I have just found this site and GPs, rhumies etc should tell anyone with this illness about it.
A wonderful A&E cdoctor knew the symptoms and directed me to my GP the following day...this was in March last year. She sensibly prescribed not the recommended dose of pred (60mg) but 30 mg which has helped reduction over time although I have had one relapse. I have reduced the dose by 2 1/2 mgs per month until I reached 12 1/2. I am now on 9 mgs a day and will try reducing either by 1 or 1/2 every six weeks. Is this wise?
i started to lose hair at one point but, thankfully, that has stopped.
As one person mentioned, the doctors seem to have little idea of the disease and are keen for us to reduce meds asap. Each person is individual and my GP has left it up to me! Can anyone let me know how often they have bloods/blood pressure/ any other scans etc or even if they do?
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Do you have PMR or GCA or both? Half a mg every four weeks seems to work for a lot of people, I find it works for me although I may slow down or stop if I do not feel one hundred per cent. Some go for one mg which I think is rather ambitious.
Initially I used to have blood tests monthly, but after two years I now have them every three months. I had a Dexascan two years ago and was told I cannot have another for three years. I have my own blood pressure monitor and take it daily.
As piglette says - PMR or GCA? Because 60mg is NOT the recommended dose for PMR, 15-20 is more like it, and really, suspected GCA belongs in the hands of a specialist rheumatologist. But you seem to have been fine - so that's OK.
General blood tests are a good idea every few months, including blood sugars and possibly cholesterol - pred can raise both and management is a good idea.
Your reduction plan sounds fair enough - I'd do 1/2mg at a time now you are below 10mg. You may find that about 7 and again 5mg tend to offer problems. 7mg is the point where your body has to start making its own cortisol again and 5mg is the point where you may notice it if your body is being slow about it. Don't ignore any niggles - the best thing is to stop where you are and wait and see what happens. If they then goes away you can carry on. There is no virtue in "managing" on too low a dose - excess inflammation will just build up and eventually it will be a real flare. They can be tricky to get under control if left.
After banging on my GP's door about my (eventually, literally crippling) symptoms after weeks of them building-up and previous visits to describe them, I was started on 30mgpd Pred to treat PMR with the only, and casually-put rider that (q.) 'it thins the skin' (!). That was it - no other info about the bigger picture on this illness, its severity, or the equation re. taking this powerful medication long-term.
After a further 12 weeks' waiting for an NHS Rheumatology appt, the Rheumy confirmed (q.) 'Straight PMR' and advised my GP in a copied letter that the starting dose should have been 15mgpd. Mmmm....
On reflection, I did most of the initial diagnosis via my own efforts (with the help of the internet and true experts on this marvellous forum) to get to understand this previously unknown illness, and my GP only kicked the can down the road in terms of getting me out of his office as quickly as possible - so as to deal with the next item of his Performance-Managed schedule (?).
Am I bitter? Well, no and yes at the some time. Whilst so many GP's are juggling with their (often?) peripheral knowledge of many illnesses and also the massive constraints on the time spent with their patients, some just don't seem to be interested in, or (perhaps) motivated to dig deeper into what's going on with their patients.
Oh well, on and forwards. I am fortunate, things could be a lot worse
In fairness to your GP, the most recent recommendations for the management of PMR (2015) say 15 to 25mg as the starting dose but NEVER above 30mg. Size of patient does have a bearing too - a large bloke will need more than a small woman. Start with 15mg, add more if the result isn't ideal but if you need more than 30mg - think again perhaps? And only 10 or 12 years ago the normal starting dose was 30mg until they got scared about the cumulative dose and reduced the starting dose recommendation after a study or two showed it could be sorted with less. At the start maybe - but there is some question as to whether a high starting dose results in an easier disease course overall.
Doctors always mention the skin effect - and of all the side effects it is the one I've had no trouble with! But I NEVER use soap on skin, ever. Another lady with no problems doesn't either. Coincidence?
I have GCA but it looks like your advice is sound. Thank you. I seem to have a little tenderness around the temples since dropping to 9 so may well increase by a half...difficult pills to cut !
In that case the 30mg was a bit on the low side - 40mg is the usual starting dose - but as I said, if you have been fine, that's OK! 60mg is the dose for patients with visual symptoms to reduce the risk of loss of vision by dealing with the inflammation as quickly as possible.
If you have a return of temple tenderness you may need a bit more than just 1/2 mg extra. And do discuss it with your GP. It is very common to have flares of GCA in the first 18 months after diagnosis - and you are still within that time period. It would be a shame to let it get away after doing so well this far.
No-one here is in a position to say what dose you should be on - but if you were fine at 10 and not at 9 then if it were me I'd try 10 and see if it is enough. If it isn't - you really do need to discuss it with your doctor. As I said, flares are common in the first 18 months - and having done so well so far it would be silly to let a flare in.
That's really helpful advice and thank you. I have GCA but I'm sure the reduction side of things is the same. I shall refer back to this as I attempt to lower the dose and, as my temples are a little tender, I shall increase by 1/2mg .
I had the same experience there is no excuse for doctors who leave a condition (in my case )12 months , to get so badly untreated, that the patient becomes debilitated and worried ,with their imagination running riot and in awful pain with nothing able to relieve it . In my surgery we have several doctors and you see anyone available .So more chances that at least one of them could even google the symptoms like we have to .
Thank God for my Optician who after a routine eye test wrote to my doctors and did their job for them ,that's all I can say or I don't know where I would be .I too am bitter the trouble and problems this caused . I have treatment now and a Rheumatolgist . I also have made up the time and financial distance as a self employed person this condition caused to my working ability . I worked in terrible pain and stiffness while my doctors, plural; just handed out more useless painkillers and sighs . I have no sympathy for my doctors ,I have a job and if something goes drastically wrong I have to know why . They should be the same . This is not a condition that shows no symptoms . I had this same attitude with two years of gallstones during which I lost a job because I was so ill so often . All it took was a simple scan to diagnose . Not endless rushes to hospital wasting NHS resoursces . Time they took some responsibility for the job they do .
Been there, done that, got the t-shirt - mine was undiagnosed for 18 months - ended up losing sight in one eye.
Am I bitter - no, but I do get annoyed at times when I find I've missed the glass again and got as much water on the outside as the inside! Or can't see the black buttons on the black fascia of some electrical device, or read a magazine properly because some arty person has decided that a coloured background makes the article I'm trying to read more interesting - no! It doesn't it just makes it more difficult so I give up half way through. Or missed the uneven pavement - again!
Could go on, but even I'm bored now!
I'm grateful that a "switched on" ophthamologist in my local A&E dept realised what it was and started me on 80mg of Pred and saved my other eye!
If you think strongly enough that your doctor is not doing his/her very difficult job then do something about it - there's a NHS complaints procedure, or specialist solicitors dealing with negligence cases.
No point in being bitter, what's happened has happened - either do something about or forget - it's not doing you any good festering about it.
I dont fester I just really feel that more and more doctors are not taking enough responsibility . Litigation I expect frightens them also . Perhaps bitter was a strong word . I went through a lot bringing a negligence case would take forever and I see no point I just feel that if they were more willing to say I don't know lets see what we can find out .Than saying nothing and leaving you out on a limb feeling like you are just complaining for the sake of it I would feel better about it . Sorry you had to loose the sight in your eye before this was recognized and that too is a major issue . That shouldn't have happened . I stand corrected I have no wish to cause a negligence complaint .I just want to be treated seriously when I make a rare trip to the doctors ,not so rare nowadays but they hadn't seen me for years until the last 4 .
I didn't mean to be harsh, and you have no need to feel corrected - that wasn't my point, but you sometimes have to acknowledge that things that shouldn't happen, do!
I've found the only way for me to move on from that, whatever walk of life it may be is either to confront the person/people responsible or to forget it and move on. Like you, I did my job to the best of my ability and expect others to as well, or be accountable when things go wrong.
However, if you keep churning it over in your mind, it's just you that ends up being annoyed and upset.
I do agree that some of the medical profession are particularly bad in saying - sorry I got it wrong. Unfortunately, although they are dealing with people every day, a lot don't have seem to have a natural ability to relate to people as people - very often we are just an illness that need treating. Maybe we expect them to have all the answers as well - and unfortunately they don't.
I hadn't intended to fester or churn sorry I wont post again I just thought I was offering support in a way of saying yes there are other people alike its the way it goes .Sorry I wont post again I feel really embarrased .I will look at my postings I didn't know how I sounded . Sorry .Better to just observe I think
Generally if someone talks in that way they ARE upset about what has happened and are dwelling on it but don't always realise it. I don't think DL was being harsh or anything else - she was trying to help you see that maybe you need to look at how you feel more dispassionately.
Don't take the huff - most people are here looking for help and most of us want to help with a problem we identify in a post.
A lot of it is nothing to do with not taking responsibility - in the NHS at least. Many of them could be better doctors - but they are rushed off their feet and don't have time to think or empathise, their managers are forcing them on to the next patient quickly.
The junior doctors (that's anyone who isn't a consultant) are threatening strikes again because many of them know it will be even worse when what they have now for 5 days will spread even more thinly over 6 - there are no extra doctors or funding being offered and most NHS Trusts are desperately in debt already. Few doctors are entering general practice because they don't want to work for 12 hours a day, 5 days a week - and general practice is on its knees in many areas with no chance of relief. Leaving the EU may make that even worse as doctors from other EU countries will no longer be able to come here to work so easily. If they wanted to that is. I wouldn't.
Thanks for the lecture. I wasn't taking the huff I am embarrassed and I didn't say DL was being' harsh' I think you have made more of this now than either of us intended . No further post from me .Not because I have taken the huff but because this site is not about people taking sides and I don't want to get involved in doing that . So I will not respond to this post again Not because I have taken the huff but because you have made it feel personal .
please don't take offence at what others say on this forum. It is certainly not mine, nor anyone else's aim to upset people. Everybody's opinion is welcomed - that's the beauty of it!
We give our view of these diseases in a free environment, using our own experiences in life as well as GCA or PMR specifically, and hopefully help others.
If you feel you do not wish to contribute to this, or any other discussion, then that's your choice entirely. But I think it would be a shame - everybody's view is valued.
Please reconsider - you do not need to feel embarrassed, or lectured or negative in any way. Nobody on here is going to judge you - we're here to help - that's all.
I have blood test every time I get to 1 to 2mg drop in medication . About 6 to 10 weeks .
Have no other tests , although did see a neurologist and had a ct scan . The neurologist did not seem to understand the need to come of pred . Slowly .
As previously written by me , this week , I believe I am having a flare at the moment and hopefully it will pass .
In view of this flare !! I will stay at this level 5.5mg a little longer after the (flare) symptoms have passed .
I agree with you that doctors are not guided enough on pred.withdrawel when the medication for PMR is not the same as for pneumonia and other like illnesses
I to am lucky in having an understanding doctor who is letting me decrease at my own rate , as she realises that everybody reacts differently to Steroids .
In my opinion it doesn't matter how long it takes to come of this not so nice medication , but that the eventual outcome is successful.
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I just really feel that more and more doctors are not taking enough responsibility . Litigation I expect frightens them also . Perhaps bitter was a strong word . I went through a lot bringing a negligence case would take forever and I see no point I just feel that if they were more willing to say I don't know lets see what we can find out .Than saying nothing and leaving you out on a limb feeling like you are just complaining for the sake of it I would feel better about it . Sorry you had to loose the sight in your eye before this was recognized and that too is a major issue . That shouldn't have happened . I stand corrected I have no wish to cause a negligence complaint .I just want to be treated seriously when I make a rare trip to the doctors ,not so rare nowadays but they hadn't seen me for years until the last 4 .
Coated or non coated pred? - that is the question....
Flare and reducing pred.
Weird PMR
Amlodipine 5 mgs or Flu jab reaction
