Flare up?

[ClarkB]

I have never been quite sure on what is an actual flare-up. When I saw the Rheumatologist in April, he put on my notes that my PMR didn’t appear to be active. Have had aches and pains, and days when I’ve felt ‘peculiar ‘- erratic heartbeats, sweating, cramps, ‘fizzing’ inside my body and stabbing sensations all over. However, I felt looking at other posts mine seemed quite minor compared with the sufferings of others.

For the last three days I have felt dreadful, with severe back pain all the way down to my thighs. Paracetamol made no difference and the pain made me feel nauseous. When I got on a train I had to haul myself up, and found it difficult to climb steps. This morning I woke up at 4.00 with the pain, and sweating. I have been tapering my Pred, now 5/4 and wonder if I should up my dose due to this flare? and by how much for how long? I know I should perhaps ring the Rheumatologist, but for some reason, the worse I feel the less inclined I am to do so.

Apologies for not putting this in a nutshell, and don’t blame anyone for nodding off, but I still am confused by it all.

[PMRpro Ambassador]

I'd suspect you have dropped slightly too low - and the inflammation has built up again to cause a flare. You are also at the level where you adrenal function has to kick in again and it is possible that is causing some of the symptoms you have. But above all - that sounds very PMR-ish. I don't know how fast you have been tapering? Where were you last good?

If it were me I'd try a couple of days of maybe 7 or 8mg and see if I felt better and then go back to 5mg at the lowest for a while. But it is difficult to say how much you need - probably at least the dose you were on in April if not a bit more.

And do ask your GP to check out your heart - they may try to tell you that the erratic heart rate is due the pred. Maybe it is - but it may also be due to the PMR, my atrial fibrillation is according to the cardiologist. And it is better to do one too many than one too few checks.

[ClarkB in reply to PMRpro]

Thankyou so much PMRpro for your suggestions. I can’t say exactly when I last felt good since my initial dose of 20mg at the end of Jan this year. Felt good almost immediately and thought that was it! Plain sailing! My dose then dropped quickly, and since then came down by 1 mg a month until 5mg July. Rheumatologist suggested reduction of 1/2 mg a month using alternate day strategy which would take me to 0 by March. I decided to try a reduction plan suggested by D L of 5 weeks (or 7) starting August.

Until the last few days, I had not been pain free, but managed it- no longer like my old self, but went out and walked off the pain. Some days it’s not just about the pain, but strange feelings under my skin, hard to describe, and ‘stabbings’ + night sweats. Sounds have seemed magnified, a click, an object put down, or a voice!

This time it seemed different, more intense and severe pain, in the last few days. You mention upping my dose to 7 or 8 mg for a couple of days, so then back to 5 without tapering for a while? (Sorry, I need everything spelling out like a child.)

Regarding my irregular heart beats, in 2013 I had a 24 hour tape which showed up quite a lot of extra beats. I was told that sometimes these happen more frequently if blood pressure is not well controlled. I am on tabs for this, but have noticed that the erratic beats are more frequent and obvious since being on steroids.

[PMRpro Ambassador in reply to ClarkB]

Yes - some top experts in the field suggest adding 5mg to the dose where the flare occurred for up to a week and then immediately dropping back to just above where the flare occurred. That often works well enough to take out the inflammation that has accumulated because of being that bit too low and is causing the symptoms - and you haven't got to taper all the way back down. If it works - all well and good. If it doesn't, you have to decide in a Plan B. Which probably means going back up significantly and reducing far more slowly.

To get from 20mg to 5mg since January this year is pretty fast - PMR has a median duration of 5.9 years and the median time to get to 5mg is just under 18 months. Yes - some people get there sooner, I won't argue with that, but to get to 5mg in just over 6 months is very much an outlier.

I think you have been reduced far too fast - the aim with any drop should be you don't feel any worse than you did at the start of it. You are looking for the lowest dose that manages your symptoms as well as the starting dose did. I don't think that has been the case for you recently has it?

[ClarkB in reply to PMRpro]

It hasn’t been the case at all. I can tolerate a degree of pain, but this was something else. I don’t want to go back to square one, but reading the reduction plan of others it seemed as if I was racing past. With my tablets for blood pressure, I take them and don’t think about it. This seems to be a wholly different story though. I have to get my mind round taking it slowly, despite my fears concerning side effects. I already had osteoporosis, and that was one reason I didn’t want to be long on steroids. I also don’t take biosophomates.

I really appreciate your comments and information, which I will keep as a reference.

[piglette]

I had a rheumatologist that wrote to my GP saying I had no pain. That particular day I saw him I felt like death warmed up and had told him so, he also wanted me to reduce 2.5mg in three weeks, I was so angry, he just did not listen. As PMRPro says give a slightly higher dose a try and see how it goes.

[ClarkB in reply to piglette]

Thankyou Piglette. My Rheumatologist wrote, back in April that my PMR did not appear to be active. I assume that was based on the previous blood test. I also forget to mention things and somehow always sound chirpy, which may give the wrong impression. It does seem that Rheumatologists and doctors want you to get off them quickly. I want to also, not to mention the effects on skin and hair alone!

Will reluctantly go for a higher dose, but anything to get rid of the current pain!

[piglette in reply to ClarkB]

I think that is my problem, I come over all happy even though I am doubled up in pain. The nurse at the surgery actually said I was my own worst enemy. I think you are supposed to lie on the floor screaming, for them to think there may be slight bit of pain. I am really not sure why doctors think they know that the PMR is not active until you actually stop taking pred. There just seems to be a total lack of understanding in the area of PMR and steroids.

[ClarkB in reply to piglette]

I thought it was only me like that! He probably thought that I wouldn’t be smiley if I was suffering.

I think it was only when I had the tell-tale, not able to move my arm above my shoulder, or put it in a sleeve, that they considered the possibility of Polymyalgia. Prior to that, I think now, that when I used to go with other symptoms, I was told that I was a mystery to them. There are various clinics in the surgery, for diabetes, and other conditions, but had never heard PMR mentioned, let alone heard of it.

[piglette in reply to ClarkB]

I had never heard of polymyalgia either. I went to my GP who said it was probably a virus and that he had never heard of anything like it before but it was nothing to worry about and it would go away! It was probably a good three months of this when I decided to go privately to see a rheumatologist who did diagnose it in seconds.

[ClarkB in reply to piglette]

I wasn’t put on steroids until I saw the Rheumatologist. Despite the pain I wasn’t prescribed, due to the doctor not wanting to take chances. My ‘urgent’ appointment was 3 months away, so I went privately with only a two day wait, and was given a prescription to go to their pharmacy and take the first dose immediately!

[piglette in reply to ClarkB]

Very like me, I was given the prescription immediately and then had a load of blood tests done. The only thing was my rheumatologist was on holiday when I phoned up so I had to wait a week or so, absolute agony. My doctor did not even consider steroids.

[Rugger]

I recognise a lot of those symptoms! I have had 2 flares since being diagnosed over 2 years ago and each time have needed to increase the dose for quite a while to get on top of things, but I realise we and our PMR are all different. Click on my name and see the graphs of my doses and blood results, under the post 'Happy Birthday PMR!'.

Last year I had been tapering (DSNS) at 1mg / month and this year at 0.5mg / month.

Just about to start tapering to 6.5mg.

Hope you manage to get things under control soon.

[ClarkB in reply to Rugger]

Have had a look at your graph- very useful to refer to. I just write lots of notes when I remember. I also saw how you got your name- I thought it meant you played Rugby!

Interested to see that you were a nutritionist. I have always thought about consulting one as I am near vegan, and try to eat healthily. It gets more difficult when you look up what’s suitable for people suffering from Polymyalgia, when you’ve already looked for diets for Osteoporosis. There are so many foods which are recommended for one condition, but unsuitable for others.

Anyway, I had been all set for 5- 4.5 this month (Rheumatologist plan) but am going to go backwards for now. Thankyou!