Problems reducing with uncoated Pred and stomach pain
Posted , 12 users are following.
After 22 months with PMR I am trying to reduce from 7.5 mg to 7 mg Pred on one of the DSANS methods. On the days I take the 5mg + the 2 1mg tablets I have awful burning stomach symptoms. I am on 10 mg Omeprazole to help with this. Any suggestions as to any other way I can deal with it would be greatly appreciated please. I have already had bouts of gastritis (with and without H. pylori) and cant face another one on top of everything else.
I also have bad fatigue and buttock pain. Not sure if the buttock pain is due to having lost so much weight and not having much flesh / muscle left there!
Lots of other side effects/symptoms, but these are the ones I need to deal with asap. Many thanks
0 likes, 60 replies
paula63201 jan21306
Posted
So sorry for your pain. Do you take Prednisone with food? I take it right after breakfast, which for me is fruit and joghurt and a great deal of fluids. I drink a large cup of ginger tea first thing in the morning with the Pantoprazole (40 mg) and then have breakfast about an hour later. I also have several cups of decaffeinated coffee with cream. And then take the Prednisone with a glass of water. (Yes, I stay near a bathroom for a while!!!)
Pantoprazole is similar to Omeprazole, but it is on prescription. At one point I was fed up with taking all these meds, so dropped the Pantoprazole, and within a week I had awful stomach pain. Needless to say, I went right back on it. I wonder whether you need more Omeprazole? Perhaps you need to consult your doctor on this?
Paula
MrsO-UK_Surrey jan21306
Posted
Jan, the first thing I would do in your circumstances is ask to be switched to coated Pred and see whether that results in a resolution of your stomach problem. Both Omeprazole and Lansoprazole caused nasty bowel problems for me so had to be stopped. I resorted to eating a small carton of 'live' yoghurt with my breakfast before taking the pills and my stomach remained fine through 5 1/2 years of steroid treatment in spite of a 40mg steroid starting dose......BUT I was on coated pred throughout.
faye______00403 jan21306
Posted
There is a 40mg Omprezole that you need prescription to get. I take
2- 20mg of Famotadine as it has a lot less side effects than Omprezole
and don't need a script as it's OTC.
Anniecurd jan21306
Posted
paula63201 Anniecurd
Posted
Are you in the USA? I would love to not take the Pantoprazole. What are the capsules made of? I am wondering what search terms to put into the search engine.
Paula
EileenH paula63201
Posted
I've just posted this on another thread to a reply to someone else and who said she uses famotidine:
"Just wanted to mention that when you take PPIs and then suddenly stop it is common to get what is called acid rebound - even more acid being produced than normal. PPIs are renowned for causing wind and even far worse gastric problems. Ranitidine/Zantac (same family of drugs as famotidine)does the same job but with fewer/different side effects.
I was once told that many gastroenterologists don't understand the fascination non-gastro specialists have with PPIs. Yes they stop acid production (slightly) more efficiently than the older drugs - but they then have a bigger kickback if you stop taking them. They have horrid side effects for many people - and don't work for about a third of patients! But they've been marketed very well."
There are other options beside the -oprazole drugs, the PPIs.
faye______00403 paula63201
Posted
You can find them on Amazon. I ordered some but couldn't
tell the size on the picture and they were way too big....I returned
them. If i ordered again I still wouldn't know how to judge
the size......can't remember if they gave options or not....
karenjaninaz faye______00403
Posted
I bought size 0 which is not too big. I was able to put different size pills in them .Maybe the next size smaller might make it hard to put the pills in.
Anniecurd paula63201
Posted
i think I ordered the capsules from someone on eBay. I just typed in enteric coated capsules. I works for me, I used to be get such bad chest pain from the heartburn that my dr sent me to a cardiologist.
JanSP jan21306
Posted
My omeprozole 40 mg. takes care of my reflux even when I'm on high pred dose for my GCA. I'm even taking fosamax for my bones which some docs said would cause more reflux. Ask your doc.
lodgerUK_NE jan21306
Posted
I would ask your Gp to change from Omeprazole to Ranitidine, this used to be called Zantac and it is a muich older and kinder medication, developed to heal ulcers both gastric and dudoenal. It healed my brothers dudonoenal ulcer and that meant no operation.
When you take your pred, are you taking any other tablets at the same time? If so what are they. I found it best to take the pred on its own and I often took it very early and then went back to sleep for an hour or so and then let the tablets do their work. ie If I woke at 6 or 7am took them then and then back to sleep.
1mg do not come enteric coated. The 5mg and 2.5mg do. So once you get down it is going to be even more of a problem.
I would also try taking the pred with yoghurt (preferably an organic, pro-biotic) and a teaspoonful of Manuka Honey in it.
Like MrsO, I had no stomach problems at all during the five years with GCA. I did not even need any stomach protection at all.
EileenH jan21306
Posted
A pharmacist recommended "sandwiching" the pred in the middle of a proper meal - eat half the meal, take the tablets, eat the rest of the meal. Just a snack isn't really enough if you have a very delicate stomach. I'm assuming the 5mg tablet you are taking is an enteric coated one, it is just the 2x1mg tablets that cause the problem? Have you ever tried taking your pred in the evening? The enteric coated tablets take about 7 hours to reach the blood because they pass far further through the gut before being absorbed. That would mean if you took it with your evening meal (no doubt much more substantial than your breakfast) it would have more to cushion it. It would then be working by the next morning. That's the principal the pred I take works on.
As the others have said, that isn't a very high dose of omeprazole - 10-20mg is suggested for long term therapy so perhaps a higher dose might help.
Lots of people swear by yoghurt - since it works for a lot of people on its own you could try it and everything together!
And finally: Why not try slowing the DSANS method down even further? One day of 5mg, then at least 2 weeks or even longer of the 7.5mg again, one day 5mg, that time minus one day of 7.5mg and so on. Other people have used it to reduce in 2.5mg steps. Going from every day one dose to every day the new dose is a major shock to the system - but one day followed by several days of the old dose can also fool the body for a bigger drop. Even 1mg at a time (I can't cut my tablets either) I really notice the difference the first few days I have taken the new dose and feel quite "strange" but by the 4th time my body is happier, as if it thinks, oh it's fine, it'll be back to normal tomorrow. It might be worth trying.
If all else fails - it is possible to use intramuscular steroid injections to manage PMR and that avoids any gastric problems. It is mentioned in Recommendation 5 of the 2015 guidelines for the management of PMR (you'll find the link in this post https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316 ) and Hilary on this forum is managed successfully in that way by her doctor at Eastbourne.
linda17563 EileenH
Posted
..I am doing dead slow reduction, and have got down to 10mg this weekend, but having read something you recommended, it says some people are told to stay at 10mg for months and maybe a year....what may I ask is the advantage of this?.....
I am feeling quite desperate to get this right....but don`t feel I`m getting anywhere......
I never feel it is easy explaining to a doctor how one feels, so the conclusion is....maybe withdrwal, maybe PMR, or maybe Fibro......so frustrating!!
Thank you for any suggestions....if there are any!
EileenH linda17563
Posted
The "stay at 10mg for a year" bit is part of a reduction scheme by what used to be the Bristol UK rheumatology group. They found 15mg for 6 weeks, 12.5mg for 6 weeks and then 10mg for a year reduced the flare rate from 3 in 5 patients to 1 in 5. I suspect that their flares were then in the following 1mg a month reduction - and were as much due to going too fast. Some people struggle with 1mg reductions even at 15 or 20 mg daily doses and from 10mg 1mg is a steadily increasing percentage drop above 10%. So the Dead Slow approach was born - originally thought of by a Swedish gentleman to get below 5mg and off pred and it worked for him. Then we tweaked it and suggested it for below 10mg - and now I'm sure it helps people at any level to feel better while reducing. Some people can reduce with no bother at all if their doctors don't force them - half the trouble is a lot of people will just keep reducing whether they feel OK or not. And there is always the adrenal glands waking up aspect which has a different "feeling ill" version.
We think that with the Dead Slow approach that it is generally possible to keep on steadily reducing - it covers the "is this due to too big a drop" problem and is slow enough for your body to adjust ever so slowly to the changing dose and your adrenal glands can usually keep pace. If things get worse you can stop at any point - you have reduced some, always a good thing.
Just keep on as you have been - and see how you get on. No need to hang around at 10mg if your doctor wants you to get lower - but don't let her bully you if you are doing OK.
linda17563 EileenH
Posted
Thank you for that, I will continue to drop .5mg at a time, but I have to stay there for at least 2/3 weeks before I can drop again so will continue with that, but only if it feels right....tortoise and hare!
EileenH linda17563
Posted