Questions on Withdrawal Pain vs PMR Pain when Reducing

Please what is withdrawal pain? I have today reduced from 10mg to 9mg after about 3 weeks at 10mg. I have excruciating lower back pain when I stand or walk which has just got worse over a period of years and has not really changed since the onset of PMR. However I have lost my energy, become very tired, am not eating as much but have gained weight and my memory seems to be deteriorating. My latest blood test was normal so I expected to feel better. I am not feeling sorry for myself and am trying to carry on with my hobbies as normal  but flag very easily. Is this what is meant by withdrawal symptoms I wonder?

When you are taking pred your body gets used to it being there. If you reduce the dose by too much at a time then for some people it can cause pain because the pred has been taken away - in much the same way as drug addicts or alcoholics bodies get used to their "poison" and if it is taken away they have problems. Don't misunderstand, it isn't addiction in the same way but your body has to get used to it being taken away. That is withdrawal pain: it often is very similar to the pain of the illness you are taking the pred for inthe first place. 

I'm not surprised you feel unwell - 3 weeks at 10mg is far too little before starting on your next reduction. You need at least a month and preferably rahter more. Just because the blood tests are normal does not mean the PMR has gone away - it means you are on enough pred to control the inflammation, whether that is well above what you need or jsut what you need can't be assessed. I keep saying, the Bristol group keeps their patients at 10mg for a year - by that stage you are close to the amount of corticosteroid the body makes anyway so it becomes more difficult to reduce. You should not reduce more than 10% of the current dose anyway - but for many people even that is too much to do from one day to the next.  All those things you describe are common with both PMR and with pred and are due in the PMR to the underlying autoimmune disorder that gives rise to the symptoms which we call PMR - pred doesn't affect that part of PMR so you will still feel fatigued and so on unless you rest enough. You cannot carry on "as normal" - you can carry on yes, but you have to learn to pace yourself and only do what your body can manage or you will flag. You don't say what your hobbies are - maybe they are hard work ones???? 

The low back pain is something separate from the PMR I suspect - either myofascial pain syndrome or other spasmed muscles in your low back. I personally would recommend you consult a Bowen practitioner (probably the gentlest option for low back pain) or see a physiotherapist because it needs to be sorted out itself, possibly with local cortisone injections and some physiotherapy. I do know about that - I ended up in hospital with something similar a couple of years ago. An orthopaedic doctor told me it was "wear and tear" and there was nothing to be don, I couldn't walk or stand for more than about quarter of an hour, the pain was awful. Physio and cortisone shots sorted it - but in the UK I had kept it under control with Bowen therapy.

Thank-you for your comprehensive reply, it is really helpful. My hobbies are mainly sedentary artistic plus singing and bowls. Have had to give up on the singing and bowls but am managing the artistic in short bursts! You might like to know that I am a normally very active 82 year old who finds 'resting' very difficult to swallow. Have taken your advice and booked a physiotherapy session for my back - I do not like to argue with my GP about the periods of reduction in pred = my instructions are to reduce by 1mg per fortnight (which pleased me because I am a very  anti-medication person unless it is proven to be really necessary like the medication I take because of my stent). I will look up Bowen practitioner - have not heard of it before. Thanks again.

If you have PMR and reduce too far or too fast all that will happen is the symptoms will come back. 1mg every 2 weeks is far too fast if you are looking for the lowest dose that controls the symptoms - 2 weeks is not enough time for any returning inflammation to make itself felt. 

PMR is due to a chronic disorder, sometimes that autoimmune part burns out and then you can stop taking the pred, but until then you will need some pred to control the inflammation that causes the pain and stiffness. If you bring on a flare by reducing too fast or too far then you will have to return to a higher dose to bring it under control again so the benefit of the reduction is lost. If you don't take enough pred then you will have symptoms AND the risk of side effects. 

Many GPs fall into the trap of thinking that in PMR they can give a one-off course of pred and reduce it fairly quickly as they do with other illnesses - it doesn't work like that. The cause is this underlying autoimmune disorder and that isn't affected by the pred at all, as long as it is active it will cause symptoms - the reason you went to the doctor in the first place. 

The link I gave Jean above takes you to a thread on this site. In the first post there are other links to other places you can get info and the last link in the post is to a paper aimed at GPs to help them diagnose and manage PMR better - from one of the top groups in PMR in the UK. They take 3 months to get to 10mg and then leave the patient there for a year. Doing this they find they have relapse rates of 1 in 5 instead of 3 in 5 as found with other reduction schemes. 

It is called "Our approach to the diagnosis and management of polymyalgia rheumatica and giant cell arteritis" and is by V Quick and Prof J Kirwan who were both in Bristol when they wrote it. Your GP could benefit from reading it.

Hi Jaydy. I do not know if this will help but last Monday my doctor advised me to drop from 21mg (that I was currently on) down to 10mg within the next 2 weeks so that he can do allergy tests for a rash that has appeared. 4 days later I am now down to 16mg and I am beginning to feel pain in my shoulders and behind my legs which is where I had it originally, I am also getting tired very quickly and waking up with a headache. I assume this is the PMR rather than withdrawal as I only reduced 4 days ago. I hate to think what it will be like in a weeks time when I have got down to 10mg. Good luck and I hope all goes well for you.

Withdrawal pain will appear quickly - as soon as the next day usually and then improve over a few weeks as your body gets used to being without it. PMR pain will usually take a few days at least to appear as the inflammation should have been under control at the higher dose and it takes a bit of time for the inflammation to ramp up enough to cause the symptoms again. What you are describing tavidu sounds more like withdrawal.

Of course, you can have immediate pain due to withdrawal and as that improves you may start to get PMR pain as the dose is too low to control the inflammation.

Thanks Eileen, its a big drop to deal with over 14 days but hopefully the doctor will then be able to do allergy tests once down to 10mg. I think its a case of hope for the best but expect the worst and deal with it accordingly. thanks again. tavidu (Dave)