I wonder if anyone has experienced considerable pain in back, hips, knees and thighs while reducing steroids? I have been tapering gradually from 40 mg to currently 10 mg. I am also on Methotrexate. I was diagnosed with GCA in August 2014.
I am not sure if the pain is related to the steroids or if the steroids have been masking pain that I would have experiened without them. If the latter and this pain is going to be with me for ever, I am going to have to make some changes to my life, for example, move from a house with many stairs.
It would be very useful to have the views of other people who have suffered similarly. Thank you in advance.
Penelope
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What sort of size reduction steps have you used? People often experience discomfort of that sort if they are too big. But if you are that restricted that you have to consider moving it doesn't sound as if that is all that is going on.
I would suggest you try to find a Bowen practitioner and try up to 3 sessions, many people with similar problems to those you mention (myself included) have got a lot of pain relief after Bowen therapy. Something called myofascial pain syndrome often occurs alongside PMR and then causes referred pain into back and legs. It fades at higher doses of pred as it is also due to inflammation but in 3 pairs of trigger spots alongside the spine. There are various ways of approaching it, Bowen is the gentlest and least invasive and is what I would try first. Other options are cortisone injections to relax the muscles and manual mobilisation of the trigger spots, done by a physiotherapist or sport massage therapist. Definitely worth a try before going to the expense of moving house!
I sympathise with you. I have had PMR since January and have reduced from 15 mg Pred to 10 mg by July using the very slow method. In July I woke up one morning with terrible back, groin and hip/ buttock pains but only on my left side. After two weeks, on two walking sticks, I went to the doctor ( a locum) who said it was unlikely to be PMR related as it was only on one side. An X-ray was taken which showed 'wear and tear' in my back and hip joint. My own doctor said take paracetamol and exercise in water. I have been trying that.
I am still in pain particularly in the groin area, still using a stick, and have terrible back pain if I do much work involving my back. I have had back pain before but it has never been as bad as this. This feels as though there is more to it - but what?
I am off to Edinburgh for a reunion with friends next week, not a good time to be in pain, but will no doubt get through it with lots of chats and laughs about our younger days! I intend to really address the problem when I get back but will be interested in any helpful comments you are given on this forum.
I had a similar experience and a private orthopod blithely informed me that the low back pain I had was due to wear and tear and I would have to live with it. Luckily for me I had something far worse about 18 months later and was admitted to hospital since I couldn't move - where it was established that my back muscles were in spasm and as hard as boards. A few things were done but it included cortisone and muscle relaxant injections into the muscles to start with - decidedly nippy sweeties but it worked. Then we went onto more conservative approaches (i.e. non-invasive)
It was identified as myofascial pain syndrome - all or some of pairs of trigger points alongside your spine form hard knots of muscle fibres: in shoulders, about rib level and in the low back. Direct injections of cortisone help a lot s I said but manual mobilisation of those trigger points by a physio or sports massage therapist can do it too, just a bit slower. Bowen therapy will also help a LOT - gentle, non-invasive and you don't need a doctor to prescribe it. See if you can find a practitioner near you.
Sambucca and I can wax lyrical - and a lot of others on the forums have tried it with success too. The PMR pain will probably not go - but I found that I needed a far lower dose of pred to manage it once the other stuff was relieved. A trial in the NE is looking at whether Bowen can help patients for who the pain clinic can do no more - typical, try it in the hopeless cases! But we think it will help so are looking forward to the results.
And I do wish doctors would read the latest reviews on paracetamol - it is said to be no better than placebo for low back pain and really not very good for our liver. There is a very narrow line between the max. dose per 24 hours and enough to cause liver damage. One lady with OA pain that was returning as she reduced pred was told to take paracetamol - 2 months later her bloods tests showed raised liver enzymes so her panic stricken GP sent her for an ultrasound. All fine - stopped paracetamol and all was back to normal!
I had blood test results last month and my liver was fine but when I return from Edinburgh next week I will source a Bowen therapist and hopefully give it a go.
Before I am able to get my next supply of pills I must make an appointment with my doctor or a nurse so that will give me the opportunity to discuss the issues you have pointed out re paracetamol etc.
Once again thank you for taking the time to help me, I really appreciate it.
Don't want to worry you but Steroids may leave you with some level of pain even after a long slow reduction plan. It did in my case as a GCA sightloss victim in one eye. Maybe the Bowen therapy could help you but my GP just gives me paracetamol for regulating the joint pain and it keeps it bearable. Good luck when you get to Club Zero!
Oh yes! same problems when reducing dosage. I am going to say this and it will make many of you very angry but I have to say it because it is true. Dr's are not taught how to cure disease in med/school only to treat the symptoms because big Pharma is calling all of the shots and does not want a cure for any disease.
They want us on their drugs for life, because if a cure is found we do not need their drugs and that reduces their 500 billion dollar revenue stream. Think about it?
Accept the fact that Drugs are a tremendously profitable source of revenue and any threat to the income from drugs will not be tolerated. They say their is no cure for PMR/GCA, BS. Well, they do not want a cure because they want you on Pred.
They are not interested in research to find out what causes the inflammation, where does it come from? All of my friends close to my age (76) and few are a little older are junk eaters, diets high in white sugar, pork, red meat, pizza and everything a person should not eat and they do not have PMR, why?
The conclusion may be that it is not diet related, but where does it come from? I asked my GP this question and he could not give me an answer that made and intelligent sense, all he said was it is an inflammatory disorder. I asked him Where does the inflammation come from? and what causes it? He says we do not know.
I said "Dr" your answer is unacceptable and really pisses me off for all the schooling you have had and you still go along with treating the symptoms vs finding out what the underlying cause is to treat it to rid our body of this horrible disorder.
I beg anyone reading this to ask their Dr's these same questions and see what answers they come up with.
They do not want to discuss what causes PMR/GCA because you are putting them on the spot and they do not like to be challenged and would rather just write out a prescription for Preds and send you on your way and see the next patient because that is the easy way out.
Remember, there is no money in health! The money is made in treating disease not curing it.
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