After reading all blogs about what others have experienced on Prednisone I have many side effects. Blurry eyes, bruising and now a bladder infection that goes away while on antibiotics but returns 36 after discontinuing. My Rheumatologist and I have agreed to taper at a faster rate due to all the side effects. He says if I can keep the pain at bay with Tylenol then let’s taper a mg every two weeks! I know from reading all the tapering questions and answers this is quick but the side effects are much more concerning at this point. My question is I wake up with neck pain and shoulder pain but it goes away after I take my 8 mg of prednisone by the afternoon and stays gone until morning again. Will this be the point I return if the pain gets worse as I taper or will it eventually resolve with Accupuncture and excercise! Anybody experienced this while tapering. I know from many people I’ve talked to that pain comes and goes and for some eventually stays gone. Wishful thinking I’m sure! Thanks for all your wonderful responses it truly does help!
Aches and Pains and tapering : After reading all... - PMRGCAuk
Aches and Pains and tapering
Two things occurred to me that might help you as they’ve helped me. Mannose - D seems to do as much for my repeated UTI’s as any antibiotic. The other thing is the neck and shoulder pain. Mine was solved by changing to a low, firm pillow because it seemed to be linked to an arthritic problem that was flaring as I lowered my Prednisalone dose? I hope these things ease your pain too.
Thanks so much Sheffield Jane!
D mannose is great stuff.
I have heard and read many times that cranberry juice is good for utis. Good luck!
SheffieldJane's pillow tip is sound.
I found gentle hot stone massage a help-mainly due to its relaxing effect. The therapist asked questions and noted my replies at the initial consultation which was reassuring and made me feel that she would treat me as an individual.
Have a look at this for other people's views:
I think that your blurry eyes might improve without you having to get all the way down to zero pred.
Pred affected my eyesight throughout but it was an ever changing situation, with blurriness being the main issue as well as dry eye. My optician wasn’t surprised and said it was par for the course because of the dose related changes that affect the lens. The problem was that because it kept changing it would have meant repeated new glasses which he didn’t recommend because it even changed on a daily basis, especially if I had eaten salt. He checked my pressures 12 weekly and kept an eye on my steroid induced mild cataracts. The main difficulty was going from one depth of field to another and moving object because the adjustment was too slow. It resolved as the dose dropped. My GCA blurriness was different and I had intermittent black spots or just grey in my whole field of vision. I wouldn’t have reduced my Pred for the above inconvenience because it’s a temporary side effect while I was taking a necessary medication.
Bladder infections and irritation went with taking D Mannose, cutting down my calcium supplements and making sure my urine was always dilute. I also had to do pelvic floor exercises religiously to prevent a mild prolapse (from Pred weakened muscles and inattention) from preventing full emptying of my bladder. The can lead to chronic infection.
The bruises are again normal and go with dose, however, I was still bruising for some months after stopping Pred but my skin did recover. Some Pred effects don’t all just disappear overnight because the dose has reduced; it can take time.
I am concerned at the solution, to reduce fast putting you at risk of a flare (you’d have no option but to go back up to higher doses) and eventually risking adrenal crisis once below 10mg. Low adrenal function really does rain on one’s parade and can be much more debilitating than the side effects you list here.
Did the doctor suggest this new regime on the basis of your distress or that they really thought these issues were too bad for clinical reasons and the risks I’ve just stated are worth it?
Snazzy thanks for all the info. D- Mannose is on order and currently on hyperex prescribed by urogynecologist. Eyes have been checked twice in 6 months. I’m sure because of my whining about the side effects the rheumatologist is going down quicker than we started. I am doing 1 mg per 3 weeks. I so appreciate all of your input and experience with all of this. It helps alleviate some of the fears!
1mg per 3 weeks is concerning. You might get away with it, but the consequences of not are not worth to my mind. If you do insist on it, do read the information on adrenal function in the FAQ’s so that you are knowledgeable about the under 10mg phase and potential problems.
It can feel like Pred effects are way too bad for something that doesn’t feel life threatening. GCA potentially is (aneurysms, stroke) along with blindness. If it was something like cancer that has a terrible narrative that goes with it, we don’t question it. Unfortunately, treatment for PMR/GCA can seem like a lifestyle choice by comparison which can make the journey seem more unacceptable.
Is this just the 10 mg range?...I have been on high dose pred for 4 months....60mg down to 40....it's been up and down and back up....now I am at 40mg and starting Actemra in a couple days....the strange thing is Rheumatologist wants me to drop 10 mg a week until I get to 20....
My rheumatologist would tell you to wait a few weeks on Actemra - it doesn't always work immediately.
On higher doses you do drop in larger chunks but the point is in your case, the original plan didn’t work so they might want to slow it down in YOUR case. What happens when you drop that makes you have to go back up? Not Pred withdrawal was it?
I don't think so, it was the GCA, increased headache, and bloodwork said inflammation was still there....so I got down as low as 30 and they would bump me back up. I am on 40 mg now and in 2 days I start 30mg and also get my first Actemra dose.....then next week he wants me to drop to 20....after that, I imagine the weaning off pred., will be slower.....Actemra will be a weekly injection for who knows how long?...I hear people are on it for 6 months to years....some results are terrible, some are good....different for everyone.
I would be negotiating for smaller decreases until the Actemra has got into your symptom -bearing in mind previous attempts.
So plan for 40-35-30-25-20 initially -you may be able to speed up once Actemra is working…but don’t let doctors be too gung ho at the start!
Hi - been looking at D-Mannose as never heard of it - but there are powders, tabs and capsules and varying doses, its a minefield - how does one decide which is best?
This should answer all your questions:
toputiforever.com/prevention/d-mannose/
I use capsules for convenience as I only use them when I have acute symptoms but they are rather expensive here in Italy!!
Thanks for this but I do not seem to be able to open that link?
No me neither - even copying & pasting didn't work...
Try this
liveutifree.com/d-mannose-f...
And this is a more carefully copied version of the other!!!!!
stoputiforever.com/preventi...
😊
It is all very well reducing faster because of perceived pred problems. However - at 8mg you are just at the threshold of needing adrenal function to wake up and top up the dose of pred as it gets lower. Reducing at speed won't allow the adrenal set-up time to readjust and you are likely to experience adrenal insufficiency side effects - and if you go too low too fast there is a real risk of an adrenal crisis. You may end up with worse problems than what you perceive you have at present.
Blurred vision as you reduce pred may well be dry eyes - I should know better but I have been surprised how much eye drops have improved things. I agree with everything Snazzy has mentioned - been there, done that for every single item!
Thanks as always for your sound wisdom. I’m trying to hang in with the slow taper but it seems my body has one problem after the other. I don’t want a relapse to be sure but I do want off this drug. Like everyone I’m sure. 😉
Everyone wants to get off pred - but you will need pred as long as the disease is active, and enough pred to manage the inflammation. Even slightly too low a dose will mean the left-over inflammation will build up slowly over time and you will be back where you started. Better stick with a low dose that works than risk ending back at the beginning.
Personally I would slow down after 7mg anyway. If you have the same side effects I had from my adrenal glands you will be zombie like!
'Weareallmutants' posted this a little while ago 😉:
healthunlocked.com/pmrgcauk...
-and this:
healthunlocked.com/pmrgcauk...
Well that was fun! Thanks at least humor cannot be taken from us!😂
Hi Flygirl65. I wanted to say go slow because I was.pushed.hard to reduce and had no real understanding of the way PMR rolls. I went to fast and then ended up riding a roller coaster.if doses up and down and all of the symptoms getting worse and worse. The other problem is in the end you take more pred than if you slowed the reduction and let the symptoms be your I your guide. Go by the.symptoms, not the schedule. Your neck pain.is related to PMR I think so look at that thru that lense. PRED is a great and horrible drug. I have been so debilitated by PMR since the spring I am not really functioning very much. I hate the side effects. But I know I don't have a choice. I am about to start Actemra which really scares me...but if it helps or works well and I can tolerate it...amen. It's a good thing. So just please consider slowing things a bit so you can get a good outcome. You don't want the inflmation to sneak up on you. Take good care of yourself. Be well.
Thank You for your advice. Prednisone tapering is all over the place from .5 mg every 3-7 days to 1 mg a month. How do you truly know when the pain is PMR related or prednisone tapering related? When did you know to taper down? The pain is always there but comes and goes. I can tolerate the pain as long as it doesn’t get debilitating. I’m so grateful for all the experiences on this site!
There is a whole dollop about tapering in the FAQs - including the reasons for tiny steps, not too close together and the differences.
It is hard...I kept asking questions hete trying to figure that out. I have several other autoimmune conditions that cause....wait for it...pain, fatigue, brain fog. But after my initial diagnosis where my worst symptom was my hands, the others faded to the background at that point it was hard to know what was what. Then after being on the pred the other symptoms became "louder" and I was able to clearly identify them as PMR. Neck, shoulders, upper arms, hip area, lower back, thighs. It was a very different type of pain. PMR became very debilitating. The fatigue is extreme. I feel sick and out of it. So as I started the pred and reducing it I would immediately feel sick and shakey and the pain would return some but after a few days it would improve. The problem was I was.pushed to reduce at times when I didn't feel great. Or a few times I felt like I was getting somewhere and I was pushed and then ended up with severe symptoms and had to go back up. I focused on the specific symptoms and pain points of PMR. I was having lower back spasms after doing nothing but standing. My neck was sore and tight. I can not lift my arms up...hard to do things. So to answer your question focus on those specific symptoms that are your PMR symptoms. I hope this makes sense. One thing also showed me a little is a lot is when 20 didn't work; 21 - no, 21.5 - no. 22 - no....22.5 mg did. That was a while ago. I got down to 17.5. Today I am on 23.5. Doing ok. Will start Actemra at some point. They think my RA might be involved. It's been quiet since 2015.
I learned from PMRpro and DL that I could be going through withdrawal when I reduced my pred dose. So I wait a few days to see what happens. That's when I hope I feel less tired and shakey.and pray the pain does reduce some in my PMR spots. I hope this helps some. It's like learning a language....at some point it clicks so it takes less emotional energy to figure it out. Hang in.
You can say that again! 😆
Have you tried eye drops for blurry eyes and cranberry juice for uti?
yes to both!
my optician recommended Hyco san eye drops for the dry eyes causing blurryness. They make a big difference.
If only Tylenol worked for PMR pain 😳
Hi Flygirl65 all I can say is be very cautious. My GP went down this route with me last year with 1mg every 2 weeks and I became very poorly very quickly. I had GI problems, no appetite, nausea and dramatic weight loss and muscle loss. I was so upset and scared I had a CT colonoscopy and other tests but it was all put down to the speed of the taper. I paid to see a rheumatologist and he put me back on 5mg daily with a taper of 1mg every 6 weeks. I got down to 1mg but relapsed now I am back on 5mg with 1mg taper every 2 months.
thank you for the warning. I am sure that was not easy for you. I’m so looking forward to the end of this journey but I agree I’d rather be safe than sorry!
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