What comes AFTER PMR?

Thank you!  Answer made me laugh - I feel better already.

This is a good one, Eileen!! :-)

You'd hope wouldn't you John! Trouble is - and I forgot to mention it to Constance before - is that we are somewhat older than pre-PMR. That alone brings changes and the lack of fitness that is an almost inevitable part of multiple years of PMR and medication doesn't help. But I am promised by people who have got there that about a year after finishing pred you DO feel you might be back to normal!!!

Hope springs eternal...

I live in hope otherwise I might well go under!   I try to ignore the reminders I get especially after starting reduction. I have found you have to wait a week or so before things settle down and put up with the odd aches in the mornings, this was one reason I replied to Constance as I took advice from my GP who said Paracetamols where OK and help to overcome this transistion period.

Have you seen the very gradual reduction plan? That also reduces the discomfort at reduciton, some patients simply can't cope with even a 1mg reduction overnight without demonstrating steroid withdrawal pain.

Posts 4 and 5 on this thread:

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

explain both it and the thinking behind it.

I do hope so......I am still far off.....BUT getting better thanks to your guidance, education and support group of this forum.

Thanks for the input.  I will mention Paracetamol to my GP....to have it handy when in need.

I did have odd aches this morning, after consuming beef last night for dinner.  So far the 15 mg of Prednisone  took care of the aching in right shoulder and lower back.

 

In the past I have become alarmed when symptoms return when reducing.Now I can see that there is a transition period where you have to put up with  a certain amount of discomfort for a while.I am on Warfarin too but I believe I can take Paracetamol. So it takes about a week before the lower dose is tolerated. If I had known this I may have been taking 1mg by now instead of staying on 5mg.

It is worthwhile  to remember the transition period.......I hope, I will when starting further reduction.

 

I have been very fourunate in that when I went from 15mg to 14mg - no problem - same with 14 to 13 and 13 down to 12 - just a few niggles, when I dropped to 11 I then took your advice about reducing over a longer period, I believe this helped greatly.  Will be doing the step down to 10 (this is my next goal!) at a steady pace again using the 'method' Have got everything crossed!!

John, thanks for sharing your method.  Did you reduce weekly by one? When the time comes to reduce, I will need to ask my GP for many 1 mg Prednisone tablets.

I just found out that Paracetamol is Tylenol here in the USA.  I was not familiar with the name of the pain medication.

I was in a specialist rheuma clinic in Germany last year.  When leaving, the Professor -Top Man - told me to reduce prednisolone 1/2 a tablet per month.

I was on 7 mg - in other words 14 months!!  Prof said one had then less chance of a "flair".  Hope this may help others. 

That probably actually is a similar length of time to what I suggest in the reduction I mentioned above. It is possible to reduce 1mg per month steadily by using that reduction pattern - and it takes about a month to reduce that 1mg but you have less discomfort while doing it. However (and I mentioned this too) many doctors feel it is beneficial to stay at 5mg for anything up to 6 to 9 months before continuing down. Probably the most informed and thinking consultant I have come across in the UK takes this stance (he also ignores blood tests and goes by symptoms if they are there and the bloods are "normal"). It seems to allow the adrenal set-up to catchup with the pred reduction - 5mg is just below the amount the body needs and makes naturally. It is so difficult to tell whether your pain is steroid withdrawal or the dose being too low for the current autoimmune activity - and reducing too fast means you don't notice the point at which symptoms start to return - it takes some time for the inflammation to get to a stage where it is causing symptoms and the blood tests lag behind as well. 

Firstly can I say it was not my method but the one Eileen referred to in her link above.  I run for 28 days at one dosage and then go into the reduction as laid down in 'the method'  It seems to get more critical as you get to the max of 10% reduction mark.  Reducing from 15 to 14 is less than 10%, but once your below 10mg it's more!  It was explained to me as being a bit like target practice, if your way outside you can adjust in larger steps, but once you get close to the bull it a matter of fine tweaking.  Some folks even cut tabs in half but this is not recommended as you can't be sure you have a true half mg.  Cutting the 5mg tab is a bit easier but it's not always convenient to get the right total dosage.  Sorry about the UK Paracetamol - been in the UK too long!!

It is great that you are sharing your experience and that you have been successful with the reduction plan.  I need to learn not to "rush it" and explain this to my GP.  He would want me to reduce by 5 rather than even 2 1/2 from 15 after 2 weeks.  It does not make sense to have to deal with one flare after another because the reduction was done too fast and I have to up it again.  He did mention to taper with 1 once I reach 10, but I am not there yet.  Prednisone does wonders for the pain, but one needs to respect the handling of it. I appreciate your input.

 

Not a problem - thanks for your comments.  Just to add might be in the US next year if I'm fit enough and the PMR is under control or gone. Still miss the constantly beautiful view of snow capped Mount Hood.  Hope you get your flares to the absolute minimum or gone!.

I have an appointment with my GP in North Portland tomorrow and will present him with the guidelines of the more tapered reduction.  I hope he has an open mind. I saw the clear capped Mount Hood just yesterday..... a beautiful view!  The rains are starting.......

I find your comments helpful and uplifting.  Perhaps you can comment on this one!    My actual age is 75.  Four years ago (pre PMR) I was 62.  I liked travelling, walking in the mountains, voyaging, swimming, etc etc.  My present age is about 83-85!!   I can't make a bed, go on a bus, walk more than 500 metres.  Thanks PMR!  

I was 51 when my PMR started and attended local aerobic classes - which I managed as well as people younger than me. I was also a member of one group run by the local authority for "older" ladies and continued going to prevent it being stopped. Within weeks I couldn't keep up with the 70-year olds! I skied happily - I was very restricted with PMR and 2 years ago had to abandon the idea altogether for the season - I felt ancient, I couldn't even keep up with the local 80+ who ride bikes, climb mountains and ski.

I was going to ski this year - until I discovered the season ticket has doubled in price. It does get better - honest! I'm still on pred - you sound as if you need some and if you are on pred - you need more. That is how I was in the 6 months before I went on pred after the PMR went absolutely haywire after 5 years of being liveable with even without pred. 

EileenH it's always a joy to follow up your comments as so much fits in with my own experience. We have exchanged notes a few times!

i have found that lowering my pred down to 7.5 has like others allowed other things that had been masked to come to the surface. In my case the lower back is murder. All those hours of fun on ski slopes and tennis courts have to be paid for.

The Dr has let me have some Naproxen to cover the pain . . . it sort of does but I'm very much frightened of it so tend to under dose. Plus it is quite intolerant of any alcohol. One can't help but feel "oh for an extra 2.5mg of Prednisolone  but having fought every half a gram to get here, it's not worth it.

i guess I'm looking to a longer term pain relief as I know my lower spine has a spur on it, not bad but not good. What's the best pain killer in your opinion.

My immediate reaction is try Bowen therapy. Unless you have a really good sports massage practitioner or physio handy. My low back pain that made walking more than about 100 yds nothing short of murder was myofascial pain syndrome: small foci develop in muscles which are concentrations of cytokines - the same substances that lead to the overall pain and stiffness in PMR - and form hard knots in the middle of larger muscle groups. They are often relieved by higher dose pred but return as you reduce the dose. They can be relieved in several ways including local cortisone injections and mobilisation of the trigger point with manual techniques. The latter can be done by physios or massage therapists - if you go down that road be warned you will probably feel worse before your feel better because releasing the cytokines into the system will cause what is apparently a flare in the PMR! Drinking loads of water and a careful practitioner will reduce that and it does go after a couple of days. 

Bowen therapy is rather different, it is a very gentle manual technique which looks very innocuous - but it really does work. My Bowen practitioner in the NE gave a talk at the PMR/GCA support group in Gateshead a few weeks ago. The founder there gave in to my nagging last Christmas and finally went to see her. MrsK had been bed-bound, barely able to get to the bathroom next door with a zimmer frame. She'd had to give up driving. A friend took her to Joanne and she hobbled from the car parked outside to the door with a stick in one hand and the friend supporting her on the other side. After an hour session she walked back out to the car - and sent the friend back to fetch the walking stick which she'd totally forgotten about! A good therapist will tell you that if it is going to work for you you will know after a maximum of 3 sessions - not like chiropracters I've heard tell patients they will need a session a month for life! MrsK is now on maintence sessions every couple of months but is pretty well back to normal mobility. If the cause is a chronic one you won't manage to get rid of it totally, incorrect posture (not necessarily your fault despite what some physios will try to tell you) can put so much strain on the muscles that they go into spasm to protect themselves - and then one final straw breaks your back not the camel's! I was told by an orthopaedic specialist it was wear and tear and I'd have to live with it. The physio I saw after ending up totally immobile as a result was disgusted - "I could have told him what it was but they don't think of muscles, just bones!"

Bowen is called something else in the USA - can't remember offhand what it is - where are you? Google it - there are two groups in the UK with different members. Several people on the forums have tried it for similar problems with good results. You may not end up totally pain-free but with a bit of luck you will be a lot better than you are now.

And be careful mixing pred and naproxen - it's an NSAID whatever they claim about being less hard on the stomach. I hope you are taking ranatidine (my preference) or a PPI as well.

Thanks for the greta input.

I'm in Warwick in the Midlands.

The DR has been very carring about stomach problems and I have been on Omeprazole for a long time. I take the lowest dose am and pm and I always try and have something to eat with the naproxin but for some unknown reason I have a sort of healthy repect for the stuff. I would rather not have it but Paracetemol does nothing for my pain or cause of it.

The Rhummi wanted to put me on mtx but I refused. He saw it as a steroid reducing agent and then a longer term pain contriol. But for me I could not get my head round usuing another strong medicine to help come off something else. The possible side effects of mtx sound worse, by far, than pred. I have been so fortunate and had no problems, effects or anything with the pred but do accept it maybe causing unklnown side effects not yet demonstated.

The gruelling part of this is that I know on 10mg of pred I'm a very happy bunny! Where I am now is a daily balance of pain and mobility and whatever pill helps me cover it.

I do feel a bit of a heel whn I read what so many other people suffer and go through and view my own troubles as both minor and manageable, even if I do say it with a wincing smile!

Seriousley a big thank you . . . .

We are sure that reducing VERY slowly and taking care of other issues such as myofascial pain syndrome and/or spasmed muscles separately would avoid the use of mtx which really has not be demonstrated to have a long lasting effect in PMR. It works in patients who have been wrongly diagnosed with PMR but actually have late onset RA which can appear almost identical. I have never heard of mtx being a painkiller - because that is effectively what he is saying. PMR isn't a general arthritis where mtx might work and I know at least 2 ladies who were persuaded to try mtx, reduced well at first and then both had massive flares necessitating a return to 15mg pred. Maybe being a bit more cautious and accepting a higher dose of pred in the interim might have avoided that - and for one of them it was GCA that appeared. Mtx has no role in GCA - there is consensus on THAT!

I've discussed this in depth with the pain management doctor I saw here (an anaesthetist who gave me cortisone injections into the trigger points as well as using needling - OMG painful but they work miracles!) and an orthopaedic guy from Germany who did research into what the trigger points are due to and found the cytokines. Both of them say the same as was my opinion - there is PMR and there are the other problems which can be dealt with separately so that the oral dose of pred can be reduced much further. You CAN deal with them with a high dose of pred - but if you target the treatment you don't need as much systemic pred. It's a no-brainer if you ask me.

Wow!  51 is very young to be troubled with PMR - and I moan about starting at 72!!  I thought if one was younger one could cope better.  I have a friend who started  with PMR when she was 54.  Within 2 years, practically to the day, her PMR disappeared.  She is now in her mid- sixties and has never had a flare.

Something else:    

All experts say exercising is essential when one has PMR. Accepted!  My physio says "do as much as you can but stop when it hurts".  Heavens above - it hurts like hell before I start.  Any suggestions anybody?

If you are younger it is probably a bigger shock - I was still working and it was lucky I was a freelance translator. I only had to get from bed to desk and not even get dressed for the office never mind commute! When you are retired at least you can say "I can't today..." and it isn't going to be the end of the world - or your job.

Yes - I'm sure exercising is essential but if the experts had ever had PMR themselves they might realise it isn't as simple as that! And no one will offer or approve hydrotherapy - when the NE support group approached (I think) Arthritis UK to be allowed access to the new hydrotherapy pool they were told we didn't need it, I had a few sessions in the one here but that was all I could have and not nearly enough. I did find aqua aerobics very useful - I was a member of a gym with a warm pool and daily aqua classes where I did what I could, always moderating the exercises. That was pre-pred and it kept me mobile enough to cope without pred since no one would give it me, I was "too young and you have normal bloods". 

It's all very well saying "stop when it hurts" but that is far too late. Our muscles are intolerant of exercise and take days to recover not hours as normal. You have to stop BEFORE you do further damage and any physio who says that doesn't know much about PMR. Most of us try to walk for 1/2 hour a day - but we also know the despair when that brick wall jumps out in front of us and you wonder how the hell you will get home! One lady had to be rescued by a neighbour in a nearby street when she was found sitting on his garden wall! One lady bought those cycle pedal things and sat in front of her TV cycling away - maybe? And I did manage Pilates and Iyengah yoga with a brilliant teacher who adapted everything for me - and helped me up when I was stuck!

Eileen, I just read your message with interest.  My son told me that I should exercise more, like I used to be able to in the past.  I am hesitant joining a club with their particular routine of classes which I might not be able to follow.  Swimming on my own in the pool might be an option, or one of these stationary bikes.....

I used to practice Yoga in my younger years, but the pressure on wrist and arms can be too much.  No need to answer to this message --- I am onl yexpressing my thoughts to your input about exercise which is very worthwhile.

"My son told me that I should exercise more, like I used to be able to in the past"

Yes - but as the Irishman said when asked the way "I wouldn't be starting from here..."  You are no longer in the past, you are in the here and now. And it is a very different place - we wish it wasn't.

I find it increasingly amusing if not frustratingly challenging to see the alarm that most medics try and I gender over getting off Pred at any cost . . .

Does a couple of mg of steroids cause more damage than loading NSAID or paracetamol or whatever into the system. I don't KNOW but I would rather take a little longer and not have an extra drug down my throat.

i am also prepared to confess I do get cosy on steroids but who does not want to be pain free and mobile and wake up free! For me that is all it takes an extra 2.5mg of Prednisolone or 4x Naproxen plus a it of something else and even then I am in low pain all day. 

Having got to 7.5mg a day I am really hoping that I balance out and then I will be a lot more involved in the process. Better be a bit careful as ai arm waiting for a blood report!

Interestingly David, this is exactly what a former GP said to us on another forum recently. In her former life she tried to rush people off steroids - but now she herself has PMR her attitude has changed completely! I wonder why! 

However you look at it, PMR is going to make you immobile if you don't get a decent dose of pred. if you are on pred you are told you have increased your risk factors for osteoporosis, raised blood sugar, raised cholesterol and weight gain. Ditto if you are immobile. PMR is often accompanied by depressive mood, ditto pred maybe. Only about half of patients on pred develop osteoporosis - and those are old data I suspect. I am sure our generation is less at risk than that of our parents. 

Be that as it may, one lady was told by her GP to take ibuprofen for the pain that turned out to be PMR. Three doses later she was in A&E with a coffee ground gastric bleed. Life threatening, scary and unpleasant for both patient and healthcare staff. Another lady was ordered to reduce pred and take"perfectly safe at maximum dose" paracetamol for the pain her GP was sure wasn't PMR but osteoarthritis that had been masked by pred. She wasn't happy but what can you do? A couple of months down the line her routine blood tests showed raised liver enzymes and a s£"! scared GP sends her off for an urgent liver ultrasound. It was the paracetamol. This lady is well into her 80s, has just had a hip replacement and been told her bone density is amazing for her age. The chances of osteoporosis after another year or so of the very low dose she was on were minimal. Now she's had the hip replacement she is off pred - that has happened to a few: remove the other source of pain and it all sorts itself out.

It is a balance. I'll take the risks of odteoporosis in 15 years time against the choice of a devcent quality of life now. If I stop pred and become unable to walk and climb stairs and spend my days in pain I will definitely become depressed and put on weight and put myself at risk of osteoporosis. If I continue with pred that may happen - but it isn't certain. 

Put your brains in gear folks. My GP here panics I'm reducing too fast - I wish she could explain the logic to some others!

Well said and GREAT advise to all of us PMR sufferers! Let's stop worrying and love the Prednisone!

Wow! EileenH as my grandchildren would say that's cool!

i have no doubt that pushing for a reduction in dose of steroids rather than carefully balancing the whole act is what has in the end cost me a much longer journey. And for why . . . as you say bone reduction that may never happen.

How many people do get osteoporosis.

I have got up early every Saturday morning to take my Alendronic Acid since I started the week I started the Prednisolone. I have had two Adcal-D3 every day, so that a big dose of calcium and Vit D.

Thanks . . .

how many people do suffer severe 

I agree with Eileen!  Let's stop worrying and love the Prednisone --- the alternative is not good.  I am glad that my GP agreed with me today......not all doctors do.

 

I don't blame you for refusing to agree to take MTX. My RA doctor wanted me to use it as well and I did not agree with him, because of the horrible side effects.  You are doing well on 10 mg which is great.  I am on 15 mg.....it will take a few months to slowly taper down.

I have learned so much with this forum, and I am less confused and scaredl like I was initially after the  PMR diagnosis 4 months ago.  Eileen has been of very helpful guidance.

Thank you so much for that encouragement. I've actually got myself down to 7.5mg but supported by naproxen . . . . But I have decided that I must drop them as there is little point in pushing to get the Prednisolone down to avoid serious side effects if it takes another drug with equally bad side effects to do it.

Yesterday I only took one naproxen and today it will be none. But I do have the edge of the usual PMR signs, slight pain in the shoulder and bad pelvic pain. But a few cups of tea and get up slow will cover that in a couple of hours.

thanks for coming back to me . . .