I am a 58 yr. old male with recent PMR diagnosis. Up and down with Pred. What can I take instead of this drug, it has so many side effects?

[trexjo54]

My son, who is 34 also has similar symptoms, he got off of pred. and takes oxycodone daily, any help???

[Sue8]

How are you taking the pred? The drops in dose need to be slow or you get flares. Yes there are many side effects but it does not mean you are going to get them. I have a bit of a puffy face and have put on a little weight that I had previously lost but that's about it. I did have palpatations but they have gone as have the hot flushes. I have been on pred since end of June started at 20mg doc said to reduce had a flare back up to 30mg. Now I am on 17.5mg but having a bit of a flare so will prob go back to 20mg. You have to out way the side effects with the pain of PMR really. I have naproxen prescribed also so I will be taking that today. not heard of oxycodene but it sounds like a painkiller not sure if it is an anti-inflamatory though whish is what you need. Gentle hugs and keep smiling

Sue

[trexjo54 in reply to Sue8]

Sue, thanks for the feedback, I really appreciate it. My pred. dosage started at 30 and with my Rheumatologist and blood tests tapered to 5 and then 2.5. Got a bout of gout in the big toe so went back up to 15 and tapered to now at 6. Flares started @ 7.5 and now my jaw is constantly sore and my pain is coming back. I am tapering @ 1 mg. a wk. but once I get below 10 or 7.5 I seem to flare. I have gained 15 -20 lbs. moon face and am losing my once muscular body. I normally am a very active guy who works out at the gym 4-5 days a week. I am getting frustrated because that was a big part of my day. Will taking the pred. for many years shorten my life? Thanks again for your quick response....Joe.

[PMRandRA in reply to trexjo54]

Your sore jaw is a certain sign of GCA and you should immediately get onto a dose of pred which will take away the jaw pain. Not many people know that jaw pain, especially when chewing is a symptom of Giant Cell Arteritis and not to be ignored. You could lose your sight, never to return, if it is ignored. So please, please either increase pred yourself and go and see the Doc or go and see the Doc urgently and increase the pred.

Taking pred shouldn't shorten your life, but not taking it doesn't bear thinking about.

Take care.

[Celtic PMRGCAuk volunteer]

Hi trexjo54

As you say you have recently been diagnosed with PMR and are "up and down with Pred", I am wondering if you may have reduced from your starting dose too quickly and/or too steeply. If you 'google' the British Society Guidelines for the Management of PMR you will find expert advice regarding symptoms, steroid dosage, reductions etc.

Also, if you are someone who had raised blood test markers(ESR and CRP) pre-diagnosis and treatment, it is a good idea to get these checked each time before trying a reduction. If they are still raised then it is too soon to reduce.

Although you say that your son has been prescribed oxycodone for similar symptoms, his are unlikely (although not impossible) to be caused by PMR and therefore require different medication.

I believe oxycodene is an opiate-type painkiller and not an anti-inflammatory - the latter are not recommended to be taken when taking Prednisolone due to the combined risk of stomach problems.

Prednisolone is the most tried and tested treatment for reducing the inflammation of PMR to date - yes there can be side effects but not everyone gets them and some lucky people don't get any at all. The benefits outweigh any risk as untreated inflammation running around in our bodies can lead to even nastier health issues than PMR.

Are you under the care of a rheumatologist? If not, then as you are having difficulties reducing it may be a good idea to ask for referral.

I do hope things soon improve for you - and for your son as well.

[trexjo54 in reply to Celtic]

Celtic, thanks for the info as it helped me alot. I am still learning about this pmr and how to cope with it. I agree with you and others in that I am reducing too fast. I am doing this with a Rheumatologist who is very good and listens to me but due to my ongoing flares I am sure that I need to slow down. This recent flare came as I was reducing and the jaw pain is the first time for me. I do not have headaches or temporal pain but could not understand the jaw pain. Gca?, I don't know but have a call in to my Rheummy, should hear from her office by Monday. Thanks also for the input on my son, I am still learning. Part of the problem is my own fault, I am the inpatient type and encouraged the Dr. to get me off pred asap. I will now be more patient. Thank you again.....

[PMRandRA in reply to trexjo54]

Sorry trexjo, I have posted this above as well, but I really want you to read it a well as everybody elses posts so I am posting it again. Hope you don't mind.

2 minutes agoPMRandRA

Your sore jaw is a certain sign of GCA and you should immediately get onto a dose of pred which will take away the jaw pain. Not many people know that jaw pain, especially when chewing is a symptom of Giant Cell Arteritis and not to be ignored. You could lose your sight, never to return, if it is ignored. So please, please either increase pred yourself and go and see the Doc or go and see the Doc urgently and increase the pred.

Taking pred shouldn't shorten your life, but not taking it doesn't bear thinking about.

Take care.

[Celtic PMRGCAuk volunteer]

Sorry - my post should have read "If you 'google' the British Society of Rheumatologists Guidelines for the Management of PMR....."

[Pipistrelle]

First off a 1mg taper per *week* is WAAAAAYYYYYYYY too fast...!! More typical (and the recommendation in the guideline document recommended above) would be 1mg every 4-8 weeks. That is probably the main problem right there and is likely causing you to boomerang around unproductively and causing a recurrence of pain. You also note you only had a 'recent' diagnosis yet are already down to 2.5mg in the past which also is alarmingly fast and an incorrect reduction schedule. Generally in would take close to 6-8 months (for those with a perfect response to steroids and no flares) to drop to just 2.5mg. It has taken me 18 months nearly to reach that level, for example.

So: the main question is how long a period of time have the tapers happened over (ie how long have you been on prednisone)? As others note this has direct relevance. It sounds like maybe the drops were too fast causing you to yoyo around at different doses which studies show tend to cause flares and make it even longer to taper...? It is important to understand to that your son must surely had something completely different -- PMR is a diagnosis of the over-50s which (very rarely can affect someone in their 40s but think your son must be much younger than this). So he probably needed prednisone then the alternative drug for a different reason. The average age of onset for PMR s 70 -- though some get it in their 50s (including me).

Also I would be very concerned that one of the recurring symptoms you have is jaw pain as this is actually associated directly with Giant Cell Artertitis (GCA) not PMR -- a far more serious and urgent condition that left untreated, or a too low dose of prednisone, can lead to blindness and a medical emergency. Too fast a drop (eg incorrect treatment for PMR) could make it more likely that GCA would develop as well from what I understand.

Is your rheumatologist aware that you are having jaw pain? Have you been tested for the possibility of GCA?

At 30 mg your rheumatologist actually started you at quite a high dose of prednisone for PMR (recommended is generally 15-20mg) but too low a dose for GCA. (????)

In your shoes -- I'd be inclined to go for a second opinion very urgently with another rheumatologist, as (if the regime you have followed with prednisone was the recommendation of the rheumatologist) you aren't being treated with the recommended approach for either PMR or GCA and the recurrent jaw pain would to me signal a very urgent need to have a rheumatologist make sure you have the right diagnosis with PMR, and not GCA.

You also need to be put on a correct treatment regime.

The side effects are frustrating but properly treated you would not be having these ups and downs which are almost certainly contributing to your side effects as you are not having stable reductions. For most people the visible side effects subside and resolve once you get below 10mg but it takes time for them to go away. On a proper treatment regime you should be able to work down to a level where side effects like the puffy face etc will go.

There are other treatment options like methatraxate if you find the side effects too extreme (but this has its own side effects) -- something to discuss with a rheumatologist -- all in all I think you need an urgent review of options and treatments and diagnosis and as I said, in your shoes I'd go to a different specialist. You do not want to seriously threaten your health (eg -- heart and stroke risk as well as GCA) by not taking prednisone at all or have proper care, so really important to get on top of what is going on and get a stable appropriate taper in place.

[Pipistrelle]

Here's info on GCA -- not it says anyone with PMR who feels jaw pain should see their doctor immediately.

With either GCA or PMR. correct treatment should see you down to below 10mg prednisone within a couple of months and for most people, the condition will be gone and they will be off prednisone within 2 years. Most who take longer are on very low doses of prednisone at that point. The first few months are the hardest but things DO improve -- the important thing is to get the right diagnosis and treatment in place and not rush things so you don't end up even longer on steroids due to the problems of too-fast reductions.

Please let us know what your rheumatologist says.

[trexjo54 in reply to Pipistrelle]

Pipistrelle, thanks for the info. I am learning quite alot from these responses and reading about other people and how they deal with this pmr. I agree with you that I need to slow down on my reductions. As I have stated earlier in another response, I am part of the problem as I see it now. I am the impatient type and am responsible for telling my Dr. that I wanted to get off of pred. asap. She is very good but I will tell her that I need to slow down my tapers. I am a avid weightlifter and enjoy my workouts, do I have to stop lifting as it is part of my life joy??? Thanks again.....

[Pipistrelle]

Oops forgot document link: rheumatology.org/practice/c...

[Celtic PMRGCAuk volunteer]

trexjo54

If that jaw pain occurs when you are chewing, then that is very indicative of Temporal Arteritis/Giant Cell Arteritis. It was one of my symptoms at diagnosis. You need immediate (emergency) investigation and, if confirmed, an immediate increase in your steroids to at least 40 or 60mg in order to protect your eyesight. Do keep in touch and let us know how you get on.

[hwigston in reply to Celtic]

My GCA started with jaw pain, which was left untreated by my GP. One week later I was blind in my left eye. If I were in your shoes I would seed medical advice ASAP.

[Tweetiepie]

I agree with hwigston I had all the classic symptoms saw doctor in July woke up in September lost sight in my left eye. Because I have wet/amd thought it was down to that WRONG went to eye hospital they were very quick off the mark and had intravenous injections mega dose for 3 days . then 60mgs/Take Care go to accident and emergency fast .