GCA diagnosed January last year. Struggling on only 5mg Pred per day. Joint pain fatigue etc. Rheumatologist still advising me to reduce dosage further. However scan reveals I have osteoporosis on my right hip and have been referred for total hip replacement ! Could this be why my consultant has been pushing me to get off the Pred so fast? I must add never had problems with my joints until I took Predisolone .
I am still in shock!
I am sorry that this has happened and can completely understand your shock. Osteoarthritis has popped up in me during my period of PMR ( 3 years). I am putting it down to age. Nothing I have read suggests that our conditions and treatment accelerates this condition. Who knows though. I have heard conflicting advice about Prednisalone and operations. Let us know what happens.
That is an unbelievably quick steroid reduction in 14months. Have you overshot the dose which keeps your GCA disease under control? . Whether you have osteoporosis or not I worry about your GCA. Second opinion? I would.
Osteoporosis or osteoarthritis?
Osteoporosis
That’s odd. Not heard of hip replacements for osteoporosis! In fact having osteoporosis raises the risks of fracture in a hip replacement.
Are you on biphosphonate? Vitamin D? Have you been checked for hyperparathyroidism? Diabetes? Thyrotoxicosis?
Hi Seagu11,
I am afraid we are all in the same boat with Prednisone. It is a devil's bargain. You mentioned you were diagnosed with GCA a year ago or so; how did that diagnosis come about? You do mean giant cell arteritis.?? Just clarifying because there are so many abbreviations flying around this site.
Osteoporosis is certainly a reason why your doctor may be rushing you off Prednisone because it weakens the strength of bones, but there are other medications for treating osteoporosis, and if you are up to it light weight lifting is a great help. I doubt you are up to it the way you sound.
You did not mention if your GCA diagnosis was connected to polymyositis rheumatica as the two often go together. PMR is going to cause you joint and muscle pain; steroids should be helping with that pain and 5 mg. is a not a sufficient dose to relieve that type of pain . I am not a doctor, but I think your doctor needs to reevaluate your diagnosis, and I would not rush into a total hip replacement either.
Your diagnosis may not be correct.
You may need a higher dose of Prednisone in fact. If you don't respond to a higher dose, your diagnosis may not be correct.
Having had PMR, I was started on 16 mg. and it resolved all my pain for awhile. All doctors. seem to want to rush pts. off Prednisone prematurely. My doctors have settled on polymyositis rheumatica. as a diagnosis, and I am managing on 4mg after 2 +years. But still have good and bad days. And also have osteoarthritis of the spine with nerve involvement.
Frankly, something doesn't sound right about your diagnosis and treatment. Steroids should not be causing you joint pain, but helping instead. 5mg also seems too low a dose for GCA which can cause blindness and other serious consequences. Was your GCA confirmed by biopsy? I don't know your age, but you could be coincidentally be experiencing osteoarthritis which most folks experience over a certain age .
Which joints are hurting you that never did before you were on steroids?
That is important to know.
Don't let any doctor rush you into hip replacement surgery , a major surgery, without a 2nd opinion, or rush you off steroids, and I would demand a second opinion on your diagnosis and treatment. If you were correctly diagnosed with GCA, it's possible the joint and muscle pain of its partner PMR manifested after , in which case 5mg. is not enough. If you don't respond to a higher dose, your doctor may be barking up the wrong tree.
If he/she is a GP, demand referral to a rheumatologist. Don't let a doctor intimidate or control you. Be firm. See someone else.
Good luck and let us know how you are making out.
What is polymytosis rheumatica?
Polymyositis rheumatica is an autommune disease ( the body starts attacking itself), which causes pain in your upper body muscles and sometimes lower body muscles. Mine started with shoulder pain, collarbone pain, biceps and hand, wrist and finger pain, neck pain, I had never had before. I was used to chronic lower back pain, but polymyositis rheumatica is different; it sometimes makes the joints close to those muscles painful too; it also causes fatigue and malaise; a feeling of being just unwell and your mood may be down. You are very stiff, especially in the morning, and may not want to move or do anything at all; you might find it painful to reach up to a shelf for a teabag. It can last quite a long time, and it does require a doctor's diagnosis and treatment.
Not polymyositis - POLYMYALGIA rheumatica. Polymyositis is a different thing altogether.
I am only using terms that are being said to me when I am at the doctor's office; and are documented in my.records. They , meaning doctor and ancillary personnel may speaking without clarity. My understanding is that I have PMR as you do.
GCA is Giant Cell Arteritis- and do you mean Polymyalgia Rheumatica -PMR?
GCA does affect the blood vessels surrounding the shoulder joints as well as those arteries in the head and torso.
I agree that 5mg is not enough at the moment to control Seagu11’s pain, but that because the reduction has been too quick, not because the diagnosis is incorrect.
Actually the pain before a total hip replacement can be excruciating and more debilitating than the pain from PMR or GCA, so it’s a matter of deciding whether it safe to operate- and that’s between patient and surgeon.
On this site you will only come across GCA meaning one thing: giant cell arteritis. Which is closely related to polymyalgia rheumatica.
Polymyositis is a completely different disorder even if it does have some similar symptoms and may be treated with pred:
webmd.com/arthritis/polymyo...
It is one of the things which should be ruled out before making a PMR diagnosis - polymyositis differs by destroying muscle cells and raising an enzyme in the blood.
I know the feeling, the first I knew of osteoporosis was when I fractured two vertebra! A few of us are unlucky enough to get osteoporosis as a side effect of prednisolone. You may already have had it and the pred made it worse, did your consultant order a dexa scan at diagnosis? Osteoporosis is a "silent" disease so a sudden event like yours is not unusual.
Have you contacted the Royal Osteoporosis Society? Their helpline people are very sympathetic and knowledgeable.
If it really was GCA you had last year, to be down to 5mg in little over a year is very fast and I'm not surprised you are having problems if PMR is part of your GCA.
Like Heron and Soraya I'm surprised a diagnosis of OP is being dealt with immediately by hip replacement. I think I might want a second opinion. Have you had a dexascan as that is the only way to assess osteoporosis.
Agree completely.
I too discovered I had issues after I was diagnosed with PMR. Found out I have OA in my knee that requires a replacement. Ortho surgeon said I had chronic organic issues (meniscal tears, ACL injury, and years of being overweight) likely lead to development of OA. This followed by 6 months of unchecked inflammation in my knees before I was finally diagnosed with PMR probably advanced the cartilage deterioration.
Of note, he said it didn’t matter what level of pred I was on when I get my knee replaced surgically, however there may be a higher risk of infection, and the steroid knee injections I am getting can also advance the deterioration of my knee. Because I’m on a two year wait list for surgery, I will continue to get a few knee injections to afford me some mobility in the meantime.
I’ve heard of physicians wanting patients with osteoporosis to get off steroids sooner than later as pred affects the calcium in our bodies, hence why we are instructed to take supplements. ATB moving forward.
Diagnosed with PMR May1/18
Starting dose 20mg
Current dose 9mg
I think some of us are a bit perplexed about the rush to give you a hip replacement as in general osteoporosis is one of the contraindications for such surgery. But of course we don't know your individual circumstances.
I was diagnosed with GCA 2 years and 6 months ago. I could not taper below 30mg without symptoms returning and inflammatory markers rising. I inject Actemra weekly and take 3mg Rayos (Prednisone) every night.
Everyone is different. Ask your doctor about their reasoning. I take allendronate for prevention of osteoporosis. I am still achy and have no energy.
If you feel unwell lowering your Prednisone, your body may still need it. These conditions are complicated. I feel for you. So much is still unknown about the disease. Listen to your body. I wish peace of mind and health for you.
Rheumatologist refuse to believe I have PMR.
I don’t believe it
Doctor visit tomorrow don't want change i don't know. 😤
I really don't know where to start
