Side Effect Maybe?

Hi Lizzie Ellen,

I'm no expert, but since suffering with PMR and also being on the steroids, I do find that I can be constipated for a while, and then the complete opposite. Sorry to tell you that, but forewarned is forearmed !

Of course you may not find the same happens, but if you suffer for any longer, have a word with your GP.

Hope you get it sorted !!

DD

Hi Lizzie Ellen

I have not been using this site for some time as I am just jogging along.

but I do still read all the comments.

I have had PMR for a year last August. when I was put on 20mg Prednisolone. I was doing well and had come down to 5 mg but by July was feeling bad again and as we were going on holiday my doctor put me back to 10mg. At one stage my doctor gave me some very strong pain killers which made me very constipated but since then I have been ok even though I am still taking the Prednisolene.

As I am down to 5mg I am sticking it out, I don't want to go up again as it takes twice as long to get off them. Anyhow getting back to your constipation, I was dreadful until I stopped the pain killers my doctor gave me so maybe that is your trouble. Some days I feel rearly bad and other days I am fine, well almost, so now I just take paracetamal for my pains. I still get the shakes within, at least no one sees them.

And if I am tired I have a sleep. I went to a W.I meeting last week and nearly fell asleep there I just felt myself nodding off during the speaker. mind you they did go on a bit.

I wish you well keep smiling. :D

Spammy

Hi, I was about to reply to Lizzie Ellen but having read Spammy's experience i would have written almost the same except that I am now slowly working down from 30mg pred and now on 9mg. I also found it was the painkillers that caused the constipation and that paracetemol helps without causing problems.

Betty

Yep me too! Steroids and anti-inflammatories seem to cause me to block up. Diet makes no difference but the one thing that works for me is Ortisan fruit cubes. A nurse told me about them; I got them in a health food shop and they do help! Half a cube once a week and I'm unblocked and unbloated! Good luck.

Thanks to everyone for the information. I'll be giving the Ortisan fruit cubes a try (never heard of them so thanks for the tip) along with the prunes and the liquorice!! I did take a lot of pain killers before my knee op last week so maybe that and the anaesthetic are a contributory factor. I've also taken heed of the 'opposite effect' possibility! I'm coming off the Prednisolone this coming week so the Consultant can get some blood tests 'sans steroids' 15mg then 10mg then 5mg then ahh! Not exactly looking forward to it but have decided its a good excuse to laze on the settee watching DVD's if necessary! I'll keep you posted

Hi there dont have a problem as long as I have my All Bran ( This should always be sosked first in either hot water or hot milk to make it a real slush !!! ) and prunes and drink plenty of water I do think sometimes the inactivity contributes towards this as well as all our body is controlled by muscles and with all the \"\"Resting \"\" we do with this illness I think our muscles weaken I know mine have !! Now on 4mg after a year with my second bout of PMR and hoping this reduction will work as struggled since May time to reduce doseage Best wishes to all

It always amazes me how people with PMR are struggling to ‘get off the steroids’.

Apart from steroids, what else is there to control the symptoms of PMR.

There currently is no known cause or cure and the steroids are alleviating the pain with which PMR manifests.

In the case of GCA ‘steroids’ stand between you and loss or partial loss of sight.

5mg is classed as a ‘low dose’ (some say 7.5mg) – and yes it is more difficult to come down when trying to get below 5mg as the percentage drop is higher the lower the dose you are trying to get from and too.

PMR has a mind of its own and it quite quickly lets you know that it is still around. PMR decides when it will go and come.

A loud noise needs to be made to get more research into these two orphan diseases and to find, if not cause and cure, friendlier medication. Some trials are taking place.

Visit www.pmr-gca-northeast.org.uk and look under research. But until money - yes that stuff we are all short of – is found to fund more research - steroids it is or its sister Methotextrate and even that has to be taken with steroids initially and is not a cure either.

In the meantime, we need to help ourselves and ask each other does this happen or that or just moan. And its great to have this site to do just these things and it helps you to understand PMR a bit better and it has educated me over the last 3 years.

I am not standing up for steroids, as after 3 years of high dosage I have just managed to get down to 7.5mg. But I do bless the person who discovered them as I have GCA.

There are 82 listed side effects on the web somewhere, but I have never come across anybody that has had them all. I count myself lucky.

Antibiotics, painkillers and indeed most tablets seem to cause constipation and less activity does not help, but try and walk, do gentle exercise, gentle aqua aerobics and power plates all help, but as others have said, there are a lot of natural products you can take.

Bran (chuck it into stews, tarts, curries et al) it disappears and you do not even know its there as it has no taste. Friendly ‘bacteria’ products are also good.

Well, that’s my sixpennorth and I hope it helps

Here is hoping either friendly medication or a cure is found as soon as possible. someone, somewhere is bound to crack it sometime.

In the meantime I hope your pmr decides to take a hike all by itself.

Thanks Mrs G and Mrs K for reminding me about my lovely Bran Cake recipe! Too busy thinking about the problem and not the solution My family have a lot to be thankful for regarding steroids as my 13 year old Grandson has been steroid dependent since he was 2 years old and will continue to be for life. Nannie going on steroids was greeted with a shrug and a hug - no big deal to a lad who takes them 3 times a day plus regular jabs :lol: Having a good day today - yipeee! Thanks again. Regards Lizzie Ellen

Very informative posts from everyone. My PMR 3 months old, and my doctor seems to think I should decide for myself when to reduce my steroid dose. 15mg for two weeks, then 12.5mg for two ditto 10mg. Now I am reducing the dose by 1mg every two weeks and waiting to see what the sticking point is.

As bad as I am many mornings, by every evening I am much recovered. I find evening exercise gives me a much better following day. In my case I go (sequence) dancing three evenings each week and it is definitely helping (can't do as much as I used to, but still put a lot into it). Mornings after I have not danced can be difficult.

I take paracetamol occasionally to see me through a really bad patch.

Constipation came and went. Thank goodness for Prednisolone. By the way I was very fit before being afflicted. PMR seems to haver been the result of an extended (and very painful) Carpal Tunnel episode. Both hands and now relieved by surgery.

Chin up!

Hi fellow sufferers

I don't know about prednisolone causing constipation but I do know that painkillers containing codeine are utterly, utterly bunging up. Raw grated beetroot is very good for those who like beetroot - particularly raw. I am a great fan of juicing and juice up a mixture every day of carrot, celery, apple, beetroot and anything else to hand like mint for the stomach. Cabbage is also very good for the stomach which is under attack from prednisolone but needs to be mixed with something else to make it taste better. All this along with a nice, organic low fat yoghurt seems to benefit. and oh yes - champagne is a good painkiller....!! Perhaps NICE should be informed.

Hope this helps

Margaret

Cameron, keep up the dancing ! Owing to a recent knee op dancing is out for me but aiming to get back to the gym in about 4 weeks time. I haven't been since the PMR started so won't be keeping up with the 'yummy mummies' however I'm keen to start again now I have a nicely repaired knee. I think I could only manage a 'soft shoe shuffle' the way I feel today, but on a good day I love to walk and find it helps get the limbs moving.

And Margaret, thanks for the suggestions. My partner had a good laugh as the only food on this earth that I detest is? Yep, beetroot :lol: Love cabbage (just had a plate full) and adore low fat yogurt, so please will you let me off the beetroot? So as not to upset you I promise to give the champagne a go :D Seriously though, I had to take codeine after the knee op so I'm guessing that was the culprit. All back to normal now!

Thanks again to everyone for their help.

Regards Lizzie Ellen

Hi Lizze Ellen

I alway keep tined prunes in, just in case I get contipated, they are by a popular brand and are only 99p per tin. Can get them in the larger super markets and they are very tasty and cheap. You would pay more for fresh and I think they are better. :o

Hi Lizze Ellen

I alway keep tinned figs in, just in case I get contipated, they are by a popular brand and are only 99p per tin. Can get them in the larger super markets and they are very tasty and cheap. You would pay more for fresh and I think they are better. :o

Hi Lizze Ellen

As you can see I have sent you two replies, I did mean to say Figs as in the second one although tinned prunes are nice too but I love figs and they are better than the dried ones.

Keep smiling Spammy :oops: :roll:

Hi Spammy, thanks for the helpful info. Never bought figs in a tin so will look out for them next time I'm shopping. I've had to come of the Prednisolone for a week to have some 'steroid free' tests so avoiding all things laxitive due to severe lack of mobility :lol:

Thanks again.