I was diagnosed with PMR in August 2020. Started on 15mg Pred and currently on 8mg with a few ups and downs on the way.
I think I’m flaring on 8mg although recent ESR was normal. I was feeling good on 8.5mg. This is my second attempt to reduce to 8mg and after contacting the Rheumy helpline I was told that my consultant doesn’t want me to up the steroids and to try Methotrexate. I don’t want to go onto MTX at this point because of the side effects and also don’t want to add another drug to the nine I am already taking.
My questions are:
Does a flare ever settle by itself? I’ve now had pain for just over 3 weeks.
Is a flare usually bilateral? I’m my case the pain is just in my right shoulder and upper arm muscle. Could it be something else and not the PMR?
Has anyone gone against the instructions from their Rheumy and increased their Pred?
I would welcome any advice please.
Written by
Tiggy70
To view profiles and participate in discussions please or .
Yes, quite a few have decided for themselves, your body your decision.
Suggest you go back up to 10mg and stay there for 4 or 5 days, then use one of the plans either DSNS or DL's and slowly does it.
With a flare sometimes if you hit it hard and hit it fast it settles down and you start again. - Sometimes you can go back to where you were, but not always.
BTW I had GCA and a couple of flares, was offered steroid sparing agents and refused all. That, of course, was a very personal decision.
I’m sorry you’re feeling poorly. I’m relatively new to this site and I’m sure more well informed posters will be along soon, but my feelings in answer to your questions are:
- I’m sure a flare can settle by itself, but after three weeeks I wouldn’t be wanting to take that chance! I’d go back up at least to 8.5. Preferably go to 8.5 plus 5 for a few days until things settle, then you can drop down to 8.5 again without tapering
- flares are usually but not always bilateral. I’ve had this issue myself with my right shoulder. I tested it with ibuprofen gel and codeine, which helped a bit - so I’m thinking my osteoarthritis is back. Could that be so in your case? Is the pain limited to your shoulder and arm, or is it also elsewhere in the body?
- yes, I’ve gone against rheumatologist advice, or at least interpreted it liberally!! And it should I think be treated as that - advice, not instructions 😊
- oh and my rheumatologist has similarly ‘threatened’ me with methotrexate- and I’m going to politely decline for as long as I reasonably can!
The pain I’m having is just in my right arm and shoulder. It’s not too bad when I wake and eases when I take my 8mg Pred around 10.00am. The pain gets worse as the day goes on and is at its worst when I go to bed. I’ve been using ibuprofen gel and paracetamol at bedtime.
I’ve held off increasing my pred as I had my third Covid vaccine this morning and wanted to maximize the chance of producing antibodies.
Another concern I have is that if the inflammation is from the PMR and is not being controlled could that increase my risk of GCA developing.
My next telephone consultation with the Rheumy is not scheduled until May 22! so I doubt they will know what I’ve been up to with regards to my meds.
Hmmm…..so pred helps, and ibuprofen gel and paracetamol do too…. It sounds as though you could have both PMR and a touch of osteoarthritis? Does lifting things, eg a kettle, iron, etc make the shoulder worse? Does it make cracking sounds? There’s a good thread on trying to work out what’s causing pain in FAQs - I’ll look for it and post the link 😊
Oh dear, sorry I can’t find the link 🤔 But the fact it gets worse as the day goes on does suggest that you may be doing too much for the moment. And from experience, I know that ‘too much’ doesn’t have to be very much at all, objectively - just too much for you.
Honestly I think you should listen to your body, perhaps increase your dose a bit to get the inflammation under control, and then decrease very slowly. Have you seen the slow taper methods in FAQs?
Good luck - this can all be so demoralising, I know x
When I was on my first course of reducing Steroid dosage, when my body responded to the lower dose with an increase in pain, my Rheumatologist suggested that I take, say, 8mg one day and 9mg the next, to fool my body into eventually accepting the lower dose. It worked for me, albeit, it's a slow journey, its best to be patient and have no pain than trying to rush. Good luck.
You are never reducing relentlessly to zero - you are looking for the lowest effective dose - and I suspect yours is 8.5mg since your body has told you so twice.
A flare will settle by itself if it was from doing a bit too much or a cold or something - but if it is because your dose is now too low for the disease activityit won't.
I wouldn't accept a threat, however veiled it might appear. Just being patient may avoid taking MTX - which is supposed to take months to start to take effect and anyway there are no guarantees it will get you to a lower dose of pred. It works for some but not all.
Something to consider, and I very much doubt it has anything to do with your current situation, but wanted to throw it out there anyway (you never know).
I noticed you're taking Amlodipine.
It was when I started taking Amlodipine, that I also started having initial symptoms of PMR. I was researching side effects of Amlodipine and read that some people could have muscle and joint pain associated with it. After switching medications, the symptoms didn't go away, but started getting worse. After more searching, I found this site, and was pretty sure I had PMR, which was eventually diagnosed.
Like I said, highly unlikely to be associated with your issues, but you could try changing your Amlodipine medication for something else if you get desperate enough.
Thank you call-me-Wally and to everyone who has replied. It’s so reassuring to know I’m not the only one out there going through or have been through the issues this horrible disease throws at us.
I think I know what I’m going to do.
I’ll give my body a bit of time to respond to my third Covid vaccine today and hopefully make some antibodies. I’ll then increase my pred up to 10mg and try to get back to 8.5 mg where I was last happy. I have been doing half mg reductions using a slow taper since I was at 10mg. I’ll stay at 8.5 for a while maybe until the new year then try a slow taper again. I live in the UK and have a trip booked to the US to see my son and family this Christmas. We haven’t seen them for two years because of Covid restrictions and I want to be as well as possible when we see them.
Wishing everyone the best on their PMR/GCA journey.
So glad you’ve been able to make a decision. It certainly sounds a good idea to stay feeling as well as possible this Christmas 😊 I think we can all underestimate how stressful it’s been this last couple of years….
Anyway I hope you have a wonderful time with your family, and, as you say, think about reducing after that, all in good time 😊xx
Thank you. The past few weeks have been very difficult😩. Indecision on what to do has increased my stress levels which as we know makes our PMR worse.
I think we are all just basically looking for some quality of life whilst we struggle on with the illness. I can’t wait to see my grandchildren and give them a cuddle. I have some questions on taking steroids when travelling through different time zones but I’ll save that for another post,
My Rheumatologist allows me to make the judgment and she is very up on our conditions. I think your guy is wrong Tiggy70. He needs to hobble about in your moccasins for a day.
I agree. What hurts is that I feel like a number and not a human being. In the 14 months since my diagnosis I haven’t seen a single doctor face to face. My consultations have all been telephone appointments. I understand it’s because of Covid but it just adds to my anxiety. I just can’t relate to or make any connection with these doctors. I’ve put the phone down and cried after each consultation mostly from frustration. I envy you having a Rheumatologist who allows you to make judgements on your care.
Covid shouldn't be an excuse - I choose to telephone my GP directly for some things but I can have a f2f meeting same day if I turn up and wait, no different from pre-Covid, and I have seen my rheumy too plus a few other consultant appointments in the last 18 months. All that is missing is the Pain Clinic run by anaesthetists so it was badly affected by COvid, they were a bit busy!But some of what is going on in the UK is milking it ...
I saw the rheumatologist f2f in June (and again this week), so why can't yours do the same? As for the next appointment being in May...the GP can contact the consultant and ask for an earlier one if things are not going to plan.
Hi yes i did, it was about a month ago ! i was having a really bad flare, could not get hold of a Dr/ Rheumatologist so i upped my Pred from 5.1/2 /6 to 10mgs and for me it was the right thing to do ! I got my pain under control , the downside is i am going to have to taper soon, its a hard one. Good luck ,best wishes Viv🌷
After getting PMR in June 2018, I have now progressed to Vasculitis! I have been on Methotrexate for about 10 weeks and have had zero side effects but I am not sure what the drug is actually doing though!
Q: Does a flare ever settle by itself? I’ve now had pain for just over 3 weeks.
A: No. If ignored inflammation builds up. If I was at 8mg and flared I’d go to 15mg for 2 days to clear out the inflammation then return to the last dose I was at where I had no pain.
Q: Is a flare usually bilateral? I’m my case the pain is just in my right shoulder and upper arm muscle. Could it be something else and not the PMR?
A: Everyone is different, my flares were predominately in my hamstring muscles and less so in my right shoulder. As to being something else and not PMR, I have no clue. Does the pain feel the same as when diagnosed as PMR and does Pred knock it out? There’s your answer or try Ibuprofen if the pain goes away probably not PMR.
Q: Has anyone gone against the instructions from their Rheumy and increased their Pred?
A: Yes. When it’s contrary to most recent research I’ve read from links on this site and common sense. Such as, if told to taper to a lower dose and I’m still experiencing pain. Nope. If told to take a dose 4-5 weeks and suddenly go to a lower dose for another 4-5 weeks. Nope that’s like falling off a cliff. Told to do more than 10% current dose taper after reaching 10mg. Nope. In fact 2.5mg drops / 4 weeks after getting to 17mg was too much and decreased it to 2mg. Or as previously discussed start having pain. BUT I don’t call and tell him. I just get it under control and later when need a refill earlier than anticipated and s/he questions it I tell him or her I had a flare and managed. Worse case s/he barks at you or refuses the refill (unlikely - first do no harm and all that). Let them bark, I bark back and have no problem shoving research findings under their nose.
This is supposed to be a partnership. Arm yourself with info and remember everyone’s tolerance to meds is not the same. If you’re having “mild” treatable pred side effects then I’d push back more so than if you’re having serious difficult to treat side effects. Don’t hesitate to question their instructions with valid questions. Understand what PMR is. How it can damage muscles etc if unchecked versus side effects. It’s true there is a long list of potential side effects from taking pred. One such long-term use risk is Adrenal Insufficiency. But just because there is a known list doesn’t mean you’ll experience them, or to what degree. It’s a balancing act and your doctor needs to be open and honest with you based on your situation. I would, if you haven’t already, also inform your Optometrist of your use and Dosage of Pred.
Thank you for your wise words Boss302Fan. I’ve decided I’m going to be more pro active and look after ‘me’. I hate taking the steroids with their bad side effects and don’t really want to up my dose (it feels like failure☹️) but at the same time I have no quality of life when the PMR pain is really bad. One other question can I take Ibuprofen when taking steroids, do they react with each other?
And re ibuprofen, tablets are not usually recommended due to effect on stomach (and maybe other things that I don’t know about). You can, however, use a small amount of ibuprofen gel on affected muscles or joints, which I do sometimes. Still gets into your system but not via stomach so be careful not to overdo x
I use ibuprofen very very occasionally and my rheumatologist uses high dose NSAID infusions for certain things but only for a short time and ONLY when one takes "stomach protection" medication such as famotidine/cimetidine or a PPI. Both pred and NSAIDs can irritate the stomach lining and damage it, longer term causing bleeding and even ulceration so keeping their use to a minimum, especially in combination, is a good idea.
Not directly but both Pred and Ibuprofen can cause gastrointestinal issues. I’ve been taking Prilosec (or its generic) for over 30 years so no issue with me. I’d just not take them at the same time and get the enteric coated ibuprofen.
Also, I understand what you mean by failure, as I have similar feeling but it’s not about failure but feeling like I was spinning my wheels.
You need to push through that feeling and discipline yourself to react properly to your symptoms and ignore the frustration. You’ll feel better and the aggravation of having to deal with flares will be reduced. YOU HAVE NO CONTROL OVER THE LENGTH OF TERM OF THIS DISEASE so make the best of it.
IT IS SO DISAPPOINTING TO HAVE TO RAISE A PRED DOSE AFTER MANY. MONTHS or YEARS OF TAPERING DOWN.I recently had my first flare, after four years of tapering. I had to deal with it myself as I could not get to see my GP for four weeks (I like to stick to the same Doctor- mine is a younger GP and seems fairly knowledgeable on PMR). Reading messages in this site has been so useful.
I upped my dose myself by 1mg a day for about a week but my pain worsened (bilateral by the way). Eventually I added 5mg and was taking 12mg in total, reducing to 11mg.When I got to ‘see’ my GP on the telephone, she said that I should stick to 11mg for four weeks and then reduce to 10mg. She will take another blood test then. The pain seems to have left me except for the odd twitch at the end of the day.
(The information provided by PMRpro seems particularly helpful).
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
What constitutes a ‘flare’?
unsure how to increase prednisone with flare
Flare again. Think I have not gone up enough. Stupid really. Should I up again now?
Update to very depressed and having pain, not knowing what to do
Flare-up not under control and just don't know what to do
