Help! increasing the pred doesn't seem to be working.

[suzy1959]

I am really stuck and don't know what I should do now. When finally diagnosed and put on 15mg pred.on 1st December, within 3 days ALL the pain was gone. 10 days wonderfully pain free and I reduced to 13mg but then had a fall and cracked my ribs so was on pred and diclofenac for the rib pain. On 1st Jan I reduced to 11mg and feeling OK and rib pain was improving all the time, but then got a very nasty virus on 12thJan. I was very ill for at least 10 days. I saw the Rheumy on 17th who said he thought I was having a flare and to up the steroids until I felt well. I went up to 15, then 20 and now I've been on 25 for a week. I am still having symptoms and last night I was up for 2 hours with the old familiar aching legs and they are still aching now as well as my back and arms- all so familiar. At the same time I am getting some side effects of the pred- much increased hot flushes, water retention, thinning hair , very bad taste in my mouth etc.etc. So I am reluctant to increase the pred still further . Do I just keep on increasing until all the symptoms are gone or am I on too much already? This PMR is really confusing! By the way , my blood test on 17th Jan. showed a reduction of ESR from 34 to 16 and CRP from 20 to 17. My Vitamin D is now just in normal limits.This was before I increased the dosage.

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Hello Suzy,

I am no expert on PMR , but I have had it for 14 months now and been on Prednisolone since last March on a gradually reducing dosage.

I wouldn't increase your Prednisolone further without telling your doctor, as Prednisolone is not a very nice drug as you are finding out!

My Rheumatologist advises the lowest dose possible that keeps me comfortable

-but I don't think it is realistic to expect all your symptoms to go, at best , mine are manageable, today I have aching and stiffness in my neck, arms and knees.

Your blood results are heading in the right direction so maybe another chat with your doctor may be best.

This is a difficult illness to manage , you are doing fine , it's early days yet , and it does take a lot of getting your head round!!

I find that if I push myself far too hard and don't make allowances for the PMR and then it comes back and bites me in the bum!

Hope you are feeling better soon,

Karen.

[Polywotsit PMRGCAuk team member]

Hi Suzy, like Karen says, it's not a good idea to up your dosage any further. The British Society of Rheumatology's guidelines are that people should start on 15 to 20 mg and reduce from there. The higher you go, the more pred you will be taking cumulatively over time, and this is what they are trying to keep down. It really is early days for you at the moment. You may have a couple more flares before it all settles down. While there are undoubtedly people who just sail through without too many problems, we are learning of hundreds for whom being on steroids is a bit of an up and down affair.

Don't be afraid to use a painkiller such as paracetamol to help you. Taking four doses a day of two tablets at a time is not going to do any harm in the short term. And as Karen says, some people find that they are never completely painfree, and the steroids, rather than obliterating all the symptoms, make it possible to live a reasonably normal life. Over time I found that as long as I had my mobility, I could put up with a certain amount of pain. You have to let it live with you and you live with it, until you know what combination of symptoms versus medication is best for you. Having said that, some people really can't tolerate the steroids and in time they may be put on a steroid-sparing drug. Others, and I was one of these, never had particularly high blood results but had quite severe symptoms all the same.

Try and keep your carbohydrate intake reduced as much as possible while you are on 15mg or more because pred does raise your blood sugar. Keeping this under control will ease any strain on your adrenal glands which, in turn, might help the hot flushes.

Have you had a pmrgcauk info pack? If you send an email to [e-mail] with your address we can get one in the post to you

K

[kavidacat]

I can't believe you are taking prednisilone so randomly and without, it seems, proper instructions from your GP. You should be started on a dose of say, 20mg then reduce after two weeks to 15, then after 3 weeks to 12, then after 8 weeks to 10, then reduce to 9mg after 12 weeks and longer each time you reduce one more mg. If you suddenly get the pain back you will need to start again, but maybe from 15mg (ask your GP) and continue reducing as before but STOP one reduction before you reach the point where the pain came back before. Hopefully this will work for you, The important thing is NOT to rush it, steroids need careful handling and should be brought down SLOWLY. Good luck x.

[Celtic PMRGCAuk volunteer]

Suzy

Have you got a rheumatology helpline at your hospital? If so, it might be best to contact them for advice. You should not be left alone to increase your dose as you are doing.

Your blood test results were looking encouraging, heading in the right direction, so it could just be that the virus got in the way of contining improvement.

Important to remember that very few of us are pain-free down through the doses. I was able to use my regular blood tests as a guide to whether to reduce or not - some people with normal markers at the outset are not so lucky and have to rely purely on their symptoms.

I do hope you will get some expert advice and feel better soon.

[Pipistrelle]

I found I often needed to tough it out to some extent at a given level to wait for symptoms to reduce. I think your first reduction was too soon. Generally the very minimum at a level is two weeks -- and then you had a number of health issues that can cause additional pressure. As others say I'd check with your rheumatologist about how and if and when to increase as you are going up in some fairly big increments.

Celtic is (unfortunately in this case! ) right -- really despite what many GPs and rheumies say and think, the reality for us with PMR is that most have pain ongoing and are not pain free except (I have found) at the initial high dose of steroids and then at the very end of reductions before going off entirely. I always had morning stiffness, sometimes to the point where I could do little til it subsided in a couple of hours. I always had some disability and pain doing certain things over the past 18 months. Only now, when I am at 1mg-.5mg, has the pain gone and morning stiffness gone.

You can use some normal over the counter painkillers but do it in consultation with a GP/rheumatologist as NSAIDS can cause stomach damage used alongside prednisalone. I took Tylenol now and then to take the edge off PMR pain, and needed to use naproxen or ibuprofen for a while at low dose when I had complications with knee inflammation (on professional advice).

But I would probably want to talk at length with your rheumatologist in your shoes -- to see whether they believe the diagnosis is the right one, if it is; to get advice on how to manage your current setbacks best. If prednisalone at hgher and higher doses isn;t addressing pain then they may well want to reconsider whether they are treating you for the right condition or if there's something going on alongside the condition. I'd not want to be fooling around on higher and higher unsupervised doses of something as powerful, with as many possible side effects, as prednisalone.

Best of luck -- let us know what advice you get!

[suzy1959]

Well , it seems I have a lot more to learn about all this. I am sending a message to my rheumy now to see what he advises and I will just have to start reducing asap. Unfortunately, due to my current bad insomnia (partly PMR pain and partly high pred.)I fell down the stairs in the dark at 4 this morning. So, more pains and bruises and such a sore ankle that I can't walk to exercise for now.