Advice please

[pastamaid]

OK So I started feeling achy and stiff 5 months ago. Went to GP and they ran tests, CRP and ESR up everything else OK. Doctor referred to Rheumy specialist. At my next appt 3 weeks later the aches were getting better so he repeated blood test and still up.

Since then, letter from rheumy saying they wont accept referral as unnecessary just treat PMR, asked doctor whether i should go on Pred with very few symptoms. He said specialist knows best.

I asked to see another GP and to be re-referred to rheumy as wasnt happy to take pred if i dont need it, unless the blood count shows that it will affect my health.

2nd GP said same as first and refused to answer question of health worries versus pred.

So here i am, cant see rheumy without paying £250 for initial consultation, which is OK but if they ask for more tests, wont be able to afford it.

I am so frustrated, you go to NHS for information and they cant give me anything.

I know its difficult to pin down but just advice as to pred or not.

Is it worth taking if i have very few symptoms, just because of bloods?

Sorry for the long post, but maybe someone can help me more than my Gp's

Thank you

[PMRpro Ambassador]

I would say the primary reason for taking pred is intolerable symptoms that are affecting your quality of life. However - if there is a lot of inflammation it will be doing damage to soft tissues in the body. You are possibly in the early stages, it may get worse, and it was obviously bad enough for you to go to the GP about it in the first place.

If I were you, I would ask to try 5mg for a week or two to start with and see if that is enough to make a difference. If it doesn't try 10mg. If it really isn't too bad, you should get away with a very low dose, you will feel better and reduce risks due to the long term inflammation. YOu wouldn't stay at 10mg - you would then taper slowly to find the lowest dose that works.

But it is really your choice I think,

[pastamaid in reply to PMRpro]

Thats so helpful. Thank you. I will challenge my doctor again. Finally, someone who listens to me and doesnt make me feel like a pain. I'm so grateful xx

[pastamaid in reply to PMRpro]

Latest info. Doctor has called and wants me to start 15mg for 3 weeks then 12.5mg and dropping to 10mg. He also said he wants a blood test after week one of the steroids to see if they are bringing the numbers down. Is this too soon for them to be going down? I read on a help page, that the doc usually does a blood test after 3 weeks and checks numbers. Sorry for all the questions, but I dont really have much faith in the GP and have no experience of taking steroids. Thanks for any help

[PMRpro Ambassador in reply to pastamaid]

Difficult to say - some people find the markers fall quite quickly. You will have to try it and find out. The symptoms are far more significant than lab results - but some doctors get very tied up with numbers.

[pastamaid in reply to PMRpro]

Thanks again

[Koalajane]

perhaps I shouldn’t say this but it is your body. If prescribed steroids you don’t have to take them if you if you feel they are not necessary

[DorsetLady PMRGCAuk volunteer]

There’s a reason why your bloods are high, so if not PMR then what?

Problem is, all they show is that there is inflammation in your body, but not what is causing is, so it’s fairly natural for doctors to tie those with the symptoms you describe and plump for PMR - if that’s what is sounds like to them.

You do need to be aware that uncontrolled inflammation can be doing damage to your body… and even a short course of Pred may reduce that. Plus untreated PMR [if that’s what it is] may lead to GCA - when even higher doses will be required.

However at the end of the day it’s your body, and ultimately your decision whether to take Pred or not.

[piglette]

Around 75% of people with PMR only see their GP and never see a rheumatologist. It is in general considered an illness that can be treated at primary care level. I was in such excruciating pain and was told I had a virus by my GP I went privately to a rheumatologist, if I had been offered steroids by my GP I would have only been too happy to try them for a few days to see if they worked. In fact I had a magical result within twenty four hours. I would definitely accept the offer of steroids if I were you. If they don’t work in a week or so just stop taking them. To actually get an appointment with a rheumatologist on the NHS can take six months.

[Indigo2417 in reply to piglette]

I had a little wry smile at the 6 months wait for an NHS rheumatologist. Last August I was told I would be waiting 2yrs 7mths. I was lucky that I could get a private consultation.

[piglette in reply to Indigo2417]

In Ireland I hear people are having to wait five years!!

[Indigo2417 in reply to piglette]

It doesn’t bear thinking about, does it.

[HeronNS]

It seems to me that a GP who recognises PMR and is willing to treat it is your best bet. There isn't a large suite of medicines which work for PMR, and at least pred has been used for many years, the possible side effects are known and for the most part can be mitigated if any affect an individual patient. I like PMRpro's suggestion that you try as small a dose as possible. Usually we are recommended to take more than we'll actually need in order to clear out the inflammation more quickly, and then titrate down. I always felt I might have been able to start at 10 mg, not 15, but in fact I was able to reduce to 10 mg within two months and was taking 3 mg by the end of one year.

I hope that when they ran the tests they were eliminating other possibilities for the pain? PMR is often the diagnosis when everything else checks out as okay. The final proof, if it can be called that, is a good response to a moderate dose of pred. (Fibromyalgia, for example, doesn't respond to pred.)

[pastamaid in reply to HeronNS]

Thank you, they did a bank load of tests and everything else normal. I think i will go on all the recommendations here and go for the Pred at a lower dose x

[alangg]

I have to agree with Piglette and HeronNS - don't let your fear of steroids ruin your quality of life and expose you to the possible risk from uncontrolled inflammation.

Like you, I had pain and increasing stiffness for several months before a new GP joined the practice and was willing to listen to me and to a private Physio who had suggested it could be PMR. She said 'try 15mg a day for a week. If there is no improvement, then you can stop taking it after a week with no ill effects'. For me, it was a miracle drug - the pain and stiffness was gone the next day, I could lead my normal life again and I suffered none of the 'possible' side effects

I would try the Pred and see if it helps. You can always stop it if you aren't happy.

[S4ndy]

I agree with what everyone has said. I was reluctant to take prednisolone the first time I was diagnosed. I thought I was too young. In hindsight that may have been a mistake on my part as, although the PMR went into remission it came back much worse the second time. I cannot help wondering if it would have been better to treat the much milder symptoms the first time to avoid the far worse symptoms that I got a few years later. I have mostly seen my GPs who has been excellent. However, I was referred to an excellent Rheumatologist after a year of being on steroids. He not only helped me to find my stable dose of prednisolone but also prescribed painkillers to work on my severe osteoarthritis too. I only see him if I need to now and my care is mainly by my GP.

[AtopicGuy]

Raised inflammatory markers usually mean you either have a) an infection with a pathogen (virus, bacterium, fungus or parasite); or b) an autoimmune problem. If there are no signs of a pathogen, a short course of steroids is a good way to narrow things down. Leave the debate about what to do next until after you know whether your symptoms respond to prednisolone or not. If my GP hadn't given in to my pleads to try oral steroids in 2019, I'd still be in the dark.

BTW Are you most stiff in the morning, but it eases off?

[pastamaid in reply to AtopicGuy]

A little, but not really, its mostly when i sit for a long time working, that i get a bit creaky

[AtopicGuy]

Sadly, that's not uncommon at our age! My morning stiffness has become worse every year. I used to set the alarm earlier and earlier to get to work on time. Eventually, to set off at 8am, I was setting the alarm for 5.50am. These days I have breakfast in bed at 7am, but struggle to rise before 11am. Prednisolone makes a huge difference, and kicks in within a day.

[pastamaid in reply to AtopicGuy]

I started today so lets see. I wont have the results that other people have had, because fortunately for me, I didn't have severe symptoms, but the thought of not getting out of a chair and hobbling about for a minute, until you get moving properly again, sounds good. Thanks for everyone's help. You can get wrapped up looking at the hoor stories of pred, so hearing a realistic view is very reassuring.