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
HiJan,
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
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.
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.
I put my pred in coated capsules that I ordered from a website. The pred then bypasses the stomach.
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.
If you read the leaflet that comes woth Omeprazole you will see that one of the side effects is aches and pains, just like PMR.
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.
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.
Jan, I have that same problem if I cut back on an acid reducer. When I take a ppi( proton pump inhibitor) like rabaprazole or lanzoprazole they help the symptoms but give me so much wind I cannot even sleep not to mention the uncontrollable sound effects. I switched to Pepcid (famotidine is generic) 40 mg twice a day and after a few days all was perfect. This is the dose recommended for Gerd. It is a histamine 2 blocker and this class of drug has less side effects. While waiting for it to kick in I chewed a 2 antacid tablets.
Hi Anniecurd,
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
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.
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.
Eileen
even more acid being produced than normal.
I found that MrsO's remedy of 1 organic lemon, placed in microwave for 1 minute, then all jiuce extracted, divided into three and taken with water before meals, stopped acid reflux.
You told me hwhow it worked, I have forgotten.
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....
I tried the lemon recipe for acid reflux and it didn't work well for me.
I tried several times....
Faye,
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.
I cannot understand, scientifically, how drinking something acidic- lemon juice, can help acid reflux- unless one drinks a lot of liquid and washes down the acid.
I reduced my meal size significantly and do not lay down after eating even for a nap until 2 hours have passed.
I also wonder if the silent reflux from pred had aggravated my breathing problems- because acid and stomach juice can slide past the throat and irritate the bronchi. Since I've taken the above measures my breathing is better. I've reduced the Qvar by half.
Interestingly, the rescue inhaler, albuterol not only relaxes the bronchi but science found it relaxe the esophageal sphincters.
It is said that very well diluted lemon juice and water has an alkalising effect when digested - I have no idea how either! You will find the claim all over the internet and a site called Healthline does have a fairly sensible article called "lemon water for acid reflux".
However a rather more scientific site says
"The food we take does not affect the blood pH directly. Acidic food will cause increased secretion of alkaline components into the digestive tract to neutralize the excess acid."
i.e. the acid in the lemon water encourages alkaline enzymes etc to be produced into the gut. That WOULD make a difference possibly.
They also suggest that the belief is due to someone who caught half the story about citrate and didn't understand the chemistry properly.
But - a lot of indigestion is actually due to TOO LITTLE acid in the stomach so a bit of lemon juice probably helps there.
What annoys me intensely is the mantra that eating an "alkaline diet" will change the body pH - each area of the gut has its own pH, from very acidic to alkaline. It is essential for food to be digested. The same site says:
"The blood pH is tightly controlled since variations are quite dangerous for us. Under normal circumstances the pH is 7.4 (with a normal range between 7.35 and 7.45). Below that we are talking about acidosis, above it about alkalosis. If the blood pH goes about 7.8 or below 6.8, death will occur. This pH is maintained by the Bicarbonate-buffering system. Food that we take up does not directly influence the blood pH (and there is also no reason for us to do so, since this is tightly controlled and regulated), so this is a health fad."
You cannot change the body pH by what you eat - if you did you would pretty soon be dead. On the other hand, there COULD be a more local action, inside he gut but outside the cells.
But we all know - Google or the newspaper says it so it must be right.
I have a friend that is pretty knowledgable in Chemistry and explained
it to me...no way could I explain it to you....but something to do with
acid and aklaline......Chemistry major out there?
Karen, it works because although lemon is acidic it turns alkaline when injested. Our bodies are far healthier in an alkaline state. The lemon juice in warm water immediately on becoming aware of symptoms of a urine infection stopped the infection in its tracks for me some time ago, with the unopened prescription being consigned to the bin.