PMR, DIZZINESS

Well that is strange, because i have been on 15mg too long so i asked doctor yesterdayto take me down to 12.5 which he did, then he said in a month he might start me on mex ? I dont know anything about it, then he gave me tablet for once a week to take sitting down for my bones , i looked and it got loads of side effects. He said he only tests for ESR . I hope we find answers on here x

If you follow this link

https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316

it will take you to a post on this site which has several links in it to places you can get info that is safe, reliable and moderated by experts. 

The final link on it is to a paper written by one of the top UK PMR groups with advice for family doctors about managing PMR. They start patients on 15mg for 6 weeks, then 12.5mg for 6 weeks and 10mg for a year before reducing 1mg per month.

If you have been on 15mg too long it is partly the doctor's fault for not providing you with a suitable reduction plan. This one from the Bristol group is quite good and is slow enough to reduce the rate of flares to 1 in 5 instead of 3 in 5. However, some of us suspect their flares are not flares of PMR but pain due to steroid withdrawal and this can be avoided by going much more slowly, 1mg at a time even earlier than 10mg and also spreading the drop over a few weeks. Doing this patients are reducing steadily to well below 10mg and even further without adding in any other medications. The additional drugs like methotrexate haven't been shown to be a certain cure and really should only be used for patients having difficulty getting below 10mg. They don't do anything for the PMR, just may allow you to get the same effect from a lower dose of pred but they don't replace the pred. In the medical literature it has been recorded that about a quarter of patients are able to get off pred in 1 to 2 years - but they are at a higher risk of having a relapse than other patients who are on pred for longer. About half need pred for 3 to 6 years, the other quarter need pred for a longer time, albeit at a low dose. Before you take alendronic acid (the bone protection stuff) you need a dexascan to see what your bone density is like now - if it is good you don't need AA yet. I have never taken it and after 5 years on pred my bone density is practically the same and wouldn't suggest to the doctors I need it - and my pred dose was over 15mg for about half the first 3 years. If you have a history of any gastric issues you mustn't take it. You DO need to be on calcium and vitamin D supplements - and if you do decide to take the AA you must have your calcium and vit D levels checked first - if they are low that must be sorted out first or the AA simply won't work the way it should. 

The link I have given you will take you to sites where you will find much more information about everything. One is the UK northeast region support site and another its associated forum (at forumup) with loads more members than here as well as lots of pinned posts with info. There is another site and another forum too. The paper I have mentioned was written for GPs - so if it is your GP who is looking after you show it to them. Rheumatologists might get a bit sniffy but some of them could do with reading it too. 

If you have more questions - ask! 

Please, could Eileen or anyone else help me.  I am female, aged 70. About six weeks ago I was diagnosed with PMR. My first blood test in June my ESR was 32. My GP said that my symptoms could be related to PMR and he prescribed 15mg Prednisolone. After about 5 to 7 days on the Prednisolone I had relief from my symptoms. My symptoms were stiffness and heavyness in the muscles of  my legs and walking was becoming very uncomfortable. Also stiffness in my neck and shoulder muscles. Also my sleep was disturbed. I became very stiff in bed and had difficulty turning over. I became very tired easily and any activity like gardening left me feeling exhausted the following day.I have had no pain, just a terrible stiff and heavy feeling in my muscles and aroung my hips also lifting my legs up whilst driving was becoming increasingly difficult.  The symptoms had been getting worse over the last six months, or possibly longer. I couldnt believe the difference the Prednisolone had made in such a short time. The heavyness and stiffness in my legs had dissapeared I was no long stiff in bed and I was sleeping properly again. Also I was no longer feeling tired and I felt I had much more energy.  Unfortunately this was not to last. After three weeks on 15mg Prednisolone my GP lower it 12.5my. At the same time as my Prednisolone was lowered I started to get problems with my head, very slight headache, feeling slightly dizzy and feeling a lot of pressure in my head.  This would come on about an hour after taking my Prednisolone, it makes me feel quite unwell. It lasts all day but does ease slightly as the day goes on but does not go away completely and then starts getting worse the following day when I take my Prednisolone again. Also I getting hot sweats throughout the day. After being on 12.5mg Prednisole for about 3 days my symptoms came back and they are now back to being as bad as they were before I started on the Prednisolone. After the three weeks on 15mg Prednisolone my GP took another blood test and my ESR had come down to 9. He also took my Serum C reactive protein level and this result came back at 2.6. I have never had this taken before. Each day now I have been feeling really unwell and also I find that my eyesight is quite badly affected after I have taken the Prednisolone. This does ease as the day goes on but my eyesight is quite blurred until after lunch. I had to return to my GP today. Unfortunately I could not see the same GP that I saw initially. I wanted to start reducing my Prednisole and come off it as I am finding it very difficult to cope with what I consider to be side effects but the GP I saw today has suggested that I increase the Prednisolone back to 15mg and he has advised me to stay on that dose for four weeks. I have said that I will try but I am feeling so bad on the steroids that I am not looking forward to this. Has anyone else experience such side effects. I know that I cannot suddenly stop the steroids but I am feeling so confused now I don't know which way to turn. I would appreciate any help and advice.   

So sorry to hear your concerns. This is a great  support group.!  Normally I would  leave it to those far more experienced than I to respond in detail; however, I'm concerned about the head and eye issues you're experiencing.  Please read Eileen ' s post immediately above yours.  You need to review the symptoms and suggested treatment for GCA.     

One thing you could try is taking your pred dose at night before going to bed. Your response to pred does suggest that it is PMR that you have and stopping pred will just bring those symptoms back, possibly worse. Some of us who weren't diagnosed for some time did become very ill and immobile with PMR, one lady was in a wheelchair for months before diagnosis - by which time it had developed into GCA with headaches and visual symptoms. That is a risk of not taking pred: PMR can develop further to GCA in any patient but the risk is higher for anyone with PMR who is not on pred. If you develop GCA you must be treated with pred to avoid blindness and the doses are far higher (40 to 60mg/day).

As Jean says, you do need to get your eyes checked to make sure it isn't GCA that is developing but it is also not uncommon to have such problems on pred. Usually these problems improve as your body gets used to the pred dose and then as it reduces. Unfortunately the side effects of pred and those of PMR can be quite similar - and hot sweats are one such case. PMR can cause hot sweats and so can pred.

You have to remember that you have a chronic illness, and one that can develop into something worse. I think your second GP is bearing that in mind in suggesting you stay at 15mg for a bit longer - as I understand it you didn't have these symptoms that resemble some for GCA when on 15mg. Is that right? He may feel the slightly higher dose is enough to avoid that. 

But above all, you will have to learn to live with a chronic illness - it sounds harsh I know but you are where you are, there is no going back to being in full health for you for some time whether you decide to stop the pred and put up with PMR or possibly risk even worse or whether you learn to live with the pred effects.

Jean's comment about asking about treatment for GCA does have some basis - but that would mean an even higher dose of pred. I think you have to go back to 15mg for at least a week and see if the head problems go away. But if they get worse you must go back to the doctor and discuss this further. Unfortunately there is no real alternative to pred, the options that are being tried mean you would have to see a rheumatologist and I'm not sure that you can assume they are all willing to use them. Pred is the first line treatment.

Thank you so much to Eileen and Jean for your prompt response. I am so glad that I found this support group. Your reply has been very helpful. My GP did print me an information leaflet, I have a very good, approachable, GP fortunately. The information on the leaflet was very limited but I have gained so much information from other people on the site. It has been a great help. Well, I grabbed the bull by the horns so to speak and took the 15mg of Prednisolone this morning. The dizziness and visual problems have not been quite as bad today. I did have a very slight problems with my head during the 3weeks I was on the 15mg but nothing I couldn't cope with but no problems with my vision. Everything became much worse with my head and the blurred vision started when I lowered to 12.5.  I will carry on with 15mg for four weeks as my GP suggests and see what happens. As my head and vision problem is a little  better today I will wait at least a week before I try taking the Prednisolone at night. As I said the symptoms with my legs has returned as bad as it was before I started the steroids. Strangely the only symptom that hasn't returned on the 12.5 is the night stiffness and I am fortunately still sleeping well. It is a very strange disease but as you say Eileen I have just got to get on and cope with it. I just hope my symptoms will improve again on the 15mg. Many thanks again. Thank you to everyone for the information on the site it is a great help to me as a beginner with this.

Poor balance is often found in PMR - because the muscles don't work as well as they should. However - if your doctor suspects GCA then the balance problems may be due to poor blood flow to the ear and all its balance bits. The eye pain as well really does suggest he is right. So I am very glad your doctor has started you on high dose pred. 

Don't get your hopes up too far though - because the tiredness and lack of energy are also due to the autoimmune part of the GCA and that isn't altered by the pred unfortunately, it is just managing the inflammation which causes swelling and pain. Take those away with the pred and the symptoms due to that improve. The actual disease is chogging along in the background and will continue to make you feel as if you have flu. The high doses of pred you need at first (how high by the way) will probably give you the Duracell Energiser bunny feeling - don't believe it! You are still unwell, your muscles will be intolerant of too much acute exercise and you have to learn to pace yourself. 

Once the symptoms are stable and as gone as they are going to you will start to reduce your dose - but don't worry about the long term effects at present. Bone density loss can be dealt with - but at the moment you need a dexascan to have a baseline for your bone density. You also need calcium and vit D supplements immediately - they can be enough to protect you from the bone density loss your husband has suffered. I have been on moderate dose pred for over 8 years, after over 7 years my bone density had not changed at all. Not everyone is affected the same way so developing osteoporosis isn't a given. But you need to know where you are - if your bone density now is good, calcium and vit D may be enough, if it isn't good now then you may need something. It doesn't have to happen. But even low bone density isn't as bad as the ultimate side effect of GCA - permanent loss of vision. You can do something about osteoporosis, you can't about being blind.

This is a very old thread - and to meet more people you would be better to start a new thread. In case you haven't found it yet, this is a link to the "front page" of this forum:

https://patient.info/forums/discuss/browse/polymyalgia-rheumatica-and-gca-1708

where you can scroll through all the threads and this

https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

(the third post down) is our resources post. In it you will find links to all sorts of useful info, including medical literature charity sites with lots of info, and other forums (all based in the UK but with members from all over the world. All with PMR or GCA). The Bristol paper (as we call it) has a typical good reduction scheme for patients with GCA and is fairly easy to read. Your doctor may be interested in it too.