How to assess tapering if you've never been pain free.

[Navion]

I think some of you, like me, have never been pain free even when on prednisone. My rheumatologist said I could start tapering as my inflammation markers have finally come down. ESR is now in the normal range at 11. CRP is still above normal, but down from 20.5, where it's been stuck for several months, to 6.9. I'm wondering how I assess if tapering is going okay when Prednisone didn't take all my pain away and I have some days that are quite a bit worse than others before tapering. I'm wondering what others h as very done.

[HeronNS]

Navion, what was the highest pred dose you were ever on, and how long did you stay there? I see from your profile you started at 5 mg, and I seem to remember you increased that, but can't remember how high you eventually went.

[Navion in reply to HeronNS]

I was on 10 for a month and then 15 for the past month.

[HeronNS in reply to Navion]

Okay, so eventually you did decide to go up to the typical starting dose for PMR and have been on it for roughly the same time as standard? Have you been doing anything strenuous, or do your other conditions also cause pain? I have to say when I started pred at 15 mg ALL my aches and pains, including those caused by osteoarthritis, vanished, only to slowly return as I reduced my dose. I'm pretty sure PMR is controlled in my case, now down to 2, but I definitely have the creaks of osteoarthritis.

It is said that 70% improvement should be the least you should expect from pred treatment for PMR. How do you think your experience rates in that context? I'd certainly be careful that any increases in pain you notice are due to conditions you may have other than PMR. If it's PMR creeping back only enough pred will help. I don't know what the more experienced people would say, but they may suggest you stay at your current dose for at least a couple more weeks, and then use the dead slow method of tapering right from the start of the taper. Remember, "It isn't slow if it works"!

[Navion in reply to HeronNS]

I would say I'm at least 75% better on prednisone. The leg, hip, knee, buttock pain that was incapacitating is largely gone. The pain in the upper body got about 50% better on 5 mg and going to 10 and 15 didn't improve it any further. PMRPro thought it sounded like myofacial pain syndrome brought on by the PMR. No other health conditions and I don't think I'm overdoing anything.

[SheffieldJane]

I just read your comprehensive profile. It made me feel sad for you. You did everything you could to be in excellent health and then PMR strikes. It made me kind of wonder if you’d experienced particular stresses prior to your diagnosis? If they aren’t resolved they can impede our recovery.

I see that Heron has picked up the other points that struck me too. Like potentially underdosing and possibly over estimating the relief it brought percentage wise. That of course just allows the ( dangerous inflammation) to build towards a flare. Your relief on Pred ought to be such that you know that your movements are freer and you can lead a reasonably normal life within sensible parameters. Once the old restrictions and pains start returning, you do need to consider increasing your dose. That low level flu feeling used to creep back with me.

I loved that you could do more military press-ups than your son. May these days return to you. Best wishes! Jane

[Navion in reply to SheffieldJane]

Thanks. I was doing very stressful volunteer work for our town's domestic violence program when it all started. I quit about a year ago when I kept getting worse.

I have improved significantly while on prednisone. I can take my clothes off over my head, get out of bed and chairs without pain, turn my neck enough to drive, walk for 30 minutes at a time, all of which I couldn't do prior to prednisone. It's just the nerve like, burning pain and tightness in my trapezius muscles, neck, and between my shoulder blades that never relents. Pain level is probably only a 4 or so, but it is always there.

[SheffieldJane in reply to Navion]

Gosh! I was counselling the survivors of domestic abuse and making plans with them, for their escape, for two years when I became ill with what was eventually diagnosed as PMR. It was the hardest job I have ever done!

Those relentless pains are concerning. I wonder if a knowledgeable Physiotherapist would be able to help at all? Do painkillers have any impact on the trapezius, neck and between the shoulder blades pain? If so, they may not be PMR at all. I have Cervical Spondylosis that gives me horrible pain at the back of my skull and neck, it was made worse by a lot of screen work but does ease with painkillers. Perhaps an MRI Scan and or X Rays would be an idea. I wouldn’t be inclined to reduce whilst still so affected, even though your improvements are clear.

[Navion in reply to SheffieldJane]

I haven't tried pain killers except for acetaminophen (Tylenol), which only helps a little. I've had xrays and nothing unusual. I had an MRI of my neck. It shows a couple of bulging discs that no one seems too concerned about. I'm thinking maybe I should see a neurologist. However, I am unwilling to do much for it so not sure what good it would do. I have a blood clotting disorder which makes steroid injections very risky and surgery really not a viable option.

[Noosat in reply to Navion]

I know this may sound "way out," however I will offer it anyway. This past week I had a nasty episode with a gastric ulcer, having to be taken to emergency after collapsing. No surgery required so was home in 24 hours. Reading all I could on this condition, I found it can cause pain in shoulders and neck, which I am feeling now. The gastroentorologist's diagnosis is that the ulcer is in the process of healing itself.

[Hidden in reply to Navion]

Another item I found out prior to being diagnosed with pmr is my spine at my neck. I initially thought I had pinched nerves, which I did have and went to an old fashioned chiropractor where he snaps my neck a few times a week. I got an mri if neck and neurologist determined that I did in fact have pinched nerves but also had a more systemic issue going on as well. He recommended rheumy. Rheumy quickly diagnosed as pmr and had a good response to prednisone. However I could feel the pinched nerve affecting my neck shoulder to my fingers. Pain on the pinched nerve side was always worse than the other. So I think the pmr adds more inflammation to the pinched nerve area in the neck making it worse. I still attend the chiropractor to help keep the pinched nerve calm. Just understanding this pain is caused by a pinched nerve but helped along by pmr has helped understand my situation

[Navion in reply to Hidden]

I've been to 3 different chiropractors over the course of the past year. None helped and my last session gave me severe muscle spasms in my back. He suggested acupuncture. I had a session on Friday and it made me worse.

[Purplecrow]

Hi Navion. I , also, worked with DV offenders and victims for about 5 years. Seriously intense, stressful work. Thanks for doing it.

My suggestions about your upper back pain...perhaps a chiropractic session could ease some of the mid back and shoulder pain. I carry my stress in those areas, and as the muscle tension builds, I feel my muscles are just stuck. A hot pack and gentle vibrator massage relieves the pain. Then the chiro treatment finishes the deal! I leave my Chiro office "in love" with him. The pain stays gone for quite a long time.

Might be worth trying....just sayin'.....

Kind Regards, Jerri

PMR diagnosed 2013

[Navion in reply to Purplecrow]

I have tried 3 different chiropractors over the past year. Doesn't work for me.

[Purplecrow in reply to Navion]

So sorry, better luck soon. Regards.J

[Sheilamac in reply to Navion]

Have you tried Bowen Therapy?

[Navion in reply to Sheilamac]

I went to a massage therapist who was certified in Bowen, the only one in my town. She massaged my ankle for a hour. Didn't do much for me. Is that what a Bowen therapist does? If not, what should she have done?

[PMRpro Ambassador in reply to Navion]

No. Absolutely NOT!

youtube.com/watch?v=2xgtBih...(Not working as expected?)

youtube.com/watch?v=WrBAYJM...(Not working as expected?)

are a couple of videos showing the sort of thing they do during a session (I've seen better but can't find them at the moment). It is usually about an hour to do a full session and various parts of the body will be treated. Between the moves (as they are called) the therapist usually leaves the room to allow the area just treated to settle. They have specific protocols for various parts of the body.

But just the ankle, for an hour? And it isn't massage - it is different. She sounds like a fraud who has realised she can charge more for doing nothing if she calls it Bowen.

[Navion in reply to PMRpro]

Thanks for the info. Unfortunately I can't find anyone else in my town or even state that does Bowen. So I see if I can find a physical therapist who knows about myofascial pain.

[PMRpro Ambassador in reply to Navion]

Hope you can find someone.

[Sheilamac in reply to Navion]

My experience has been nothing like that. It was very gentle and nothing like massage that I've had in the past. She is purely a Bowen therapist.

[Navion in reply to Sheilamac]

We have only one person in our whole state that is listed under Bowen therapy and she was the one I tried.

[Sheilamac in reply to Navion]

Thats sad! I hope you can get some relief. X

[PMRpro Ambassador]

Whatever you managed to achieve at the starting dose is your guide - what went away then will mostly have been PMR though sometimes other things improve with pred. You shouldn't feel worse at the end of a reduction than you did at the beginning.

But the pains you describe in your shoulder/neck are needing some attention - my myofascial pain problems are similar and pred alone doesn't prevent them whatever the dose and however long I am on it. When they are dealt with more specifically I think you will find you are more pain-free on the oral pred and will be able to get to a lower dose. The muscles need to be targetted to get them to relax - I have had therapeutic massage and myofascial release treatment that worked well, currently the hospital pain clinic is using needling techniques which are used here quite a lot and really do work well. It is a case of what you can access - as it is for me. I'd prefer the more manual techniques but they aren't available at present, the pain clinic is and was what worked 6 years ago to get me to a state when the manual approach was feasible.

[Navion in reply to PMRpro]

I have had dry needling and it didn't work. I am not sure how to find a physical therapist that knows about myofacial treatments or PMR. I went to several over the course of the year before diagnosis and they all ended up firing me. They couldn't find anything that helped. However, nobody said anything about myofacial issues. One thought it was my shoulder, one my e k, one my first rib, and one my thoracic spine. Sigh. The pain center here wanted to do an injection in my neck but I refused. My hematologist said it was very risky with my bleeding disorder.

[PMRpro Ambassador in reply to Navion]

The pain specialist here uses wet needling - directed at the muscles she identifies as tight or in spasm. Don't know what to suggest to find a therapist where you are - our physios at the hospital are all very good.

[Hildalew in reply to Navion]

Re finding therapists - Before my diagnosis with PMR I did a lot of internet searching to find osteopaths/ chiropractors/ any therapists who might have the answer to what I had decided was a 'frozen shoulder'. That introduced me to the word 'myofacial' and therapists who mentioned it/focussed on it in their websites. Have you tried, cautiously of course, Dr Google, or any other search engine?

[Navion in reply to Hildalew]

Yes, I found one place that mentions myofacial pain syndrome. I'm going to give acupuncture two more tries (it made me worse the first time). Then I'll try going to yet another physical therapist.

[Hidden]

I felt almost like you until a month ago. I cut out doing everything. Even stopped getting my morning walk for a week. That’s when I noticed my pain subsided. I found that any intense activity would keep my body just a little agitated. I slowly added light walking and now light swimming but I’ve learned that it’s so easy to over do things particularly if you’ve been used to intense activity most of your life. I now know exactly when I’ve over done it or the food I eat such as sugar or processed food has affected me.

[YuliK in reply to Hidden]

Cmaririchard ...I find the more I rest those aches and pains return in vengeance. All the time I'm busy I forget those niggles.

I still have stiff arms and hands every morning, but after an hour of moving around the house, doing light chores, I feel a lot better.

This weekend I really was very lazy and avoided doing literally anything, except resting ..

I couldn't get out of my bed this morning without feeling lots of pain.

I managed to get up, and started moving around the house and voila those pains disappeared.

YuliK

[Navion in reply to Hidden]

I don't feel like I'm doing too much. Walks of 30 minutes, which seem to help, and some Tai Chi, which has helped my stiffness enormously even before I started prednisone. I'm afraid the stiffness will get worse if I do nothing but I could try.

[PMRpro Ambassador in reply to Navion]

Have you tried splitting the 30 mins into two shorter walks? It sounds silly - but starting with very short sessions and finding where you are pain-free the next day (if that is what is happening) and then adding 1 or 2 minutes at a time can result in a really good training effect over time.

[Hidden in reply to Navion]

Give it a shot. It’s actually very difficult to do nothing for a few days. But I was pleasantly surprised that I felt better by doing nothing. I found my base and now slowly adding things to my base. Swimming is wonderful for me as is walking. But I know the days when I go beyond my pmr allowances. My body lets me know it. I can now ride a bike for 30 minutes but very very very slow. Going too hard will make my pmr cranky again. I was very surprised how little intensity it takes to get pmr cranky and agitated

[Navion]

I feel similar. I feel much better than before prednisone but I always have some pain. I am hesitant to keep increasing the prednisone to try and get rid of the remaining pain. My plan is to keep reducing unless my pain level increases. Good luck with continuing to reduce. BTW, I followed the autoimmune diet with zero cheating for nearly 3 months and it did nothing for me. I am gradually bringing foods back and again nothing is changing. I won't bring sugar, refined grains, or alcohol back, and I'll stick to an anti inflammation diet and lowish carbs.