REDUCED STEROIDS

[sylvia39]

Now down to 2mg per day, having been on steroids for 14 months treating my PMR, relief was almost immediate at start except for stiffness in legs. Have now been told my blood test shows I am clear of PMR and probably have early stages of arthritis. At 77yr I an sure arthritis is a possibility but my query is that shoulders, arms pain and leg stiffness is exactly as described in PMR Handout from Doctor. Whereas, I know I have a weakness in one hip which is a different symptom. Have been told to reduce over next two months eventually by May stop altogether. The stiffness in legs is still as bad so does this mean I just have to grin and bear it? Hope one of your friendly members can help. Sylvia39

[suzy1959]

Who has told you that and how do they know?

Is it because your CRP and ESR are now normal? Well, that's probably because the Pred. is working! 14 months is a relatively short time but it is possible it has gone, but since there is no definitive test to prove PMR, equally there is no definitive test to show it's not there any more.

If you are still getting symptoms, then I think you are right to query this conclusion and I do not think you should just "grin and bear it". If there is one thing I have learnt in my 5 years of PMR is that doctors are definitely NOT always right and we have to inform ourselves and challenge where necessary! After all, it's our body and our pain!

Good Luck.

[sylvia39 in reply to suzy1959]

Thank you for your swift response, I will check with my doctor and request further investigations, We know our own body and must go with instinct. Will keep everyone posted. Thanks again

[Js94947 in reply to suzy1959]

Great comment. Many times PMR is misdiagnosed.

[Js94947 in reply to suzy1959]

Great attitude. I wish you well.

[PMRpro Ambassador]

There are no blood tests that can show anyone has or has not got PMR. If you are still on pred then the ESR and CRP SHOULD be low - the pred is managing the inflammation. In some people as long as they are taking pred the inflammatory markers don't go back up again or lag a long way behind. The symptoms are ALWAYS king. And what sort of "early arthritis"? Osteoarthritis or rheumatoid arthritis? Who is saying this - a GP or a rheumatologist?

When did the stiffness return/get worse? If going back to that dose clears the problems it is a reasonable sign that it is due to PMR. PMR usually lasts at least 2 years - it would be very unusual for it to be gone in just over a year. And is more likely to last longer than 2 years.

Suzy has said the rest so I won't repeat it. Find another doctor who knows more about caring for the patient not the figures.

[sylvia39 in reply to PMRpro]

Hi Thanks for getting back to me, it is a relief to have the support of fellow sufferers. There appears to be a lot of 'guess work' going on in the Medical Sector! However, am determined to press for further investigations to support their diagnosis. Thanks again everyone.

[Js94947 in reply to PMRpro]

Pregnosone masks a symptom, it does not heal. The side effects can be bad.

[PMRpro Ambassador in reply to Js94947]

That is why it is used in PMR and GCA - to manage the symptoms and allow a decent quality of life until the autoimmune disorder burns out which, for 75% of patients it does. None of us on the forum claim it cures - in fact, we spend a lot of time explaining to new members it doesn't cure, just manages. There is no other option for PMR and while there appears to be one on the horizon for GCA it is not yet available, is very expensive and has some fairly bad potential side effects itself.

In the case of GCA it reduces the inflammation in the arteries to maintain the blood flow to the optic nerve. If that is reduced enough or stopped - the result is irreversible blindness. I think you will agree that that is worse than any potential side effect of pred?

There are 82 listed side effects of pred, no-one gets them all, some people get very few. Having had 5 years of PMR without pred and experienced some unpleasant but not life-threatening side effects of pred - I'll take the pred downsides thank you. Constant pain and immobility was no fun - pred gave me my life back. Those on the forum who have partial loss of vision are extremely grateful for the residual vision high dose pred saved for them.

[piglette]

Where on earth do these people come from? Did they really qualify as doctors? Blood tests may tell you that you have PMR, they do not tell you it has gone away. Whatever you do don't grin and bear it, you will just put yourself through unnecessary pain.

[sylvia39 in reply to piglette]

Thanks for your support. I will take on board your advice and press for further investigations.

[Js94947]

Get off pregnosone, it is not the miracle drug as many have described. Too many side effects. I was on it 13 months and when I got off it I experienced the same pain back of legs, buttocks shoulders etc.. I have discussed with my rhemy, who I admire, that it is a misdiagnosis, I have no Inflamation. I recently exper an episode w.sciatica and due to a great neighbor who has sciatica problems got me on 1800mg of ibuprofen. Of course checked this out with doctor and it has made all the difference in my soreness of muscles. 1800 mg of ibuprofen for ten days or until sc. Pain is gone. I have reduced to 600mg and it is taking soreness away and I have much more mobility. This has worked for me. Beware of misdiag. Of PMR when doctors do not know what is wrong.

[PMRpro Ambassador in reply to Js94947]

I suggest you take your misinformation somewhere else. Those of us who have PMR have no choice - it is take prednisolone or be crippled. Don't imagine for a moment we haven't all tried alternative approaches.

I'm pleased your 10 days of ibuprofen have helped your sciatica - but it doesn't help in PMR and most of us will have tried it. Ibuprofen, however, has some pretty nasty side effects itself: one lady was told to take ibuprofen for PMR and after 3 doses she was in A&E with a gastric bleed which nearly killed her and long term it can cause heart and renal problems.

I also have back pain that isn't directly due to the PMR and it is dealt with separately - but don't diss pred for PMR. I've been taking various sorts of steroid for nearly 8 years. One form wasn't good, I did have some unpleasant side effects - weight gain and a beard - but the other sorts have been fine. I have lost the weight (much of which I had gained because of immobility due to PMR and long before pred), the beard has gone, I have no signs of raised eye pressures, diabetes or bone density loss. Used carefully pred works well with minimal side effects - none that are worse than PMR anyway. Pred gave me my life back.

[piglette in reply to Js94947]

js94947 I assume you have no medical or professional training based on your post. Just because you had a misdiagnosis does not mean pred is not a wonder drug if prescribed for the correct diagnosis. I do find you telling people not to use prednisone unbelievable based on absolutely no research and it seems professional knowledge on your part whatsoever. In my opinion your post is unforgiveable.

[Js94947]

And your medical training. Pregn is prescribed way too often when doctors do not have a diagnosis. I have read extensively about GCA and PMR. GCA almost killed my sister, we come from genetics way back that involve this auto immune disease. Your ignorance in research and questioning treatments that may be harmful to some is unforgivable. Is your ignorance bliss?????

[PMRpro Ambassador in reply to Js94947]

The genetic link is the least of the aspects of GCA and PMR. There is a slight increase in rate amongst people with Scandinavian heritage - but it is not a genetic disease. There is merely a slightly increased propensity to develop it.

Pred WAS used too often "just in case" in the past, now it is used for proven inflammation IF IT WORKS. If it doesn't help - it is not used.

On this forum there is one group of drugs that is known to work for the disorder we have: corticosteroids. You do no-one here any service telling them to stop taking pred. Some of them could go blind on your advice. And as you are obviously aware, unmanaged GCA can kill.

[Js94947 in reply to PMRpro]

You misconstrued my message. I shared my story. I emphasized to be cautious about pregnosone, genetics matter a lot in histories of individuals. I mentioned that pregnosone can be over prescribed, PMR has is a hard diagnosis. Five years on pregnosone is over the top.

[piglette in reply to Js94947]

In the US pred may be prescribed too often when doctors do not have a diagnosis, I do not have the knowledge to comment. However it is definitely not true in UK where most doctors are very aware of prescribing corticosteroids and their possible side effects and are usually very careful to minimise the dosage.

Your comment "Your ignorance in research and questioning treatments that may be harmful to some is unforgivable. Is your ignorance bliss?????" could very well be made of you yourself! As PMRPro says you are not helping people on this board telling them not to take pred. That really is unforgiveable.

[Js94947 in reply to piglette]

That is what you want me to say, I said to question the use of pregn. Some side effects such as necrosis can be serious. I am not going to take any more time arguing with you about what I SAID?