I was diagnosed with pmr in Sept 2006. Started on 20mg prednisolone and after a few weeks began to experience burning pain in my chest. This was due to stomach inflammation caused by steroids. I began to take 40mg pantaprozole which took the pain away for a few months but in the past few weeks it has returned. I am now on 7.5 mg prednisolone and still on pantaprozole but the burning pain is driving me crazy. I am becoming terrible anxious and depressed. My shoulders are beginning to ache again and im sure esr will be high on next blood test. Im due to see a rheumatologist for the first time on 26th March. I feel like im in a catch 22 situation, if i need to increase steroids, the chest pain may get worse. Has anyone else experienced this stomach problem and how have they coped with it? Id be so gratelful for any replies
Dear Granny Anne,
I too had the burning pain in my chest especially after laying down in bed. It is was gastric reflux which is too much acid caused by the steroids. I was prescribed Lanzoprazile which worked wonders the same evening of taking it. I am still on it but half the original dose. I am on prednisolone, now in my fourth year. I've read in the leaflet that it is very necessary to take lanzoprazile otherwise you can get ulcers in your gullet caused by the excess stomach acid.
All the best,
Frances
Granny Anne and Granny Frances
Have either of you been taking non-enteric coated steroids, in particular the 1 mg which are not enteric coated.
I have been in contact with the generic drug manufacturers asking for an explanation as to why 1 mg is not coated. The 1st answer was so full of gobbledygook, that I emailed again, the second was not better and still did not give a sane answer to the question. I am still pursuing the issue as long term steroid users when given a programme to drop the dosage it invariably means taking 1mg at some stage and for quite sometime. I do not intend to spend until September 2009 chopping tablets in half - just because drug companies are too lazy to coat the 1mg. Unless I get a very good reason which does not include cost.
Anyone care to join in writing to them about the problem caused my non enteric coated tablets in this day and age is welcome to follow the link and email me.
Dear Mrs K,
Yes, I've been on the enteric-coated steroids until quite recently when, in order to lower dosage I was prescribed four a day of the 1mg tablets. This was to drop from 10mg to 9mg for a month and to drop by 1mg for each month until I'm down to 5mg. Don't they taste awful!
However, after ten days my symptoms had returned so I've gone back to the 10mg.
I didn't know about the long-term effect the 1mg could have and I'm willing to join in about them.
Regards,
Granny Frances
Dear Grannies
I was prescribed Lanaprozol which badly affected my bowel and then was prescribed omnaprazol which also didn't agree with me. So without any stomach protection from the Prednisolone, I resorted to an organic live fat-free yoghurt daily. So far, so good. However, being on 4 mgs daily at present, therefore without enteric coating, I will take the advice of Mrs K and contact the drug company/ies begging them to put themselves in our shoes and coat the 1 mg tablets. Why don't the rheumatologists put pressure on the drug companies to do this?
Good luck with the yoghurt!
Mrs O Guest
Lovely to hear from you and that you are going to join in.
The replies I have had from drug companies are beyond belief.
The one I like best - is 'that coating the 1mg might effect the tablet'.
I pointed out, that in that case why did they coat the bigger tablets.
Did that mean my 1mg Prednisolone was different and should I tell my GP and Rheumatologist about it.
After all a car is a car irrespective of its colour.
I am still waiting on a reply to that one.
But every little helps and I will keep on pushing this and am in the process of asking my MP to delve into this matter with the MoH and NICE.
Mrs K
I have already e mailed a drug company regarding the lack of 1mg enteric coated pred and have received an interim reply only. I will post the whole reply on this site when received. I can't understand why they continue to make the non-coated pred - oh, could it be the price? They are a few pence cheaper!!!
Come on everyone, get writing, we could make a difference
Hi and thank you to everyone who has replied to my original experience. Your comments have been very helpful. I will write to drug companies re 1mg tablets
I found the Medicine and Healthcare products Regulatory Agency (MHRA).
This is a government agency and their web site is www.mhra.gov.uk
Click on Reporting Susupected Adverse Conditions..........
This is an online part of the 'Yellow Card' reporting scheme - which is what you fill in at participating chemists.
I filled the online form in complaining about non-enteric coated tablets in particular 1mg Prednisolone. Pointed out that PMR/GCA patients were high dosage (defined as 7.5mg and above)and also long term users, and in most 'drop' programmes had to take as many as 4 per day of un coated tablets which led to a high risk of gastric problems (which were referred to in the leaflets supplied with the tablets). PMR/GCA patients suffered from such problems.
Mrs K
I asked why were these not coated when the risks where already well known and GPs had to prescribe gastro inhibitors, which were an additional cost and did not suit all users.
I await a response - but am unsure as to whether I will ever get one.
So join in - hit the MHRA - they are paid by us as taxpayers and are supposed to be looking out for us.
I have had pmr since mid 2006 (when I was 62) and have been on steroids (always enteric coated) since then. High doses to start, then decreasing and 2.5mg for the last 4-5 months. Not enough, felt increasingly unwell and very ill this last week. Now diagnosed GCO yesterday and back up to 60 mg. Improved already today, but it occurs to me, when reading the site for the first time, no-one seems to mention the 2.5 mg. pill which can be enteric coated. So maybe 3.5 mg. one day and 4.50 the next would level out to 4 and cut down on the non-enteric coating? I am very prone to stomach irritation (cannot take aspirin), but touch wood so far have had no stomach problem.
Re production of Prednisolone enteric coated in 1 mg form.As promised earlier, here is one reply I received from a pharmaceutical company. I have deleted the names of the persons and the company concerned:-
\"We currently only have licence to manufacture and market 2.5 and 5mg Prednisolone. We recognise that additional prescriptions would be of significant advantage to patients and are currently reviewing the development of these. For your informaton the timescale to develop, register and gain licence for a medicinal product can be fairly lengthy - I would anticipate at least 3 years from the start of a development to the actual launch of a new product\"
Three years is a long time to wait but at least the ball is rolling.
Keep at them!
[quote:ac4de0dc71=\"Pammy\"]Re production of Prednisolone enteric coated in 1 mg form.As promised earlier, here is one reply I received from a pharmaceutical company. I have deleted the names of the persons and the company concerned:-
\"We currently only have licence to manufacture and market 2.5 and 5mg Prednisolone. We recognise that additional prescriptions would be of significant advantage to patients and are currently reviewing the development of these. For your informaton the timescale to develop, register and gain licence for a medicinal product can be fairly lengthy - I would anticipate at least 3 years from the start of a development to the actual launch of a new product\"
Three years is a long time to wait but at least the ball is rolling.
Keep at them!
I have rec'd a reply from one of the Pharmaceutical Companies in answer to my query as to why the 1mg Prednisolone tablets were not enteric coated. I quote as follows:
\"Apparently the demand for the uncoated tablets is greater than for the coated tablets however I have passed your comments on to the appropriate department and you will be happy to know that we will be looking into it.\"
Doesn't tell us anything at this stage but I have asked them if they could send me a further response once they have \"looked into it\". We can only hope. Will continue to write to further Companies.
from Mrs O.
Mrs O
Of course the demand for 1mg uncoated is higher, for two good reasons.
One - we (that is a normal person) does not actually realise why tablets are enteric coated and when people take non-enteric coated and they have stomach problems, the GP then prescribes another tablet for the stomach problem. GPs do not have the time to pursue drug companies.
Two - long term users of steroids, invariably have to use 1mg tablets to make up their current prescribed dose - ie I am currently on 9mg per day, so that is 1 - 5mg and 4 - 1mg - my chemist and GP will not let me chop them in half or vary the dose day by day. So every day take a 4:1 ratio. Next month it will be 3:1 ratio. Non-enteric coated are cheaper to produce. And to change from non to enteric - I gather they have to apply for a new licence.
But I will keep on pushing.
[quote:44c81ff0cc=\"granny anne\"]I was diagnosed with pmr in Sept 2006. Started on 20mg prednisolone and after a few weeks began to experience burning pain in my chest. This was due to stomach inflammation caused by steroids. I began to take 40mg pantaprozole which took the pain away for a few months but in the past few weeks it has returned. I am now on 7.5 mg prednisolone and still on pantaprozole but the burning pain is driving me crazy. I am becoming terrible anxious and depressed. My shoulders are beginning to ache again and im sure esr will be high on next blood test. Im due to see a rheumatologist for the first time on 26th March. I feel like im in a catch 22 situation, if i need to increase steroids, the chest pain may get worse. Has anyone else experienced this stomach problem and how have they coped with it? Id be so gratelful for any replies
I do so wish I could wave a wand, but I can't.
For the burning pain have you tried Gaviscon, I have a friend who uses it - mind she is not on steroids and she says its good and it takes the 'burn' away.
I take Lansoprozole Gastro Inhibitors - but these suit me and they don't suit everybody. But then that's tablets for you. What works for one does not always work for another.
Granny Anne, you are going to have to try and stop strssing about it all - stress just adds to the problem. Go and have a long talk with you GP - book the last appointmet for the day and then you don't feel guilty about the folks behind you - when your ten minutes is up. You really need a good heart to heart with him/her.
Granny Ann
So sorry to hear about your gastric problem that is not responding to the stomach protection tablets. I was started on 40mgs of Prednisolone some 20 months ago but could not take any of the stomach protection tablets as they upset my bowel. Instead I have always taken an organic live fat-free yoghurt daily (half with breakfast and the other half for dessert in the evening, perhaps with stewed apple) in the hope that that will line my stomach and prevent such problems - so far, so good. I don't know if it is the yoghurt that is doing the trick for me but maybe you could try this and see if it works for you. Other than that, it would be best not to eat any highly spiced foods or any spiced foods at all for that matter.
Only a suggestion to try and help. Good luck.
Mrs.O
Granny Anne and Mrs O
I take a friendly Bacteria drink everyday since I started on Pred.
I don't know whether it helps but what I do know is that I can now eat pastry without getting indigestion, and I can also eat Lamb, which I love, but always had to take indigestion tablets afterwards, so tended to avoid it.
In fact within six weeks of taking it, I have not had to take any indigestion remedies at all. Maybe its the pred or maybe its the friendly bacteria.
Who knows - but its worth a try.
mrs K
Dear Granny Francis
I am also on 9 mg per day so I take one 2.5 enteric coated plus 2 1mg non enteric coated am and pm. I find taking them am and pm is necessary and my husband, who is a doctor suggested the am pm regime to lessen the effect on the stomach. I also take omeprazole - one a day and so far so good. I am sorry to hear of your problems - this pmr is such a nuisance.
Dear fellow sufferers, I have only been diagnosed with PMR about 6weeks, and have come down from 20mg prednisolone to 13 mg. Initially I was given the coated tablets, then my doctor, writing the next prescription said \"These are just the same, just not the pretty colour!\" Which makes me think it must be cost. Anyway I have been getting heartburn, sorted by a couple of Rennies, but occasionally really dreadful chest pain, which nothing seems to shift. So thanks for all the information about the non-coated tablets - I will have a go at my doctor when I see him this week! I feel it is difficult enough anyway with this illness without the medical profession adding to it.
Incidentally doesn't PMR vary? I have come across people who have had it for 6months, kept up their energy levels and haven't really been that effected at all - but it does make it difficult explaining to people when you feel you just can't move!
Green granny.
I agree Green Granny. My colleague suffered pain in his arm and shoulder- enough to keep him awake at night and make it nigh impossible to raise his arm in the morning, but apart from that he was unaffected. I myself didn't get any outright pain, just a feverish aching and soreness over my whole body, from my eyeballs to the soles of my feet. I lost weight and had no energy at all, getting out of breath at the slightest exertion. I fought my gp's diagnosis and got a second opinion as my only experience of PMR was my colleague's and it was so completely different. :shock:
Regarding stomach problems, I was prescribed Omeprazole along with Pred and a while back I forgot to take them for a couple of weeks or so. I started to get terrible heartburn and pains between my shoulder blades, which I was told sounded like acid reflux. I've never suffered with any such problems before in my life. One day during a conversation with my brother I remembered the Omeprazole, which I've taken religiously since and haven't had any heartburn or similar problems since. :D