As you all may know, Prednisone and I haven't had the best relationship. Since I was diagnosed with GCA with my biopsy Jan 2, 2015, I've pretty much hit every side effect that you can have. This trend has continued now that I've started tapering. I'm on 45mg now and have developed some new and weird symptoms that I'd like your opinion on.
First one to pop up were a series of tiny red spots on my legs, which then spread to my arms and torso. They vary in size but they're no bigger than 4mm (roughly a bit larger than 1/8in) and they're flat. They don't itch. At first I thought they might be some sort of skin infection, so i used an antibacterial soap but that did absolutely nothing.
I've also had extra swelling around my eyes and my eyes are running day and night.
I feel nauseous at times, but haven't thrown up anything except this morning I threw up my prednisone (and rightly so!) I took it again and it stayed down.
I'm still on a mostly liquid diet (protein smoothy that I make) and I eat one small meal at dinner ( this is due to the heartburn caused by the prednisone). At the moment I now have what I'd call borderline diarrhea (not quite diarrhea but almost). This started when I moved from 50mg to 45 mg. diet hasn't changed. still the same lovely protein smooties.
I've had no symptoms of my GCA (yay!) I'm wondering if this is just "normal" for some of us tapering from prednisone or whether I need to see the doc.
Good to see you're starting to taper but your other symptoms are lousy.
I don't have GCA so can't comment on any of that but the one thing that came to my attention was the watering eyes. When they were doing the tests for GCA you must have had your pressures done. If so, were they high? I had been under specialist care overseeing high eye pressures (pre glaucoma) for almost 10 years pre PMR. They were high but not enought that he wanted me on drops because of side effects (oh!!! that again) When I started prednisone for PMR I had to go on them right away because it really elevated the pressures. My eyes were always watering.
Just a thought but might be worth checking out.
Hope you're feeling much better very soon. Protein shakes must get pretty boring
everyone is different, I'm tapering again this week and dreading it as last time I had awful sleepless nights for the first 5 days plus mood swings that my husband nearly left home over!! Hahahaha!! But he lives to tell the tale!
Hi Lisa, I have the red spot problem, mainly on my arms but also on my legs. I must admit in the last month it seems to have improved no end, I have been cutting back on the pred though. Last year it was awful and I looked as if I had been in a fight with the cat which meant covering my arms. My GP did not know what it was, so blamed the pred! I have found using creams actually make it worse and leaving it be is a better option. I never scratch any itches as that seems to make it worse too.
Hi lisa, your latest taper sounds as if everything is going great! Some of us lucky ones don't suffer any symptoms if GCAa/PMR when tapering until if course we reach a dosage which isn't quite enough to cover the level if inflamation and we then experience a flare. But, well done for now, you're doing great.
as for the spots, what's that all about? I'm sorry but I can't help you with that one. Have you looked up the huge and very long list of prednisolone side effects, maybe these little spots could be one of them. Then there's also the possibility that these spots could be a reaction to the prednisolone along with other drugs you might be taking, just an idea.
can't help you with the swollen and runny eye problem or the nauseous or the diarrhoea problem, hell lisa today I'm of no help to you at all!!
hopefully others with more experience will answer you soon, but well done on the tapering.
thanks. they checked all my blood pressures and they're all normal to low. I also check at home and it's low. I had my eyes checked at the end of february and they did a glaucoma check-nothing.
We are so close together on timing..I started prednisone on March 4. I am also down to 45mgs for two weeks and then move to 40. Who does not hate this drug but it probably saved my vision and an aortic aneurysm. I have no red dots but my face is totally swollen and I notice every time I blink. Insomnia and being jittery and unbalanced are the worst. I sleep almost sitting up to control heartburn but that is improving with no carb😳/sugar diet. Wish we knew what your red dots were. Hang in there..ann11195
lovely. so you've had it for a year. well that makes me feel hopeful .
I guess I won't even bother to see the doc then. I'll wait til something else shows up (and it will, lol!) I emailed them (gp and rheumatolgist), but each shrugged and passed the buck. I did go in for my blood test today so I'll see what that shows.
yeah, I didn't even write about those. Poor hubby. he also has to deal with my almost 11 year old daughter's mood swings as she begins her early travels thru puberty. work is his refuge.
Several others seem to have had the purpura problem of red spots too. So it probably is the pred. At one point some of mine broke and bled, but that was only occassionally. Mine start a sort of bright reddy purpley colour and then slowly fade. I play a game to see which ones are new! I think my mind might be going too, must be the pred.
yes, I sleep sitting up. and omg my face, lol! completely unrecognizable. fortunately no one has said "omg you look completely hilarious!" My favorite is the rabbit-like dewlap I have on my neck and the newly developing bald spot in the center of my head. Still, I wear my body mutilations from prednisone proudly. Stupid drug. I shall be victorious in the end. it may try to take me down, but it will not win. I may look particulary unattractive for a long period of time, like bald, spotted and with a dewlap, but hey, at least I have 9 full fingers and most of my vision, so take that Prednisone!
my family and I joked about playing "connect the dots" with them. so they're just tiny little blood spots...hmmm...that makes sense. guess I'll do a big search and see what comes up. I think prednisone is becoming like my mom, a handy thing to blame everything thing on :D. Of course it could be the gabapentin, but then again, I wouldn't need the gabapentin if I weren't taking the prednisone...
There could be a couple of causes for your little red spots: 1) steroids can cause bleeding within the skin due to weakening of the skin tissue; and 2) GCA comes under the umbrella of vasculitis which in itself can cause purpura. So a double whammy of causes unfortunately! However, don't despair because as your inflammation gets more and more under control and you reduce the steroid dose further, they will disappear. Meanwhile, as steroids can thin the skin, use a good natural moisturiser to help against the dry skin side effect - Doublebase is excellent.
With regard to the diarrhea, are you taking a PPI such as Omeprazole or Lansoprazole alongside the steroids - if so, that could be the cause. I know 'cos I've been there and both pills had to be stopped almost as soon as they started!
At least it sounds as though you've successfully managed a reduction to 45mg, so heading in the right direction - well done you!
I'm keeping them crossed. Just remember, slowly, slowly catchy monkey! Never reduce if you're feeling out of sorts and never reduce even if your bloods are good but you feel as if the current dose still has a bit more work to doing keeping the existing levels of inflamation under control. I stay on each dose for 6 weeks but I know that some members only stay on each dose for a month, but I would never reduce quicker than that. I'll be thinking if you. Good luck, christina
i just want to say I love your humor and attitude. It seems no matter what you're thrown you can joke about it. I'm sure you have your "days" like the rest of us but your posts make me smile (most of them😉) Humor is the best medicine after all!!
yes, I'm taking pantoprazole and ranitidine for heartburn. I'm pretty sure diarrhea is a side effect of every medication I take . I stopped the pantoprazole when all this happened in the hope it was that one (the most recent) but no luck.
I will try to find the doublebase moisturizer. I have been using Cerave (the thick stuff in the jar), plus I take a bath in water with a couple of tablespoons of aveeno oatmeal. I use neosporins eczema daily essentials body wash for soap. then again I live in Colorado where there is absolutely no air moisture.
Thanks, but who can't laugh? I mean even my GP was laughing with my husband about what a mess I was and that's just wrong. It's like I'm a walking billboard for "Prednisone Side Effects." And I have a 10 year old mocking me every day so, yeah, it does not pay to take yourself seriously in my house. I'm also pretty sure yesterday's discussion about my digestive tract became today's "circle share" in class. I'll find out when I pick her up today, and we'll have another "discussion" about what we keep private and what we can share with the public. Our 237th discussion this year...
well, I've been moving at 5mg every 2 wks. I started from 80mg (I have GCA). But I've hit a ton of physical problems on the prednisone and doc wanted 10mg jumps. I said no, I wanted to go at least this slowly. I'm really falling apart on the medication. I could list all the side effects -it's pretty bleak. my list has what i think is roughly 90+ symptoms. I've only had 48 up to now, but we're still counting.
I'd like to get down to 30 or so and then really slow down. I don't think I'll have anything left if don't get down to a slightly lower dose. it's a horrible balance between the destruction of my body by the prednisone and the destruction of my body by the tapering. I was hit with corticosteroid induced myopathy and that was only the beginning.
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. I stopped the pantoprazole when all this happened in the hope it was that one (the most recent) but no luck.