Too low too soon.

[Patricia157]

After two weeks on 15 mg Pred, my doctor wanted me to drop to 10mg but I persuaded him to let me go to 12.5 mg. he agreed that I should take this for two weeks before saying I should drop to 10 mg. This should happen tomorrow.

The last few days I have been suffering sleeplessness as well as a recurrence of the pain but not as severe. Last night in desperation I took 2.5mg at 4am and got an hour or so sleep. This morning I have gone back to 15 mg but will try and speak to my doctor today.

Should I try and persuade my doctor to let me carry on for a lot longer at 15 mg Prednisolone before beginning to reduce again. I have printed off the advice from the ' Kirman' symposium review, your pro told me about and hope to be able to give it to my doctor if possible.

I hope I did the right thing.

Any advice would be welcome.

[daveD]

LO Patricia.I would say that to be reducing after two weeks is asking for trouble.it needs to be done SLOWLY. Take Care, Dave.

[Patricia157 in reply to daveD]

Thank you DaveD. I agree it is too quick but I had to negotiate with my doctor to agree to the 12.5 mg. I hoped it would work but it hasn't. I am now awaiting a telephone call from my doctor. Let's hope he goes with the forums way of reducing Pred. I.e. Much more time on 15 mg and then a much slower reduction by maybe 1 mg every few weeks.

[DorsetLady PMRGCAuk volunteer]

Hi Patricia157,

As daveD says reducing too quickly. I know lots of GPs want to get you down to a low dosage ASAP, but it invariably doesn't work.

Remember the mantra - don't reduce by more than 10% in any one go - so if you are on 15mg that's 1.5mg, so 13.5 not 12.5! It might not sound much, but it can make a difference, and if you do it overnight rather than the slow method you will notice the difference. I think you need to re-negotiate with your GP - not always easy, but it's your life not his/hers. If you have a good GP then he should be willing to listen. Hope so, DorsetLady

[brightonbella in reply to DorsetLady]

That mantra is going on a t-shirt...for my rheumatologist!!

[PMRpro Ambassador]

Take your GP a copy of the Kirwan paper: (I'm putting the link for anyone else looking in)

rcpe.ac.uk/sites/default/fi...

(this is a paper by the Bristol group which is aimed at GPs to help them diagnose and treat PMR and GCA more confidently and using a scheme that results in fewer flares due to reducing the pred dose too fast or too far, which is the primary cause of flares).

Ask him nicely to read it and consider following their advice. If he is unwilling, you need to consider finding another GP. The fact he apparently wanted you to set off on using the normal pred taper (2 weeks each of 15/10/5) shows he knows very little about PMR. You can do that with short-term inflammatory illnesses and in flares of rheumatoid arthritis where you are using the pred in addition to other medication. In PMR, pred IS the medication and must be used long term - usually at least 2 years, often longer. My PMR is still around 10 year after it first appeared, I am on 4mg after well over 5 years on pred. It will go when it wants to - a short course of pred will not cure it and as soon as you reduce too far the pain will be back in a couple of days at most.

Did you have raised ESR/CRP blood tests? If so, your GP should check them every few weeks. They should fall steadily and you can consider a reduction once they arrive at a steady low level. He should then check them before each reduction and you should remain at each dose for AT LEAST a month to be sure it is still enough to control the inflammation. If you don't, you have no idea which dose was the last one that was enough to manage the inflammation.

pmrandgca.org.uk/research-a... This is a page with links to full articles on Research and Clinical Guidelines including A clinical review of Polymyalgia Rheumatica by BMJ.

This is another good link - when you follow it, you then want the link to the Clinical Review by Dr Sarah Mackie and Professor Christian Mallen. Mackie, Mallen and Kirwan are amongst the top PMR researchers in the UK - a GP who argues with them isn't the one you want caring for you when you have PMR.

[Patricia157 in reply to PMRpro]

Thank you all for your help. I really appreciate your comments. Another chat is required with my GP - I feel!

[BR15 in reply to Patricia157]

Remember you are in charge of your own body. Gone are the days when one did exactly as the doctor told you without question. Respect their training, yes, absolutely, but also consider their openness to discussing reasons for their opinions with the patient.

I recently had a reaction to dropping from 4 mg to 3 mg after SLOWLY bringing the dose down from 10mg over the past year. I have been on that dose for several years and it needs to be reduced or if possible eliminated. 2-3 days after dropping to 3mg I was on my way home from a routine dentist visit in the middle of the day and didn't think I was going to be able to drive myself home - only about a 10-15 minutes trip. I made it home and could not wait to lie down. I felt as if I had hit a wall and could not even think about doing anything. I felt depressed as well and stayed in/on bed all afternoon dozing and being mad because right now in my life things are interesting and exciting.

Late in the afternoon it dawned on me that this HAD to be related to the drop from 4 to 3. Online I found the guidance I've seen here today, that the key is to drop down ONLY 10% at a time and to do it VERY SLOWLY. I did the VERY SLOWLY part, but had not known about the 10% thing. 10% of 10 mg is 1 mg so going from 10 to 9 to 8 etc can work if done slowly. By the time you get down to 4mg, 10% becomes only four tenths of a milligram - about half a mg. I put myself back up to 5 mg and within a couple of days felt like the 'normal' me . Not super energetic but nowhere near the state I was in on that bed day and not depressed at all. I have stayed at 5 mg for about a month but am ready to give it another try.

I am fortunate to have a youngish Rheumatologist who is very current on current thinking etc and is in a very state of the art practice with a Patient Portal so I can see all me labs and office visit summaries. He has left it to me to manage it and is freely available and very responsive should I need him. His wish is for me to get off Prednisone all together if possible and says he has several RA patients who indeed have succeeded.

I wish you good luck and encourage you to be proactive in your own care. The first Rheumatologist I went to 12 years ago when first diagnosed at age 53, had a 'wait and see' approach to every aspect of my care. He also was reluctant to treat my severe pain and implied that it wasn't really that bad. Respect quickly disappeared and I fired him. Found another Rheumatologist who had a 'treat it now and treat it aggressively' approach that has served me very well. I was fortunate at the time to be living near a very large city and am grateful to have been in a position to change doctors.

This has become a real epistle! Sorry for the length but I have found various forums to be enormously helpful over the journey with RA. I wish you success as you continue on yours.

[daveD]

LO Patricia.I have just reached the 12month mark on this strange journey,with info off these forums i have learnt to be assertive with Drs etc & to make my point,you will get more confident as you travel this road.You will not go far wrong with advice from the forums&never be afraid to post.I am down from 15mg to 4mg& 4;1/2 mg with no major probs. SLOWLY.end of sermon.

[BR15 in reply to daveD]

Good for you, Dave. Be very careful as you get down to the lower doses. The 10% rule is very critical in order to avoid a set back.

[daveD]

LO BR15. I have to admit that on good days I have been tempted to go for the big drop. But have always managed to rein myself in so to speak.I have taken about 90% of my advice from what I call the trail blazers on these Forums.IT has taken me from pre Christmas holidays to get from 5mg 4mg in half mg drops,I am thinking this last mile is going to be the longest.Thanks for your good wishes.All the best for your journey.Dave.

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Hi Patricia 157

I was on 20mg to start for 2 days then 15mg but symptoms returned within a day! Had to

Start again then 15mg for 4 weeks 12.5 for 2 weeks then 10mg for 2 weeks but symptoms started almost straight away! I am back on 15mg after 10 days and still getting shoulder burn and leg burn but not too bad! Night sweats and poor sleep pattern too. I was diagnosed 22nd December 2014. This is all very new to me too. It is great to know we are not alone with this support community. I hope you get your correct dose benefit soon.