Pred withdrawal pain or PMR?

I had successfully and gradually tapered down from 15 mg, then 12mg, then 10mg and 2 weeks ago began 9 mg as I am supposed to taper by 1 mg per month now. I had a few little niggles as usual when tapering but also I experienced pain across the middle of my back last week but only from late afternoon onwards. The pain is becoming quite strong and I'm now confused because I'm not sure if it's Pred withdrawal or PMR pain. It only comes on in the afternoon. If it is Pred withdrawal why would I only have the pain later in the day and not all the time? I take my Pred with breakfast.

Because PMR pain is usually in the morning and gradually improves during the day I'm thinking that maybe it's Pred withdrawal and I'm not sure what to do. Should I go back to 10mg and start the dead slow and stop method of tapering this time?

Maybe I could check my blood ESR & CR levels as they were elevated at the beginning of my diagnosis and dropped to normal after starting Pred to see if it's a flare ? What does everyone think I should do? I would be grateful for some guidance as although my doctor is very good she would like me to reduce as quickly as possible ( although I'm sure she'd agree if I used the dead stop and slow method) . I'm finding the back pain a bit hard to tolerate now.

19 Replies

  • magmapearl, you may have found the 10mg dose to be your 'maintenance' dose for now, ie the dose at which lurking inflammation is not sufficiently controlled by a lower dose. The 10mg dose, like the 5mg dose can prove a stumbling point for many, and one at which it is advisable to either remain for longer than previously and then either reduce by just 0.5mg decrements at a time or follow a slower tapering regime.

    Or you may simply have strained a muscle in your back. Yes, it is usual for our pain and stiffness to improve later in the day when our daily dose has been given a chance to work, rather than worsen (unless, of course you are overdoing things?) and the best way to find an answer, especially as you are someone who had raised blood markers of inflammation at diagnosis, is to get both the ESR and CRP blood tests repeated.

  • Thanks so much for your reply Celtic. I don't think I've strained a muscle as I think I would have the pain on and off during the day or in the morning too. Also I've been making sure I try and ' pace myself' over the last few weeks so don't think I've been overdoing things. I did leave the reduction from 10mg to 9mg a week longer than scheduled as I felt I had been under stress at work prior to that so I'm glad I did. I will definitely have my ESR & CRP tested tomorrow to rule out a possible flare. Once again it's wonderful to have this site and volunteers such as you to help, support and guide when needed. All the best Celtic.

  • You doctor may want you to reduce as quickly as possible - but unfortunately you can only reduce the dose as the PMR will allow and it isn't listening to your doctor. The pred hasn't cured anything - it is managing the symptoms and that is all it can do.

    Something that is often found alongside PMR is myofascial pain syndrome, caused by accumulations in the muscles of the same inflammatory substances that cause the more generalised PMR pain and stiffness. One location is across the mid-back, about rib level, and it also happens in shoulders and lower back. The pain can be very similar to PMR and does improve with higher doses of pred, returning as you reduce the dose. It also gets worse through the day - your muscles can cope when they aren't tired but as the day goes on and you use your back it appears.

    Mine was dealt with by local cortisone injections and manual mobilisation of the trigger spots but I know that may be difficult to find in the UK. A good massage therapist will know what to do to mobilise them - be careful though since it releases the cytokines, the inflammatory substances, into the circulation and it will feel like a PMR flare until they have washed out of your system. Drinking lots of water helps as does a gentle walk! A much less physical and gentler therapy is Bowen therapy and I and several others with PMR have found that helps a lot. Get rid of these more localised problems and a lower oral dose of pred is often enough afterwards.

  • Thanks PMRpro - that sounds exactly like the pain I have across my mid back and worsens during the day etc. I had blood tests today and it appears they have not elevated since my last tests which I assume also may indicate the myofascial pain syndrome you mention as it looks like it's not a flare as such.

    I live in New Zealand so I may find it difficult to access the treatment you suggest although I will research where I can find a Bowen therapist as they are available here but I'm not sure how close to where I live. I'll talk to my doctor and mention the cortisone injections and manual mobilisation. She is also from the UK ( as I am originally) and seems quite familiar with PMR in general. Although she is keen for me to reduce quickly I feel she will be receptive to my preference to follow the method outlined so frequently on this site. The fact that the myofascial pain syndrome may be what is affecting me may be due to the recent reduction do you think?

    I am so very grateful for your guidance and support along with the others on the site who , like you, are always ready to help. I don't post often but I read the posts on a daily basis and I feel so much more informed and empowered by the knowledge gained.

    I'll update you when I have some answers to the availability of treatment options. Thanks once again.

  • I'd have thought Bowen would be easy enough to find in NZ since it originates from Oz! Though I appreciate it depends on how rural a location it is where you live. A good physio would also be able to offer the manual mobilisation - doctors are often not aware of how much can be done on the surrounding "stuff" that surrounds PMR. An orthopaedic specialist told me my low back problems were degeneration and there was nothing to be done which, since I couldn't walk for more than 10 mins without excruciating back cramps, was a bit depressing at the age of 59! After cortisone injections, physio and Bowen therapy I have no pain at all - but it is there lurking because if I try to do housework that involves leaning forward at all (sweeping, vacuuming) I can feel a warning twinge.

  • Yes, PMRpro I'm hopeful I'll find a Bowen Therapist even though I live in a rural area. We do have good Physiotherapists in the town who offer acupuncture so I assume they're skilled in many alternative therapies and hopefully the manual mobilisation. The only drawback is cost as I don't think I'll be able to access it under the National Health Scheme they have here but I will still ask. The back pain kicked in with a vengeance after I returned to work after a break of 2 weeks so I think my body is protesting. I'm relieved, however, to actually have an explanation as to what and why I have the pain as at least I can now look at how to relieve it. It sounds like the Myofascial pain may be a long term thing from what you have said if it's still lurking there so It's important I find something that works for me. You are incredible PMRpro - thanks so much !

  • Yes - not covered by the healthcare in Europe either but since it just means 3 sessions at most to see if it works it isn't an open-ended thing which has been my experience with chiropractors. Many people experience dramatic relief after just one session - and if it means you can work it's worth the cost. The NHS in the northeast of England are running a trial with the pain clinic to see if it is something to offer as an adjunct - acupuncture is available on the NHS and has been for some time. That requires loads of sessions compared to Bowen.

  • I agree the cost of Bowen Therapy will be worth it if it works or either way really. Acupuncture isn't available on the NHS here as far as I know either. Physiotherapy in general is if it's the result of an accident but I have yet to find out if it's available for medical conditions such as PMR. What a journey this is! I have managed to avoid many of the dreaded side effects apart from Pred brain and fluid retention initially ,and high blood pressure but I was able to bring it down by modifying my diet (reducing salt etc) so feel pretty lucky. It certainly makes you more pro active with your personal health care doesn't it! Glad to hear you're able to manage the myofascial pain PMRpro which I'd never heard of before so I'll be finding out as much as possible about this too.

  • Hi i took advice from this fab site and had Bowen for leg pain it a bit strange as its rather hands off !! BUT i have to say it has worked i was so relaxed after My 1st go, went back again 7 days later and was soooooo relax i came home and went to bed for the best hour sleep in ages. Its not covered on NHS in my area still it was the best money i have spent for ages worth going hungry for LOL hope all works out for you

  • Thanks Kay60. I'm pleased that you found Bowen effective. I've heard many good things about it so it's worth giving it a go . I'm just hoping I won't have to travel too far for sessions. Fingers crossed!

  • Like you, magmapearl, I had a smooth tapering period from 15 to 10 without problem or pain. When I went to 9, however, little by little various aches started to appear in various places. Rather than a "flare," I felt I was suffering a gradual erosion of my wellness post prednisone. I went back up to 10 and then 11 and stayed there for almost six months, as I felt very "close to the wire." In the past three months I have also developed back pain in the late afternoon across the middle of my back and sometimes in the lower back as well. The pains are worse when I get into bed but generally settle by morning. I do have a number of other "niggles" that were not present at the higher doses but on the whole I feel quite fit and comfortable. I never have aches and pains in the morning. I feel quite terrific then and get a lot done from early morning.

    To overcome my "evening aches," I split my prednisone dose. I now take 8mg at 2:00 am and 2mg at 2pm. This method was quite effective at first, but in the last couple of months I find it less effective, yet when I tried to go back to the conventional method of taking the entire dose in the morning, I was not my regular energetic self and my legs felt quite heavy in the morning and I still had the "evening aches." Had I persisted, things might have been different, but I did not want to rock the boat. I also tried Bowen a few times but unfortunately it did not help at all. What does help me is a hot bath. I now take one every day and stay in for about 20 min stretching and relaxing my muscles, particularly my back. I also try to do various exercises during the day for my back. I have not asked my rheumatologist about these back pains and both my ESR and CRP have been elevated more than in the past. Yet, on the whole I feel my state of well-being and my back pains have remained consistent, so I have decided to carry on.

    We all have common experiences in our journeys with PMR but at the same time our experiences can be so diverse. Although I have no good advice to impart, I thought I would just share my experience with you for what it is worth.

    Both Celtic and PMRPro have given you good advice. I think that you may find staying at 10mg for a while might help. The ball game really changes from 10 downwards and maybe one month is too short a time at any dose from hereon. On the other hand, we are all different and maybe you can continue the taper, but from my own experience I would say take baby steps by going 0.5mg - and go slowly. I have done that since 11mg and soon I will be ready for 9, and hopefully I will be more ready than the last time.

    I hope you can soon come to terms with your pain and with your tapering decisions.

  • Many thanks for sharing your experience Wyoming. I agree that there are many common experiences many of us share along with the individual differences. I think it's helpful to read others experiences, similar or not, as it helps to feel part of a shared community and prevents the sense of isolation that those of us who can't access a support group sometimes feel. It's enlightening and educational to be guided and supported by people like PMRpro, Celtic, Dorset lady, Sambucca etc who have a wealth of experience and a sensible no nonsense approach to a very debilitating condition. We are very lucky to have this site which I only found out about through buying Kate Gilbert's book which has been another wonderful source of information. Good luck with your next tapering .

  • All I can say here is "What's a bath?" It's 10 years since I last dared get in a bath on a regular basis! We did have a very large corner bath with a seat on the side in the last but one house - but we left there 7 years ago and I'd been very unwilling to use it even before that in case I couldn't get out. I do like standing in the hot shower with it playing on the sore bit though...

  • Even before diagnosed, I found the bath was my "redeemer" (brought me back to the land of the living). There were times when it was hard getting in but never hard getting out. I literally come out a different person. Prior to PMR, I was a "rush in and out of the shower" kind of person. That has changed. The bath is a not only a great source of comfort but also an energizer and will be a mainstay in my life for the foreseeable future. On the other hand, Bowen therapy was a disappointment - I had pinned hopes on it. I live in Australia and there are a number of respected therapists nearby. And my private health fund even gives a decent rebate for it! As a consolation, I found a Pilates class with a physiotherapist (also covered by my fund) and I feel I am growing much stronger.

  • Pilates did a lot for me too in the 5 years with PMR and no pred - but I simply couldn't get out of the bath! Once I couldn't get out of the bathroom - we had just moved and the handle was a knob not a lever. It was changed pdq! The steam room at the gym was great though, as were aqua aerobics classes and even yoga,.

    The Bowen never helped the basic PMR - it was for what I call the "add-ons" usually due to myofascial pain syndrome and piriformis syndrome that both often occur alongside PMR.

  • PMRpro

    What is "piriformis syndrome"? I haven't heard of that before. I've heard of the myofascial pain syndrome, however.

    Thanks for sharing.

  • The piriformis is a muscle low down in your buttock - it can cause pain where you sit if it spasms and it can also pinch the sciatic nerve and cause pain in the buttock and leg. Sciatica doesn't have to stem from a spinal problem - muscle problems are very often the cause of such pain, especially in PMR.

  • PMR pro,

    Thanks for the info about piriformis syndrome. I have a lot of discomfort in that area. This helps to explain why.

    So appreciative of your postings. Have a great day.

  • PMRpro - I had incredible pain in my buttocks prior to the PMR diagnosis and Prednisone treatment. It was so bad it was excruciating sitting on the toilet ( which couldn't be avoided ) LOL! I haven't had the pain since I started on prednisone thank goodness. I too have never heard of Piriformis syndrome so it was interesting for me to read about it on your link .

    I have located a Bowen Therapist about 40 minutes drive away which I will investigate further. I will ask about the cortisone injections next time I'm at the doctor's surgery too.

    Thanks once again.

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