I have just completed 2 months on 4mg. My consultation with GP, has surprised me, this is his plan: After a significant flare…..
Advice…the lower you go, the slower you go. So….
Go to 3mg, for 4 months. It may take a year or so to come off completely, as we go verrry slow on the lower doses.
How very different from my Rheumy, who’s mantra was reduce one mg per month, at all costs, get off as quick as possible.
I’ll keep you posted.
Hang on to GP -sounds very sensible…😊,
That sounds good, I actually drop by .5mg now and sometimes by .25mg
I just LOVE that strap line the lower you go, the slower you go. Are you sure you were talking to a doctor?
I might be wrong but sounds like one is based on a plan on paper and not current thinking and one is based on the patient and reality?
I think he does his homework, bless him. He was the one who first diagnosed my PMR, and admitted to me then, he didn’t know a lot about it.
My Dr (a hospital internist) has just given me the plan for the next 6 months: reducing by half a mg every 2 months, but longer if I need it. He was against introducing a steroid sparer at this low dose (4 mg) as I have no side effects from Pred, and I don't want to have to deal with any other drugs. I have previously tried going a little faster but hit the wall each time I got below 3mg with a return of PMR symptoms, though not GCA. I don't really know how to recognise LVV symptoms, but maybe a feeling of extreme fatigue could be a sign?
So the lower the slower sounds good to me. And we know that the advice given here is the same... Thanks again for the support 🙏
I don’t know if this will be of help but I have LVV and last week I had a phone consultation with rheumatologist and I asked him what symptoms a flare would present.His answer was a high temperature and feeling very unwell that doesn’t go away.If it persists then contact GP.
Thank you for that information. I do get very fatigued when my PMR symptoms niggle but I never had a high temperature even just before diagnosis. I rely on monthly blood tests to monitor things because I know that fatigue can also be adrenals struggling. So much useful information here! Where would we be without this group 🙏
I did gleen one other piece of information from the Doctor you may be interested in.I have also kept a close eye on my blood test results and did ask during my consultation that as they had been consistently good could this be the basis to reduce my dose of Methotrexate.No was the answer,we use these to make sure the Methotrexate isn’t harming you.
Your reply posts are of interest to me.
I’ve been experiencing a low grade fever, and generally feeling unwell with occasional sore throat and slight upper respiratory symptoms the last few days as I settle in to 5.5mgs pred. Had these symptoms for 4 months last winter. I also have noted pain on either side of base of neck and scalp in places. Lastly I’ve had a intermittent fluttering or pounding sensation with my heart so I’ll be discussing these symptoms and LVV symptoms/diagnosis at my next rheumy appt.
I too am on MTX for 2 years (less months I did not take it due to infections, diverticulitis, etc including last winter). Last March I discussed lowering my MTX dose because I was so ill all winter and agreed to lower it from 25mg to 15mg injection weekly. I’m feeling much better this winter until the last few days. I still get monthly bloodwork for monitoring purposes as I’m on both pred and MTX.
I see from your bio a pet scan of your heart revealed LVV….hope it is well managed.
Hi Canada,I started at 20mg Methotrexate and like you felt nauseous all the time but decided to try and ride it out then around 8 months ago after telling the rheumatologist how I felt he said I could try reducing to 15mg.I am on tablets not injections.I also had hair thinning and loss,ulcers and sore gums.Just by chance around 4 months ago I took my methotrexate late morning instead of directly after breakfast and the results were amazing.No more nausea and I think my hair is growing back.Still have sore gums but not as often other than that I feel fine no aches or pains or mobility issues.I did ask last week if I could reduce again,I am a believer that I only want to take as little as possible to control my condition.This has led to my second PET scan next week and if my inflamed aorta has improved he will look at reducing my MTX.This is the only med I take other than folic acid.Others on here have remarked they know of know one on only 1 med for this condition.I do take a 2 week holiday after flu and COVID jabs with no problems.
Thanks for the background details of your MTX journey. Glad to hear you have managed to lessen some of the nasty side effects of MTX.
I’ve never had any nausea, mouth sores, or ulcers on MTX, thank goodness. I was told by my rheumy that injections have less side effects than tablets so I’ve stayed with shots weekly taken at bedtime. No problems. I also take 5mg of folic acid every day except my injection day which I’ve been told helps keep side effects at bay. My hair did thin a bit, but I take biotin and it seems to help.
It’s the other symptoms (low grade fever, sore throat, slight wheezing, scalp sensitivity and heart palpitations) that I need to enquire about at my next rheumy appt. I think this feeling of mild flu may be connected to my prednisone tapering….but not sure. Hoping it’s not another condition lurking in the background (like LVV), so best to get it checked out.
All the best with your PET scan next week. Hope the results allow you adjust your MTX with your rheumy’s blessing.
perhaps word is finally getting out
A keeper that GP!
Perhaps your GP has been reading this forum!
Thanks - sounds ideal - I am about to have another slow-go! Would you outline roughly how you got to 4 mgs, timing wise. Just been through a major stress period, but 🤞 things may be different now for the coming year. Thanks.
Sounds like a great GP. My GP told me that she was happy to let me work out my own tapering plan after I told her my plan was to reduce by 10% per month-ish. (Inspired by the plans on this forum) Every time I reduced I did a week of alternate days (old dose/new dose) then about 4 weeks on the new dose. 10% was tricky on lower doses but I’m a mathematician so I did some rounding and also chopped up 1mg into 0.25 when necessary. It’s taken just over two years but I’m just about there now and take 0.25 mg on alternate days, which is probably having no effect at all and is a security blanket!
Well done you. It’s so individual.
….. 0.25 mg on alternate days, which is probably having no effect at all and is a security blanket!
You’d be surprised how much it might be doing…. 😊
Absolutely!!!!!
Thanks. That’s good to know and has stopped me feeling silly for clinging on. This forum has helped me so much, especially at the beginning of my journey. 💚
No need to feel silly, I think with my GCA I probably could have come off Pred slightly quicker - did 7 week taper from 1mg to 0.5mg - and then another 7 weeks from 0.5mg to zero [after a false start].
Like you was a bit hesitant, so did it the slow way - and it worked out fine. So go with your gut feeling.
I was on .25mg for ages. It made all the difference because I flared the first time I dropped it.
In that case I’ll be cautious. I’ll maybe go from every other day to a gap of two days for a while.
that’s a long story Predderman. Started on 20 in 2018, went to 40 with GCA. Eventually came off completely in 2022. Experienced a flare affecting a different part of my body, 8mg fixed that in May 2023, been tapering since then, sometimes using alternate days over a couple of weeks before dropping to lower dose, sometimes half mg over weeks, this last step Dr suggested I stay on 4mg for 2 months his thinking was to enable my body to adjust, this has worked for me, and I’ve felt well. Fingers crossed for taper to 3.
Snap! My GP keeping me on 2mg for a long while,, while other medical things settle. The rheumy I saw said get off them immediately, 1mg per month, doesn’t matter if you feel I’ll, just fight through it. Guess you know which advice I’m taking!
Does the rheumy enjoy putting people at risk of an adrenal crisis by telling them to ignore feeling ill?
I know, Pro, what is going on there.?. I can honestly say looking back, I never felt well, under the Rheumy, worse when I came off.
My Rheumy told me that he will keep me on 5/6 mg pred long term. I do also auto inject Methotrexate 15mg and he content for me to continue as I am.
I've been dropping in 0.5 mg each time, since I got to 5mg.
Me too. DL's dead slow over 14 weeks has served me well. After being diagnosed in May 2021, I am now at 4.5mg reducing to 4mg over the next 14 weeks. This wonderful forum has been a loyal best friend every single day over the past two and a half years....thank you ❤️ Love from Pondweed
This conversation made me check the NICE guidelines and I believe that this is what the rheumatologist is probably following, though I have seen very similar quoted elsewhere. I'm not saying that this is wrong or right, just remarking that I would say that this is why we hear this advice so often and to give the source.
Just for ref, this is the link. cks.nice.org.uk/topics/poly...
The GP's version sounded more compassionate, and that did make me ask the question to myself, I wonder if the advice given by doctor's depends on how much direct contact they have with patients with PMR, and whether they modify that advice based on past experiences.
, I wonder if the advice given by doctor's depends on how much direct contact they have with patients with PMR, and whether they modify that advice based on past experiences.
More than likely, certainly on contact with patient, which is why we often say a good GP wins over a not-so-good rheumy everyday. And we would hope that any doctor would modify advice on past experience, but unfortunately many don't seem to..
It's probably the down side of not standing your ground, so they don't get the feed back (if they are even listening). I know I have been guilty of that in the past, but the last thing you want when you are unwell is to have to battle with a doctor who is not listening or feel bullied by. Then I end up going to see someone else instead. Sadly, self perpetuating.
Yes very true - as you say the last thing you need is an unsympathetic doctor ...
However - according to Prof Sarah Mackie the NICE things are NOT guidelines. They are supposed to be advice and are written by a third party company of medical writers who read the medical literature and then produce a composite. And as such, are written by people who have neither a medical qualification or experience of real patients.
And as you say - these things are believed by the doctors who think the patients they experimented on were OK, not realising that actually, they voted with their feet.
I've just had a flare caused by going too low. Rheumy has told me not to try again for a year! Even then he said make sure you go slowly. I also take Hydroxychloroquine, which I have to reduce from 300mg to 200mg in 6 months time.
What a nice GP. I visited mine yesterday after requesting a bone scan, which a number of people on this forum seem to have had. He told me that it would be pointless as steroids thin the bones so I definitely have a degree of osteoporosis. I could only have one when I was off the steroids and the sooner the better. Of course I want to be off Pred but I do not want to have the awful pain of PMR. His view was 1) reduce as quickly as possible, 2) my current dose of 7mg was a high one, and 3) if I did get pain it was as likely to be arthritis because of my age (74) as PMR, so get on with it
I sort of agree of course that taking Pred can be damaging - for one thing my high BP . Not all the GP's in my practice are as blunt as he is, and I should be seeing a hospital Rheumy in the next few weeks again - I think I am on this path at the hospital as there was a threat of GCA in the early days, which came to nothing.
So if you get a sympathetic GP you are lucky.
"He told me that it would be pointless as steroids thin the bones so I definitely have a degree of osteoporosis"
Which is utter rubbish. We probably all are osteopeneic - but that is an entirely different thing. I was osteopeneic when I went on pred with t-scores of about -1.3. After a good 11 years on pred, most of them at above 10mg'day, my t-scores were IRO -1.6, still mid-range osteopeneic. I know several others who were either on high doses for GCA or several years for PMR who also maintained bone density. You cannot know it is pred that caused someone's low bone density unless they had a baseline dexascan at the start.
With that set off mistruths, he wouldn't be my doctor for long!!!
I am on 6 1/2mg currently and plan for it to take me just over a year to get down…. As long as all goes well! Fingers crossed . no flares yet since the early days last April
Hi Alazarin, well done! I'd drop by half a mg, or even .25mg from now on. 1mg is quite a drop at your low dose. All the best!
yes, I am a bit nervous about the 25% drop all at once tbh. I don’t flare necessarily but seem to get migraines. I’ll follow docs advice, then if it doesn’t work, I’ll do my dead slow number.
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