Yet another flare, but not due to reducing too quickly I think

I have been reducing very slowly- 0.5 mgs per month. At the beginning of February I went down to 8mgs. As usual, I had a few days of withdrawal pain and was never without pain, but thought it was going away. On Friday I went to London for a conference and just seemed to go downhill. By 3 o'clock I had to go home, feeling completely worn out. I rested as much as I could over the weekend, but by Tuesday, I was feeling really rough- lots of pain in back,hips,shoulders and especially in my left groin such that I could only limp and crawl upstairs. That day I decided to go back up to 9mgs and now the pain has considerably lessened and I can walk and get up stairs. I still have some pain, but it is much better. I have felt that since coming down from 10mgs, I have only just been keeping the PMR atbay because any extra activity seems to have affected me. What makes me feel bad and quite pessimistic is that I am still on quite a high dose considering I have been on the Pred. for 15 months now and actually had PMR for 2years. I so want to get to a lower level but don't seem able to. I don't know how common it is to be needing such a high dose for so long. Part of me wants to try to forget all the bad things about Pred. and just take a dose I am comfortable on, but the other part of me wants to be on as low a dose as I can bear!

I have been taking Leflunomide and hoping that it will kick in soon, but this latest flare might suggest that it isn't going to work.

I found out a friend of mine was diagnosed with PMR much more quickly than me only 4 months ago, is on the same dose as me and is feeling pain- free and well with no apparent side effects of the Pred. It just doesn't seem fair!!!

9 Replies

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  • I think your instincts are right, Suzy. You need to get to a dose which makes you comfortable and stay there until you feel confident to reduce again. If you are forcing reductions just to be able to say that you are (even to yourself) is one thing which simply does not work and the end product is that you still feel awful while coping with side-effects. In other words you are experiencing all the downsides while getting no benefit whatsoever from the Pred.

    I think you also know that you can't compare your journey to any other person's trek. There will never be two different people mirroring each others problems and who knows who will encounter what problem in the future? I would certainly never want anyone to have followed mine!

    10mg is known to be one of the sticking points and as far as I am concerned if you have had trouble at that point then a very long slow reduction process is what you need. Some can manage a 0.5 reduction a month, others just can't quite make it and taking a few weeks longer to complete the reduction successfully often wins the point, and you are comfortable during the process.

    There are on here the reduction regime posted by PMRpro which has been used successfully by many particularly at the more noted sticking points, 10mg and 5mg. Do have a look at it.

  • Suzy - don't feel a failure for only having got to 10mg after 15 months! It is simply that the current level of the underlying autoimmune disorder is high enough to still cause a fair bit of inflammation and you need 10mg to deal with it properly. Everyone's disease level is different - like diabetes, some people need more insulin than others.

    As for how common is it to need a dose that high for that long - very, if my experiences on 3 forums are anything to go by. Too many people (patients and doctors of every level) seem to think that once you start on pred you are reducing to zero. You aren't - you should be reducing to the lowest dose that controls the symptoms. That's what is says in all the textbooks and guidelines and that is what works. Reduce too far, the symptoms will return. And the cause of flares, by and large, is reducing too far. When you yo-yo the dose it becomes harder to reduce.

    This isn't meant to sound depressing but I will have been on pred for 5 years come July. For the vast majority of that time I haven't been able to get below 9mg without a flare. Two years ago I had a major flare - I'd been switched from UK enteric coated prednisolone to Medrol, methyl prednisolone, supposedly better and what is approved here in Italy for corticosteroid therapy. UK pred had been OK at 17.5mg every 2 days (alternate day therapy), no side effects, worked well, but Medrol at 10mg caused side effects (weight gain, dodgy skin, muscle wasting and a dark beard) and it didn't work as well, I had to raise the dose to get any relief. I ended up in hospital for 3 weeks with a back in total spasm, the treatment triggered atrial fibrillation and I spent 3 weeks in hospital - it was meant to have been 3 days!

    When I came home I was on crutches (they'd given me a statin that floored me totally), I needed 20mg Medrol to function at all and it took until early afternoon to work. I tried taking it at night - that was better but the consultant didn't like it. So my GP suggested we tried a new version of prednisone called Lodotra - I immediately went to 15mg - and it worked. That was 18 months ago - I have reduced at snail's pace with my lovely GP going "Slowly, slowly!" through out - I can't go slower! But I am now down to 5mg. I've lost 35lbs in weight, my skin and hair are back to normal and I feel well. Last autumn was the first time I had been below 9mg in 4 years. I have no osteoporosis, no blood sugar problems - cholesterol and BP are up a bit, I'm on BP tablets but not statins. I know a lot of people who have got stuck just below 10mg - it is very common. It may be these are people whose adrenal glands aren't working but they need a bit more pred, it's more usually 8mg that is the borderline.

    But it isn't the end of the world - pred keeps you mobile. Immobility is the biggest risk factor for osteoporosis. It allows you to function - or you would be depressed, miserable, bad-tempered maybe. You might be bad enough not to be able to work, need anti-depressants.

    You were already teetering on the edge of a flare - and then you went to London. For a conference. Hmmmmm!

    By the way: the Bristol group under John Kirwan give 6 weeks each of 15 and 12.5mg and then leave the patient at 10mg for a year before reducing any further. That's 15 months and the patient is still on 10mg but they won't have tried to get lower in that time at all. They find this leads to flares in 1 in 5 patients instead of 3 in 5 which is the usual rate. So you're actually doing fine by their standards.

    Nearly forgot: when you reduce too far and end up having to go up to deal with the flare you have lost all the advantage of the lower dose - and probably ended up needing more pred overall as well as the yoyo effect making it harder next time round. Kate talks about it in her book.

  • Hi PMRPro sorry to bother you again but I am in real trouble at the moment and would appreciate your feedback, Having got down to 10 mg from 40mg of prednisolone (I have GCA as well as PMR) in nine months I have hit the wall with a massive flair up, unbearable hip back neck and leg pains I increased my pred to 15 mg two weeks ago with no relief whatsoever. My very supportive GP has retired and I feel almost unable to cope at the moment.

    I am seriously. Considering going back to 20 mg but would feel as if the disease is beating me and don,t know what to do

  • I would have said that getting from 40mg to 10mg in 9 months when you have GCA was VERY fast and it isn't surprising you have flared. The most recent research shows that there is still considerable inflammation present even after 6 months at much higher doses than that. You need to go back to a GP - you must have a replacement and request an emergency rheumy appointment if they won't help.

    This is never a case of "the disease is beating me" - it is there, you yourself can do nothing about it and you have to wait for it to go away. It is, however, possible it is something else making things worse - you need an expert opinion.

  • Thank you so much, both of you, you have made me feel really supported in this fight. The doctors are always so keen to get me to reduce that I can end up feeling a failure if I can't manage it. Where would I be without your experience and support? Feeling much more miserable I'm sure! You are right too that keeping mobile is so important and I really haven't been able to do much in the last few weeks which makes a reduction quite pointless. I am very glad to hear that you, PMrpro, have been able to lose weight as you have come down , because that aspect has really got to me and I do feel like a beached whale most of the time now and have found dieting almost impossible when I am in pain- another reason to stay on a higher level of Pred. I now realise.

  • Suzy .. So sorry to hear you are still having bad time. Have you downloaded Kate's book yet?

    I have been stuck on 5mg for several months now because I didn't want to risk another flare up and I was still a bit achy and stiff towards the end of the day. I read Kate's book and tried one suggestion of splitting my pred dose. I take half in the morning and half later on so it has kept me going longer through the night. I have actually had some good sleep for the past six nights. I have taken a maximum of three paracetamol during the night too when needed but have tried to last out with one. On Wednesday I reduced to 4.5mg and will do 4.5 again tomorrow. Depending on how that goes I will decide whether to do three days on the lower dose next week - probably will continue with 5mg for 5 days and 4.5 for 2 for a bit longer. I don't want another flare up.

    Hope you are feeling better soon.

    Penny

  • Suzy, I should have said that a) I'm on 5mg daily, have been at that dose for 18 months (I think; times flies when you are enjoying yourself) and will never be on a lower dose as I am steroid-dependent, and b) I have lost all but half a stone of the 3 stone I piled on to begin with in spite of the fact that my mobility is not very good. I did find that as I gradually reduced from 10mg down that the weight began to slide off with the reduction so there is hope all round for you!

  • reading your story made me think I can't remember writing this as in many aspects you have mirrored my own thoughts and feelings. I just feel a failure at times, I manage to get to 8mgs a day and feel goodish and then go for the next step and bam back where I started again. I have been like this for 3 years. People say I need to be on a lower dose as steroids are bad for you but I would rather have the bad side effects and be relatively pain free. I have diabetes thanks steroids and am overweight, I half now lost 2 stone but my waist looks like I'm pregnant at 63 lol it just seems a never ending battle with either the PMR, weight and everyone else's opinion of what is best for me but only this week I have thought I know what is best for me and will continue on 8mgs till I feel able to cope with anything lower and it could take months but!!!!!!

  • "People say I need to be on a lower dose as steroids are bad for you" - so is untreated PMR inflammation. Long term inflammation in the body can lead to you developing GCA and even cancer. Taking pred reduces those risks. Yes, there are risks with taking pred - but once you are down to about 8mg those risks are thought to be minimal since that is the amount of corticosteroid that the body make itself, it is essential for life. Not taking pred if you have PMR also leaves you pretty immobile - a far higher risk factor for osteoporosis. Being in constant pain will lead to depression.

    "everyone else's opinion of what is best for me" - they can express an opinion when they have walked in your shoes for few days. When they have fought pain and stiffness, been unable to get a mug out of the cupboard - or lift the kettle to make a cup of tea in said mug.

    Failures? That what they are - not you.

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