CT scan

Snaggler

That result must offer you both relief and frustration at the same time. Not quite sure how to look back on your previous posts with this new system yet so not sure whether or not you are under a rheumatologist. At least you are alert to the risks, so if there are any new or worsening symptoms you will know to seek emergency advice. Do hope the eye pain eases soon.

MrsO

I think having migraines is preferable to GCA! And having had migraines all my life that's saying something! But it is a bit of a comfort to know there isn't likely to be a risk to your sight.

I do hope they can find out what is causign the trouble but unfortunately if it one of the rest of the group of autoimmune arthritis/rheumatic/connective tissue things it is very difficult for them too. At least they are already looking - it is common for patients to go to the doctor for years before they are taken seriously and a cause for the problem looked for.

all the very best in the hunt and keep in touch so we know how you're doing,

Eileen

snaggler

I suffered from migraine, more years ago than I can remember. I found Feverfew tablets did the trick. But as you are other medication, if you are going to try them, talk to a Pharmacist first about compatibility.

I also grow Feverfew and have a leaf or two in a sandwich. But not once they have flowered. You can google it to see what it says.

I am not convinced that I have migraines yet. I got back some test results already and it looks like I have an issue with my kidneys and my thyroid. Falling apart might be a better word for me.

Hello Snaggler

Some other sufferers of PMR who post both here and on the other site have thyroid problems - possibly an auto immune link here.

I have a problem with my sole kidney in that it was found through a blood test a couple of years ago to have reduced function

(not filtering out at the normal rate). The blood test concerned is an eGFR (estimated Glomerula Filtration Rate). In a person with normal kidney function this should read 60 and above whereas mine read 50. I now have 6-monthly eGFR blood tests and the readings have varied between 44 and 50. This doesn't appear to be linked to either PMR or the steroids but possibly to an anti inflammatory during my year of undiagnosed PMR or to the contrast medium (dye) that was injected during a CT scan in the hunt for what was causing my pain - no doubt the fact that I had only one kidney wasn't taken into account with the amount of medium used.

Someone posted recently on the other site that a test result had also revealed a kidney problem; however, everything was later confirmed to be normal and I do hope this may turn out to be the same in your case. It could even be a minor infection which can be resolved with antibiotics or simply a case of dehydration. Whatever the problem, my tip is to ensure you drink lots of water.

Best wishes,

MrsO

I noticed a change in urine output from the start but it has gotten to a point now where there is swelling and less and less output. I am thinking the prednisone is doing bad thngs to my kidneys.

Snaggler

Having only one kidney I am paranoid about what I put into my body as regards medication but both my GP and my rheumatologist said that Prednisolone would not harm my kidney and in fact it was actually prescribed for some people who had kidney problems!

I noticed in one of your other posts today you referred to swollen glands but I've been unable to get back to that post. Is it the glands in your throat/neck that are swollen? I ask this because a year ago I suffered from persistent swollen glands in my neck following a severe mouth/throat infection. I was tested for another auto immune disease called Sjogrens Syndrome - apparently when you have been diagnosed with one auto immune disease, it isn't surprising to encounter another! Other symptoms of Sjogrens are dry eyes and mouth. As there are other auto immune illnesses that can affect the kidneys, a rheumatologist should be able to investigate further and perhaps you should also ask your GP to refer you to a renal specialist. I do hope it at least helps to know that it is unlikely that the Prednisone is adversely affecting your kidneys.

MrsO

The swollen glands are more then likely from the chronic lympocytic luekemia that I've had for 17 years but yes I think there is something more going on then that and I am being more careful with tylenol and motrin. My dad died from renal failure in 2010 and they could not save him as he waited three weeks to see a doctor after he was having issues with urine. I have a natural fear of this now due to the loss of my dad in such a way. So I am hoping I do not have the chronic stones he had that lead to renal failure and later congestive heart failure. I am not even 50 yet, He was 79 when he died. I really hope with diet and exercise and proper administration of medications I do not travel the same road much sooner. I am obese and need to lose weight but my body is working against that. I've been watching my intake for several months yet gained 30 pounds. I am frustrated and lost on how to make myself better.

Hi Eileen,

interesting to read you are a migraine sufferer, I hadn't realised that you were. I was a regular sufferer until starting the pred. I had a whole year migraine free whilst on the higher doses, but since being on 5mg and less, they seem to be cropping up again but not as frequent as before pred. I know of other people who have had the same experience. Has it not been the same for you? Cheers, Molly.

That is odd that two people are experiencing better results, I had the migraines for months now and the prednisone did not help. In fact it is making them worse. I get aura and fluttering lights every day and I have a headache 24/7. The prednisone helped a great deal in the first month but since I went down to 42.5 mg I've gotten many aches and pains back. My neck, spine, lower back and hips are sore and this headache is relentless. The right eye's vision is still blurry and not improved.

Snaggler

I cannot remember if you have GCA as well as PMR. If you do not have GCA, I would suggest a long conversation as quickly as possible with your GP.

I would like you to get GCA ruled out completely by either an Opthamologist or Rheumatologist who specialises in GCA and GCA.

The Rhematologist I am seeing doesn't think it is GCA. They seem to believe it is migraines. I am dealing with a three ring circus here in Canada. Honestly I do not think anyone knows what the heck is going on. The Rheumatologist was interested in my spine and thyroid for some odd reason. He did a whole bunch of x-rays and blood tests. I go in for a bone scan on the 30th from head to toe. Then I wait to see him again on the 27th of February. Problem with me is I already have chronic lympocytic luekemia so it throws a curve ball into alot of these tests and results. Also with GCA once you are on prednisone the tests change. As far as biospsy goes, it would seem, Canadian doctors never heard of such a thing. LOL! I get the impression I will be waiting for a long time before I get a final diagnosis. I suspect Ankylosing spondylitis (as all my test results and my symptoms seem to fit) but I am no doctor nor do I understand what is going on inside my body. Does GCA show up on a CT scan? I know ESR goes down with prednisone so that is not an indicator at this point into treatment. My Gamma globulin is low which indicates a variety of genetic immune diseases, or a secondary immune deficiency. My Dad kept most of his health issues to himself and did not even tell my mother so I have no idea if he had AS but he did have several back operations, kidney problems and heart problems. He started having those issues around age 45. My mother has crohns disease RA. My sister has MS. So who knows. I just am very frustrated waiting for a diagnosis that fits so I can get on with things and start doing what I need to help make my life easier and more full then stressing out over what is wrong.

Hi Snaggler,

I'm so sorry to hear of your relentless headaches.Years ago when I was much younger, I used to have very frequent migraines, just getting over one and another one starting, that sort of thing. I know how miserable it is and I feel for you. I wonder if you are on other medication that could be causing the headaches. What does your GP say about it? You could try feverfew, some people find it helpful although it did nothing for me.I used to get pain behind the eye with a really bad migraine. I also notice in your previous post that you have a thyroid problem. I have an under active thyroid and take thyroxine daily. I've never had symptoms from this problem and knew nothing about it until it was picked up in a routine blood test. I hope you get some relief soon with the headaches, they can be very debilitating. Cheers, Molly.

Well apparently the thyroid is over active although I am not sure that can be accurate as it was normal a few weeks ago and now it is not. I am not on anything else that can affect symptoms. Previcide is for refux due to a hernia in the sofogus. Cannot spell worth anything. I've been taking that medication for 17 or so years now. Honestly I do not know and I guess I just need to be patient and wait for the doctors to figure it all out. Thanks for your ideas everyone.

Nearly all those things you've mentioned are or can be autoimmune related. It is also possible for thyroid function to swing from normal to hyper to hypo in a very short time - it happened to my daughter at one point when her little boy was a couple of years old (thyroid problems often start after pregnancy) and the doctors were flabbergasted at how quickly the figures changed. You do have loads going on so it must be terribly difficult for the docs. I do hope someone can come up with an answer soon,

all the best, Eileen