I am just over 2 years into my PMR story and am down to 4mg. Prednisone as well as 300mg. Plaquenil. Lots of up’s and downs but trying to stay positive because I have been able to cope fairly well until this last month.
I started feeling a small aching pain at the back of my left knee about a month ago which got a little more sore everyday until now I have extreme pain in the knee and constant ache all down my calf with noticable fluid buildup just below the knee.
I have had an x-ray and ultrasound in the past week and the results were some osteoporosis in the knee and bursitis with a confirmed fluid sac.
The doctor has recommended I see an orthopedic specialist and so I am now on a waiting list.
In the meantime the pain is now borderline unbearable and I have no idea how to treat it without taking a lot of painkillers that I have been told to avoid because of the Prednisone and Plaquenil. I have also been told this latest development is not related to PMR even though it is clearly an inflammation development that I have read people with autoimmune disorders can be prone to?
Not sure what to do next and after a very short walk today in an effort to get some exercise I am completely unable to walk this evening!
Any help or suggestions would be so appreciated as always my friends.
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fondofforest
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I had dreadful pain in my hip for which I took Tramadol. I did not take NSAIDs though as they are contradictory with Pred. Have you tried Tylenol? You can check if you can take drugs together at webmd.com/interaction-check...
Sounds to me as if you have reached a stage where waiting list is not where you should be - was the referral routine or urgent? I would get back to your GP and emphasise you are now next to immobile. Don't gloss over the situation and put a brave face on - gets you nowhere!
Thanks so much. That is where I am as well I will give it until after the weekend and if there is no improvement I will definitely call my GP and ask to see a specialist sooner!
Absolutely, if only we all had you to advocate for us. You are right though I have to be much less submissive in my dealings with all these medical professionals.
The steroid you have been prescribed is probably not enough to dampen your pain. Limiting your activity should help. And increasing your dose. It’s very difficult . Good luck.
my mum had bursitis but only that. She was told movement would help and it was suggested she walk in a swimming pool. I think the resistance and the support of the water helps.
I have troachanteric (hip area) bursitis. I am on time release Tranadol & Buphrenorphine patches (high dose). The pain from my bursitis still breaks through those & it’s painful to walk. I find the only thing that helps is steroid injections…but they wear off after a couple of months. I find it’s worse in colder weather, the change in England this week is noticeably cooler, & I’m suffering. If you can afford it, I’d pay for first appointment, then transfer to NHS. But otherwise, as PMRPro says, tell your Dr you can’t walk, & get seen quickly! Good luck.
I developed bursitis in my right foot in 2021, fondofforest, it was unbelievably painful, but only started to hurt if I walked a few miles. Eventually I had a steroid injection, but by that time I'd started to have severe hip pain, so I couldn't walk far enough to decide whether it had worked! The hip pain was initially diagnosed as PMR, which they then changed to Spondyloarthropathy, for which I take prenisolone. Presumably the pred has taken care of the bursitis for the last three years. Until now! Last week I had been doing a large amount of walking on and off for a couple of days. Cue return of Bursitis pain. I have been wondering whether another steroid injection was likely to be effective on top of the pred. I take 5mg plus 200mg Hydroxychloroquine (Plaquenil). There's not a big urgency for me, due to the pain only starting when I walk a long way, so I may wait until I see the rheumy in a few months. Good luck with finding something to relieve the pain. It's excruciating isn't it?!
I am on almost identical meds! Currently 4mg prednisone and 200mg Hydroxychloroquine.
My rheumatologist would really like me to get up to 300mg of the Hydroxychloroquine and I am reluctant of course. The treatments for some of these ailments are so intimidating they add to the stress of the illness themselves Thanks so much for your response I really do appreciate it’
I tried 4mg last year but it didn't work out. Going to try a very slow taper to 4.5mg in a couple of months. In June I dropped from 300mg to 200mg Hydroxychloroquine. My rheumy says that its a dmard which calms the system and is particularly beneficial for people with a cardiovascular history. However, it can cause sudden and severe eye problems, and PMRpro has had things to say about that in the past. I don't think it's a drug that they want you to take forever, hence mine being reduced. The maximum dose that you are allowed depends on your weight. Good luck with your knee.
It is fine if you get your eyes checked frequently but a lot of doctors are a bit laid back about it when after a few years nothing has happened - but it can be a very late and very sudden consequence.
Thanks for this reminder. My rheumatologist definitely knows and has told me about the possible eye problem and therefore my unwillingness to raise the dose. Everything is like a juggling act isn’t it!
It is - but not only for PMR. I had atrial fibrillation, sorted with an ablation but when I had a bisphosphonate infusion it triggered atrial tachycardia! So now I have to fiddle about with the medication to find what works best!! Discussed with the ephysiologist today and she told me to see how I get on. But I like doctors like that
I get a thorough check every year, and pay a bit extra for a more detailed OCT scan. Also have a 6 monthly check for contact lenses. I see the main man for that and he knows about the Hydroxychloroquine, so always has a good look around. After 5 years I have to go to the hospital for the annual check. I do worry about taking them from time to time, but another medical matter generally takes over (was in A&E until nearly 1am this morning with OH)! As you say, a juggling act.
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