Can anyone tell me if they have a problem with the shakes (trembles) I am down to 15 preds, Having days without pain, but totally drained

[estherdevers]

Spend 3 days hardly moving, only from bed to chair. Feeling shakey and giddy. Dr has checked most things, but has no answer to this one

[Hidden]

At somewhat lower doses I felt giddy at times when I reduced the dose and for a couple of weeks afterwards. However I wasn't shakey. It was a real nuisance and stopped me doing things and on one occasion I had to stay in bed for a day. My GP checked my blood pressure which was fine and said that she thought that it might be a problem with my ears. On the data sheet which came with the Pred it did say that this could be a withdrawal symptom. Have you dropped the dose recently?

At higher doses I had "wobbly legs" if I did too much(in the first year after diagnosis with PMR). Not that it took very much to bring it on. I just felt as if my muscles were very weak. Fortunately that went completely and I have not had that problem for over a year now although I do still have to pace myself. However that did not coincide with the giddiness.

Hope you feel better soon.

[kingharold11 in reply to Hidden]

How long is it since you were diagnosed and prescribed prednisolone? I was diagnosed in May 2011 having been ill for 6 months prior. Once they gave me preds I never looked back until I dropped down to under 10 mgs. Then the problems started I have had most of what you say, dizziness lethargy etc. I am now on 5mg and for the next 10 days or so will stay that way but I feel the tiredness coming back . Then I have to reduce very slowly to 4 1/2 but if I feel ill I will forget it for a bit longer. Most of the time now I feel as if PMR has gone away I don,t get any pains etc. only tiredness. Good Luck Wendy

[Hidden in reply to kingharold11]

I was diagnosed and prescribed Pred in September 2011. I was really lucky to meet a wonderful, knowledgeable GP trainee on my first visit and she ordered an immediate comprehensive blood test which showed very high CRP and plasma viscosity. From this she diagnosed PMR subject to the blood tests returning to normal which actually took 2 months of 15mg Pred and was rather slower than she expected. The lethargy was very bad for 6 months but has slowly eased since then. and I can do so much more now. The dizzyness was a problem which affected my attempts to drop from 5mg onwards. I have had slight aches all the way through and still do but these are liveable with compared to the initial pain and a lot of that may just be due now to the remaining muscle weakness. I must admit to dropping extremely slowly below 5mg and waiting until all of the dizzyness had been gone for at least 2 weeks before dropping again.

Hope you can continue to drop the dose without feeling too bad.

Pat

[Whittlesey in reply to Hidden]

Hi PatM, I'm glad you've reduced and are feeling better. You said that when you were first diagnosed, they found a very high CRP and high plasma viscosity. I haven't heard of a plasma viscosity test and would like to know more. I have GCA, have had it since 2012, I am taking 3mgs of medrol daily and 10mgs of methetextrate weekly. Two weeks ago, I missed two weeks of the methetextrate injections due to the holidays. My next blood text showed a very high CRP at 15 which had my doctors worried. I am now going for artery scans. I had the methetextrate and it is a little lower. No one has spoken of plasma viscosity. If it is a marker, I would like to have it checked. I am trying to avoid going to the higher doses of medrol, due to the Cushingoid symptoms that happen as the dose is lowered. thanks.

hope you continue to feel better. all my best, Whittlesey

[Hidden in reply to Whittlesey]

As I noticed that most sufferers had an ESR test not a plasma viscosity(PV) test I did some research on the web some time ago. PV tests the stickiness of a patient's blood and is a non specific test just like ESR and CRP. A high value linked with symptoms is used to diagnose PMR. Some Health Service Labs in the UK offer PV tests as an alternative to ESR. One of the advantages seems to be that the blood does not have to be tested so quickly as for an ESR test. Probably an advantage round my area. Whilst I live in the same city in the West of England as my local hospital, it does serve a large rural area which might make transport of blood samples slow. I noticed that the Highlands and Islands(Scotland) were changing to PV testing and some other large rural areas use it. The downside appears to be that changing over involves new equipment and retraining. There are claims on the internet that PV is the slightly better test but I do not know enough to comment on the relative merits of the tests. From a patient's point of view PV has a small scale, my result of 2.05 was very high and it is now 1.7 which is normal so changes are measured in decimal points. By contrast my CRP at diagnosis was 56 and is now 1.

Hope you feel better soon and also that the weather improves so that you are able to have the tests and treatment more easily.

Pat

[Whittlesey in reply to Hidden]

Thanks, Pat M. I have recently read a new report on tests for adrenal function w/GCA and prednisone. They spoke of both ESR and plasma viscosity as tests to determine inflammation. You may be right that it is easier for them to test plasma viscosity due to the range of patients they need to reach. But it does seem to be an important test. I am sorry I don't have the link to post right now, but I will find it and post. good testing. about 15% of the patients who were on prednisone for over two years, had no renal function (if I was reading the document right) and 85% had renal function recovered after reducing to 5mgs or below. good news. The readings on CRP may be different in the U.S. Mine was recently 25 and it was considered very high. 56 seems very very high. There may be different ways to measure this. Thank you on the feeling better and the weather. appreciated. unfortunately we have a few more days of extreme cold. If I get really sick, waiting for paratransit I will go to the ER. I seem to be getting worse, and may have the flu also. do not want to go to the emergency room, but -- -- thank you for your information and comments. wishing you good health and continuing recovery. all my best, Whittlesey U.S.

[Whittlesey in reply to Whittlesey]

I am sorry, it is late here and I am tired and obviously a little fatigued, in the above post, I did not mean renal function (scaring everyone to death) I meant adrenal function. thanks. best, Whittlesey

[estherdevers in reply to kingharold11]

Thanks. I stopped reducing and will stay on 15gs of preds. Been on since June 2012. Since been up and down like a yo yo, Had a kidney infection, so up went the preds to 20mg. trying to get down to 10 again

[kingharold11]

How long is it since you were diagnosed and prescribed prednisolone? I was diagnosed in May 2011 having been ill for 6 months prior. Once they gave me preds I never looked back until I dropped down to under 10 mgs. Then the problems started I have had most of what you say, dizziness lethargy etc. I am now on 5mg and for the next 10 days or so will stay that way but I feel the tiredness coming back . Then I have to reduce very slowly to 4 1/2 but if I feel ill I will forget it for a bit longer. Most of the time now I feel as if PMR has gone away I don,t get any pains etc. only tiredness. Good Luck Wendy

[theresa49]

Hi, Yes I am on a very slow reducing dose of prednisolone for GCA & I get the "shakes", also my legs feel wobbly if I try to do too much, even walking too far with my dog! I am now down to 22.5mg of Prednisolone from 40mg but the GCA is not 'playing ball' at the moment & is lurking in the background. So, I think it must be the steroids causing the shakes, we have to find the right balance to suit each of us I'm afraid. I have learned so much from this forum, taking things easy is sometimes difficult when you are not used to it, but having a little lie down in the afternoons really does help.

Hope you soon feel better.

[mickt]

I can sympathise with the shakes,im reducing from 60mg pred on 20mg 15mg alternative days for 1 month,start Azathioprene on Friday coming 50mg for 2 weeks building up to maint dose of 150mg daily over next 10 weeks.Hoping for a flare free reduction.Been on the pred since june .Theresa the tiredness I can identify with weakness in legs after a walk for half hr im done in for day.I had 6 infusions of cyclophosphamide this has kept my eyesight good,as Gca had caused amourosis fugax transient loss of sight and bad double vis.The weakness and wobbly legs are part of autoimmune illnesses and there treatments I think .All the best to all mick t.

[estherdevers in reply to mickt]

Hi thanks. With the eye problem, I have noticed a blurriness recently. I have an appointment to check GCA, but that is 3 months away. Should i wait that long?

[mickt]

Hi esther ,I would be getting checked before 3 mth if you suspect or gp suspects GCA,mainly especially if your eyes are effected as blindness can occur if it goes untreated.I know from experience my gca attacked my eyes and it was prompt action and hospitilisation which saved my eyesight.

[Celtic PMRGCAuk volunteer]

Hello Esther

Yes, wise advice from mickt. If anyone ever experiences any problems with their eyesight, such as blurred vision or pain, they should get it checked immediately either by a good optician or at A&E if necessary, explaining that you are a patient on steroids for PMR and are at risk of GCA. If GCA is suspectedimmediate treatment with very high dose steroids is needed to prevent loss of sight. Hopefully, the blurriness you are experiencing is perhaps just down to the steroids, but better to be safe than sorry, and no-one is going to think you are a nuisance when they know the situation.

[Whittlesey]

Hi Estherdevers,

I have diagnosed giant cell arteritis (GCA), have had flares. In July, I was hospitalized. I couldn't breathe, was extremely dizzy, and very fatigued. The chest and back scans showed that my cartoid artery was dissecting and two vertebral arteries were dissecting. I also had lung (can't think of the word -- lower part of my lungs were not working as they should be -- eclectis?).

Initially they increased the prednisone to 12 mgs (I refused to go higher, unless they were sure it was a "flare" have had really bad experiences w/prednisone, as most have had). They also gave me an aspirin a day, oxygen and quite a few tests.

I have seen experts concerning the artery dissection. Apparently the GCA can move to other large vessels. They don't believe mine is systemic, yet. The medicines helped.

I was dizzy for almost three weeks after going home from the hospital. Not very much, now. I am on the anti inflammatory (with help from these posts/blog), take the aspirin every day. With the change of rheumatologists, the methetextrate taken intramuscularly seems to help a lot (20mgs once a week). The surgeon I saw concerning the arteries dissecting, told me that if I felt the extreme pain in my neck or back either to go to the emergency room or call him and I could come in the next day. Have not had to do that. thankfully. My primary care doctor has explains that the arteries will "regrow" if there is not too much stress from swelling (GCA) in them. which is good news. praying that that is happening.

Would take the dizziness seriously and see a doctor and really make sure you get check thoroughly. I think I have had all the large vessels in my body scanned. And this way they identified the ones where the GCA had moved.

One doctor hypothesized that due to the opening in my cartoid artery I wasn't getting enough oxygen in the brain.

hence the dizziness.

There is also a high risk for stroke and heart attack with this. would urge to take it seriously and get tested, so you can deal with it, if there is anything else going on.

wishing you much luck with this. am feeling better.

thanks for your post. wish you recovery,

all my best, Whittlesey , NYC

[estherdevers in reply to Whittlesey]

many thanks

[estherdevers in reply to Whittlesey]

Many thanks x

[Whittlesey]

Hi Estherdevers, I am having one of those days, also. I feel dizzy and giddy also and exhausted. During the late summer I had a lot of problems with the dizziness to the point of breathing problems and tightness in my chest. was hospitalized and among other things dissections were found in my cartoid and vertebral arteries. I was switching rheumatologists, at that point.

She began giving me intermuscular injections of methetextrate and I really tried to adhere to the anti inflammatory diet. the dizziness went mostly away. I am wondering if the methetextrate somehow helped. ?

I was also given a small plastic device to breathe into -- in and out , and a ball raises and falls. my lungs had been diagnosed with some minor collapsing -- found this -- to be a lot. I use this and it helps. It also helps with the dizziness. believe the dizziness may be not enough oxygen getting to the brain.? possibly speak with your doctor about the dizziness. They told me it might be "pre stroke". not trying to scare you, but with these diseases, what may seem minor, may not be, I have found.

the plastic device helps the dizziness. ginger tea also.

Hope you feel better and the fatigue lessens, soon. all my best, Whittlesey

[Whittlesey]

Hi Estherdevers, I have had that. last weekend was bad. The first time I had it , was a few weeks after the prednisone was reduced. I understand it to be Cushingnoid type symptoms. The adrenals were just barely working on their own. Not enough cortisol for regular activity and organ function. The doctor was thinking of changing me to a biologic to give the adrenals time to start to work, then a very low dose of prednisone. I hope you are feeling better. I am still dealing with it. Thank you for your help last week. It was very appreciated. The doctor that may have been part of it. thank you. hope you are feeling better. all my best, Whittlesey

[SherryAnnie]

I have excatly the same and my blood presure drops for a short time but I am getting a fair amount of pain at the back of my legs just above the ankle