Advice please
Posted , 13 users are following.
Good evening, I am 54 and started develop PMR symptoms whilst recovering from surgery on my foot. 8 weeks ago, at first I thought the terrible pains in all of my joints was due to poor posture from the use of crutches for 5 weeks, then I got the flu on Xmas day and the pains got really unbearable. The stiffness when I wake up is the worst and sitting down and getting up. I dread bed time because it’s so darn painful. My foot was healing nicely but this joint pain was nothing I had ever experienced except when I had operations on both frozen shoulders 10 years ago. I went to the doctors as I was due to return to work and she said “ it’s the flu” but the flu came and went and my pains stayed. 7 weeks later from when it started I have finally seen a rhumatologist who thinks it is PMR but I have to wait 2 weeks to see him for the diagnosis and this is through BUPA. I am back to work and struggling to manage the pain and stiffness and driving hurts my arms and neck. I am so stiff when I get out of the car too. I bathe, rub volterol into my joints morning and night and take co cocodomol with parecetomol in a morning and at night but only take patecetomol during the time I’m at work. I used to take ibruprofen but he told me my blood pressure was dangerously high so I stopped that straightaway. Please can you advise what would help to manage the pain until I get confirmation of the diognosis as I’m not coping too well 😞. Really sorry for the length of this but don’t know wear to turn at the moment x
1 like, 77 replies
shirley01187 michelle06123
Posted
Hello everyone, my post will probably be lengthy, sorry for that, but REALLY sorry that a forum like this needs to be created. I am no stranger to pain, but..... In 2015 I had bilateral mastectomy for Breast CA, in 2017 I had a total thyroidectomy for thyroid CA. I have been diagnosed with Fibromyalgia, Chronic back pain and Osteoarthritis. I was prescribed an estrogen inhibitor due to breast CA being ER+. This med causes osteoporosis so I was give Zometa to build the bones. I had severe joint and muscle pain after the first infusion, (given every 6 months) but Oncologist did not believe the Zometa was the cause. So I tried two more infusions with the same out come. He changed the Zometa to Prolia. After the 3rd injection of Prolia I started having severe debilitating joint and muscle pain, which I contributed to the Prolia. The pain in my legs are some better, but my upper body; shoulders, upper chest, both arms and hands are sometimes unbearable and nothing really touches the pain. I saw my GP today for a check up and told her of my symptoms. When my pain first started, I could just straighten my legs out in bed and my knees SCREEMED out in pain. My knees still hurt and are sore, but the upper body pain is unrelenting. She doesn't think the Prolia is causing the symptoms. She ordered lab work. She gave me RX of prednisone and told me if it helps, she will go with the diagnosis of Polymyalgia Rheumatica. Just driving 10 miles caused awful and deep pain in my shoulders upper back and arms. My arms and shoulders feel like lead! The pain is much worse in the mornings. I may have read some of your comments that addressed this question, but if you don't mind telling how long it took for you to tell a difference after starting the prednisone? I normally babysit my 2 granddaughters but haven't been able to babysit myself lately, My kids are my heartbeat! I don't know how my life would be without them. (My husband decided it was time for a divorce 2 weeks after the mastectomy, no pity please. I'm dealing with that) I have also been treated for depression for years. This pain and inability is only causing more depression. Was everyone's sed rate (ESR) elevated??
michelle06123 shirley01187
Posted
Speak soon
Michelle x
Anhaga shirley01187
Posted
Shirley, I'm sorry you are having so many problems. I suggest you create a new post in case people didn't "follow" this one when it was first posted several days ago.
Do you have osteoporosis or was the medication prescribed as a preventative? I can have quite a lot to say about that if it was prescribed "just in case".
Regarding response to pred, this varies from person to person. The average starting dose is 15 mg, although some people start a little higher, and very few have been known to be started at a lower dose. One of the ways PMR is diagnosed is if there is a good response within a short period of time to this relatively low to moderate dose. That "short" amount of time can range from a few hours (I know, aren't they lucky?) to a few days (took me about three, although I did start to feel better within a few hours but at first it almost seemed like my imagination) or sometimes a little longer, and sometimes the dose needs to be raised to, for example, 20 from 15, but this seems relatively unusual, before a good result is obtained in a couple of weeks. The least improvement you should expect is 70% relief of pain, and most of us will experience something better than that. I was a lucky one and all my pains went away including those caused by osteoarthritis, but if you also have fibromyalgia I'm afraid pred doesn't work for that.
If the pred does help you feel considerably better, please resist the urge to be very active again. You will still need to pace yourself and can't expect to do everything you used to. If babysitting the little ones is a priority you may find something else has to be put to one side for the time being as you recover.
Please consider reposting your question in a new post, I'm sure you'll get more replies.
Anhaga
Posted
Michelle reminded me - no inflammatory markers are, apparently, not raised in about 20% of PMR patients before starting pred. Of course once you start treatment the inflammatory markers should come down, that's what pred does.
shirley01187 Anhaga
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shirley01187 michelle06123
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Anhaga shirley01187
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Unfortunately it's no longer considered best practice to give osteoporosis drugs to people who have normal or so-called osteopenic bone density, although it seems not all doctors have got the message yet. It should be perfectly safe for you to discontinue the medications, especially as you appear to be having unpleasant side effects from them. A study showed that nutrition, a few supplements and appropriate exercise can improve bone density as well as the meds, without any side effects (except improved general health).
https://www.hindawi.com/journals/jeph/2012/354151/
Anhaga shirley01187
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EileenH shirley01187
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No - up to 20% of patients do not have raised blood markers - I am a member of that elite band! Just makes the diagnosis more complicated unless you have a doctor who is more interested in the patient than the lab results.
I have to say I'm a bit surprised that all your doctors won't attribute your pain to the Zometa and Prolia - both have joint and muscle pain listed as side effects. Which COULD be said to be PMR triggered by the drug - there are drugs with that propensity!
Have you started the pred? What dose has she given you? I experienced a big difference with 15mg in about 6 hours - but some people take a week or more and some people need a higher dose to start.
shirley01187 michelle06123
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michelle06123 shirley01187
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EileenH michelle06123
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EileenH
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michelle06123 EileenH
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michelle06123 EileenH
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EileenH michelle06123
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You know there is a northwest of England support charity? The link to its site is the second in this post:
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
If you want advice about good consultants they may be able to help you find either a better private one or an NHS one. Some of the local consultants are involved with the charity - who by definition are likely to be patient-friendly. Many rheumies seem not to be!
In the replies part of that thread you will also find a slow reduction plan that has been used successfully by many patients on the forums to reduce without flares and to lower doses than they have been able to before. It is being used in a clinical study in Leeds.
michelle06123 EileenH
Posted
Michelle x