made all her patients follow the same taper, told me I should be off steroids in 2 years, and pushed Methotrexate only 7 weeks after diagnosis when I barely even started tapering. Some medical professionals seem to ignore their patients for the most part, leaving us to take matters in our own hands and experiment as we find a way forward.
Bottom line, we often must advocate for our health
Been on pred for 4 years and have hardly seen my doctor, recently had blood tests as I insisted on an appointment as I had had a flare up after being off predfor 2 two weeks ( really really slow ease off now back on 5 mg ) on the few times I have spoken to one it has felt like a waste of time.Guessing bloods okay as I havent heard anything…but I had a bad fall coming down a Scottish Hill while on holiday ( as a side was sent to the nearest minor injuries by 111 established I had shattered my elbow and had a dislocated humerus, referred to the trauma unit at Paisley who refused to see or treat me, said they were too busy, explained home was Cornwall, nearly 600 miles away, still refused So the nurse at minor injuries put me in a back slab gave me pain killers and at 8 pm at night we started our trip home..treatment back in Cornwall, who were horrified at my lack of treatment as our hospitals are always busy with visitors to our county, has been excellent and I have since had an elbow replacement) but now I am sorted elbow wise I need to have a talk to my doctor re my bones etc….deep joy…..but guess it will be a few weeks and phone call consultation…..i am always really jealous of the support some of you get from your GPs
I agree, I was coming down a hill, would have broken something regardless but think a discussion wont go amiss….have started a complaints procedure re Paisley …..
So I cut back to 15mg at 5am today as doctor instructed and woke up a couple of hours of later with stiffness and pain returned to legs (it had virtually gone this week while on 20mg). Funny how quickly you forget what pain was like....Question is.....Shall I risk wrath of GP and return to 20mg until I see him next Friday?!
I would! Though it is possible that it is in response to the 25% change in dose - far in excess of the 10% that the experts recommend which is still too big for some. If so, the pain and stiffness would improve over the next week. If the 15mg is too low, it will get worse.
I would too! We all react so differently. It took 40 mg to get my symptoms under control and reductions of 5 mg every two weeks to 25 mg lead to a massive flare. Back to 40 mg and had to follow the 10% rule going forward.
Lived in a small town in northern Canada and different locum physicians during the first 4 years with PMR. Based on the knowledge and advice found on this site I took control and was able to convince GP's and Nurse Practitioners to provide prednisone in the amounts required. It wasn't easy and each visit to the clinic to renew prescriptions was very stressful.
In 2018 we moved and I now have a permanent GP who respects my desire to manage reductions based on my own body awareness. Initially he referred me to a rheumatologist, which was a disaster! She was one of the "PMR only lasts 2 years" believers and wanted me off prednisone in 6 months. We agreed to disagree, she would not LISTEN to anything I had to say or even look at the research papers I wanted to share. I refused to see her again.
Hi Lyra42 arm yourself with info and share it with your doctor. Do read everything in the files on this site, Buy the book (in the files) it’s cheap and an excellent read. Take some supplements like vitamin d and magnesium and eat as well as you can. I was told 2-3 years before I would put it into remission and my doctor has been really good allowing me to taper but also encouraging me to be slow about things because quick changes can bring on a flare and make it worse. (I did that to myself in the early stages too 😌 I am impatient by nature)
I have been diagnosed for 1 and a half years and have finally gotten from 20 mg Pred down to 5mg. I did gain weight, I did lose some strength and fitness but it is slowly coming back and the weight is coming off too. I now do gentle yoga and pilates and walk or swim. I feel fitter than I have in years.
I feel almost back to normal on 5mg of prednisone but every time I try to drop lower I hurt again so I’ll sit at this level for another month at least.
All the best, I remember the panic and fear I had when first diagnosed, I read a lot of rubbish but I always came back here to check info, these lovelies have read all the research and lived the experience they are the benchmark for me and I only really trust the advice given here.
That sort of taper wouldn’t work for me. Currently I reduce .5mg every 6 weeks (slow taper), then stay at new dose one week before proceeding with next drop.
I fired my GP! At least my endocrinologist gets it. My current GP (& rheumy as well) seem to defer to her.
I've honestly learned more about tapering here than from any doctor. I have to admit, though, that there was such cognitive dissonance at the beginning that it took me awhile to listen - and seriously take things into my own hands.
And, if you think about it, it's only natural for docs & patients to be in conflict here. Docs are used to being in charge, they're taught to be in charge, they feel much more comfortable being in charge. PMR/GCA/LVV, though, is something where you really do have to listen to the patient.
And I say, when they don't, stop listening to them. Well, maybe still listen to them, but advocate for yourself strongly, try and educate them, and take things in your own hands when necessary.
I have read posts from people whose pred access is strictly controlled, and as one would expect the people writing about this situation are suffering. I sometimes think there are doctors who confuse the corticosteroids with anabolic steroids body builders and athletic cheats use.
I have been extraordinarily lucky, at least since diagnosis which took far too long. My first (good) doctor told me right from the beginning that I would have a lot to say about how the tapering went. She got me started, and a couple of months later I went to her with slow taper plans from the PMRGCAuk organisation, asked her opinion and she gave me her blessing. My current doctor has also left me to my own devices, indeed encouraged reluctant me in 2021 to increase my dose as I was flaring badly.
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