Hi, I got off Prednisone just at the beginning of the Pandemic after having been on Prednisone for PMR for 4 years (undiagnosed with PMR for 2 years before that). My SED rate is 33 but my doctor says that is okay and that I don't have PMR anymore. A lot of my symptoms I had are gone but I still have trouble walking. My doctor said, "You are not even walking."
Sometimes my legs feel heavy and I cannot walk smoothly. Now I have bi-lateral hip bursitis (very painful) because I am not walking normally. Will this ever end. Any help from anyone?
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Robinre
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That’s not good is it? Lots of questions spring to mind. Ok, so if your ESR is 33 and you don’t have PMR what is it? Something’s kicking off inflammation, so has the doc offered any other diagnosis? Have they done any investigations? On what grounds do they think you don’t have PMR still? Have you ever felt ok such as when you came off Pred? At what point did the hips start to give out? I don’t understand their comment, “You are not even walking”. What was their point?
Hopefully a bit more information will help others reply.
Hi, my hips started to hurt about 8 months after getting off Prednisone. As for the "you are not even walking" my doctor offered nothing else but when I looked on My Chart he noted that I had a "shuffling gait." Of course, I did, I was in pain and did not take a big stride. Now when I go to other doctors they will zero in on that "shuffling gait" comment and look for something sinister. That is what happened with my PMR. When I would go to other doctors they would zero in on that. For instance, I went to my Dentist with TMJ problems and he said he thought I had GCA (he knew I was under care for PMR) and told me go and see my Rheumy. I knew I didn't have GCA because my husband and I researched GCA quite a few years ago. So, I went to another dentist and I had severe TMJ and had to do exercises and use wet heat packs and be under her care for about six months before it finally cleared up.
Yes, I have read about the PMR "waddle." But neither my regular doctor who made the comment or even my Rheumy want to consider this. However, when I first was diagnosed with PMR I also had Piriformis muscle pain and was given an Epidural and that pain was eliminated immediately and never came back. Last week I had another epidural for Piriformis muscle pain (my own request from yet another doctor) and I immediately noticed the heaviness to my legs dissipated and now I seem to be walking much, much better. My doctor's nurse sarcastically said that patients go "from doctor to doctor." No wonder they do. So many do not treat you properly and you then begin your quest to try and diagnose yourself and find another doctor to treat you. This is very hard since I have to be referred to another doctor. My insurance company told me to ask for "an emergency referral" out of network doctor and then file to be reimbursed and why.
My SED rate was 30 when I stopped the Prednisone; bu,t Rheumy attributed that to lower back issues I have always had. I really don't have the symptoms that I had before being diagnosed with PMR, such as difficulty walking, the shoulder pain, fatigue, etc. so I also don't think I have PMR again. I had three flairs at different times over the 6 years but I always knew when I needed to go back on Prednisone. I was just wondering if stiffness of hips and hampers smooth gait is a result of years with PMR.
It could be - but it could also be due to the low back issues you mention. Whilst it never has impacted my gait in the past, my low back problems are beginning to stiffen my hips on occasions.
You know, it would be at the very least *interesting* to see what would happen if you were given a few days of a reasonable dose of pred. What if you found the walking became noticeably easier and more comfortable? As you will be out of condition I wouldn't expect perfection and the ability to go far, but alleviation of that rather suggestive symptom would point to lingering PMR.
I did know that one comment the doctor made was that, "This is how your PMR started." I had hip bursitis, pseudogout and another skin disease that is an autoimmune disorder before being diagnosed with PMR. I am to have another SED test in three weeks and we see what happens. In the meantime I am having acupuncture for hip bursitis. No medication only creams. Thanks for pointing out to me your comment.
Sorry you are not doing so well. Have they offered you any treatment for the bursitis. I had good results from steroid injections but only under ultrasound or xray guidance. The ones at the GPs didn’t work at all.
You are right. The in-office injection did not work at all. I had been waiting ten weeks for the x-ray guided injection (I am in California and have a Medi-care HMO which is terrible). In the meantime it seems to be improving on its own with no medication just rest, TENS unit, heating pad, and Voltaren cream. Maybe by the time I get the appointment I won't need it.
What stands out to me is that it is improving with rest. Would that mean it worsens with activity. I would try to resume some activity so you can get the injection if needed.
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