Hi All- I’ve been hiding out in Mn, gardening, going to work, and helping folks and their pets around the neighborhood. Im thrilled that I’m down to 3.5 mg prednisone and feeling great. New rheumy Dr C is fantastic. Got me on the right track with how to dose and when. It has also helped to go gluten free (not as hard as I had imagined). The most important things for my journey to wellness are the slow tapers and time of day I take pred. I take my whole dose between 5 and 8 a.m. each day. Previously I had been splitting up doses throughout the day, “ to keep me going” I had reasoned —“so I could get recharged at various intervals .” Dr C scolded me saying I was “re-toxifying” unnecessarily and not giving my adrenal glands a chance to kick in on their own (thus the “absolutely no pred” rule during the nighttime). Gosh darn it, if he wasn’t right! Even with a slow cautious taper, I’m making steady progress with no flares or other setbacks, as I experienced last year at this time and into the cold winter months (we’ll see how THAT pans out). But I feel more confident that I am seeing the light at the end of this PMR tunnel.
Curious to hear about others’ experiences with pred dosage, timing and also being gluten free.
JoanJo
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JoanJo
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Why gluten-free? It made no difference at all to me - I was gluten-free when PMR started as I have a wheat allergy, gluten-free was the easiest way of avoiding it without changing my diet at the time too much. But low carb helps a lot with maintaining weight while on pred and I do notice a difference if I eat much carb. But sugar in fruit and veg is gluten-free. Not gluten then ...
The usual instructions are to take pred all in one dose early in the morning to achieve the best anti-inflammatory effect and reduce side effects. In some people the anti-inflammatory effect may not last the full 24 hours and then splitting the dose is effective, taking perhaps 2/3 in the morning and the rest a couple of hours before a return of symptoms would be expected. But once the days dose of inflammation is cleared out you shouldn't need more if it was done properly with the right dose to start with.
It's great that things are going so well for you and you're seeing the light at the end of the tunnel. Dr C sounds as though he knows what he's talking about!
I'm still fairly new to PMR - started pred (15mg) in July; I'm now down to 9mg. I'm one of the fortunate ones in that the pred has taken care of the pain/stiffness, and I rarely feel fatigue; I do, however, suffer from fuzzy-headedness. I take my pred when I get up, which varies from 6.30am to 9am, depending on whether it's a work day.
It's interesting what you say about gluten free. I've gone low carb (cutting out bread, pasta, potatoes) and feel much better for it; but those reductions (apart from potatoes) have also meant that I've cut down on gluten. So I wonder if it's the reduction in gluten or the reduction in carbs that makes a difference?!
Nope - I don't frequent the free-from aisle; I'd rather do without than eat processed food! When I think about it, I never ate much in the way of bread, biscuits and pasta anyway; my biggest carb reduction will have been potatoes... I do like my tatties! 😁 They're an occasional treat now...
Me too! Though I have to say - gluten-free jaffa cakes are better than ordinary if you like that sort of thing. The spuds here in northern Italy are dire - and it is a spud growing area! So that hasn't been much of a trial for me!
I've never associated Italy with potatoes! Am I right in thinking that pasta isn't so popular in northern Italy? I used to enjoy making my own pasta - haven't done so for a while. I remember the battles we had trying to stop the cat nibbling the pasta when it was hanging to dry! She used to love it. 😺💕
I live in the Puster Valley, a potato growing region. The whole region is very Germanic (originally part of the AustroHungarian Empire until the end of WW1) and although pasta and pizza is now part of the furniture since the Fascists brought large numbers of Italian workers for the factories to Bozen in the 1920s it wasn't traditional before in the mountains as they couldn't grow much wheat, buckwheat and polenta figure instead. We do have pasta but freshly made ravioli-style things and spaetzle - pasta drops I suppose you would call them, thick pancake-type batter dropped into boiling water. They also use butter and cream as well as dripping quite a lot - the nearest large olive groves are on Lake Garda. But now it is all mixed up, local cooking with an Italian influence at times. And some restaurants have a wine list where Italian wines appear under foreign wines...
Love the photo!! sounds like whatever you are doing is working. keep on keeping on!! Here come's our Minnesota winter! Hooray!!! (sorry,,,but I do love our winters and my never slip and fall ice-bug boots.!
Great to hear about others’ experiences. I could not imagine giving up my potatoes either. Summer made a healthy diet very easy, with all the veggies from our gardens and farm share
Re: pasta, which I also adore, I eat edamame, chickpea and lentil pastas from our co-op to solve that little dilemma. Probably the “free-from’s” you’re avoiding, PMR pro? I doubt I could create them at home, but who knows, down the road, it may happen. Although now, a nurse niece claims I should avoid legumes. 😫. Not good for a vegetarian to hear. I’ll be researching that.
Oh, and I did fail to mention, I’ve had to re-configure my schedule to include more sleep, which I believe, has also contributed to my feeling better (along with dosing time and gluten free). We Polymalingerers (as one blogger called us way back when) can’t deny the huge importance of sleep. While caring for parents, it was just not possible to get enough sleep . Now I’m getting caught up since they each passed , 2 years apart. I miss them terribly, but realized how little I was able to pay attention to my own physical needs, with their needs being so acute and urgent .
Sorry for the rambling. Good to reconnect with all of you!
Now it's time to look after you and make sure you do .Good luck with the rest of the tapering and enjoy your gardening ,there is indeed a light at the end of the tunnel. Happy day's
I think I must be the only person I know who doesn’t like pasta. We even have an Italian friend who makes his own, luckily, although he can’t understand it, he is a great cook and always invents something different for me.
Hi joanjo. Your garden looks gorgeous! My Rheumy also was aghast when I told him I took my pred at night time so that I was more mobile in the mornings. He told me that was a definite no no since it stored up trouble later down the line for adrenals kicking in. At 7mgs presently so should know if adrenals kick in or not in the not too distant future. Here's hoping!
The time to take pred is when it works best for you - adrenal function becomes a theme at about 5mg so above 7mg it doesn't matter. Often taking it at night or split allows for a lower dose - which is also good.
When I went to 5mg of Prednisone my Rheumy told me to take it in the morning in one dose, not to split the dose as I had been doing. The reason given was to get the Adrenals working again. I did do that and it worked...so far. I think the timing is important and that the split dose works very effectively over 5mg but at a certain point the old Adrenals have to go back to business.
As long as it hasn't been disturbing your sleep then it shouldn't really be a problem. Our adrenal glands stop producing cortisol anyway after a few weeks and you've plenty of time to readjust things as you taper. If you have been having trouble getting to sleep or staying asleep, then switching to breakfast time (or earlier but always with food) should solve that.
Thank you Heron. Just left a message with rheumatologist’s receptionist. I don’t want to give my experience out to others if it has implications. I’ve been fine although I have been meaning to write a post about increasing pain since dropping below 15. My sleep is absolutely fine xxxxx
The time to take pred is when it works best for you - adrenal function becomes a theme at about 5mg so above 7mg it doesn't matter. Often taking it at night or split allows for a lower dose - which is also good.
The trouble is, a lot of doctors don't understand the physiology of long term pred dosing. In a short course of a few months it IS better to take it at night. But we are often looking at a few YEARS - and adrenal function will be impaired whatever...
I had an appointment with my Opthamologist yesterday and was told, in no uncertain terms, to take all my pred at once, in a morning only! Splitting the dose is not good, and taking it at night makes it even worse for your adrenals. I am just doing what I am told to do! Diagnosed GCA April 2018, down from 60mg a day to 17.5mg at present. No problems apart from wobbly legs occasionally.
My friend has had great success with gluten free for her arthritis. Do you have a touch of that too possibly? I take my Pred at 11 am because I like to take it with substantial food with the hope it will give my stomach some protection. I don’t like eating when I first get up. Currently it’s working for me. I’m only 2 months into taking it. Currently reduced from 40mg to 20 mg. Not sure what it will be like when I go to 15 mg
If you do start to get any trouble in the future Bamber99, with with stomach, ask for coated pred (gastro resitant). You can't cut these, but I take them without food, since I too can not eat first thing in the morning. Nor do I need to take Omeprazole for the stomach. One less tablet for the body to handle which has to be good news!
Thanks I didn’t know that. However surely that begs the question, unless you need to cut them, surely it would be best for everyone to take the coated ones?
You are right Bamber99 It would be better for everyone. However they cost more. I traded the additional cost against the cost of Omeprazole that I don't need - at least that is how my GP laughingly justified it to me. He prescribes me coated and uncoated 1mg so that I can add 0.5mg dose to the mix if I need it. Otherwise the rest are coated. Works for me.
You don't need ordinary pred - ask for 1mg enteric coated tablets as well. Including a 2.5mg enteric coated tablet provides 1/2mg steps and you add 5s and 1s as appropriate to make up the full dose.
Hi, I am interested to hear what going gluten free has does for your health? I have a friend on it who swears she’s not nearly as tired, but would like to hear about toher people’s experience. Sue
Gluten-free often means lower carb - unless the person is using the commercial substitutes. Low carb probably does make a difference but you can't say it is one rather than the other.
Respectfully have to disagree with you PMR Pro, but each time I eat gluten, I have two or more days of pain to follow. Well documented in my meticulous journals, I’ve seen that carbs themselves do not trigger this type of pain. Perhaps, as was suggested, I may have a touch of arthritis, but the actual pain I feel after gluten is PMR related whole body aches, not just joints.
It was a general observation not directed at you personally. And it may be a gluten-containing grain that is the problem - which is the case for me. No modern wheat, no problems, but kamut and spelt are fine (forms of wheat) as are barley and rye.
Thanks for the cheers, well wishes from you all — great to be supported! Thanks for comments on my garden pic. It’s been so therapeutic to garden this season. Last year was very painful doing most tasks. We also have had large vegetable gardens to maintain in the past. This year we scaled down the veggie growing space. Probably why I could enjoy gardening more.
I totally relate to the “can’t eat till 11:00” writer. I’m the same way. Even half a banana at 6a.m. with meds gags me. So I make a (mostly fruit) smoothie the day before (banana included) and drink a small amount with my pred. to coat stomach. Works very well. Just another idea for something to try if you decide to take meds earlier!
I agree that gardening is therapeutic. Like you, last year was a wipe out for me. I am so glad I did the landscaping in our new place the year before! It was so rewarding getting back to it this year. In fact the garden has been my reference point throughout this journey with my Rheumy and GP who are both keen gardeners. Common ground has undoubtedly helped both as reference for symptom status and in building relationships!
I take full dose 4mg. before 8 am. I also take Plaquenil. I have not cut my gluten or sugar, but think I should. I tried to lower to 3 and had to go back up. What is the best way to reduce gluten??
Hi Ivaugn- The best way for me to go off of gluten was to say to myself “I am only trying this for two weeks ,” per the recommendation of my acupuncturist, because I was so resistant to the idea. Once I realized how much better I felt (way less pain in the mornings especially) I decided to keep up that diet . And when friends, relatives and coworkers learned I was “trying “ to be gluten free (I didn’t want to fully commit publicly early on) I received many helpful recommendations and ideas for my favorite types of foods such as pasta. Rice is gluten free. There are brown rice pastas that are absolutely delicious, and with my home made pesto (from garden basil) I thought I was in heaven.
So it was just a “Trial Run” I decided to do, that has turned into a manageable lifestyle. I guess there are some great recipes on Pintarest, but I’m not a user of that or Facebook, where ideas are also shared, I hear.
Perhaps a slower tapering off gluten might work for others. I just decided to go cold turkey for a short period at first. The significant pain reduction cemented it for me.
Ive found how important it is (as ALL of you know) to listen to my body during this whole PMR journey!
BTW, Some people tell me that they think it’s the wheat planting / growing/harvesting processes , with chemicals introduced, that is what affects us more than the gluten itself (?) More food for thought. Another reason to try using only organically grown grains and produce.
Love that comment of Marilyn’s —using gardening for symptom status and reference points with your docs!!
In my case it is the structure of the wheat starch that is the problem and it causes an allergic reaction. I don't know whether it is still the case but in the UK they used to make gluten-free flour using washed wheat starch, chemically removing the gluten (lord only knows what the chemicals were!). I still reacted to gluten-free products made with Juvela's flour.
Interesting reading. I have been taking pred before bed for months but now, after reading this, definitely going to change to morning. Have been getting quite lethargic so this may help. As you have advised may also help my adrenals to waken up. Currently tapering dead slow to 5.5
Best of luck switching to a.m. , Hollyseden. You may have a few rough days at first, but am hoping your body eventually gets in the rhythm of it . It’s been way easier to taper for me since switching, because my adrenals started helping out. I just feel much better overall.
It’s interesting to read about your experience with gluten, PMR Pro. Have not heard of juvelas flour. Will look it up.
They do appear to still do the version made with wheat starch - it isn't allowed here in mainland Europe as gluten-free products must be naturally gluten-free'
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