Hello...I am a newbe to discussion forums but want to ask advice....I have been on prednisolene since Mar 2014 (after being misdiagnosed with rheumatoid arth by one consultant) and am now down to 1 mg per day and walking every day at least 3 miles. However I have noticed that as I lowered from 5mg down that the pains in my biceps and shoulders was starting to creep back in. I think I am now in the middle fo a flareup even though my crp's are fine. My doctor put me on anti inflams (diclac) twice daily and that helps but am not convinced. Cut it down to 1 tab a day myself but end up having a bad night and morning. Any help greatly appreciated.
Hello john, although it appears that males are able to recover from this condition at a greater speed than females I do feel that even so you have reduced to 1mg daily far too quickly, after all you have only been receiving treatment for PMR for just over a year.
when you reduced to 5mgs and the pains started to return, that was evidence that the dose of preds was too low to cover and keep under control the level of inflamation that was still fizzling around in your body. Instead of upping your preds back up to the last dose that did cover and control the level of inflamation you reduced further still, resulting in a flare.
i don't know anything about diclac but whatever it is won't do anything for your PMR pain or flare, if it did all our dr's would prescribe it for us. What you must do without delay is think back to what dose your preds were where all the PMR pain was under control and get yourself back on that dose without delay. Stay on that dose for 6 weeks then reduce using Eileen's dead slow and almost stop tapering regime. All the best, christina
Thanks Christina....I followed the reducing exactly as my consultant had dictated. I would like to go back up to 10 but will have to get my gp to agree and get the necessary prescription. It is very frustrating to be going backwards now and I was doing so well.
Is it Diclofenac? If so it is an anti-inflammatory med and it's generally the case that they don't really help in PMR and some are really hard on the stomach.
I agree with Christina that you have been reduced too fast and too far and your body has not kept pace with the reductions. Doctors, and some Rheumatologists, often want to force reductions even when it is clear that it isn't working - but then they haven't got it!
What you are after is the lowest dose to combat the inflammation and give you some quality of life. Hopefully if you chat to your GP - and tell it how it is - you will be able to begin again at 10mg, stay there until you are really comfortable and then start reducing slowly.
I'm puzzled here at why John's discomfort is reappearing when the CRP is so low as I had the same issue. I have to wonder what the value of the CRP is then. To me it appears one's own pain level is more a determinant of whether one is on the right dosage of Prednisone and yet our doctors put so much stock in the CRP reading. It's most confusing! I too would welcome hearing what others have to say about this apparent discrepancy.
Yes john I appreciate your frustration but stepping backwards a couple of paces is often the result of reducing too quickly. Your GP should know that but it appears they simply want you off the preds ASAP. Well we all want to be off preds ASAP but as Eileen says the condition came when it wanted and it will go when it wants to. All we can do inbetween is take preds in low enough dose that controls the PMR pain that is caused by the inflamation of the auto immune disease and therefore you cannot force the PMR pain to fit the dose of preds, the dose of preds has to fit the level of inflamation.
John, you must take control of your recovery process especially if your GP is offering you a treatment plan that is contrary to the established standard PMR treatment plan. Look up the Bristol PMR plan and you will see that you really have been expected to reduce too quickly.
you need to tell your GP that the PMR pains and symptoms have returned and you feel you'd like to up your preds to 10mgs, and then resume the tapering process inline with Bristol PMR plan. Take them in a copy of the paper otherwise I see a situation whereby you will be revisiting this exact same situation again and again, each time finding it harder and harder to get your PMR pains under control. So what does that mean? It means that eventually you will be on the higher doses of preds for a longer length of time which was precisely the situation your GP didn't want. It doesn't take a genius to work that one out so I just wish the so called experts understood the principle. Good luck john, regards, christina
Hi Leonard, many sufferers of PMR CRP/ESR results come back normal although they are clearly in pain and are suffering the symptoms of PMR. In fact I believe the official statistics are 1 in 5 that return normal. Our very own Eileen has never in her 10 years of suffering PMR had a raised CRP/ESR level.
you are quite right that our own well being is a better leveller of whether we should be reducing or not. Infact my GP always gives me my blood results and then asks me, "but how are you feeling" and suggests staying on the current level or reducing preds to the next dose depending on my reply. Regards, christina
The CRP and ESR should only EVER be guides - the symptoms are ALWAYS king. Unfortunately many doctors don't get that bit! They learn about the acute phase reactants (as they are called) and that sticks - the other bits don't.
Sometimes the ESR and CRP don't go back up again after the patient has been on pred even though they were raised at the start, even a small amount of pred may be enough to keep them down and - to top it all off - they may lag behind the inflammation starting up again and hover in the so-called "normal range" when in fact they are rising. My normal is 4, it got to the dizzy heights of 7 - but 25 is still regarded as "within normal limits". One single reading is pretty meaningless - the trend is far more informative.
Christina has a good doctor - oh that they were all like that!
Some doctors are of the opipnion that if you catch a flare in the early stages just adding 5mg to the dose the problem appears at may be enough if you catch it quickly.
I'd suspect you have simply reduced too quickly from 5mg - you need at least a month at each dose and preferably more on the way down to be sure the current dose is still managing the inflammation. One top specialist is keen his patients rest at 5mg for some months - and it certainly seems to reduce the flares later. If you have enough tablets try a few days of 5mg - if the pain reduces at that you will probably manage without going higher. If not just a few days at 10mg will probably do the trick and then you can go pretty much straight back to 5mg and reduce slowly again.
There is a lady on one of the forums just recently whose rheumatologist told her that 1mg wasn't doing anything so she should stop taking it. Within a few weeks the PMR is back. She has returned to 2mg and that is having the desired effect. She won't be going back to the rheumy as her GP is sympathetic so will manage her from now on. It isn't uncommon for that to happen - and really experienced rheumy nurses have said that 1mg may not seem much but going without is a very different matter. Once you are below 5mg the side effects are minimal - and personally if I have to stay at 5mg for the rest of my life that is fine by me.
I'm one of the lucky ones - my inflammation markers have never ever been raised due to PMR in all the years I've had it. In fact, it's the reason I was referred to a rheumatologist in the first place, my then GP had seen PMR before but not without raised markers. Luckily the rheumy had, so we have always been guided by my symptoms alone.
Thanks Christina,...I will present her with the Bristol PMR plan and see where it takes us...thanks for your advice...it is good to hear from others in the same situation.
I reduced from 5 per month to 4 per month and so on but like I said I felt the niggling symptoms were coming back more the further I reduced. I obviously should have said something to my gp sooner than now
Hello john.i have learnt to go by what my body is telling me & to take in all the information given by the T/shirt girls on the Forums.i have mainly used Doctors for bloods & medication.Once i got to a low dose of pred i reduced by 1/2mg usining the slow reduction method that EilleenH recomends with very good results.the main thing is not to be tempted to rush as mr pmr will strike for sure.just to add i have learnt to fight my corner where doctors etc are concernd.all the best.[slowly] DAVE.
Tks...will ask my gp to reappraise my current symptoms
Tis i again john, just having a break from a bit of pottering in garden, it is sarny time hence on laptop.in the past i have taken what the Drs said, since travling this strange journy i put my thoughts on treatment,they can get a little bit miffed but A/O. once again i cant say it enough.it is all down to info from the 3main forums. best wishes for your journy.Dave
TKS...APPRECIATE IT....
One quick addition - the reduction should only be by 10%. When you get to low levels this is a very small amount (e.g. 5mg would be 0.5mg).
I went from 15 mg over a six week period down to 14 and so on right down to 9 mg when I started to reduce over the same time period by 0.5 mg, currently on 6.5 mg. Been on preds for 11 months. No flares just the old niggle which only last a short while.
Hi...I have just spoken with my gp who has told me to go back up to 5mg per day for 3 weeks and then down by 1mg per day for the next 2 weeks and so on until I am back down to 1mg again which I feel is not really long enough at all...I will just have to try and go as my body dictates as long as I have the supply of pred...
Since I've totally lost track here - here is a link to another thread on this forum. In the first post you will find a load of other links to useful info and sites and amongst them is the link to the Bristol paper with their approach to PMR diagnosis and management.
In the replies part you will find a couple of posts with the very slow reduction plan that has been mentioned - definitely a good way to go below 5mg.
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
Happy reading! I do hope your GP will accept the concepts expressed in both the Bristol paper and the slow reduction plan - it does make life more comfortable!
Hi john, my god what is he thinking of, here we go round and round! No! Start on 5mgs for 6 weeks, and if within a few days your pains have not improved go up to 10mgs and reduce very very slowly. Your GP is rushing you back into the position you are in now, to what benefit? You are not being treated in line with the standard recommended treatment for PMR. Is there another GP within your practice that you can see, also start getting in these pred prescriptions! Good luck, and do let us know how you fair. Regards, christina