Problem with balance?

Hi everyone,

Has anyone experienced a problem with balance? I was diagnosed January 15. Even after 7 months my symptoms are changing. Some are just more intense. My balance is getting worse. I finally bought a cane but seems awkward to use it around the house. Last night I stumbled and fell into a door jam. My back has a 13" bruise on the side and sore elbow and hand. A year ago I was doing all the active things of daily living. Can anyone say if this is the PMR or the Prednisone? Has anyone had these symptoms and had improvement eventually? You are all so helpful. My experience is that doctor's in general seem to think this PMR is no big deal?

20 Replies

  • Hi Alison,

    Dizziness and balance issues are listed as a symptom of GCA in the literature. I've had that too and am being tested for GCA with a temporal biopsy soon. Have you been diagnosed with GCA? Are you under the care of a good Rheumatologist?

    I'm sorry you're suffering. I know exactly how you feel, as I'm going through this too. I hope your in good care and trusting your doctors. With any chronic illness, those physician/patient relationships are critical. We have great healthcare here in the Pacific Northwest (although it takes way too long to see a good specialist these days). Although I still have much to learn about our condition, I do work in the healthcare industry here. Let me know if you need any help with resources.

    I hope you're feeling better. I so cherish the good days! Hang-in there friend.

    Kitty, Gig Harbor, WA

  • Hi Kitty

    I do feel confident in both my primary care MD as well as my rheumatologist. Neither of them think I have Temporal Arteritis. I do have headaches in my temporal area but always have had. Also blurred vision but only after reading awhile. They think that is due to inflammation in eye muscles/fatigue. My esr is 98 so I do have a lot of inflammation.

    PMR is really complex isn't it?


  • Alison, balance problems can be quite common when suffering from PMR and/or GCA. I experienced problems with my balance both in my year of undiagnosed illness and it continued long into treatment.

    If after 7 months your ESR is as high as 98, then whatever dose of Pred you are taking it is obviously nowhere near enough to control the inflammation and at the same time keep your symptoms under control. However, ESR can rise in response to infections or viruses, so these need to be ruled out.

    If you haven't had a CRP test, do ask for one alongside a repeat of the ESR, as it is generally felt to be a more specific marker of inflammation.

    Once the inflammation is under control and as you reduce down to the lower doses, you will find your balance improves, but I had to help mine along with Tai Chi and Nordic walking classes.

  • Please listen strongly to Celtic. The esr figure is crazy. Do you have anemia?

  • Hi Kitty in Gig Harbor, I live in Bellevue, Washington and have had this condition for two years 3months(actually I think started 6months before diagnosed). Have been down to 2mg(extremely miserable for 4months of THAT). Then went to 2 1/2, not much better. After listening to this forum and seeing that my sed rate was again at 42😳, I doubled it myself to 5mg- NERVANNA❗️I was a life long tennis player, but on the very low Prednisone, could barely move. Yesterday, I played pretty painless doubles and went to a Beach Boys concert at Puyallup Fair❗️ Have to admit, fell face down onto bed with my clothes on-dead asleep in 10 seconds when we finally made it home. Managed to drop my purse by bed and get shoes off. My husband tried to help, but could see I was happier the way I was. Just up and I'm sure I'll pay for it today- but soo worth it. I was wondering if you know of any support groups in our area. I go to the Polyclinic in Seattle. When I went to see my GP last week, in the middle of telling him how miserable I had been when on 2 1/2, and that the night before had doubled to 5, he said, "Well, would like you to taper off of it." I then went down for blood work and Sed rate up to 43😳. Two days later, I luckily had a rhumi appoinment and he, upon seeing Sed rate, told me to stay on 5 mg for 3 months- no tapering. I'm sooo happy❗️ I feel like God has given me a little slip of my life back. Every time I lift a leg to take a step, I don't say,"Ouch❗️" My whole life was,"ouch", "ouch", "ouch"❗️ I so hope you all are on the right amount of Prednisone. Will be checking in later. All the best to one and all. Keep your chin up and thank you so much for how you support each other. It is truly beautiful🌻 Kathy

  • Morning, my balance went all over the place walking down the street looked as if I had been drinking after a couple of falls bad one bruse from thigh to toes on right side . Walking cane helped a lot made me concentrate more don't use indoors now ,family insist I do not leave house without mine is a folding one so can put in bag in restaurants or cinemas. I have GCA was on 40mg a day when this started on 4mg a day at the moment so it will get better

  • This may seem rather strange but the above comments are reassuring, and I do sympathize with you all. I have been suffering from balance/lightheadedness for 5 years. My GP would not agree with me that it was connected with my GCA/PMR. I lost the sight of my left eye due to GCA 5 years ago. GP referred me to a neuro-otologist who gave me eye exercises which made me feel worse. He has also been trying various medications, the latest Pregabalin which has made me gain weight. I saw him 3 weeks ago and he said I have a strange breathing pattern which is causing the balance problem. Sorry if I rambled on but why of why do not Medics listen to their patients. I have said all along that it is the prednisolone that has been causing my problems but they all said no. Mine started when I got to 20 mg after reducing from 60 mg. I am now on 7 mg and the symptoms have diminished greatly.

  • Hi. Has the Pregabalin helped? I ask because I was put on this whilst they were investigating possible GCA and because temporal biopsy was negative they thought head pain was neuropathic. The Pregabalin at 300mg daily did nothing for the pain and just made me totally "spaced out" I just could not function, physically or mentally. Like Pred you cannot just stop Pregabalin and it took me a couple of months to taper off, with awful side effects. A PET CT scan finally diagnosed my GCA in the Aorta, but I still don't understand why that gave me head pains.

  • Probably because the GCA was also present in smaller arteries in the head. Inflammation in the temporal artery is often the cause of headache and scalp pain - and isn't the cause of loss of vision. That is GCA affecting the posterior ciliary arteries which supply the optic nerve or the retinal artery which supplies the retina. TAB is only positive in less than half of cases for all sorts of reasons but it is the best they had until now. If they did a PET/CT in all of us I think they would find GCA, or at least inflammation, in a lot of other places. But it is not universally available and costs a lot.

  • Thanks again PMRpro. That sort of makes sense. So, I was lucky to get a PET CT scan? My Rhuemy was very interested in my symptoms and bloods and was keen and enthusiastic at getting a diagnosis... After that however is a different story!

  • Suppose it depends how you look at it! But yes - they aren't handed out to all and sundry. I suppose at least you got a diagnosis...

  • No the Pregabalin did nothing except putting on a lot of weight . I took 150 mg 3 times a day, and now as you stated it is difficult to taper off. I am now on 100 mg 3 times a day and like you the only thing it does is making me feel spaced out. I'm in a difficult situation because my endrocrinologist is very keen to stop the Prednisolone because she feels I have been on it for too long and put me on hydrocortisol. I asked about the Pregabalin and she said that was not her department. Obviously the relavant consultants do not communicate. My head pains were stopped by the Pred from day one five years ago. I am now left only with the balance and lightheadedness problems.

  • If the Pregablin is not doing any good you need to come off it. It is a dangerous drug. But like Pred you need to taper slowly to be safe. Speak to you prescribing doctor on safe way to taper, like Pred it does deoend how long and what dose you have been on. There is a good Facebook support group "Lyrcia - Pregabalin, the big withdrawal" It is so unacceptable to get a "not my department " answer from a health professional! Are they not treating the whole person ? One body, one department !?

  • My balance is terrible when I'm tired. I bought a cane and keep it with me. Anytime I'm walking more than 10 feet it's by my side, better safe than sorry.

  • I too have had balance problems and use a folding stick. It is the only way I can feel in the least bit steady once I am out of the house. I was diagnosed with PMR in January, and put on 15mg Pred, which hardly touched the problem. I have posted on this site several times in the early days, but so much has happened over the past few months that I cannot write it all! Suffice to say, I was referred as an emergency to Eye Casualty and Rheumatologist in June, and diagnosed with GCA. Have been on a massive Pred dose of 90mg for past 5 weeks, and only now am beginning to get relief from the awful headaches. I have put on a lot of weight and have dreadfully swollen cheeks and ankles - but can cope with these, provided the GCA and PMR improve. I have been instructed to start reducing the Pred gradually now, and have further appointments lined up at Eye Department and with Rheumatologist at hospital. So o o o.... hopefully the only way now is up!!!

  • Balance problems with PMR are very common - I fell over a lot in the 5 years I had PMR pre-pred. I also had problems holding things and judging where to put things down so broke a lot of glasses! I couldn't stand on one leg easily - something I had been able to do quite easily before in my Pilates classes. Without them it would have been far worse. I also found it was much better when I wore proper hiking shoes - I found walking on uneven surfaces next to impossible and needed a solid footing even on smooth ones.

    It is probably because all your muscles are fighting to keep you upright and are on the verge of giving up (I know, not very scientific but it says what I want to convey). I found that sessions of Bowen therapy every 6 months or so helped the balance problems a lot - I could write an 3-page essay here but I won't. Many patients who have a Bowen session find they have balance problems for a day or two because of the changes in the muscle positions after the treatment and their body has to get used to them being where they should be.

    Some ladies in the Newcastle support group participated in an Age Concern Nordic walking course, aimed at older participants. All found it improved their balance a lot and one managed to go from needing a zimmer frame to walking without over a period of 6 months. Using a walking stick/cane will help - but it also tends to unbalance you because it is only one side. Using a pair of walking poles is much better for you and for your balance. And it feels less "old person" - loads of people here where I live use them.

  • I may be the odd one here, however, the balance issues I had at the higher doses (40 mg down to 14 mg now) were relieved by taking the predisone in the evening. Before that I was useless with light headedness, fuzzy brain, and loss of balance issues. I would take the meds around 9 or 10 pm. The only issue that caused was having to get up to the loo 3 times a night. For the last three months I've been taking the meds at 1 am in the morning.

  • You might be the only one here - but there are a few people on the forums who have found the same. I used to feel very dizzy a few hours after taking the pred in the morning - but it wasn't always, just if I did too much at a certain time after taking the tablets. I stopped going shopping at that time...



    Please keep vigilant and always consider that you are developing GCA.

    "Early symptoms of giant cell arteritis may resemble flu symptoms such as fatigue, loss of appetite, and fever. Symptoms specifically related to the inflamed arteries of the head include headaches, pain and tenderness over the temples, double vision or visual loss, dizziness or problems with coordination, and balance. "

    Probably the pain of PMR affects balance. When we have pain we favor the parts which manifest pain and change things like our gait.

    I'm so sorry that you are at risk of falling. This is not good especially with Prednisone. Do you have safety bars in the shower? Interestingly my Rheumy asked me to install them. I thought that she was nuts, but I did it.

    Personally I also think that (with GCA) even if you do not go blind, that there are significant vision changes. And they happen often. My glasses and contact lens bills are now crazy high. I need new ones way more often than every year.

  • Thanks Asbeck. Both my Rheumatologist as well as my Family practitioner have been fairly emphatic that I don't have GCA so I guess I have to put my faith in their conclusion. But, yes, knowing that I'm my own advocate, I will be watchful of symptoms


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