Went to pain management clinic at hospital on Friday. This was a referral from Rheumy, who wants a quicker reduction of pred. 15mgs June 2017, now trying to taper from 8.5 - 8 mgs for third time. Each taper brings painful aching in back of thighs and particularly back of neck./ between shoulders. At 15mgs miracle I held my head upright for first time in about 3 years-heaven! This was however short lived for approximately 5 months. The site of the neck problem is swollen / puffy. It is also where I would have particularly stubborn knots, caused by stress?, during whole body massages when I was fit and well.
Outcome of pain management appointment was appointment to have medial branch block (two injections), under local anaesthetic led by x ray since it is close to spine. I have already received the appointment for 7th September, but the info on the leaflet is making me have second thoughts. I had an injection for tennis elbow a few years back and procedure was simple and effective, so I was imagining this was same thing.
Can anyone share their experiences or knowledge of medial branch blocks please or any alternative solutions to pain management for what is effectively curvature of the neck!
All info gratefully received.
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Marilyn1959
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I know nothing about medial branch blocks, and I apologise for responding in answer to that specific question.
Are you sure this is what you need, and it is not that you are having too low a dose of pred after only one year?. I would have been back in PMR pain like you are after a relatively quick taper. At what dose of pred were you on when pain came back five months in? Could you try going up to the lowest dose which still worked for you.? See how you feel?
Hi Mary. Don't apologise! I was on my original dose of 15mgs for five months, during which time was trying Rheumy's taper of alternate days 15mgs / 10mgs. After this failed managed to get to 12.5mgs and was on this dose again for a couple of months but had minor aching in neck, shoulder blades and back of thighs. I was ok though on 10mgs. It has really been since on 8.5mgs / 8.00mgs that neck shoulder blades have become a problem. I have also felt some stiffness coming back last two days so.............
Oh Marylin why? The advice we are given seems so random and various, we all know what you need. I was diagnosed in March 2016 and have been stuck at 7 mgs for months and nobody is making a massive issue of it. I am sorry, this is not helpful and you must feel that it is your only choice. Good luck, you have to get relief. I have begun the slow climb down to 6 mgs, I feel exhausted with heavy limbs and the black crow of depression hovering over my shoulder but not much real pain, just achey. I can’t possibly put myself in your shoes with your Rheumie.
Hi Jane. I think they are trying to help however it seems that the pain management consultant was not talking about what I assumed was to be a steroid injection. I have GP appointment next week so wanted some info from members so that I can attempt to ask the right questions. Hopefully I will then be able to make more informed decisions. Here's hoping!!
What kind of taper plan have you used? If it was one provided by your rheumatologist it was probably too fast and steps down were too big. "It isn't slow if it works". By never dropping more than 1 mg at a time, eventually only .5 mg,, and using the dead slow nearly stop plan I was able to taper from 15 to 3 in my first year. I have since than been between 3 and 1.5, with a minor hiccup last summer, but have never had to consider returning to anything like the initial dose and I'm sure it was all due to a very slow taper, the key being "dead slow".
Have you considered seeing a physiotherapist who has some knowledge of PMR? Physio can give you a lot of relief from the add-ons like tense, spasmed muscles, and other painful conditions which seem to accompany PMR.
Hi Heron. I am trying dead slow tapering but have hit a wall at present. I think your suggestion of physio appeals more than the 'block' at present. I just feel the block should be considered further down the line, especially now I have received such thoughtful replies. Thank you.
I have had two series of lumbar medial branch blocks for facet syndrome, a form of stenosis/osteoarthritis. It is fairly short acting--weeks, months--and is often used as a diagnostic tool in preparation for the longer-acting radiofrequency ablation therapy. The latter is used to treat joints by destroying small nerves. I had both treatments. In my case, I got some relief from joint pain, but my muscles went into spasms from the needles and have not recovered 6 months later. You might want to know why they think this will help you.They do use it for cervical joint problems.
By the way I am on the board awaiting confirmation of a diagnosus of PMR.
Thanks Joaclp for your insight. Your experience reflects the leaflet info, hence this post. I cannot see the benefits of having the procedure if the effect is so short term and might leave me with more / stronger spasms????? The consultant didn't mention anything re diagnostic tool, though leaflet does. I think I need to see if I can speak to him on phone perhaps?
Hello Marilyn. It does sound like you need to ask more questions. For what it is worth, I had the treatments after seeing a pain specialist for almost a year and on the basis of an MRI that showed extensive joint damage. The blocks and radio therapy were preceded by many epidurals and treatment by an osteopath and a masseuse. My point being that nothing was suggested spur of the moment, as it seems almost to have been for you. As PMRpro says, from your account your neck problems seem to be myofacial, with an admixture of inflammation, and not in the joints. I am now having myofacial release phyical therapy to treat the muscles, which went ballastic from the very first medial block and the insertion of needles! I should have said, "no more." One last thought, here in US they use injections of small amounts of numbing medication to calm muscle spasms (temporarily).
Good luck finding out what is wrong with your neck and getting effective treatment. JoAnne
Thanks Joanne. I too think the block is jumping the gun! I thought the injection would be the same as my tennis elbow one. Obviously I misunderstood, but the misunderstanding only became evident when I saw the leaflet. You have been most helpful thank you.
"This was a referral from Rheumy, who wants a quicker reduction of pred."
Time for new rheumy or a GP who understands that you can only reduce your dose of pred in accordance with the activity of the PMR and that PMR can last a long time. PMR has a median duration of 5.9 years - it isn't a question of take some pred and then taper off it. As long as it is active you will need some pred - and some people need more than others. It is just so, however much he dances up and down and say "Reduce, reduce, reduce..." He isn't in charge. And the median time to get to 5mg is 18 months - you are well within that and you obviously have other factors at play.
"The site of the neck problem is swollen / puffy. It is also where I would have particularly stubborn knots, caused by stress?, during whole body massages when I was fit and well."
suggests to me you also have myofascial pain syndrome (MPS) - the swollen bit at the back of your neck is probably a combination of how you hold your head to reduce the pain and good old pred buffalo hump. The key is the knots in the shoulder muscles. They contribute to the rest of the muscles in your back spasming and adding to the PMR pain. That is what happens to me - and when the MPS is bad I need more pred, when it is sorted out, I can reduce the pred again.
I've had such problems most of my life and managed them with the help of massage, an osteopath, Pilates and Bowen therapy. I then developed PMR on top but all this came to a head about 5 years ago resulting all my back muscles going into spasm, I couldn't move at all. It resulted in admission to hospital where they used i.v. high dose painkillers and steroids to reduce the general level of inflammation in the area and i.v. diazepam as a muscle relaxant. That is the quick way to get a result - unfortunately, although it worked very well, I reacted badly to the i.v. diazepam so then I was sent to the Pain Clinic for the slower less medical approach. The wonderful pain lady used manual mobilisation of the trigger points/knots and spasmed muscles together with local steroid injections into the trigger points.
It was slow - and at one point she did consider the injections you mention but put it off and slowly the way she went about it worked - the result of a session lasted longer and longer and eventually I only needed a top up every 6 months or more and even when she left to be a GP (what a waste!) I have managed with only the occasional prod from my own GP.
My concern would be the same might happen as Joaclp describes - not sure of other downsides but my pain lady wasn't in a hurry to use them. They were the last resort. I think you need a more realistic rheumy - and gritted teeth to go to a good therapeutic massage therapist to work on those trigger points. It will hurt and you will feel as if you are flaring afterwards - the knots are concentrations of the same cytokines causing inflammation in the muscle fibres which harden and spasm, releasing the cytokines into the system makes the PMR flare up. But it works for me - the post-session pain is worth it for the longerterm reward
Hi PRMPRO. Thanks for your wisdom. I thought that what I was due to have was indeed a steroid injection to localised area, just as you describe. I also think this is what GP originally suggested but I am guessing, from replies, this 'block' is something completely different.
I am speaking to GP next week and am wondering whether I could try to transfer to Yash Gupta at Southend? Sadly I didn't know of him or his expertise when I started this journey and he is only a ten minute drive away. Do you know his views on tapering? I.e. symptoms or bloods driven? Bloods last week show everything in normal range, including magnesium which I asked to be checked due to spasms. However when I could barely move at diagnosis bloods were similarly normal range. They only shot up with a vengence, ( 187 and 18), a couple of weeks later, so I think I am one of those whose bloods lag behind.
Prof Dasgupta. Hnestly don't know - though I know he does recommend a slow approach once you are below about 8mg, not sure before. Where are you? Chelmsford? Now, is it there that someone else had awful problems...
If truth were told I suspect EVERYONE'S markers lag behind - not that the docs would have it,,,
Am thinking of testing a theory, but to do so I need to increase pred. I want to see if increased pred decreases pain as it did initially. Methinks if it does maybe I just need to increase pred at the moment. If I do increase pred and there is no difference will I be able to go straight back to my current dose? If I do increase how much by? Was thinking of trying 9.5 mgs or 10mgs. (Currently on 8.5mgs). What do you think?
It is one approach - but if it is MPS a higher dose of pred will probably help that as well - it does me. The usual suggestion from the docs that know is adding 5mg to where you flared. But it all depends - some people might need more and MPS is slower to respond than PMR. But yes, up to about a week or 10 days it should be possible to drop back to the previous dose without any problem.
I have had every back injection known to man. Joaclp, in another post, is spot on.
There are risks but you just decide if the procedure makes sense to you. The only one that really worked for me was the ablation where they use radio frequency to ablate nerves in the area of the pain.
I was scheduled for another one, was on the table with the iv and my blood pressure spiked and they had to stop the procedure. I have not been able to get my BP under good enough control to re-schedule the app't. Dr's believe it is the prednisone that is causing my BP problems as they were under control before PMR.
Now I am considering some of my back pain is the pmr. which I never considered before. I am trying a little higher dose of pred. to see if it helps. So far it does seem to be helping so I am not in a hurry to try and reschedule the pain dr.
You have til sept., maybe you can make a determination as to whether it is your back or pmr affecting your back.
Therein lies the problem Linny3. Is it PMR, pred or something else at root cause?????? In my head, because of the relief I felt at 15mgs around my neck and pressure point just below it as well as the fact I could hold my head upright for the first time in ages, I am apt to think PMR. I may up my dose for a couple of days to test my theory, though am reluctant as it feels like a step backwards since I have had some trouble tapering.
I have decided, for myself, Over the long haul of ups and downs of pred I don't think it matters if it is upped for a few days. Of course that is my opinion for myself. You must do what you are comfortable with.
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