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Can PMR present in the clavicle too?
I’m a 62 year old female, who was diagnosed in summer of 2020 with PMR. About two weeks before the PMR symptoms happened, I had a sudden onset thunder clap headache come out of nowhere, while brushing my teeth. It didn’t feel like a normal headache, but like my scalp was on fire! I would later be diagnosed with Occipital Neuralgia.
Then I had barely gotten my ON symptoms under control, when I began having pain in my quads, hamstrings and upper body. I went to see a Rheumatologist, who diagnosed it as PMR in September of 2020. I’ve been treated with prednisone and have been through numerous tapers…without success. I was put on Methotrexate with my prednisone and began to taper again and once I dropped below 5 mg of prednisone, it all came back. I was on the Methotrexate for 6 months.
I’ve since tried three more times to get off the steroids and no go! My Rheumatologist recommended Kevzara last Spring as another option, as an assist to taper off. I asked her if I could try on my own one more time, before trying Kevzara, as I wasn’t too thrilled with the possible side effects. During a 8 month very slow taper, I was able to get down to 3 mg without significant pain. I felt I could deal with the discomfort, that was presenting with the taper. But once I dropped below 3mg, I began having clavicle soreness on my right side, which quickly became very sore and eventually moved to the left side as well. It felt like a burning pain at times and made my chest wall below the clavicle, very tender. I was unable to get my shirts on without terrible discomfort and laying on either side was uncomfortable. After enduring 3 months of this, I let my doctor know..I was upping my steroids to 10mg. It took 5 days and finally the pain was nearly gone!
I saw my Rheumatologist last week and she said it couldn’t be PMR, that it just doesn’t present that way and she had never had a patient say they had it there. She mentioned I could try Kevzara, but also said that it wasn’t shown to work on patients with no inflammatory markers…which I’ve never had. I decided it wasn’t worth all the side effects, if it wasn’t shown to even be effective in people without inflammatory markers.
She ordered X-rays last week on my clavicle area and my groin, which are two areas that I’ve had some of my worst pain. When it’s really bad, my legs hurt a lot as well.
Since the X-rays all came back very normal, she is still pushing Kevzara…now for 3-6 months. I’ve been in other forums and a couple people with PMR, have had it present in their clavicle area…but she’s not hearing me. I’m just frustrated and ready to be well. I’m very active and workout a lot. I have never lessened my workouts, even when it makes me more sore at times. It’s my mental savior, with this horrible disease! When I increased to 10mg, the clavicle pain nearly was gone. Now it’s creeping back in and I’m still on the same 10mg dose of prednisone. My Rheumatologist says I’ve been on steroids too long and now I’m worried she’ll cut me off, if I don’t try Kevzara.
Thank you for your support!
Lori
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I feel for you, you are not alone. This is one frustrating disease. I am down to 3.5 mg and I’m trying to stay there, it’s right on the edge. I’ve had it for 8 years and I am comfortable staying on Pred for the long haul under 5 mg. I started Kevzara then backed out after one injection, scared of cancer.
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1 ReactionKevzara also decreases inflammation by blocking
IL-6 which is the basic problem in PMR.
X-ray does not always show inflammation.
Ultrasound may be more helpful.
Kevzara may take weeks to help once therapy is started.
If you are conflicted consider a second opinion with
another rheumatologist. They may ask you to modify
your exercise routine. I believe clavicles can be involved
in PMR especially when we are active and workout with
our upper body.
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2 Reactions63 yrs old. PMR for over two years. Early in PMR my Sternoclavicular joint on one side was noticeably swollen and felt tender. It has since gone down to normal.
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1 ReactionIt appears we may be GC- responders or GC- resistant
Glucocorticoid
@lori62yb
Hello Lori,
I don’t know why your doctor would say that PMR doesn’t normally present in that area!?Really, it almost always is in your shoulder area and last time I looked your clavicle is in that general area! I get horrible pain in my shoulder/clavicle area. Is she a rheumatologist?
Anyway, I’m so sorry to hear about your PMR journey// it can be very frustrating, I know. I’m on my 2nd round of PMR and have tapered down to 5 mg prednisone. I have an appointment with my rheumatologist in April (the soonest I could get!). He wants me to try Actemra and I would like to get off prednisone and pain medication so I’m willing to give it a try.
Wishing you the best on this continued journey with PMR.
I startedKevZara on January 9. I just had my third injection this week. And had lab work. I have standing orders now for lab work once a month. I’ve been on 20mg for over 10 years. I’ve tried to titrate down several times did not work , tried methotrexate, longest I ever was on methotrexate was seven weeks and then had severe abdominal pain so that was my second try of methotrexate, so far the Kev Zara is not giving me any problems. In fact, I believe my shoulder pain is better. I just started to titrate down to 17.5mg this week on the prednisone. My rheumatologist and my GP who I actually have more trust in, told me it’s unlikely I’ll ever get off prednisone. I’ll probably always need between five and 8 mg and I’m OK with that because I have not had horrible problems with prednisone. I was diagnosed when I was 54 which was young and it took them forever to diagnose me because you know of all the things.::: I was a woman I was too young, this that the other thing but that’s what I had . I think sometimes the Docs push you so hard to get off of prednisone. They’re not paying attention to managing your symptoms and if you can’t manage your symptoms and be mobile, it’s kind of counterproductive to the whole thing. So as much as everybody pushes to get off of prednisone, I feel like the medical community at large is still very unfamiliar with PMR as a diagnosis and how to manage the symptoms. I’ve had other orthopedic issues that have complicated things for me. I had had three back surgeries total knee replacement, and last year in the spring developed vertigo and fell in my own house and broke eight ribs so that all coupled with the PMR has been a challenge for me. but all that being said, I was willing to try the Kev Zara did a lot of research and reading about it it seems like it’s been used longer and more widely prescribed in the UK and some other European countries. I’m in a support group that is very internationally based so the dosing and treatments are very different in the UK and some other countries. so I would Kevzara a try. I know there was someone who commented they did one injection when it was afraid of cancer, but I think if your blood work is drawn monthly or every six weeks and somebody’s keeping an eye on it it’s worth a try. I am titrating down 2.5 mg a month so I’ve only gone to 17.5 this week and we’ll see how this first month goes but anyway hope that helps.
There’s a lot of research out there about these ILK6 receptors and blocking this protein, which is what Kezar is supposed to do and I think it just takes some time. They say anywhere from 2 to 12 weeks and I wasn’t really sure if they meant 2 to 12 weeks or 2 to 12 injections so I’ve had three injections so far.:; do we shall see.., we all need to hang in there and do our own research too.
Joy
Yes, PMR can affect the clavicle area, at least according to the rheumatologist Dan Bunker who made a presentation to a medical school class entitled " Polymyalgia Rheumatica, what has changed since 1957?" You can find it on YouTube. He uses ultrasounds and PET scans, not x-rays, to show inflammation. Either end of the clavicle can be affected, at the sternum or shoulder. When my PMR was very active I had pain in my rib cage, making it painful to take a deep breath. I also had stabbing pains under my shoulder blades as well as diffuse pain that went from one shoulder to the other. Many of the odd pains I did not mention to my rheumatologist because they are looking for classic symptoms (which I also had) and I did not want to be pigeonholed as a psycho female chronic pain patient!
I always keep in mind that each of us has our own journey. April 2024 apparent GCA attack left eye lost 15% - never medically verified (not unusual) began 48mg Prednisolone . 7/10/24 began self injections Actemra 162mg/.9ml once a week with 15mg Prednisone 10mg AM 5mg PM also began a tape reduction of 1mg/week Prednisone. Between then and now Actemra was temporarily stopped for Covid (1 injection)then a tooth extraction (1injection). Today I am holding at daily 2mg Predisone and the Actemra weekly. Will be meeting with Reumatologist plus Blood work in 3 weeks for next steps. I had minimal side effects with the Actemra, sometimes tired the day after the shot. If you try the Actemra. I wish you good health on your journey.
I’m sorry to hear your doctors not listening to you polymyslgia rheumatica can be difficult to diagnose as the symptoms are similar to other conditions , including rheumatoid arthritis . It could be your doctor has not ruled out the possibility of other conditions . PMR most commonly gives pain and stuffiness in the shoulders and neck . It’s horrid , I know !! I wish you all the best with things