I have not written for a while since having my cataract operation which sadly has not worked as my sight is worse than pre op.
I saw my excellent rheumatologist yesterday and explained that I have had pain down the outside of my left leg for many months with occasionally a few days of remission until October when it became much more severe especially when standing and on weight bearing and I now have pain in my lower back and left buttock. He says that it is due to prednisolone, which I have been taking for 15 months starting at 60mg and now down to 5mg, affecting the muscles. I also have had a very stiff painful neck which, after examination, he said was also caused by prednisolone.
He suggests taking paracetamol and walking in a warm swimming pool to strengthen the muscles as it is too painful for me to swim at present. I did not realise that you should not take naproxen or ibuprofen with prednisolone - oh dear as I had been taking them.
I feel a complete wreck and worse than I did a year ago. Has anyone had the same symptoms and do they have advice on what helped them? Many thanks.
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jennifer15
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Oh thank you for the reassurance. Sorry, you sound in a much worse state than me. I would be interested in what physio suggests. I did see a physio who said it was sciatica, she has referred me for a MRI so will see if that shows anything.
Hope you are home from hospital and start to improve soon.
Someone with more knowledge will come along soon to advise, but it seems a very rapid drop to me....it sounds like you are not on a high enough dose to control the inflammation....you may have to raise the amount till you feel comfortable....good luck...
I wouldn't take what he says at face value. You have a muscle problem - but it isn't necessarily due to steroids and could well be associated with having PMR as a symptom of your GCA, it isn't uncommon. Nor is his recommendation particularly helpful since it is impossible to strengthen the muscles until they have been stopped from spasming. Exercising tight muscles will only make them spasm more in an attempt to stop you hurting them more - it is a natural protective response.
I had identical symptoms which one orthopod insisted were due to wear and tear in the spine and I would have to live with it: I was barely 60 and couldn't walk or stand for more than 10 mins at a time without low back pain but because I thought he might have a point I didn't look further at the time and did put up with it as it did improve some. Eventually, as a result of being switched to methyl prednisolone from prednisolone (pred isn't available here, methy pred is), I developed steroid myopathy quite quickly and then later achilles tendonitis because of being given a quinolone antibiotic. The myopathy was different though - and I still had a back problem.
Eventually I tripped and fell - and within a week or so my back was worse, after about 3 weeks it suddenly went into spasm and I was admitted to hospital unable to move without excruciating sacroiliac pain. Their first approach was wonderfully effective - but the drugs used triggered a severe episode of atrial fibrillation and I was sent to the pain specialist - who identified that all my back muscles were as hard as boards and causing referred pain in arms, legs, ribs because of the nearby nerves being irritated and even pinched by the spasmed muscles. She worked on that - it took several months but has held for about 4 years and only now is starting to niggle again. I was also switched from Medrol to prednisone in the form of Lodotra and all the myopathy problems resolved, I walked (using crutches at first) and the muscles all built up again and I have had no further myopathy problems. We don't respond the same to all forms of corticosteroid.
I don't know where you live or what is available to you - but in the UK I think I might start by looking for a good sports physio or sports massage therapist. The sort who work with athletes - often to be found in private physio practices set up at or near cricket or football grounds! Slightly more alternative practices are also good for this sort of thing - NHS physios can be good but are more often hopeless, not least because they don't have the time and look at their problems the way your rheumy did - exercises to build up the muscles before making the muscles able to do it. Remedial or sports massage aims to soften the tight muscles, it can be a bit painful at first, they are inflamed because of the same cytokines (inflammatory substances) that cause PMR but they are trapped in the muscles and the fascia (the transparent skin you will have seen on meat or poultry joints) and releasing them into the bloodstream with the mobilisation techniques may make you feel as if the PMR is flaring. It isn't and it passes. I also found Bowen technique helped a lot but it must be the right therapist - that varies too.
You won't get Lodotra in the NHS - it is too expensive and is ony available on a private script at up to about £100 per month depending on your dose. But there are forms of prednisone and methyl pred that should be available in the UK. My point was that we respond differently to different forms of the steroids.
But I don't think your main problem is myopathy and it can be improved with the right sort of exercises. But first you need to get the spasmed muscles sorted out - the trouble is, most doctors don't realise just how much effect that can have.
OMG....I was not aware that you had been through such an ordeal (despite reading many of your responses). Reading your story definitely generated some anger and frustration, so I can't imagine what it was like to go through that whole process. You are one strong and resilient woman, and I'm so glad you finally got access to professionals and treatments that provided healing and mobility, but at the same time, how awful to endure all that pain prior.
Thanks again for your response, eye-opening as usual PMRpro.
Thanks PMRCanada - it was an INTERESTING year or so! I never really felt/feel angry about that - it was the culmination of whiplash after a car accident - an elderly man drove out in front of me AFTER he had already stopped at the junction! Luckily in front of a witness - who called the police AND stayed to give a statement. The police were a hoot - the 2 most senior officers in Garmisch-Partenkirchen as they were all that were left at the time, there'd been 1/2m of snow in the morning so there had been a lot to do! The bloke tried to make out I'd been speeding - and the policeman just laughed at him. That did make it feel a bit better, I was angry then - I was hopping around in utter fury, I'd never had an accident before and he made a horrible mess of my car. These things pass...
I was told by my rheumatologist in the USA that my thigh muscle weakness is from PMR and sometimes I get pain on the sides of my bottom legs, again rheumatologist says it’s PMR. He suggests swimming and walking. It helps. I live in Florida. Too cool to swim at the moment even though my pool is heated. I do not take ibuprofen for thigh and leg pains or other pains because it hurts my stomach and it’s not great for the kidneys. Once in awhile I take Tylenol which helps. I take CBD oil and 1 tsp of black cumin organic oil and turmeric and artic krill oil and other supplements. The CBD helps at night 2 ways: sleeping and pain. I rub it into my thigh muscles at night. Helps.
Hello, sorry to hear this. My husband gets this and he’s 45 fit and healthy. I’ve had the same since Pred. Both osteopath and physio say to do ileotibial band exercises and it works a treat for both of us. You hear of runners getting it but an imbalance in the muscles can end up causing tightness in the band that runs from the hip to knee. You can get pain in the knee, hip and down the side. It’s worth a crack at the exercises that you can do gently just to see if it helps. Here is good video, but the first exercise is a bit advanced to start with.
I definitely had spasmed muscles which a physiotherapist sorted out for me. It is true that pred can weaken muscles, which can make it easier to injure yourself doing quite ordinary things. Again, good physiotherapy from a practitioner who understands PMR can help.
You can take paracetamol and use the gels sparingly with Pred. Have they also considered either of the following - bursistis or arthritis of the hip (mine gives me pain outer upper leg, buttock and back).
Yes, the rheumatologist suggested voltarol on my lower spine and paracetamol and it did help last night but back again today so will reapply. Reluctant to have too many paracetamol!
The NHS physio has requested an MRI so hopefully that would show arthritis- would it?
I take Naproxen and Pred. Couldn’t walk without it. I have OA and PMR. My leg and buttock pain is sciatica and Duloxcetine fixes that. You have to take Lanzaprozole as a PPI if you do take the two together.
I have had sciatica a couple of times with PMR, it is absolute agony. I have found the only thing that worked somewhat was having physio. Painkillers really were not much good in my case.
If only we could take Pred without the side effects. Might not have any muscles but wouldn’t feel pain? Think I am immune to paracetamol and cocodamol with Naproxen just plays havoc with my bowels. Core strength exercises do help my mental attitude to pain. I go to the gym and swim a few times a week to use the treadmill and machines but it takes great effort to work through the “I can’t do it “ mindset. It stops me thinking about food too as I need to loose weight mainly for health reasons. Bit of a vicious circle. Hope you find something that works for you soon.
Hi, no pain killers seemed to help me either. Although last night with just voltarol and paracetamol it seemed a bit easier! I will try a good physio and hope for the best.
Thank you for writing. The physio diagnosed sciatica on history, no examination given! I was given exercises to do but they are now too painful to do as pain has got worse.
Hi Jennifer I am so sorry to hear of all this pain that you're going through. I applaud you for posting this because I too am suffering a lot of pain especially in my back. In 1996 I was diagnosed with MS and put on bursts of high prednisone, one week on at 500 mg intravenously per day. Then six months off and again another one week this one on for 3 years. Until finally after feeling really crappy, I told my doctor I was not going to be coming in for any more IVs. It would wreak havoc with me. I would blow up like a Big Tomato. My face was all Red, bouts of heavy sweats, lung infections and my pulse would just race. Now, all these years later I to have cataracts, as I said the pain in my spine is so intense. I was wondering what the pains in my muscle were all about and I've never thought to talk to the doctor about it. So this is the reason that we post these things and the outcome. You just never know who it helps! Thank you for sharing. I do hope you find a solution. The one thing I find helps is pursuing my interest in painting, it takes my mind off it. Oh, pain killers take the edge off a bit. But just a bit.
Oh dear, sounds as though you have been through so much. So sorry about your MS. I am glad that painting and pain killers help a little but hope that you can get more help, relief.
If its trapped nerves as in sciatica or a trapped femoral nerve which caused compression (which I had) an osteopath can release them from vertebrae that trap them. After only 5 sessions I was cured of the sharp pain of the trapped nerve, which caused spasms, and eventually the pain in my thigh . I still have PMR though.
Thank you, that is very reassuring. It would be good to think that it was something that can be cured. The pain on weight bearing today is terrible so nothing has got done!
Hi Jennifer so sorry to hear about your pain. You seem to have been given lots of good advice. So I can’t add to it, but does sound very sciatica like.
However I was homing in on what you said about you cataract op. My grandmother had the op then things deteriorated so she went back and they sorted the problem via laser. The lenses they put in have a capsule around them that for a minority of people tightens and causes visual probs. It’s lasered off and vision restored. Just a brief process done in out patients in a treatment room, worth asking unless you have already done so.
We go to the same Rheumy clinic I believe. I now see the consultant not the prof. Did you ever get your dexa scan and was it ok. I can’t see any report on it. Really hope the pain eases soon. All the best cc 🤗
Thanks for advice re eyes. I am under Prof Maclaren but it seemed that Darius Hildebrand did the op (a paediatric ophthalmologist). When I saw Prof Maclaren at 5ge end o& October he said I needed another operation at the back of my eye but I have heard no more about it and am actually reluctant to have another operation in case that makes things even worse! When I get my leg problem sorted I will start looking into my eye again and your information is very helpful, thank you.
Seems that you have been ill for quite a long time, sorry. Why are you not seeing Prof Luqmani now?
Hi. Lorraine Oneill is the consultant who works with the prof on the Thursday clinic. She diagnosed me with GCA (already had pmr) I got moved to the Tuesday clinic and don’t see him anymore. One is for new ones and the other for follow ups I believe but appt are constantly being cancelled and moved as it’s so busy. Tuesday suits me better so I’m happy. You didn’t say about the dexa or maybe you don’t want to. Keep smiling cc 🤗
Hi, yes the GP did arrange it in the end and it showed that I had osteopenia which was a shock. As I have had GERD for years I saw a lady Dr at the clinic at the Nuffied ( ? Name) and I had an infusion in the summer. I forgot as I seem to have had so many other irritating things since then, It goes on and on doesn’t It? Thanks, jenny
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