PMR, DIZZINESS
Posted , 9 users are following.
Am I mistaken, or have I read messages regarding dizziness related to PMR and/or prednisone? Thanks.
2 likes, 12 replies
Posted , 9 users are following.
Am I mistaken, or have I read messages regarding dizziness related to PMR and/or prednisone? Thanks.
2 likes, 12 replies
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vawils kathy67492
Posted
yes i am sure there have been posts including one i posted a couple days ago about taking melaxicam with prednisone and having some dizzy/vertigo episodes and not sure whether to attribute it to pmr, melaxicam and or prednisone. Know that dizziness is a possible side effect of the medications for sure for some people. Not sure if you are dealing with dizziness yourself. i know that i definitely had even when i was just on prednisone before the melaxicam but worse once i started the melaxicam.
EileenH kathy67492
Posted
Some people have found they feel quite shaky at times whilst on pred - some would have found it difficult to say if it was dizziness specifically. But yes - it has been mentioned in PMR posts.
ann98860 kathy67492
Posted
marykay62062 kathy67492
Posted
mary238 marykay62062
Posted
EileenH mary238
Posted
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!
GM70 EileenH
Posted
jean39702 GM70
Posted
EileenH GM70
Posted
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.
GM70 EileenH
Posted
StarGramma kathy67492
Posted
That is my question too. I have recently been diagknosed with polymyalgia, and my primary care physician highly suspects giant cell arterits as well, due to severe eye pain and headache accompanying all the usual PMR symptoms. The mention of dizziness caught my attention also, however, as that has been an ongoing problem for quite a while accompanied by balance problems. I have been through so many tests for the balance and dizziness issues that it is embarrassing. If it is something experienced with polymyalgia, maybe that is an explanation. I just hate to feel like a hypochondriac, but I need to be able to care for my husband who is an invalid, and my health problems interfere with that. I hope that if the polymyalgia IS related and treatment makes this issue better I will once again be "myself" and able to function well for his sake as well as mine. I am so tired of being in constant pain and being exhausted ALL the time! Just started high dose prednisone. Today will be day 3 and pain is significantly improved though still running low grade fever. Hope balance and energy improve. It would be fantastic to have energy back. Then I need to deal with the high dose prednisone thing with my doctor. My husband's bone loss is due to unavoidable use of prednisone over a long period so I am well aware of side effects. I just have so many questions.
EileenH StarGramma
Posted
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.