Hi Everyone, Hope you’re doing well. I’m new here. Second post. My husband was diagnosed with PMR in March 2022. He is really suffering mostly with left shoulder pain more than anything. We’re going back to Rheumy on Monday and an Internist on May 10th. Both doctors are new to us having recently moved. What are the best questions to ask the doctor and are there any tests we should ask for? I’ve been reading through the posts and saw a dexy test, but want to ask the experts because this is so overwhelming. I also want to make sure he doesn’t have another condition. Should we ask for a GCA test? He also said he had some blurred vision, but he also takes Latanaprost eye drops, so I was not sure if this is causing the blurriness. This is so hard for me because my husband doesn’t like being helped and becomes aggravated with my questions, but I’m so worried. Just lost both my parents to Covid and I’m scared when I see him sick like this. I am scared and nervous. He won’t read through all the info so I’m trying to get as much information as I can. One last thing, ER doc gave him50mg of pred. Went to rhemy 2 days later who reduced it to 20mg for two weeks, then 15mg for two weeks and now he is down to 10mg every 24 hrs and is SUFFERING! I told him to increase back to 20mg to get the pain down and that made a difference. He called rhemy yesterday and she told him to continue low dose every 24hrs. We’re lost with the tapering. We’re going to see rheumy on Monday and then to a new one on May 16th for a 2nd opinion and will also see new Internist for a physical. Any advice on tests and questions for the rheumy and internist would be most appreciated. Thanks for listening to my long post.
Tests and questions to ask rheum/internist. New P... - PMRGCAuk
Tests and questions to ask rheum/internist. New PMR male patient diagnosed in March.
Please don't stress, There will be lots of people along with support tomorrow when Europe and the UK wake up! When he was first diagnosed, did he have mostly bilateral pain, and is the shoulder you mention bothering him more now that his pred dose isn't high enough?
The test you mention may be a DXA or DEXA scan which is very low level x-ray to test for bone density. This is advised as pred is often blamed for bone thinning, but as many of us can attest it is not inevitable and can be avoided by appropriate exercise and nutrition. It is a good idea to have one early in treatment as pred's effects are strongest early in treatment when the dose is highest and the body has not adjusted. It is also usually not necessary to take bone meds which might be offered, but simply to be careful to eat well and get appropriate exercise, plus take Vitamin D and Vitamin K2 (not K1).
The most important thing for your husband right now is to be on the correct dose of pred for as long as it takes. He obviously must be at a level which controls the symptoms or there isn;t any point taking it at all. The initial dose for "just" PMR was too high, and the subsequent drop too drastic and rapid. A high starting dose for PMR is 30 mg. If 20 mg is relieving the symptoms he must not be pushed by the doctor to reduce rapidly to 10. That will only result in yo-yoing the dosage and he'll end up taking more pred than if he stays at 20 for perhaps as long as a month, then reduces initially in 2.5 mg steps, staying at each level for a couple of weeks probably , some would say a month for each taper. Certainly by the time he gets to 10 mg, he should not taper by more than 1 mg at a time, and many of us find as we get lower that half a mg is sufficient. And by that I mean tapering by .5 or 1 mg no more frequently than every month or even every six weeks. Patients have developed a number of slow taper plans and these can be very helpful at lower doses, and even people who are at 20 mg can find a slow taper very useful. These and lots of other information can be found in our FAQ post linked just below your question above.
I don't know anything about heated pools. I'd be cautious doing anything which might stress the body. I assume you must be in the US and 90 degrees fahrenheit? So it's close to body temperature, which could be soothing.
Tests for PMR and GCA include measurements of inflammation markers. As far as I know these include CPR, ESR and sometimes ferritin. A doctor should run the usual tests they do to make sure there is nothing else going on. PMR is a diagnosis of exclusion. If no cause for the pain can be found, but there is inflammation which responds well to pred but not to usual painkillers, then it's PMR! However, be aware that some patients do not show markedly high inflammation on tests, and also pred when it's doing its job will lower the inflammation. Somoe doctors seem to think this means one is cured, but there is no cure for PMR. It almost always goes into remission and then pred can be discontinued, but that will take at least 2 years and sometimes longer.
You could read up on differential diagnosis for polymyalgia rheumatica just so you have some background and understand better what the doctors should be ruling out. I would also advise seeing a specialist eye doctor who can examine the eye for any possible signs of GCA. I saw my ophthalmologist early on, and I had no signs of GCA, but I did have increased ocular pressure, so he monitored me more frequently (in fact still does, though not as much) for the first year. This is a pred side effect, but I think not a very common one.
To avoid weight gain associated with prednisone, cut carbohydrates, especially the "white" carbs found in baked goods, pasta, sweet foods, etc. This will also lessen the likelihood of developing high blood sugar, or even diabetes if there is a tendency to high sugar already.
Here's a link to info about differential diagnosis:
uptodate.com/contents/clini...
Hi HeronNs, Thanks for your reply. Prior to being diagnosed, the pain started in his shoulder and hen became bilateral and then arms and hips and lower back. He could not lift his hands over his head or bend to tie his shoe. He could barely walk. It was awful. Post diagnosis and pred, the pain primarily is in the shoulder and upper joints. At night it is very painful. We are in the US. The 90F pool seems to help, but does not eradicate the pain. I’m worried about the GCA symptoms. He was diagnosed with increased pressure in the eye before this PMR went full blown. He is taking eye drops for this. Thanks for sharing the carbs info. We eat pretty healthy, but my husband loves chocolate!!! I told him about the diabetes warning from the pred. Tomorrow is his Rheumy appointment. I’ll mention the Dexa scan. Will share the outcome of his appointment. Thanks!
I think the pain at night is a significant marker for a different disease, which I'm afraid I can't think of the name at the moment but PMRpro has mentioned sometimes when people describe this particular symptom. So it's worth mentioning this symptom to the doctor as it may help with diagnosis.
Ankylosing spondylitis - starts much earlier in the night than the 4-4.30 that is more common in PMR. But it tends to be mainly back pain and night pain in PMR can simply be that the antiinflammatory effect of the pred isn't lasting the full 24 hours.
Do stop panicking until you see the rheumy - they will ask the questions and you should follow their lead. Many doctors do get very irritated by what to them are irrelevant questions from people who just have the background of Dr Google. Yes, I know you found us via Dr Google but learning the ropes for participating in your care takes time and the first thing that has to be established is the diagnosis. Then you can learn about YOUR version of PMR and what works for you - because we are all different to some extent.
The ER doc had slightly blurred the view by starting him on 50mg - unless there were distinct signs of GCA and slightly burry vision alone without any other symptoms although the immediate drop to 20mg takes it back to a more reasonable start. The rheumy obviously doesn't think it is GCA or he would have been left at 50mg. Without hearing a lot more about her views it is wrong to say the reduction is wrong - she may well be using the pred dose to add to the evidence for the diagnosis. The reductions he was told to do are NOT ideal in PMR and should be slower (in the view of pretty much everyone here and also many top experts in the field). PMR is characteristic in responding to a moderate dose of pred - 20mg is pretty standard at the start. Then the dose is tapered - titrated is another word used - to identify the lowest effective dose for this particular patient. If you taper either too quickly or in too large steps then symptoms are likely to return - they have, she may take that as evidence. The top experts say 10% of the current dose at a time - 5mg at a time is obviously far more than that but is a normal step down when reducing the dose to get the patient off pred. By doing it this way it does mean she is gathering evidence to make a final diagnosis and if she decides it ISN'T PMR, then he need not stay on pred unnecessarily.
But be careful - establishing a good relationship with your medical team really is critical since this is a long term journey and trying to take over may just cause bad feeling. Especially since it isn't YOU but your husband and he too may just get difficult about your "interference" as he perceives it. Men can be hard work when it comes to long term illness! Been there, done that.
There is no "test for GCA" - it is primarily a clinical diagnosis at the outset and without any symptoms there is no point in demanding a temporal artery biopsy since it often isn't positive anyway although a positive result is 100% certainty it IS GCA. And once one has been done - there is no second chance at a later point, the piece of artery is gone. If vascular ultrasound is available that might be worth it - but it isn't widely available. The rheumatologist is capable to doing a physical exam and tests - they too are physicians and possibly even better qualified to make differential diagnoses in a rheumatic conditions which is how your husband is presenting so I am not sure why you are introducing another opinion at this stage.
PMR is painful but it isn't life-threatening or life-limiting so this isn't a situation like a stroke or heart attack where things must be done quickly. Patience at this stage and getting the situation clear may save a lot of problems later. Pred is the only real option at present for managing PMR so knowing it is more likely to be PMR than the other possible rheumatological options is important. So is ruling out the various other things that can cause the symptoms - PMR is not the illness, it is the name given to a set of symptoms that can be due to a range of other things, including several rheumatological disorders and even a couple of cancers. Being on too much pred while the differential diagnosis is being clarified interferes with results and can even delay getting the final answer. If this first doctor has him on a high enough dose to manage his symptoms and you go to get a second opinion while he is actually feeling well and with few symptoms, the second doctor may say they can't come to a conclusion without him stopping the pred again and you will be back where you are today.
I do understand why you are in such a panic - you are in a very raw state after your losses to Covid but PMR isn't Covid and that will have been ruled out. If he had had Covid, it is possible this is Long Covid, there are many similarities. But the doctor needs to be allowed to come to her own conclusions. She may not agree - but you have to then go about preparing a case for finding out why she does or doesn't think it is PMR. The ER isn't the place to make a complete diagnosis but the ER doctor did take the step to reduce any risk if it had been GCA and then the rheumy assessed it as the expert specialist. Now you are at the next step. Diagnosing autoimmune rheumatological disease is a slow process to get it right - there is no magic test and no magic pill. If you learn nothing else, you will learn patience.
Hi PMRpro, Thanks for your reply. Ok, I will try my best not to panic. Your reply made me feel more calm. Tomorrow is the Rheumy follow up appointment. We will see what she says and I’ll ask about tests she recommends to ensure there are no underlying issues. She seems ok and I’m grateful that she diagnosed him. At least we know what this thing is. However, she hadn’t been practicing long, so I wanted to go to a Rheumy with more experience. Maybe it doesn’t make a difference. I don’t know. We’ll see tomorrow. My husband has an annual physical on May 10th as well. I’m trying to be supportive without being overwhelming, but it’s hard. He also leans on me to manage his illness by reading up on everything. I’ll take your advice and give the doctor a chance. You’re right, we have to have a good team to get through this. I’ll be in touch after his appointment. Thanks. Wishing you a nice evening.
It doesn't always make a difference - because some "experienced" rheumies have fixed ideas that don't always fit with the patient they have in front of them. That seems to be more the case in the US at times, I suspect it may be because they sometimes operate in a vacuum in an office with no academic connections and tend not to be involved in research which often drags them up to date. When the PMRGCAuk movement got going some 15 years ago the views were very different from what they are now - and some of those changes have been because we are more vocal about patient experience not relating to the old views. In Europe in general, rheumies are in the hospital environment and see a wider variety of patients at some point plus are involved in research - which does broaden the mind!
Hi PMRpro, The follow up with the Rheumy was quite annoying. My husband informed her that he upped the pred to 20mg to get out of pain. This was a result of her not responding to his call. He informed her of the extreme left shoulder pain. She said she would order an X-ray. We drove to the clinic the next day to take the image only to find out she never ordered it. Okay maybe she forgot. However, she forgot to call him to discuss his labs and urine test as well. I’m done with her. It’s too much chasing. All of our doctors follow up with results. She is attentive when you are in her office, but once you leave you don’t exist. I don’t like it. Tomorrow he has an annual physical with the PCP. We’ll find out more in regards to the shoulder and if it’s PMR, which she was supposed to tell him. Next week we have the appointment with the new Rheumy. If he has good bedside manners and follow up, we’ll stick with him. For the most part, we don’t select US born doctors. We’ve always used doctors from abroad because we find them to be more open, well researched and interesting across the board. They seem to appreciate other scholarly opinions and are more down to earth. The US has become extremely political and polarized which has impacted every aspect of life. I lived and worked abroad for many years, so I prefer a more well rounded approach to healthcare and don’t want my healthcare based on political viewpoints. I guess that why I am here! My husband is doing better. Not perfect, but better since he went back to 20mg. Thanks to all of you, he has learned how to taper to stay out of pain. Hopefully he does not have any underlying issues, which we will find out tomorrow. The one thing he is worried about is GCA. His eyes have been blurring quite a bit and they are red. He will contact the eye doctor tomorrow for an appointment. This PMR has taken precedence in our life now. But hopefully this too shall pass.
Pred itself will cause blurring, especially at higher doses and I'd include 20mg in that in this context.Good luck with your options - so frustrating when you get such blinkered responses.
Thanks for sharing about the blurriness from Pred. I’ll let my husband know this. I appreciate the good luck wishes with our new doctor options. We’ll see what happens today and next Monday. It takes me hours to research these doctors. I look at their training and pedigree to include seeing what vibes I feel from their pictures! It’s really a process. I’m pretty good at this for the most part, but I’ve also picked some dousies (quacks or annoying idiots) a few times as well! Trial and error!
“torture chamber” is a good explanation of RA in the night.
Do you ever think how YOU would react if it was your wife, not you, in this position? I know I would do as much as I could to help but I don’t think I would be so ‘patient’ as my OH.👏👏👏 for all our dedicated helpers.
Hi Dad2Cue, Thanks for your message. I must say I smiled when reading your post. Your wife and I may be twins! I’m just like her. We only love you and want to help. I’m the office administrator at home and health manager. My husband leans on me for these things. However, he does get annoyed when I accompany him to the doctor with my notepad. But I have to tell you that PMR changed the game. He was in so much pain that he asked me to accompany him with my notes and all!! We had a recent follow up appointment with a Rheumy doctor. After this visit, she has to go. Her follow up skills are not good enough for this disease. She addressed his left shoulder pain by ordering an X-ray. We drove all the way to another clinic only to find out she never put the order in for the X-ray. She did not call him with his blood results and just seems to be disorganized. We have an appointment tomorrow with his PCP for his annual physical and an appointment with a new Rheumy on Monday. If this one is good, we’ll stick with him. My husband is very vulnerable right now. He had a total knee replacement in Nov 2021 and was in extreme pain and now this. In addition he, just retired from his position of 37 years and is experiencing anxiety over that too. It’s a lot. We also just experienced me losing both of my parents to Covid and at the same time I was diagnosed with breast cancer. It has been a roller coaster!!! I’m recovered now and managing my grief while taking care of him, but I think he is overwhelmed. So, I’m doing my best to help him adjust and to encourage him that he will not spend his whole retirement with PMR. I’m so thankful for this community. It saved me because we did not know what was happening. I was scared to death of losing him. Now I feel I can handle this now. He’s on 20mg of Pred and tapering down slowly. His pain is getting better and tomorrow we’ll look into some of the tests and recommendations made by caring members. Hope you are doing well. Wishing you perfect health and positive vibes.
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