P M R and P H N together

Bones, joints and muscles
1

I have been suffering from PMR for about 8 months and am on a decreasing

course of Preds, now down to 12.5 mg.(been higher and been lower)

I also suffer with Post Herpetic Neuralgia (the after effects of shingles) for which I take Tramadol and Amitriptyline.

The problem I have is that as they both effect much the same area of my body, ie. my shoulders and neck how do I tell which of the complaints is causing pain at any given time. The pain with PMR seems to come in lumps whilst the pain with PHN is slightly more precise, but sometimes I don't know which is which.

I have been led to understand that drugs like Tramadol have little or no effect on the relief of PMR.and if this is the case then the pain I'm suffering at present must be PHN.I don't want to start upping my Preds unless I realy have to. I would find it difficult to explain it to my doctor  as the last PMR flare up I had didn't make much difference to the blood tests that were taken at the time.

Any body got any advice?, is it right about the Tramadol not relieving the pain of PMR?

 

2

I took Tramadol before I was diagnosed with PMR and it did not seem to make a blind bit if difference. It took pred to relieve the pain for me. 

3

I have another question rather than reply.  I was on amitripyline for several months.  I developed such a sore, dry mouth and tongue, I could hardly eat anything that had any spice to it at all. Things that never bothered me before. I was thirsty all the time. Had trouble with my gums.  I tried different doctors until one Internist told me it was the amitripyline and since it was prescribed by my psychiatrist, he would have to change them. She would not.  I called that day. He changed me to another.sleep medication.  Within a few days my side effects abated so I could eat again.

4

Steve  I take Tramadol for lower back and hip pain and PMR in my joints. It seems to work very good for the pain of both these areas. Prednisone took away most inflamation in my joints so I dont need the Tramadol as often.

5

At least we think at this point it is PMR but my inflamation level has gone way up so that leaves the Doctor wondering what it is. He is sending me to a specialist to find out.

6

It is unusual for normal pain killers to have much effect on the pain of PMR and certainly doesn't do anything for the stiffness which is a major component of PMR. 

Many people seem to develop what is almost certainly myofascial pain syndrome and that leads to referred pain, mainly in the neck and shoulders, back, hips and thighs depending on which of the trigger points are involved. I imagine tramadol would have a beneficial effect there.

You mention a flare - was it really a flare? A lot can depend on how you reduce the pred dose. It is common for doctors to tell patients to reduce in 2.5mg or even 5mg steps and our experience is that that is far too large drops in dose. 1mg at a time is far better and spreading that 1mg drop over a few weeks is even better. There are a couple of reduction schedules floating about on the forums and I will post my version which quite a few people on the forums are following and have found it works well. A very similar version is being used elsewhere with good results too. The theory is explained in it:

A group of us worked out reduction schemes individually that have allowed us to reduce far further than ever before but they are all basically the same - and they were based on a scheme a Swedish gentleman worked out when he simply couldn't get below 3mg without pain. Img at that level is 33%, 1/2mg is 17% - way above the 10% that has been recommended for years. So he used a table to see the daily doses and took the new dose on one day, old dose for a few days and then proceeded by repeating that and then reducing the number of days of old dose - until he got to everyday new dose. It worked, he got off pred and has been off pred for at least 3 years (it could be longer). Something similar to mine is being tried by a consultant rheumatologist in the north of England and he too finds it works for every single patient he has given it to, as it have done for several ladies beforehand.

My reductions are VERY slow. I use the following pattern to reduce each 1mg:

1 day new dose, 6 days old dose

1 day new dose, 5 days old dose

1 day new dose, 4 days old dose

1 day new dose, 3 days old dose

1 day new dose, 2 days old dose

1 day new dose, 1 day old dose

1 day old dose, 2 days new dose

1 day old dose, 3 days new dose

1 day old dose, 4 days new dose

1 day old dose, 5 days new dose

1 day old dose, 6 days new dose

By that stage if I feel OK I feel safe to go all new dose. I suppose you might be OK starting and stopping at "1 day new, 4 days old" but I was terribly sensitive to steroid withdrawal pain so I err on the safe side. Once you get to the "everyday new dose" - if you feel OK you can start on the next reduction, no real need to spend a month at the new dose.

This avoids steroid withdrawal pain - which is so similar to PMR pain that you often can't tell which is which and some of us suspect that many flares are NOT the PMR returning but problems with steroid withdrawal. Using a scheme like this also means you can stop immediately if you have any problems - you might be fine at one day old dose, 2 days new (lower) dose but not at a 3 day gap - but you have dropped your dose a lot and that is the idea. It also isn't as slow as you would think - you can reduce at a rate of about 1mg/month on a continual basis.

The Bristol group starts new patients with PMR with 6 weeks 15mg, 6 weeks at 12.5mg and then a year at 10mg before continuing the reduction and that achieves a far lower rate of flare (20% instead of 60%). I suspect their flares then come below 10mg as they do the 1mg at a time reduction. Just below 10mg is a common dose for people to get stuck at - and I (and others) believe it is because even 10% drops are too much for many patients. These patients are then labelled as "steroid resistant" or told they need methotrexate to help them reduce but we have seen this slow reduction work for those patients too. We believe that methotrexate (MTX) works for patients who have late onset rheumatoid arthritis (LORA) or LORA and PMR together. Very few patients get off pred altogether when taking the MTX – we suspect those who do are probably the mis-diagnosed LORA patients - or another arthritis that responds to MTX.

 

This reduction scheme is being used by quite a few members of the PMR/GCA UK forums (both of them) and the feedback to date has been good: people are being able to reduce without discomfort so they have stopped worrying about “flares” which probably also contributes to their well-being.

7

Hope you get things sorted Steve, and like me read this forum to arm myself with as much information as possible.paracetamol I think is the best pain drug which goes well with pred,but now sure about severity of PHN or for how long you need to take.

I have not posted for a while and am latching on to pred reduction advice which EileenH set out so well.

 I can't get down past 4mg, 31/2 the shoulder and back pain and total fatigue take over. I am in my 19th month of PMR and have been coming down in 1/2 mgs. ESR13.

Is it a known fact that it's harder to reduce on a small dose?

Shall I try the reduction you have set out EileenH? Can 1/2 mg make that much difference?

DJ

8

If you look hard enough somewhere there is a post from me to the effect of "Can 1/2mg make THAT much difference?" Yes it can!

Yes it is a known fact that reducing at lower doses is harder. The rule should be never more than 10% of your current dose at one time. At 10mg the 1mg reduction is 10%, at 5mg a 1/2mg reduction is 10% - at 4mg 1/2mg is already 12.5%. Add to that the fact that you are NOT NECESSARILY reducing to zero: you are looking for the lowest dose of pred that will manage your symptoms adequately. If the underlying autoimmune disorder that is the cause of PMR is still active you will continue to need some pred - the idea is the lowest you can manage. Most of us feel like a million dollars on 15mg (I'm excepting weight gain and so on, I'm talking PMR) but staying there will cause unacceptable side-effects. 

I found some years ago I could get to 17.5mg/2 days with no problem at all, 17.0mg simply didn't work. In fact, I ended up going back up to 20mg of methyl prednisolone a couple of years ago and even that didn't work much. I was changed to a different form of pred and immediately managed well with 15mg but since then I have reduced to 4mg using my scheme. At the higher doses it was definitely the fact that the much smoother way of reducing it allows avoided any feeling of "I've just reduced and don't I know it" nor did I need to take it easy for a week after a reduction, which sometimes also helps. Now I'd like to hope that after 10 years the underlying autoimmune problem has burnt out - but I'm not sure. 

You saying the fatigue is back suggests your autoimmune problem hasn't yet burnt out - it may be you won't get much below the 4mg. Or you are trying to do too much! The other thing I found was that as I reduced the dose another problem surfaced. There is something called myofascial pain syndrome where hard knots of muscle fibres form in the shoulders, alongside the spine and in the lower back. These can pinch nerves and cause referred pain radiating out from where they are - or even at some distance from them. Higher doses of pred help control that but as you reduce they start to play up again. They need more targetted treatment. My daughter has low back problems, the pain is in the outside of her thigh. At first she thought it was from a knee op a couple of years ago but gave in to persuasion from a friend and me and went to a sports physio - for £20/half hour he has worked on the problems and there is a massive improvement. A good sports/medical massage therapist can achieve good results and so can Bowen therapy. I had cortisone injections into the muscles - called needling, available through the health care system where I live and a bit similar to acupuncture so there are acupuncture practitioners in the UK who offer it. Once this was well under control and my back muscles were no longer as hard as boards the rest has been easier too.

But try my reduction - you have nothing to lose and you may manage to get to a lower dose. But it isn't end of the world if you can't yet. It will come.

9

Yes it was definitly a flare up, muscles felt like they were filled with ball bearings and joints stiffened, and I don't mean joints were just painful, they wouldn't go past a certain point without outside help.

PHN is also an autoimmune failure, (I've been tested for everything the doctor could come up with from diabetes, through potsium deficiency to HIV and all have proved negative)

My problem is not so much controlling the effects of the disease(s) but knowing which one needs controlling. Of course it could just be arthritis playing up because, like most heavy duty manual workers I have that as well.(who ever said hard work doesn't hurt you obviously didn't do much of it). 

If, as you say Tramadol has little effect on PMR or steroid withdrawal then what I'm suffering at present is probably PHN as the pain is greatly reduced by it.

It's easier both in the short term and longer term to experiment with Tramadol dossage than with pred dossage as the effects, if any are almost instantanious.

10

Eileen   Thanks so much for the help  just thinking what you said about coming off the 25mg a day to soon. I think you might be right because  I am starting to feel discomfort in my joints more so than I did when I was at 25. I am suppose to take a blood test on the 1st and see the doc on the 8th, he wants to see if inflamation level is the same.  Should I start taking more before then?  Maybe take the test now and then increase it?

11

It isn't a case of "a day too soon" - what I am talking about is the size of the drop. If the change in dose is too big the body can't cope with it - it has become used to the current dose, the new dose is a lot smaller. The body then produces aches and pains just in response to that fact - almost like drug withdrawal in addiction. It isn't "addiction" in the usually accepted sense however. And to make things even more difficult the withdrawal problems usually resemble the problem the pred was being taken for in the first place - so in PMR, pred withdrawal FEELS like PMR and it is difficult to say which is which.

The idea of the reduction scheme is that the change from week to week is small enough for the body not to notice it and not complain by responding with pain. If there is pain and stiffness it is much more likely to be the PMR flaring.

12

Darn - that last sentence isn't correct and I can't edit it now.

If pain returns on the slow reduction it is less that the PMR is flaring as such but more that you have reached the lowest dose that is managing the symptoms - the underlying autoimmune problem is still active and causing inflammation. This probably does burn out eventually in most people but some people take longer than others. And while it is going on, some people need more pred to control the symptoms than others - and large men probably may need more than petite women (or smaller men).