New member and have been diagnosed with PMR. Been suffering for 3 years with no diagnosis. Tried all sorts of medication but only a 20mg daily dose took the pain away. Started in my neck..then shoulder blades, shoulder joints.. elbows.. hips groin... after a lot of back and forwards.. and trials with biological... back on the prednisolone at 15mg... anyone know of advice about this level being ok with the COVID virus around? It was suggested to drop to 5mg but the pains just return at that level.
Also anyone with GCA symptoms... keen to know what the blurred vision is like... I have good vision but I have these what look like very thin waves lines when I stare at the ceiling or “blockages” when reading text etc... is this what others experience?
You should continue as normal with your medication - there is no point trying to cut it and returning to the state you were pre-pred and that in itself would pose problems if you were to become infected. Stay at home and avoid others - by far the safest approach!
Adlimubab and sekinubab...excuse spelling 😊.... had no affect. was due to be on 25mg for6 weeks but with the virus was told the ideal was 5mg.. trouble is 5mg allows pain in joints to come back!
Did they start off thinking it was RA or psoriatic arthritis? And changed their minds when the biologics didn't work? Because if they were confident this is a PMR diagnosis I really cannot understand why they would have used Humira/adalimumab or secukinumab since neither of them are likely to have any effect. Humira is an anti-TNF monoclonal antibody and secukinumab works on the IL-17 cytokine. Use of anti-TNF biologics is specifically warned against in the guidelines in PMR as having no effect and possible damaging effects. There is little evidence that IL-17 is involved in PMR although it may have a role in some cases of GCA, but not all.
However - having decided that it is PMR either you take enough pred or it isn't worth taking any. Does 10mg work? Though I don't recommend messing about with the dose too much - that just tends to make it more difficult later.
Yes .. they initially thought it was Ankylosing Spondylitis... then Psoriasis Arthritis.. and when the biological didn’t work they put me back on prednisolone saying PMR looked likely. 10mg maybe better yes 15mg definitely... just that the Rheumatologist said in this COVID situation 5mg would be ideal in terms of immune system and Covid
He can't know - there is no ideal. There is an argument that you might be more likely to catch it - you should be at home anyway because even young, healthy, non-medication people catch it at the drop of a hat!!! The risk is likely to be more in management. And the biologics they were so keen to put you on are far riskier than 15mg of pred in terms of immune system and Covid-19.
Funny - I get the very real impression that they feel PMR is beneath them - my rheumy was desperate to make it one of those two options even when all the imaging said no. Didn't intend letting me have anything fancier than sulphasalazine though.
Hi ... yes I got that feeling .. the GP suggested PMR and put me on prednisolone but referred me to rheumatologist.. who pushed the AS side and various medication but these had no affect... causing additional problems.. happy I’m on prednisolone now and today decided to go up to 10mg as I hope this will take a lot of pain away... as it’s really difficult to cope on5mg.
Visual issues can come in all sorts of sizes and varieties.
In my case (extreme unfortunately) my blurred vision was looking through a very thick dirty net curtain - just “seeing” vague outlines.
I would hazard a guess that yours are not GCA, but might be wise to get things checked when you can, obviously if they increase then should be treated as a medical emergency.,
My vision wasn’t blurred as such. In the run up to GCA is was getting nighttime greying out of vision in my right eye when I went for a wee but it resolved in minutes once I got back to bed. Sometimes I got flashes of light at night like little sparks behind my eyelids. I also got occasional black spots in my vision when exercising hard. In the last hours my peripheral vision became smaller and smaller until it seemed like I was looking down a tube. Once on Pred my vision did get blurry from the effects of it. Some people get double vision or patches that go blank and various other things, so there’s no set pattern.
You need to get your eyes checked as soon as it is practically possible to rule out other conditions that can be problematic like macular issues or raised eye pressures from the Pred.
Thanks I do get double vision when at a football match and driving it’s again a funny vision but clear..have had a check a moth or so ago and they said was healthy
Sounds like they are times when your eyes are fixed at at long distance. Perhaps ring up an optician just to get some suggestions in the meantime about what might cause that aberration.
That was a very helpful and comprehensive post SnazzyD. I think I’ve been ignoring visual effects particularly in the dark. I have an untreated diagnosis of suspected Glaucoma and Cataracts. Ophthalmologist appointment cancelled last month, due to CV.
Yes agree thank you. I have these guys patches or lines that I can see when looking at light colours but my vision itself is ok with the exception that these lines or patches sometimes block letters when reading on phone or lap top.
Having had untreated PMR for so long, you need to be especially alert for Giant Cell Arteritis. Key symptoms include double vision and other visual effects, a new headache, pain in the jaw when chewing. Are you being referred to a Rheumatologist?
However did you cope with the pain and disability of PMR - poor you. Don’t let GCA catch you out, the consequences are much more severe, your eyesight to mention one. The diseases are closely related. Good luck!
Thanks... it was a night mare... I would say I had 3 to 4 months in the 3 years when I was pain free when on prednisolone! Suffering now as only on 5mg and pains are back... thanks for info on GCA will follow up on this with rheumatologist
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That isn't right. I am not saying pain free is always achievable but pain that effects quality of life in my experience is due to pred bring too low. You have had a weird journey haven't you. Best to take enough pred to manage symptoms as much as possible. I presume they have kept an eye on your hba1c during all this? High blood sugar can do alsorts to my eyes. If you aren't doing a low carb diet then try it out, it may help pain and side effects. If you see a good optician and ask them to check for GCA in your eyes at least your mind would be put at rest. There should be some available.
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Thanks will look at my diet and have decided to increase to 10mg...which from previous use I was ok with. Yes will look at getting the GCA investigation under way
Glad you have a diagnoses and appropriate medication. Personally, I wouldn't worry about the threat of COVID-19 in connection with the dose of prednisone. I'm at 14 mg right following a flare and will not reduce until my body tells me I'm ready.
I would also suggest that since it took so long to get the diagnosis you should consider staying at the original dose that relieved the symptoms for at least a month. When you do reduce do so at no more than 10%, the cardinal rule of reducing prednisone.
Blurry vision was with me for a long time due to dry eye caused by prednisone. I remember getting worried about GCA more than once. Moisturizing eye drops helped. I also had a great deal of fluctuation in my eye glass prescriptions, which I ignored due to the cost of getting new glasses every six months. The variations were not that great and did eventually settle down.
Thanks... I’m staying at home only been out twice since lock down but didn’t get out of car .. so yes am moving to a higher dose so pain free going to move to 10mg
Strangely enough since i started pred for pmr 4 years ago i have been able to read small print and generally read more easily than i have in my whole life. No need for reading glasses anymore. The only positive thing for me. At 5mg tried 4mg last week and had another flare. Took 8mg straight away and then back to 5mg. Will try 4.5 again in a month or so.
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