Need a Bit Of Help

[Cutesparrow]

I'm new and feel blessed to find a chat room for PMR and GCA! When I had breast cancer 18 years ago, I was wonderful to partake in a chat room. It was comforting to be able to share and to learn from others as they were going through so many of the same trials.

I have osteoarthritis all over (in particular in my spine and knees), scoliosis of the spine, degenerating discs, PMR, (major pain right hip and leg pain) and possibly GCA.

Rheummy has me on 5 mg prednisone for pain and epidural injections on right and left legs every 2 months for 3 injections for leg pain. I am trying Turmeric and hoping it might reduce the inflammation pain and neuropathy throughout my whole body.

I'm not sure that I have GCA or if I should have the biopsy preformed. My symptoms are major dizziness, headache, fog with confusion, mild blurry vision, mild decrease in near and far vision. Since I have osteoarthritis and PMR it is difficult to determine if any of my pain is generated from GCA.

I would appreciate any input from the members of the chat room.

Sincerely,

Sweetsparrow

So far there has been only minimum pain relief. Side effects have been 8 pounds weight gain, constipation, bloating

[Hindags]

I think we might be more helpful if we knew a bit more about how your doctor diagnosed your PMR, how long ago and what dose were you started on. Were you inflammatory markers tested?

( don’t know

why the italics started, nor how to stop them)

Five mgs isn’t likely to give you much comfort if that is your starting dose. But If I recall correctly a while ago someone else reported receiving cortisone injections into affected joints and taking lower doses of oral Pred.

Your visual symptoms are troublesome. And 5mgs don’t come near to dealing with GCA from what I’ve read.

Have you been to an ophthalmologist to have your visual issues assessed.

The test for GCA is either temporal artery biopsy or more recently ultrasound or mri of the temporal areas. I believe the latter is replacing the Biopsy where there are staff to interpret the images. Temporal art ray biopsy has a significant false negative problem.

[Janstr]

My GCA symptoms were a low grade headache behind one eye that had gone on for over 2weeks, tender scalp, extremely sore teeth & jaw resulting in inability to eat in the mornings.

When I agreed to a temporal artery biopsy I was in a state of shock having been diagnosed with PMR one day & then possible GCA the next. ( I had gone to the dr expecting antibiotics for my self diagnosed sinus). I had spent all of the interim day on the net ( unfortunately I hadn't found this site at that time), & had found that for the temporal artery biopsy there are 20% false negatives. I questioned the Rheumotologist about why one would have the biopsy, as if you have GCA symptoms they need to treat you for it anyway. He told me that they get other information from the biopsy that may be useful later on, though at that time I didn't think of asking what they get & still don't know. My results were negative, & I have to say that I would now ask more questions about the worth of the biopsy results before having this invasive test.

If there is a suspicion of GCA you need to be treated for it regardless of the biopsy results & I think you will need to be on a higher dose of Pred. GCA can cause blindness so you need to get onto this quickly.

Have your eyes been checked for other conditions?

[arthur463]

Hi Cutesparrow

I think that your symptoms are still a bit vague and "Iffy" for GCA. GCA is the one to worry about. It cost me my right eye, due to a misdiagnosis.

If your Medics suspected GCA, they should have put you on 60 mg prednisolone straight away - just in case it is GCA. The fact that they didn't implies that they don't think it's GCA - or that the don't know much about GCA - as was the case with me. It's a beastly conundrum.

You cannot mess about with your eyesight Cutesparrow. You must demand a second opinion NOW - NOW! I used to be a mellow fellow - but since I lost an eye, and only have one left - I am now a bit more of a forceful fellow with the Medics these days - You bet!.

If they decide that it could be GCA - then do have the temporal artery biopsy. I did, and it was positive - so at least they know for sure what I've got, and hopefully how to treat it to save my remaining eye.

Good luck Cutesparrow - and stay in touch.

[DorsetLady PMRGCAuk volunteer]

Hi, It’s a very strange way to approach PMR and particularly GCA. How were they diagnosed?

As others have said a bit more info, particularly on specific symptoms pre diagnosis would be helpful. Plus 5mg as a starting dose for either illness is a gesture only.

[PMRpro Ambassador]

Five mg of pred is no use for anything as a starting dose. You might as well not bother.

[HeronNS]

Dizziness is one of the possible symptoms of GCA, as is blurred vision. If your regular doctor hasn't picked up on this I think you should go to the emergency department of your hospital and hopefully see someone who understands that, as PMRpro says, 5 mg pred as a starting dose is useless. Certainly if things start to get worse you must go to emergency and make sure they understand the symptoms you are showing are possibly threatening to your eyesight. As I understand it the vision loss can occur quite suddenly and only rarely is it reversible.

Have you seen an eye doctor - not someone who only prescribes lenses, but someone with the knowledge and equipment to check for signs of GCA in the eye? Sometimes, unfortunately not always, the eye profession is much more aware of the problems than general practitioners or even some rheumatologists. Remember, if you feel you are bothering your doctor, or maybe unsure yourself about bringing up your concerns, it's your body, your eyesight, and it's their job to diagnose and treat you correctly and help you recover.

I do hope this is not your problem, but the possibility really must be taken seriously. This is quite an interesting article:

reviewofoptometry.com/artic...