Hello lovely people. I am continuing downwards from 60mg. Currently just reduced to 8.5 from 9. I have two possible side effects I am wondering about - the bad is the return of pelvic pain and slight difficulty getting out of bed because of it. It isn't too bad at the moment just reminds me of the old days when I had over done it riding horses! The other is a plus and that is I seem to be sleeping much better. I didn't wake this morning until 9.20! I was awake for about half an hour just before 5 when I took my NDT thyroid meds. I think the rain stopped my dogs waking me up!
So are these prednisolone reduction related?
Another observation during reduction has been that my right eye seems to take a while to adjust each time and in the last couple of months seems worse. This eye has cataracts in and I have been concerned that things have been getting worse so I took up my routine eye appointment last week (due to Covid I have been avoiding as much going out as poss). Apparently the cataracts haven't increased in size since last year BUT the prescription needs changing - that was a huge relief although I haven't had to change prescriptions for about four years.
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Pippah45
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Keep a watch on the pelvic pain. If you hadn't done anything strenuous that may have caused it you may have to re-think dose/get advice from your GP or rheumatologist. Similarly the eye issue. If the adjustment doesn't resolve with your new prescription further investigations should be made. Don't leave it if that is the case. After a period of gradually worsening blurring that I largely ignored I developed sixth nerve palsy (double vision) which is now resolved but required a prism lens on my glasses.
I have slept much better with lowering Pred. Wonderful to wake up feeling refreshed.
Thank you very much for the reply - as ever wonderful advice from this forum.
I was far less impressed by this optician than the one I saw in the New Year - she was clued up about GCA and PMR. This one seemed to think I might be off treatment for PMR - not at all sure you can separate the two?!! Only about 19 months into treatment!
Generally, an optician is trained to detect abnormalities like cataracts and glaucoma. Other conditions are investigated by practitioners like ophthalmologists . Did the optician you saw have anything to say about your problem with adjustment? She isn't qualified to pass an opinion on coming off Pred if she has little or no knowledge of PMR/GCA.
I hope your problem is resolved with the new glasses.
I didn't really say much about the dose reduction and it was a he this time who didn't seem to know much about prednisolone or PMR - I felt he didn't know about GCA either but I could be wrong. He just kind of brushed it off as needing a new prescription for that eye. I am happy to go along with it being age related - GCA gives a certain amount of anxiety to changes!
I'm sorry Pippa45, I didn't make myself clear 🙁. I wasn't referring to dose reduction but to your right eye adjusting. I wouldn't bet on many opticians knowing much about PMR/GCA (apologies if I'm wrong). Your previous optician was a find!
They should do and many are better than GPs (though I admit that isn't difficult!!) If an optician looks at the retina then they may see effects of GCA causing AION (Anterior ischemic optic neuropathy (AION) is a sudden loss of vision due to an interruption of blood flow to the front (anterior) of the optic nerve, also known as the optic nerve head. The optic nerve's job is to carry visual information from the eye to the brain, which assembles this information into images.) which causes swelling and a pale appearance of the the area where the optic nerve joins the retina.
please may I ask you how long has it taken you to reduce from 60mg? Just wondering as I am on the same journey which started last Nov, now down to 15 mg pd. My vision is also impacted but am waiting to get an eye test as pred affects vision quite a bit. Also my eyes swell above the lids if the dose is reduced too quickly and this was a symptom of the GCA. Also my legs and arms swell up if the dose reduction is a bit too quick. Has anyone else had these symptoms? Many thanks
Hello Heron my journey is probably not all that typical in that I started on 60mg March/April last year and then they decided I didn't have GCA - so I was off it by the end of May but after several consultations I was back on 50 in August as it was believed I now had PMR as well! My Rheumy was advising too fast a reduction and with the help of this forum I took charge! I can't remember the exact dosages but when I got to 30 I went down by 2.5 for four weeks and at 20 I was going down in 1s about every 4 weeks. A few weeks ago I got to 10 and am now trying 9.5. My sister on a very similar journey seems to be rushing and regretting. I was one of those people who never dreamt of going on steroids and was really pretty frightened of the idea but the evils of being without it finally dawned on me. I met someone with PMR who was diagnosed after a very long time of suffering and had a dreadful yoyo time. She was very severely affected and had very poor quality of life for several years so it has dawned on me that I have a decent quality of life and I think the fear about steroids is somewhat misplaced. I found Kate Gilbert's book very helpful and full of good sense. My sister hadn't twigged that PMR (never mind GCA) has an average life span of what is it? 4 years or so - and therefore rushing to get off the pills isn't going to work! I hope this has helped although I have been rather vague on the dosages but have just checked the card I carry and it's roughly right. If I can help any more please let me know and Good Luck.
Never having had any vision changes due to age until fairly recently I'd wondered about a feeling my eyes are focussing on different things - maybe it is the same as yours. I'd just put it down to being older!
What sort of pelvic pain or where? I've just had pelvic pain that was due to a urinary tract infection - very "is it? isn't it" the last couple of weeks but confirmed itself on Friday. Held it almost at bay with D-mannose over the weekend but the antibiotic on Monday night did the trick. I feel a LOT better ... I struggle to recognise UTIs on pred - it reduces the symptoms a lot.
I don't think I had done anything to cause the pelvic pain. As I said it felt like riding a horse far too far and too fast and I haven't done that in many years! Interesting about the UTIs I haven't had one of those for many many years - I had heard that is another of the joys of Prednisolone! I will watch out for it getting worse. I do hope it's only the dose reduction. It's early days to pronounce on that.
OH yes I am very grateful indeed that I owe my eyesight to Prednisolone etc. etc. The downsides are small in comparison although I do think it would be good to understand most of them!
Hi Pippah, u must be my twin! PMR since 22 April 2018. Literally Crippled in agony...
Finally Diagnosed 28 August 2019 by a Private Rheumy, put me on 20mg Pred, now using DSNS method, reduced down to 9mg, slight morning bi lateral hip pain , (used to horse ride,) Best sleeps I've ever had. Droopy eye lids , right one worst... literally overnight two white stretchy folds of skin hanging down like flaps over the outer corners of my eyes... thought I'd got Bell's Palsy!
Grateful to Pred reducing PMR symptoms, but catalogue of Pred side affects have been catastrophic, and several life threatening. e.g.
I began 20 mg Pred 28 August 2019, I had three anaphylactic shocks during September: throat and tongue swelled could not breath, so now carry epi pen, inhaler, and antihistamines. Addenbrooks could not find cause of allergic reaction, (isochromatic) but I'm convinced steroids caused this allergic reaction. It's well documented reaction. Ok now.
Jan 2020 multiple clots on right lung, could not breath, hospital 3 days. you are 8 times more likely to have a clot if you have PMR or are on Steroids.
September 2020 to hospital ambulance severe lung pain on intake of breath, deep chest infection/pneumonia. Steroids supress immune system, fourth chest infection this year, this one most severe. I'm ok now .
Steroid induced pre diabetes... my sugar levels always been normal but spiked in March. Been on a virtual pre diabetic course and now back to normal....
It's a rollercoaster every day, trying to discover if the latest mountain to climb is a PMR symptom or Pred induced. I have a list of other symptoms I've experienced enroute, literally too many to mention. But am grateful for this forum and to share this bumpy path with so many wonderful caring people who share their knowledge and experience with us....
I know there's a light at the end of the tunnel, I just hope it's not an on coming train! Thanks for sharing, good luck and best wishes, Sooz
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The downsides really are few and far between in comparison.
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