Thank you very much for the HealthUnlocked network helping PMR and GCA patients. This is the first time I am posting a question, having benefited from the encouraging answers provided by people who shared their experiences in this wonderful network. I am grateful for the kind people who often gave helpful answers to questions.
Currently I have some issues that I need your advice.
I was diagnosed with PMR in July 2019, initial prednisone dose given was 15mg. It worked. After a month, my rheumatologist (rhm.) told me to lower dosage to 12.5mg. I had a relapse. He prescribed Methotrexate to help, which I took for a few weeks but it didn't work for me. I stopped. Last May 2020, I slowly tap down prednisone to 7.5mg and had a hard a time lowering down to 7 mg. So my rheumatologist prescribed Leflunomide. After I took for two days, I had some side effects such us fatigue and difficulty in breathing, so my rhm. asked me to stop taking it.
In January 2021, I went to see my rhm. as I had a lot of pain. He diagnosed my PMR had flared up and gave me a shot of prednisone. I felt great for 10 days, living like a normal person. Then the pain gradually started to increase.
After one more month, I went back to see my rhm. with pretty bad pain. He did a blood test for me. My CRP is 26, ESR is 63. He told me he doesn't know what to do with my situation. Late, he prescribed hydroxychloroquine to help. Now I just took it for one day. I had a lot of pain these two weeks, not just on the normal places up the back, shoulders, elbows, neck, knees, hips, but severe pain on the neck, shoulders, back of head connecting to neck, middle of back, spreading like everywhere (no jaw pain, no scalp tenderness).
So my questions are :
1.Does hydroxychloroquine help control PMR and lower Prednisone?
2. Should I go back to 7.5mg or higher dose of prednisone? (I had a few weeks improvement at 7.5mg , but it wasn’t good after that, CRP and ESR was normal).
3: What I should do to prevent GCA at this point?
Thank you for your advice.
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rosemw
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Have to say not sure your Rheumy has much of an idea of how to treat PMR-
He didn’t really give you time initially to taper successfully before adding in MTX - which as you discovered doesn’t suit everybody.
Reducing around the 7.5mg level can be tricky for many, it’s when your adrenal glands need to start thinking about starting to work again. Not sure whether you tried to continue tapering from then, but you obviously went below the level of Pred you actually need to control your illness. You are obviously lower than that now because you’re asking if you should go back to it.
The usual recommendation to catch a flare is to add 5mg to the dose you last felt okay (in your case not sure what that is), stay there for 5-10 days to clear out the built up inflammation, then drop back down to just above the last ‘good ‘ dose. Sometimes that can be done in one drop, sometimes you need to stagger it in two.
For example - if previously okay at 7.5mg - go up to 12,5mg - get stable then drop back down to 8mg - either in one, or initially to 10mg stay 5-7 days, then to 8mg.
I have no experience of hydroxychloroquine, but it is used in Rheumatoid Arthritis , and I think can be used, like the other drugs you’ve been on, as a a steroid sparer. If that’s wrong, happy to be corrected. If it is what I think, not sure it’s going to be any more help than others.
The only thing you can do to prevent GCA is to be on the correct dose of Pred, and discuss new symptoms with doctor.
'My' rheumatologist has told me that Hydrochloroquine is prescribed to reduce the amount of Prednisolone needed to control symptoms. I am currently on a decent dose (for me) of 10mg Pred so yet to go back through the 7-ish barrier.
There is no evidence that hydroxycholoquine helps in most cases of PMR and so it is not included in the international recommendations for managing it although it is referred to. There is one paper claiming it works in all PMR - it is a single study, published on a (formerly at least) rather dodgy platform with a very poor peer review reputation.
Recommendation 7 deals with purported steroid sparers - and reading it again just now, I don't get the impression they hold out a lot of hope for them!
NO medications "control" the underlying autoimmune cause of the inflammation that causes the pain - pred manages the inflammation created so relieves symptoms and allows a better quality of life.
I really can only agree with DL - your rheumy obviously doesn't have any concept of how to deal with a patient whose PMR doesn't fit with his (incorrect) image of how it works.
"He told me he doesn't know what to do with my situation" - it is really fairly simple: give the patient enough steroid to manage the daily dose of new inflammation. If you go below that dose, which varies from patient to patient, the inflammation builds up again and the symptoms increase until you are back where you started. He has been in too much of a hurry - from that first reduction. MTX may help some people smooth out the discomfort of changing dose - but it won't help if the new dose is still too low. If MTX is going to help, it is likely to take weeks, if not months, to exert its effect in most patients. In the meantime you need enough pred. And even with MTX some people simply can't cope with a 2.5mg change in dose. Top experts say tapering steps should not be more than 10% of the current dose - and even that is too much for some.
You are never reducing relentlessly to zero from your starting dose: you are looking for the lowest dose that manages the symptoms as well as the starting dose did. In the early months that is likely to be higher than it will be later and it varies a lot initially. It takes 18 months for half of patients to get to 5mg/day consistently for 6 months - half take longer.
You have been badly messed about and to be honest, the best thing you can do is find a rheumy who knows what they are doing and treats the patient not the textbook he thinks he remembers reading. Your increase in symptoms and inflammation - which he can see from the figures - is because you are not on enough pred, plain and simple. PMR is a chronic condition - a single shot of steroid may help for a time but it wears off. Injections CAN be used but at the rate of a120mg depot Medrone shot every month - not a one-off.
The best protection against GCA is to be on enough pred for the PMR but if GCA is going to develop, even that isn't enough. There is no point worrying about it, cross the bridge when you get to it.
Thank you very much for your valuable advice. I tried to reach my Rms yesterday for a couple of times to discuss about increase prednisone dose to control my high inflammation. I couldn't reach him. Leave the message to him. I got phone call early morning. I didn't get up yet since last night didn't have good sleep. he left the message said he didn't have anything to offer to me since I had many side effects on the medicines he offered. He referred me to another Rms to get second opinion . " Thank God. I had made an appointment with another RMs on March 11. Hope this one can help me. Mainly, my situation still bad. This morning felt right side of large area back attached by my immune system, a lot of pain. Neck, head pain a little better than yesterday. Up back, shoulder still bad pain. Many other pain I already used to them. I took DorsetLady, and your suggestion, also read some papers, increase prednisone to 10 mg from 7 mg today. Hope in a few days will help control my inflammation. Thank you very much for DL, PMRpro and Jackoh's help. Especially felt discouraged from RMs, I could get help, good advises, support from this network. What a blessings!
Your back problem could be myofascial pain syndrome effects and muscles that are tightening to protect themselves. Mine worsens with PMR activity.
It would be really helpful if you could write a bit about yourself on your profile and complete the details about country/region and so on. It does make a difference to what we suggest.
Thank you for helping me to learn new things. I will get time to do my profile.Myofascial pain syndrome is new to me. I will talk to my new RMs about it. It seems more worse in the morning, and pain on different areas, then afternoon I fell better. That is also could be prednisone started to work in the afternoon.
Hello PMRpro,I remember that you mentioned that my back pain (widespread area) it could be myofascial pain syndrome. I think it may be it. It is getting worse. It seems not response Prednisone that much.
Can you please tell me how to diagnosis it and how do you control the pain? It bother me sleep and wake up with a lot of pain on my back. I sleep on my back. sometimes, deep breath can feel the pain. Next Monday I will have another appointment with my Rheumatologist. Hope we can find out what is the problem. I had MRI for spine. I don't know the results.
Thank you very much for your valuable suggestions.
When mine is really bad I take 800mg ibuprofen (careful if you are on pred) and sit against a hot water bottle over the painful area. It can take hours - but it does usually have a great effect - the 800mg flooding dose if ibuprofen is important though.
Here in Italy I get physiotherapy appointments where they do manual mobilisation of the areas affected which releases the "sticky" effect and that lets the muscle relax. I also usually have pain clinic appointments and needling techniques which achieve a similar effect. I honestly don;t know what is available to you.
Thank you very much for your quick response. You take 800mg ibuprofen for this pain. You still answer many questions for health unlocked website every day. You are amazing. We are really appreciated your help, your knowledges and sharing your experiences.
I wonder why I took 200 mg ibuprofen, seems didn't work. For PMR, I only took 100 mg at night, it worked. I found heat pad, hot bath, microwavable neck rip around are help. Also use Hemp relief cream message the areas are help too. Can MPS go away by it self or pain all the time. It is tough pain. Is PMR also can cause muscle pain in large area of body? Can PMR also cause hands, figure pains? My neck and shoulder pain also very bad. Next week, we will go hot spring for a few days, I hope will help relies some pain. Thanks a lot. Take care.
I have now started seeing an osteopath as I have pain in all the areas you mention, shoulders, neck, base of neck at back, between shoulder blades, upper chest etc. Basically like a tight band wrapped round that area. The osteopath isn't sure whether it is the PMR and says it could also be partly MPS. In the past when this has flared up I have always increased the Pred dose and that sorts it out. This time I am trying regular osteopath sessions where he gives the area a good massage to free up the area and doing the exercises he suggests, including putting a tennis ball in a sock then holding it between my back aand a wall and massaging my shoulder blades that way. I suspect I will have to increase the steroids again to reduce the inflammation but it is worth a try first. It seems MPS often runs alongside PMR. We are also working on posture and diaphragmatic breathing to ease inflammation and build up the muscles in that area. I realise I have been hunching up my shoulders because it is less painful than letting them relax but he says that is not good in the long-term, which makes sense. I read something that made me laugh (which also helps) 'limit the number of hours you sit or lie down to less than 23 a day!' You have to keep things moving and build up core strength. I don't know much about MPS but will do some Googling. I am also investigating acupuncture and dry needling to see if they might help.
helps show the link between PMR and MPS. I don't have any literature on the lecture I heard some years ago that confirmed all I had ever thought about the link. MPS is recognised here in middle mainland Europe and an orthopod did a study. Even my husband - who heard it first at a seminar - said "it was you, absolutely you" - and when I heard it a year or so later - it was.
Thank you, it's a bit technical for me but I think I get the gist that everything is interlinked which is what the osteopath says. I remember I felt like this in the beginning 9 years ago when I had frozen shoulders, first the left then the right and the muscles in the back between them and that somehow morphed into PMR. They were both definitely frozen as I had ultrasound on both. My dx of PMR was difficult because the pain was blamed on the frozen shoulders, my posture and 'not doing enough exercise' - which I disagreed with. No one has ever mentioned MPS in all these years, I read about it on here, but it seems to fit. Steroids seem to help me but I have never know whether they just help the PMR or 'something else' or a combination of things. It looks from this article that steroids are the best solution. I credit my osteropath for saying he's not sure exactly what is causing the problems and says to ask my rheumatologist what to do - but she (Dr Mackie) leaves me to decide my dose as she says I know best. There is still the option of Leflunomide but I'm trying other things first. The therapy this morning seems to have helped loosen things up a bit, the area feels less tight. I've got the steroids down to 17.5 and would rather not go up again, but realise I may need to. I don't feel as ill as I normally do in a flare, no fatigue and the hips are OK and I can sit to stand OK. It's just this shoulder and neck area that is causing the bother. Any ideas PMRPro?
They are both caused by the same inflammatory substances - in PMR they are free-range and in MPS they are localised in the muscle fascia (the transparent skin covering muscles you see in joints of meat and poultry) which is what causes the generalised tender muscles and in hardened muscle fibres forming what can be felt as knots in the the middle of muscles such as the piriformis or, in your case, the trapezius
The trigger points make the rest of the muscle tighten to protect itself and may irritate nearby nerves which can cause referred pain - as far away as the arms and ribs. With the piriformis it can lead to sciatica.
Steroid shots are good - but so is manual mobilisation/therapeutic massage.
Not your posture - your posture is more likely to be because of trying to minimise the pain and other mechanical problems which are what give rise to the problem in the first place. I have a scoliosis - missed repeatedly by UK doctors and physiotherapists. It puts permanent strain on my back muscles. They adjust and keep me upright until I stumble or there is some other assult on them and then they go into spasm.
Ouch what you have sounds tricky. Everything being interconnected, if doctors don't pick up on something being wrong it has repercussions and knock-on effects. Reading your first article makes me wonder again how many people are fobbed off with a dx of fibromyalgia or 'bad posture' and it is actually MPS and/or PMR.
A lot - and that is where the younger cases of PMR are missed I think.
There is a webinar on GCA and co from Bari today and tomorrow - and one talk tomorrow is "Polymyalgia: a single disease?" and today my rheumy did one called "GAC and PMR - an unstable link"
Gutted - couldn't work out how to register, it was free to anyone on FB. I'm hoping they do recordings or summaries in an abstract book
Thank you for sharing your experience with me. I hope we find some ways to reduce the pain and to heal the pain. I did acupuncture two month ago when I had a lot of pain, Somehow, it didn't work and made my shoulder pain worse and more tingling points after a few weeks. Good acupuncture is important. I hope you find a good one with a lot of good recommendations. I use Salonpas and put on some trigger points, it seems to help reduce pain. Yesterday, I tried to take 10 mg prednisone in the morning and 5mg in the evening. This is the first time I took prednisone in the evening. I felt much less pain when I woke up this morning. It didn't bother me to sleep as normal. I took all prednisone in the morning. Thank God. Maybe this is the way to go. I knew PMRpro did this. All the best.
Drat!!!! "There is no evidence that hydroxycholoquine helps in most cases of PMR and so it is not included in the international recommendations for managing it although it is referred to. There is one paper claiming it works in all PMR - it is a single study, published on a (formerly at least) rather dodgy platform with a very poor peer review reputation."
Hi agree with all that has been said- you need a rheumy who knows what he is doing! One point though I would pick up on is when you had a steroid injection and you say” I felt great for 10 days, living like a normal person” Just as it has been said that you need enough pred to control the inflammation you also need to pace yourself and take sufficient rest. As soon as you feel better you can’t throw yourself back into loads of activity otherwise the PMR will come back and “bite” you the following days. Just take sufficient rest and pace when you are on a suitable dose to control the inflammation. You may not have meant at all that you continued at a pace that you would normally do but it still helps to realise that we have a systemic condition and we need to listen to our bodies
Thank you very much for your good suggestion. I have slow down a lot since I have PMR 1 year and 9 months ago. But I am 59, I feel I still have to work. My work is not too bad stress normally. During covid time, I only work afternoon 3-4 hours, 4 days a week. But now feel hard to do it. I hope my PMR is in the control soon.
I had regular steroid injections for over a year and they worked wonders for 2-3 weeks at a time. Unfortunately I was forced by a rheumatologist against my wishes to reduce the dose and then the inflammation got out of control and now I am back on a much higher dose of oral Pred and had nearly a year of pain and agony with no solution in sight. I'm wee bit bitter even though I know anger won't help solve anything!
Tangocharlie,I had same experience. Our body is so complicated. It is so hard for doctors to figure out how to effectively treat it. I hope they can figure out what is the course for PMR or autoimmune diseases .
I am reading "The Immune System Recovery Plan" by Sudan Blum, M.D.. It seems dig in the reasons and solutions. I just started it. It is very interesting concept for autoimmune diseases .
Trouble is there aren't many rheumies who know what they're doing when it comes to PMR. Even the enlightened experts like Dr Mackie hold their hands up and say so little is known about PMR. Firstly there aren't enough rheumies to go round - we have a chronic shortage of all kinds of doctors here in the UK and it's getting worse. Rheumies don't get much experience of PMR as we are not often referred to them unless we are problem cases, and when we are, as PMRPro says, they usually think PMR is below their pay grade and don't know what to do with us. Why are we even sent to them if it is going to burn itself out in 2 years as the text books they once read say? They only think in terms of what drugs can be prescribed, are paranoid about the harmful effects of steroids and are more experienced with using methotrexate etc on other rheumatology patients, so think it must be better for you than steroids regardless of the fact there is little evidence MTX does anythng for PMR. Thank goodness there are a few good rheumies around at least and they are trying to change things. One of the biggest priorites for PMRGCAuk should be to help educate doctors so that they can help us better
Hello rosemw... I have had experience with hydroxychloroquine, a few years back I was prescribed it by my rheumatologist, continued on it for approx. one year. It did not help with reducing prednisone for me. I found what helped was changing to a Rheumatologist who didn't hurry me off Pred. and always following a very slow method of reducing, especially after 7mg.
Rosemw,I was diagnosed with PMR last August. Given 15mg for 30 days. Then 12.5mg for 30 days. Then 10mg for 30 days with a plan to reduce it by 1mg per month. That seemed to work for me.
However, I woke one night in January, not being able to see the face of my LED clock with my right eye. Just a black screen. Additionally, vertical lines were wavy and red lights were yellowish.
Subsequently, my Ophthalmologist discovered that I had Macular Degeneration in my right eye. He wanted me off steroids and suggested changing my PMR meds to Hydroxychloroquine. My rheumatologist agreed and started me on HCQ. Instructions was to reduce my Prednisone by 1mg every 5 days, as the HCQ would take two months to really kick in.
I am down to 1mg Prednisone per day and taking 400mn HCQ along with 1mg Folic Acid tablet. She also prescribed 10mg Methotrexate, but only once every seven days.
So far, this has worked, and I am not having any PMR aches or pains (other than some hand stiffness in the early mornings.
I plan on staying on 1mg Prednisone until I am sure the HCQ has kicked in. Neither the Rheumatologist or the Ophthalmologist have indicated how long I will be taking Hydroxychloroquine.
I’ll try to update my progress and successes/failures. Hopefully, the HCQ will work and I can rid myself of the Prednisone all together.
Meanwhile, if you are taking ANY statins for high cholesterol, I would suggest you stop immediately. I am pretty sure my taking Simvistatin five years ago caused my PMR.
Thank you so much to share your story. So far, your store is the most successful story for PMR patients I ever heard. 7 months from 15 mg tap to 1 mg, that is very exciting, encouraging. I know every one's body, immune system are so much different. I used 7 months to low 0.5 mg Pred. which from 7.5 mg to 7 mg, I couldn't do it now. I took 4 day's HCQ (200mg), so far seems no side effects. I will try for a week or 2 weeks, see how it works in my body. I do not take Statins. Thank you. All the best to you.
rosemw; Update: My rheumatologist just called with the results from my bloodwork after one month of being on HCQ and weaning off of Prednisone: Nine tests: All normal. 😀. I am holding my breath, hoping that this trend will continue.
You do have to remember that it is very likely there are several versions of PMR and there is possibly one that is a reactive form which doesn't last anything like as long as the others. And quite a high proportion of patients are misdiagnosed at the outset, the most common thing being the early stages of an inflammatory arthritis.
That video of Dr Dasgupta and the physio is really interesting in that respect, how PMR is both under-diagnosed and over-diagnosed. I'm sure many people who pop up in FB groups saying their PMR went away in less than a year due tho their rapid tapering off of Pred probably didn't actually have PMR, especially many of the young ones in their 40s. Like you have said before, a reliable biomarker for diagnosing PMR would really help.
Thank you for the remainder. I feel better on my legs these a few days. But I still feel the pain on my up back, neck, shoulders. I wonder since I was messed up by low prednisone, build up too much inflammations, so it take longer time to feel better or I have some other problems? Normally, I experienced quick improvement by increase pred. Our body just the mystery, isn't it? I am learning every day.
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