I wrote awhile back about having a return of PMR symptoms after successfully (over a year and a half) tapering to 5mg and staying on that dose for two months. The weather had gotten a lot colder here in Seattle and I attributed the flare partly to that. I increased my dose to 10mg for a week and had noticeable improvement. I then reduced back down to 5.5mg but unfortunately my symptoms (bilateral buttock, thigh and shoulder pain, plus neck pain) returned with a vengeance shortly thereafter.
Further complicating things is I have a dental extraction scheduled for next Tuesday, which I need to keep as I have an active infection in the tooth. I am reluctant to up my dose again before I have the oral surgery in case I further suppress my immune system as my body is trying to heal from the extraction. They are starting me on an antibiotic the day before the surgery, which they want me to continue for a week.
Any input on my current circumstances would be greatly appreciated.
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Donna5658
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You may be lucky and find the antibiotic has an antiinflammatory effect for you - they do for some. However, the stress of the infection itself and the dental surgery may mean you need to do Sick Day Rules with your pred dose.. Normally the body will produce more cortisol in response to the infection to help the body heal but when youa re on pred at this sort of dose the response is damped but you are on a dose that leaves no reserves. Don't rule out increasing the dose a bit to compensate - 5.5mg is obviously not enough at present and I suspect you probably need at least 6 or 7mg and for the infection and dental work a few days at 10mg might make more sense.
Thanks PMRpro! As the day has gone on, the pain has increased considerably. I am actually hobbling around when I walk. Is there a downside to a dose increase starting tomorrow through when I am recovering from the extraction?
I think I get confused on the raising the dose in the face of infection question as it seems counterintuitive to increase the dose of an immune suppressant drug when you want your body to heal (have an immune response) to an infection/increased stress. Wouldn’t the increase make it less likely that healing would take place? Can you explain the error in my thinking as I think I may have it bassackwards.
Regardless, I am in enough pain that I think I have to do something.
You are right - but the body needs corticosteroid to fight the infection so it is a balance. And the stress is likely to poke the PMR and make that worse. So you need a bit more pred. I think there is a lot of fuss made about the immunosuppressant affect of pred - except at high doses as used in GCA I think it is exaggerated. Don't go tempting fate with people coughing and sneezing all over you though!!
Believe me I won’t. Unfortunately due to Covid and flu and my MS, I generally treat people in the outside world as if they have the plague. Sort of a sad way to exist, but it seems to be my reality at least for the time being.
PS You probably won’t get this until morning your time, but I wondered if I could add a second 5mg dose for today? I’ve even wondered about going up to 12.5mg where I felt absolutely great. Kind of a wild ride, but it’s taken me awhile to discover resistance is futile
I didn't!!! Resistance is futile, you are quite right. Something to discuss with your doctor and we'd say you need to go back to the last dose you felt good at - and that probably means almost starting again and tapering as we explain it for the best results.
Single odd doses of ibuprofen are usually OK, taken with food and not repeated for days on end. If you take a PPI for stomach protection it is safer. Paracetamol/acetaminophen/Tylenol is better/safer.
Sorry to belabor the point, but I’m not sure I understand my options. Unfortunately, my former doctor, who was very enlightened about PMR, retired. I have a newly minted, lovely young doctor now who admits she doesn’t know much about PMR but is very willing to learn.
So if I go back up to 12.5 (after originally starting at 15 in August of 2022 and tapering down to 5 two months ago) would that mean that I would have to start the whole tapering process over again if I only stay on 12.5 for a week to ten days? Doubling my dose per sick day rules would put me at 10.5 for a week to ten days. I’ve already done 12.5 for two days as the pain was pretty unbearable, but maybe tomorrow I should drop back down to the 10.5 dose. I think the inflammation had been building for awhile at 5, but it took it getting this bad for me to recognize it.
The extraction will be Tuesday so I should know more after that (I hope). On the pain relief front, the pharmacist said taking Pepcid an hour or so before I take my prednisone with the ibuprofen (if Tylenol/ Paracetamol isn’t strong enough) should help with stomach issues.
At the risk of being absolutely redundant, thank you yet again for your help! You and Dorset Lady and this whole group help preserve the sanity of all of us. I would have been floundering in the dark without you.
I’d be inclined to stay at 12.5mg for at least another week… but following the flare strategy you can stay at the increased dose for up to 14 days with having to start the tapering regime from scratch. That’s the idea of it…
But in your case because you said you have had issues don’t go back to 5mg… go to 6mg or 7mg -
I agree with DL - originally I would have said going to 10mg was the way to go with the flare protocol but it does sound as if you really are in a bit of a state if the 12.5mg is only just starting to work. But unlike DL, I think I would drop to 10mg for a couple of weeks after the 12.5mg and then to 7.5mg - I suspect you were tapering too fast from 10mg and missed where the dose was no longer enough. Was there any sign of pain or stiffness earlier than the 5mg dose?
Thanks to you both. I went back and looked at the PMR notes I’ve been keeping to answer your question PMRpro. Diagnosed August 2022, stayed on 15 for 9 weeks, started tapering to 12.5 using DL’s 5 week taper protocol. Did well until I began taper from 10 to 9 in December 2022. Pain returned so on the advice of my doc, went back up to 15 for 9 days, then dropped back to 12.5. Pain still significant, so perhaps stupidly bumped myself way up to 25mg for a week (pain better) then 20 for 5 days, then 15 for 5 days, back down to 12.5 for ten days, then started tapering back down to 10 for the next week. By March 3rd I was comfortably back down to 10.
For the next 8 months, I successfully tapered again using DL’s 5 week protocol until I reached 5mg in late September 2023. Pain still not a problem. I stayed on 5 for one extra week due to being on vacation. On October 1st, 2023 started tapering by 1/2 mg from 5 down to 4.5. By November 7th, down to 4.5, where I stayed an extra week.
Things started to go south from here. Symptoms started returning to one degree or another in all original sites. Not as dramatically as when first diagnosed, but definitely there. Upped dose to 10 for one week, then down to 5.5 for next 12 days. On Nov. 26, I resumed the 1/2 mg taper from 5.5 to 5. Got there with no pain by Dec. 30. Stayed on 5 for the next 2 months with no pain, but pain did return March 6th, 2024. Went back up to 10 for a week, then back down to 5.5. Tried 5.5 for 9 days, until pain, which had not totally subsided with the bump up to 10 in early March, came roaring back on March 21st, this time as bad as original pain. Walking extremely difficult due to buttock, thigh, hip pain, along with lesser pain in shoulders and neck. In desperation took 12.5 on the 22nd, 23rd and today. Things seem to be easing a bit, but definitely not gone.
So that’s a really long answer to your question PRMpro. Is there an obvious answer to where I went wrong?
You are never tapering relentlessly to zero - you are looking for the lowest effective dose, the lowest dose that works as well as the starting dose did. When you get a return of symptoms more than once at similar doses, that is usually a sign you have got there - and the dose where the symptoms return is already too low, you need a slightly higher dose ongoing. In addition, in some people PMR doesn't start at a high level of disease activity and then steadily fade away in activity so that you can steadily reduce the dose without any problems. For some of us, the disease activity waxes and wanes over time, you can get to a slightly lower dose and everything looks fine, and then the activity increases again - you need a bit more pred. And in yet others it suddenly ramps up again and you need a considerably higher dose before starting on a longer taper again.
No-one knows what causes it to be different. It may be increased physical activity, increased stress at work or in the family, an illness or injury that prods the disease activity into life - or it may just be a feature of the disease. It is something that happens in multiple sclerosis - and some people think something similar can happen in other autoimmune disorders.
It is an absolute pain - literally and metaphorically - and a lot of doctors just aren't aware of it or don't believe the patient when they say what has happened. But it happens. And it is difficult to know what to do about it. My rheumy wasn't annoyed if I needed more pred - he is experienced enough to know it happens. Maybe we are the people who do better with one or other of the steroid sparing approaches, but as yet, no-one knows the details.
Thank you! This is all very helpful. Since I have multiple sclerosis, I am completely familiar with the relapsing/remitting course of the disease. I somehow thought the course of PMR was different, but it is beginning to at least sound similar. Stress is a huge factor in MS, as it is in PMR. There were several stressors occurring in my life when things went downhill in November, including very cold weather and the almost constant need of a friend for my help with her very ill, elderly mother. I tend to push ahead as I am able, but I probably need to be a little more self-protective.
If I stay on 12.5 for a week and then do a two week step-down to 10, will I be able to go directly back down to 7.5? If so, how long should I stay on the 7.5? 5 seemed to be fine for months and I am happy to stay there for the duration if I need to.
Sounds as if you have answered your own question, all that is likely to really mess it all up and I suspect they interfere with each other. How long is a piece of string? Some doctors think they have functioning crystal balls - we, on the other hand, know we don't! You will just have to try and see how you get on I'm afraid. But beyond there - 1/2mg at a time and slowly is the only way to go.
I’ve been looking at PMR and tapering as a kind of Sisyphean exercise when that really doesn’t fit the bill. It much more of a trial and error, taper slowly, pay attention to your body, avoid stress type of process, with a ton of uncertainty. I think I will eventually get the hang of it thanks to the help on this website, but expecting it to be linear doesn’t seem to work for me.
Expecting it to be linear and achievable with a "fixed payment plan" as so many doctors seem to, works for very very few - or at least, at the speed they want patients to go about it. DorsetLady never flared - but you know about her taper, slow and slower as the dose went down. You understand the principal now - only one other point and that is it may NOT get to zero for a very long time, but that isn't failure.
Extraction done! It took 5 minutes after local anesthetic kicked in. I had dreaded it for two months and it was over in the blink of an eye.
I wanted to check back about resuming my tapering. I stayed on 12.5 for a week. Then down to 10 two days ago. You suggested staying at 10 for a couple of weeks but wouldn’t that preclude my then dropping straight back down to 7.5 as the total time I was on the raised doses would be three weeks, not the recommended no more than 14 days of raised dose per flare instructions?
If you feel OK I suppose you could try dropping after a week but those are fairly standard reduction steps and should be fine - you have split the drop into 2 anyway.
I know what you mean about the extraction. I needed a wisdom tooth out and I knew I'd probably be referred to hospital in the UK. The hospital here looked at me as if I was crackers and my dentist was quite dismissive of my concerns. He was right - it was the simplest extraction I had ever had!
I managed to generate one last question. My oral surgeon has told me to take prescription strength ibuprofen right after the procedure and if I have any subsequent pain. I thought we were supposed to avoid non-steroidal anti- inflammatories while on prednisone. Is this correct? I told him I was on prednisone, but he said nothing about the issue.
Donna5658, unless you have ongoing stomach issues with pred, you can probably get away with taking the ibuprofen but you would be wise to take famotidine or a PPI before taking it WITH FOOD. The main problem with ibuprofen and all other NSAIDs is that they can cause stomach acid to go too high, causing real damage. I have had an extraction while on pred and had no problem with my PMR/GCA. One more important point is that you could tell the dentist to not use anything with Epinephrine in it in your numbing shots! Epinephrine is a vasoconstrictor and lowers the bleeding but it can and often enough does have negative effects. I experienced throbbing and swelling after every shot with it but none when I was numbed with something without Epinephrine!
Thanks for the great/helpful reply. I haven’t had problems with prednisone and my GI tract, but I always take it with food. I will be sure to take Pepcid and put something in my stomach before I take the prednisone/ibuprofen. I hopefully won’t have to be on the ibuprofen for very long. I prefer Tylenol, but for the failed root canal I had on this same molar two years ago, the pain when the non-epinephrine local anesthetic wore off was excruciating even with Tylenol.
I am totally with you about not having epinephrine in the anesthetic. I always feel like I’m about to have a heart attack when they use it. I’m already having weird heart palpitations and extra-systolic beats with the prednisone alone, so I don’t want to make it any worse. Interestingly, my general practitioner told me she recently had dental work and had the epinephrine in the anesthetic. She said she also thought she was having a heart attack. And she is young…
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