Concerned about recommended Prednisone Reduction

Bones, joints and muscles
1

Diagnosed with PMR in early May and been on 20 mg/day prednisone since then except for an attempted reduction to 10 mg which lasted a day after being recommended by my GP. Since June seeing a rheumatologist who since July also had me taking 15 mg/day of meloxicam.  in August she recommended i reduce the prednsione to 17.5 mg and stay on the meloxicam.  When i complained about the meloxicam causing stomach issues she agreed for me to reduce that to 7.5/day.   Since I have tried this reduction for nearly 30 days i am very concerned about any further reduction due to the following:

*my morning pain and stiffness has not improved and has actually worsened some days particularly in shoulders/neck.

*my level of energy has decreased with fatigue a constant problem; i am still working but finding fatigue to be a constant battle and days off are total rest days usually amounting to major naps.  i think as an aside that fatigue is a neglected symptom of pmr not talked enough about in websites describing symtoms. Also related to that is "brain fog" which is also a neglected symtom in my opinion and something i deal with many days.

*continued with meloxicam until the 20th when after several more bouts with stomach issues = cramping, diarrhea,  came home from with upper stomach chest cramps that had me bent over..decided that night to stop meloxicam and stomach issues have abated for most part.

*now the last few nights I have  been having severe ear pain when sleeping- ear feels blocked but then when i touch it and try to "relieve pressure" i get a stabbing pain that never felt before that continues....this may be unrelated to everything else such as pmr and prednsione but something i am concerned about ..because of that took a meloxicam last night at bed...made an appt this am back to my GP to check on ears which feel blocked with a mild pulsing sensation ..anyone have problems like this?.

Apologize for getting into all this background of issues but very concerned with any thought of now reducing prednsione to 15  mg/day  with way i have been feeling etc.  Think I am going to just email or call rheumatologist and say i want to stay at 17.5 for a while as i am not sure i should not be at 20 mg anyway.  Not scheduled to see rheumatologist until October.  Also not sure about the need for meloxicam and whether it is any help but with this ear pain thought i might as well try it.

 

2

There are a few issues here and I'm glad you have told us the background. 

First of all, Meloxicam is one of a group of drugs called NSAIDs (non-steroidal anti-inflammatory drugs) and NSAIDs should NEVER be taken regularly alongside pred at any dose. Both are capable of causing gastric problems by irritating the lining of the stomach, taking both together increases that risk. 

Reducing from 20 to 10 mg pred was NEVER going to work in PMR even if it works in other illnesses where pred is used and tapered. The dose of 15 to 20 mg used as a starting dose in PMR is one that deals with the inflammation that is causing the symptoms in most people. Then you need to reduce to the lowest dose that does that. What we call PMR is just the symptoms of an underlying autoimmune disorder that causes your immune system not to recognise your body as "self" and so it attacks various tissues leading to inflammation and swelling which cause the pain because of pressure on muscles, tendons and blood vessels. All the pred is doing is controlling that inflammation and relieving the pain.

Fatigue may well be not talked about in many sites - the ones I frequent mention it a LOT! The pred won't do anything about the fatigue, that is a component of the autoimmune disorder and the only way to manage that is to rest - you'll still feel fatigued but it will be easier to manage to do things. If you are still working that will compound that - very few of us would have been able to hold down a "real" job where we had to get up and do things to a timetable, cope with commuting and so on. I worked all the way through - but I am a freelance translator, my office was a few feet from my bed, I could choose my hours and never had to get dressed up never mind go out of the door!

It is possible that you have a rather atypical version of GCA - some people complain of ear pain and problems. About 1 in 6 of patients with PMR go on to develop GCA at some later point. Have your blood tests been repeated regularly? Did your ESR and CRP rise originally? Did they fall and have they gone up again?

When you reduce you must keep the steps small - the top experts recommend not more than 10% of your current dose (20 down to 10 was a 50% reduction!). Even the 2.5mg drops so beloved of many doctors is too much for many people - and it is a problem that gets worse over time. The body gets used to the current dose of pred, take some away and it is akin to going cold turkey - the body protests. Unfortunately the protest is in the form of symptoms that are similar to the original illness for which you are taking the pred.

If you follow this link to another thread on this website:

https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316

you will find some other links to reliable sites and forums with large amounts of info. One is the support site for the northeast of England PMR/GCA charity and the final one in that first post is to a paper written by the rheumy group in Bristol, England with recommendations for management of PMR and gCA, aimed at GPs. it is fairly easy to read most of it and your GP could do with a bit of bedtime reading. So could your rheumy but I doubt she would listen to a mere "internet" recommendation. I might be wrong.

Be that as it may, further down the thread, the 4th and 5th posts I think, is my "dead slow and nearly stop" reduction plan that has allowed a lot of people to get far lower than every before - because it IS so slow and the body doesn't protest at the reduction. I always got stuck at 9mg - now I'm almost at 3mg. You still reduce at the rate of 1mg/month - far faster than rushing and having a flare and needing more pred again.

However - first of all I would discuss this all with your GP. I am very concerned personally about the meloxicam - not just because of the gastric aspects but also because it is associated with a high rate of cardiac side effects. Your PMR is a vasculitis, inflamed blood vessels, and long term can lead to cardiovascular problems. One of the contraindications for meloxicam is problems with blood vessels or circulation. In my book that includes vasculitis.

Tinnitus is a listed side-effect of meloxicam - it can have an effect on the ears. So can PMR/GCA - I had ear problems, tinnitus and sharp pains, for some time in the early stages. I don't know how long I had been on pred before it disappeared.

3

Thanks for the detailed response and suggestions.  Much appreciated.  Yes I definitley want to discuss all this with my GP but then of course I will have to deal with my rheumatologist who i already have not been in great agreement with.  For example i mentioned my concerns about meloxicam to her and she didn't seem concerned at all and really wanted me to stay on it as well as prednisone.  I don't beleive i will reduce my prednisone dose further at this point.  If you have any suggestions for good sites that overview pmr symtoms well including fatigue i would appreciate it.  I am in US and it seems that the UK is well ahead on this issue.  Thanks again.

4

Look at the link I gave you - fatigue is part of all autoimmune disease.

The link to the Bristol paper by Quick and Kirwan is aimed at GPs and GPs are perfectly capable of managing a PMR patient. I know it is different in the US but I would NOT being returning to that rheumy, she is ignoring fundamental pharmacology recommendations. Most of us with PMR don't find ordinary pain killers (however sophisticated) do a lot for PMR pain. Only pred does anything effective. There is a lot to be said for using pred properly - used properly the side effects are minimised. Give another drug and you add in its side effects plus the possibility of interactions with the pred. It isn't rocket science - but I do get this slight impression that many US doctors are quite arrogant. That isn't to say that UK ones are perfect either but maybe a bit oftener willing to listen to experiences garnered from other sources.

I'd seriously consider finding another rheumy if your GP isn't up for doing the management.

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Hi Eileen,  you are so clever!  How do you know all that you do.  

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I have a physiology degree, worked in medical science for a long time, have been translating medical texts for over 30 years, much of it clinical trials, and since having diagnosed PMR have read a LOT! Maybe I'm sad - but there are almost no novels on my Kindle, if I'm looking for something to read I'm most likely to be found online reading open access medical texts. I'm also involved in a PMR research group as a patient rep. 

There is a massive amount of information out there but it is mixed up with woo. My background means I can find it in the first place, can tell the difference between reliable and rubbish, and most of the texts are in heavy medical jargon - but that is the sort of language I have been dealing with all my life. So I can read and understand the majority and have made it my hobby to "translate" it into "people-speak". I don't do it for other illnesses, just for the ones that concern me at present, PMR and GCA. And it would be wrong to keep it to myself - it is my donation to the support groups and my volunteer work.

7

Well now I understand Eileen.  You sound very knowledgeable.  I have had RA for 56 years. Since age of 16.  I now have a broken neck.  My husband has PMR and GCA.  He's quite bad.  He's had two repairs of his aorta.  Can't do anymore for him. 

He's cared for me for 47 years.

Thanks for helping so many people.

It's good to have such wonderful people in the world.

8

Oh Marilyn - I'm so sorry, you two really did draw the short straws didn't you. I regularly read a blog by a Danish/Canadian woman who developed juvenile RA and has been in a wheelchair since age 14 I think. At your age you must be fairly handicapped too since there were no DMARDs then either. 

I do hope things get a bit better - how did you break your neck? Or is a collapsed vertebra? I just can't imagine what you go through every day.

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Hi Eileen,  I was taking large doses of MS Contin.  I then had Kettermine infusion. I got down from 75mg twice a day to 40mg twice a day.  I felt so much better.  I decided I could walk down our hall. Well I fell and broke my neck. That was four years ago. 

Now I'm in terrible pain. The pain Dr is supposed to be coming to see me. I'm sick of waiting.  I now take 40mg OxyContin twice a day but it's not enough.  Any Ideas what else I can take?? 

10

I'm sorry Marilyn, no - my expertise doesn't stretch to that. You really do need a pain specialist though don't you.

11

Am on Meloxicam too but I take protonix 40 mg to help protect my stomach . The Meloxicam dose helps but I only take it when the pain is very bad. Am from the US too and they do look at PMR alot differently. Now 10 months and on 5 1/2 mg of pred and it hase not been easy so far.

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Thanks Eileen. Yes I'm trying to get a pain Dr to visit me.   GP coming today I'll talk to him.