I was directed over here from the Lupus UK website in the hope I can get a picture of some of the pros and cons people have found with prednisone.
I am currently on 20mg methotrexate injections for lupus but still suffering joint flares predominantly due to photosensitivity. Funnily enough the main ongoing problems are my hips and shoulders and I think my neck is starting to join in so from what I've read some definite similarities going on. My photodermatology consultants feel that methotrexate is not getting me sufficiently under control and I should start looking at other options.
I've always responded well to depomedrone injections and prednisone is one of the options that I've been fighting against for a long time but mainly due to lack of knowledge but I'm now wondering if it might be time to consider it.
My biggest problems with oral meds has been the effect on my stomach and side effects making them unbearable. If anyone can let me know some of the pros and cons and their own experience with prednisone it would be much appreciated to help me be better educated on the options before I discuss it with rheumy in a couple of weeks.
And don't worry I know we are all different - I don't get a lot of the worst side effects with methotrexate injections for example - so it's not being used to make the decision but to help with some background so I'm better informed to discuss all of the options with my consultant to make the decision with her. Thanks
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Mifford
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Hi, I have been on 15mg prednisilone since 2nd Oct 2018 and i dont take any stomach protectors. The only side.effect i have suffered is weight gain but that is mainly down to me not having the willpower to stop eating rubbish when I feel like it. For me the benefits of pred outweigh the symptoms of pmr. Good luck.
Hi and welcome. Started with pred March 2016 increased to 60mg two months later when GCA joined the party, take pred after breakfast with milk never had any stomach problems and never taken any stomach protection. Pred is not the villain some people would have you believe but we are all different in the way we react. Nothing ventured nothing gained. All good wishes.
I agree with Yellowbluebell - for me, the benefits of pred outweigh the symptoms of PMR. I started on 15mg pred in July and within hours most of my pain had gone. The only con for me was the fuzzy-headedness or 'pred head', although that has more or less gone now that I'm down to 2mg (but technically, because I'm still on pred, I can blame my forgetfulness on 'pred head'!!).
I cut down on carbs, as advised here, and didn't have any probs with weight gain (in fact I lost some weight). I feel much better on a lower carb diet, so will probably continue even when I'm off pred.
Pred doesn't affect my stomach at all. I don't take omeprazole, but I do take a natural supplement, frutin (described as "natural acid relief").
Hope that helps! If you have any questions, please ask.
Wow thank you all so much. I cant take PPIs and the lupus gives me hideous acid so it's good to know that lots haven't had problems with this.
My methotrexate gives me fuzzy head already - I get bad headaches for 2 days then it's a bit like having a sinus head about to start all the time and feels pressured is the only way I can describe it.
So what are the main downsides? My doctor has very much left me feeling it should be the treatment of absolute last resort but I'm wondering if it's just because of hip problems in particular as I already have severe bursitis and slight bone spurs over both. I'm thinking repeated depo injections aren't much better on that front.
I get the weight gain but I am following slimming world and I think with effort I'd hope to manage that side. On depo I actually lose weight as I think it helps my thyroid maybe. Have people had a lot of problens with the face swelling? People I've met lately on steroids don't seem to suffer from this as obviously as they used to but whether they are just lucky or if this is less of a problem than it used to be? If it works it's a problem I think I could live with though.
Interesting to hear positive responses though as I've only usually seen people wanting to get off them or being negative.
Oh we have plenty of people who arrive refusing to even consider taking pred or desperate to get off it asap - but often once they try and realise they can live again they calm down.
The only way is to try. Can you take ranitidine instead of PPIs - does the same thing in a different way so fewer/different side effects?
Unfortunately not. We tried the entire 'prazole family and tried ranitidine and for some reason I get a really itchy eczema patch over my eye and they start to sting and swell. We have no idea why though as the only common ingredients have been in other meds without a problem. I used to be fine with operazole and it came out of the blue.
Indeed. It does seem to flare up when I'm not feeling well though so it could be that if a different treatment gets the flares under control that it is less of a problem but who knows.
I meant to say as well that the high blood sugar is interesting - I keep waking up in the night and first thing really shaky and I think it could be that my blood sugars are currently dropping overnight
I've had episodes like that in the past - most peculiar. But they don't seem related to anything in particular. They have been far less recently though.
I am just replying here to your allergy to omeprazole etc. Pred, as you mentioned, might suppress this reaction, in its role as an antidote to such sensitivities. Just a thought. I'll tell my pred story below.
Ah just looked and is it part of the ranitidine family? I can’t take those either unfortunately as the reaction was the same. The doctor’s won’t risk them now as I’m too reactive and they don’t know what it could spark. There’s also an antibiotic I can’t have either - I think it’s ciprofloxacin or cephalexin but can’t remember which (I have it written down somewhere). It made me so sick I couldn’t leave the bathroom for 3 hours and started hallucinating so that has big red warning signs come up now
You can have a coated version of pred, it does seem to protect your stomach so you do not need PPIs. Doctors do seem to be paranoid about steroids, then they let people live on anti depressants for years!
It really depends what sort of dose you are going to take. Higher doses tend to have more side effects. Some people have none at all. I seemed to have lots, but none were life threatening, such as dry, haystacky hair, fluid retention, sensitive teeth, sweats.... I had never taken any tablets bought over the counter, never had antibiotics, only had painkillers once about thirty years ago, so I don’t know if that had an effect, my body said
Darling don’t let negativity stop you trying what might be a wonderful option for you. If you can be on the lowest dose that gives you relief you will feel sooo much better xxxxx
Don’t worry - I do want to hear the good and bad so I know what the worst case would be but I had heard lots of bad things about methotrexate before I tried it but the hair loss etc haven’t happened to me. It’s good to know what to watch out for though and weigh up the pros and cons so I genuinely appreciate both views
I started on 20mg of pred May 1/18 and have slowly tapered down to 9mg. I really changed my diet (low carb, sugar, salt) and lost weight which helps combat some potential side effects. The only thing I’ve noticed is my skin is thinning and easily bruises, and at higher levels experienced mood swings. I’ve never had any stomach troubles as I take my dose with yoghurt or a banana. It is recommended you take calcium and vit D while on pred, and ironically it is my calcium supplement that irritates my stomach.
I was very fearful of pred when it was presented as the only real treatment for PMR. My response to this medication was immediate and addressed about 80% of my shoulder, hip, leg and knee pain/stiffness.
I would definitely take pred over the first 6 months when I was not yet diagnosed. Those were very dark, painful days!!
Your symptoms sound similar to PMR and I know auto immune conditions present in ways that seem to overlap or be similar. To get some relief, it might be worth it to try a sample run of pred.
Good luck trying to solve the disease management puzzle. As you say....we are all different, what works for some doesn’t for others.
I am on mega doses of vitamin d already as I have to block my skin from all light exposure because of the level of photosensitivity. It's also low due to my thyroid.
I did take this with calcium initially and it upset my stomach but I think that was because the amount of calcium I had to take to get the vitamin d level was ridiculous. I'll make sure I take that into account as well though thank you.
If you need a lot of vit D you should be given high dose supplements that are JUST vit D - it is extremely dangerous to up the combined supplement dose to get more vit D because of the amount of calcium you'd end up taking. Any doctor should know that.
Yep and the endo put them right but these are the same gps that didn’t notice the vitamin d was off the bottom of the scale because the top of the page said normal by mistake. They were also confused why my calcium level was normal until I took vitamin d and then fell below the scale. That’ll be because your bones leak calcium to compensate for the vitamin d to ensure there’s enough in the blood stream. I used to have to buy my own vitamin d as was told they didn’t do it on its own but I have a new gp at the practice and it suddenly appeared on my prescriptions last year. Pills look big enough for a horse but saves me buying them
I’ve become my own expert and can read blood tests like a pro now. When I was on my 20s I just trusted th doctors and ended up ill for years. By the time I was diagnosed over 15 years later I was a lot less naive and am far more proactive in my treatment. I very much tell the doctors what I am or am not happy with now as they aren’t the ones that have to live with it - I have a great consultant who works with me but I think I’m a bit too unusual for her and she’s no idea what to do with me
I can’t remember how I found it as it was probably more than 10 years ago now but I think it was either my endo telling me or it was on a thyroid group site as low vitamin d is common in thyroid. If you have extremely low vitamin d as I did then your calcium level should drop too. In order to compensate for this your bones leak small amounts of calcium to bring your blood level up. It is most common with hyperparathyroidism when it results in high levels of calcium in the blood but it can also happen with low vitamin d where your body compensates for the accompanying low calcium. So it isn’t totally common but it is possible to have really low vitamin d and normal calcium levels as in my case. Once I started the vitamin d tablets my body recognised it was now producing what it needed again so stopped doing it and then we got a true calcium reading which was mega low. No idea how long it had gone on for but my fantastic endo that I’d just switched to at the time was furious that I’d never had my vitamin d level tested despite a hashimotos diagnosis.
This article explains how it works with too much calcium going into your blood which can be from too much vitamin d. It doesn’t cover my situation but it works conversely if you don’t have enough vitamin d your body can’t absorb calcium so well and your body compensates for it. At least I think that’s how it works 😊. I think it is very much a thyroid thing but no idea if it would happen in other problems as well.
Mine is to all visible light and into the infrared range unfortunately - it is a rare level of reaction though and is causing most of my problems it would seem as it’s impossible to avoid all light all the time. I e found lots of different tricks and been coping but Guys hold the view that if we get me better controlled I might be able to have a better quality of life. I think I’ve settled where I am as my “normal” point is so bad to begin with for so long before I was diagnosed that I don’t really know any different so it’s easier to stay where I can cope than risk sending me spiralling again but they are making me reconsider that view
I have been on prednisone in varying doses for 16 years for a number of autoimmune condtions, including a/i hepatitis, seronegative RA, spondyloarthropathy, and Sjögrens. And since July 2018, for PMR, for which pred is the ONLY really effective treatment. I also took Dmards such as mtx and biologics for a period of time but developed serious problems with my liver and blood, such that pred became the only treatment for me, eventually at a steady dose of about 7 mg. Just to give you a context. My RA may now be in remission. As others have said, symptoms are dose-dependent. At 100mg and 30 mg, I had moon face, fat neck pad, huge weight gain, extreme irritability and volatility, pred head, and many of the usual very problematic and immediate side effects. On 10 to 7mg these diminished or disappeared. I am in my 70s and have had age-related problems that can be attributed to prednisone--cataracts, pre-diabetic bloods, skin thinning, and some osteopenia. Most of these have been treated and/or reversed. The pre-diabetes by losing the 60 lbs I gained, on a strict low to no carb diet-- something I should have done before. I am resigned to, not cheered by all this. There is a lot on this forum about research that shows that the effect of low dose pred over time is not much worse than/ different from that of aging. I take omeprazole and can handle this drug and my own tummy issues, so I don't have your form of misery. You will have to see if pred can help you. I got relief from arthritic symptoms very quickly. Will it be in combination with Mtx? What about biologics or other lupus meds? I suppose you have tried many! I read the lupus forum from time to time for Sjögrens information. A last thought about this forum: there are many instances of people talking about their negative pred experience, but as here in this thread, most know it is the only treatment for PMR/GCA. All the best.
Thank you that really helped. I haven’t tried biological yet and have one other immune suppressant that is also an option. I’m not sure what route I’ll take yet to be honest - it could be that rheumy totally disagree with Guys when I see them in two weeks and don’t want to change my meds but this thread has really helped me put pred into perspective as a possible next step rather than the fear I’ve had of it until now which is hopefully a good thing. It nothing else by the date of my appointment I should be better educated as to the pros and cons of all the routes available to me
Hello Mifford, I started my prednisolone journey adding omeprazole (spelling?) to help with digestion but then discovered, through this site, gastric-resistance pred tablets ... works perfectly!
Really good to know up front. From past experience the GR versions are more expensive so doctors never volunteer the info! I have a blood test on Wednesday and the nurse at my gps is brilliant so I might ask her advice too
well I was pretty much terrified of having to go on Prednisone, initially started at 20mg, now down to 6 1/2mg, this after a year and a half...havent had much of a problem really, hard to say sometimes whats being caused by the pred and whats being caused by PMR..I don't have stomach problems so far, I mostly take it with water and a small food item..ive talked to people who've been on it for years with little of the terrible stuff you read about...for me its worked I assume...im not going to quit cold turkey to find out thats for sure....
I’m sure some have problems, but it’s really the only thing that seems to work for PMR...every time I step down to a lower dose, which I do slowly and in 1/2mg increments, I seem to have a couple of crappy days but I’m pretty much accustomed to everything by now..”business as usual” 🥴
what kind of a diet are you on? Are you doing an anti-inflammatory diet. that should help with the lupus and the stomach. I have tried.. and do as best I can... Dr. Brooke Gartner's Lupus diet .. and when I am faithful to it feel much better.
I’m back at slimming world at the moment so most of what I eat fits in the anti inflammatory category anyway but I do know that refined foods, sugars and carbs spark me so I avoid them anyway. And anything with garlic makes me sick as a dog which means most food has to be cooked from scratch as it’s in everything. I tried looking at lupus diets when I started out but didn’t really see anything in them that didn’t fit in with what I naturally eat as part of a balanced diet if I’m honest. I’m open to ideas though so if there’s anything I can find online to give me the basics I’m happy to look at it
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