Increasing my medication

[spearce]

I have been struggling for 5 months and still dont seem to have my symptoms anything like under control, for any length of time despite trying raising to 18, and splitting the dose. There is constant pressure from, first the rheumi, and now the GP to reduce, but I'm wondering if I'm just someone who needs more because I don't absorb it so well. During the day, I move from being blissfully pain-free, to sometimes hours of bad pain usually in the afternoons. Discomfort, I expect but I am sure it isn't meant to be as bad as this. Do you think I should suggest to the GP that I try 20 for a while?

[PMRpro Ambassador]

What did you start on and for how long? And has you doctor been checking the ESR/CRP along the way?

[spearce in reply to PMRpro]

ESR/CPR tested at beginning by GP said to be normal so she said it wasn't PMR, so saw private Rhemi (Feb). Started on 15. Told to stop because did not improve much for 8 days (then improved a lot). Total crash when tried to follow his advice. Same again when tried to do his rapid taper, so started again (independently). He had told me to reduce to zero within 3 months because he doubted diagnosis. Failed again. Tried slightly higher dose (17-18)(independently) and things got better though very up and down. Told to reduce by 1/2 a month and now under new GP. At least PMR is now 'working diagnosis' . I'd at least like to try 20 just in case. (I have a small private supply). Incidentally I have no obvious side effects (including either weight gain or euphoria) which makes me wonder about absorption rate. Thank you so much for being there. I SO appreciate what you do. It is such a lonely painful journey, as you so well know.

[PMRpro Ambassador in reply to spearce]

You really have been messed about by ignorant medics. Not everyone is the same and a week at 15mg is not long. That's why the current guidelines suggest more may be necessary.

[spearce in reply to PMRpro]

What annoys me is that they don't even keep up with the research and charge us hundreds of pounds. What do you think I should do next? Thank you so much.

[Blearyeyed in reply to spearce]

If they aren't totally confident with the diagnosis , have they made proper efforts to investigate if you have something else , or have another condition alongside the PMR that may be contributing to the pain but is not controlled by Pred?

They are letting you down .

Yes , at the moment maintaining a dose that you can cope on is far more important than tapering and they should realise that.

In fact , they should not be encouraging you to reduce your dose until they have properly examined and tested you for other causes of your pain and got that properly under control with other medication.

If it turns out then that it would be better for you to be on a different type of treatment that treats the PMR and any other underlying condition then so be it.

If you were willing to try a private Rheumatologist first time around you may benefit from finding another one or getting an appropriate referral via the GP for a second opinion.

[PMRpro Ambassador in reply to spearce]

Finding a different doctor might be an approach. But I don't know your situation. And if you go privately again you need to see a realistic expert in PMR.

[katiemills]

It was a long time before my diagnosis and when I started on 15 mg it helped but I wasn't pain free until I insisted to increased to 25 mg and then 30 mgs in October 2018 . 15mg is the usual starting dose but some people do need more. I've refused to taper at the speed both my GP and rheumy want me to and have managed to reduce to 13mg following Dorset lady's tapering plan . My ESR/CPR tests last time were only slightly but my PMR is still pretty active .I've just started Methotrexate to hopefully help with the steroid reduction . It sounds to me like you need to change your medics who let you manage your condition ( with the help of this amazing forum)

.

If PMR is questionable in your case have they tested for other things ? They did with me. Do you feel your symptoms are typically ones of PMR ?

Someone else on this forum had a diagnosis of PMR but now it turns out that they have palindromic rheumatism .

I doubt if you'd necessarily feel euphoric at such a "low dose" , or gain weight , but I'm no expert . Good luck !

[spearce in reply to katiemills]

Thank you that was really helpful as it was what I felt would work better for me. They seem so fixed in their textbook ideas, but it's how to sell them an alternative without them getting tight-lipped!

[clieder]

Check with some of the pros, but I find it unusual that PMR would cause afternoon or evening pain while on that dose of pred if you are pain free earlier in the day. We usually wander around stiff and sore until noon and then it is usually at its prime and only by early morning hours has waned. Could that be significant in diagnosing what else may be going on? So puzzling.

[spearce in reply to clieder]

Thank you for that thought. It is probably worse in the afternoon because I take the pred at 2am, so mornings are not too bad!

[PMRpro Ambassador in reply to spearce]

If the effect isn't lasting a full 24 hours it sometimes helps to split the dose, with about 2/3 in the morning and the rest later in the day - it is possible to adjust it so you don;t have to wake at 2am too!