You were right

[Grammajoy]

Answers to my last post made me realize you are right! I have not been taking PMR seriously enough. Unfortunately about that time my incredible primary Doctor stopped practicing and I could depend on her for everything. So I returned to rheumatologist who made a plan to reduce prednisone and Duloxetine (Cymbalta..a dangerous drug) and told my lab results showed some RA factors and that PMR could develop into RA. Apparently the mix of these two drugs could well be cause of my serious vision problems? Today I researched jaw pain and PMR because I have been experiencing jaw and ear discomfort as well as unusual headaches and it seems that is a sign of Gca. I guess my reason for turning to this amazingly knowledgable group is what to do next? What specialty Doctor treats Gca and what is my next step? Can my opthomoligist help? Thanks for all the adviceb

[HeronNS]

The rheumatologist should have been aware of the possibility of GCA, especially if you told him/her your symptoms. However a fully trained eye doctor, not a person who fits you with lenses but someone who can diagnose eye conditions, like your ophthalmologist, should be able to examine your eyes very closely and have a good idea whether you have any sign of GCA. I went to mine as a precaution, and in the course of the appointment he gave me far more information about GCA and prednisone than my GP ever had! If you are experiencing vision problems you should be treated as an emergency. People sometimes have to go to the hospital Emergency department where there should be someone who understands the risk of GCA, so go there at once if you experience any sudden changes to your vision. Although the meds can cause things like blurred vision I think your symptom of unusual headache is enough to warrant seeing someone, sooner rather than later.

Hope all turns out well!

[SheffieldJane]

Hi Grammajoy! We all go through a period of adjustment and push the boundaries a bit, it's very human. Nobody wants to terrify you either! You are seeing the right sort of doctor for GCA. I.e. A Rheumatologist.Do you have an optician with lots of fancy equipment to see the back of the eye and test for Glaucoma and cataracts? I have and she thoroughly checked my eyes after a referral from my Primary Doctor. If not maybe a referral to an Opthalmologist - eye doctor would be a good precaution. Although they can't give you the all clear for GCA, they can spot things going on.

You will know the symptoms for GCA by now, eyesight problems, headaches, occipital headaches, temple headaches, pain usually over one eye, jaw pain when chewing. If you experience any of these, treat it like an emergency and go to hospital. It seems that your Rheumatologist thinks that you are having a reaction to a drug combination. I am not at all familiar with Duloxatine. That maybe what it is. But we all go on high alert with the symptoms you are describing. If GCA is suspected the treatment is a very high dose of Pred maybe 60 mgs. I don't know where that leaves you with your other drug, Cymbalta. In America there is Actemra for GCA and imminently in the UK, it's not a steroid but it does stop the immune system attacking itself. You may be prescribed that.

We have only one doctor on here that I know of. We are mostly just fellow sufferers - some with a scientific or medical background. None of us are qualified to diagnose you or tell you what to do from a medical perspective.

We can only advise based on what we've picked up along the way.

Keep in touch. I sincerely hope your doctors get you on the right track, very soon. 🍀

[Grammajoy in reply to SheffieldJane]

Thanks for your input. I will call my opthomoligist tomorrow to see if he can diagnose. This site is a life saver!

[SheffieldJane]

I had a quick look for drug interactions between Pred and Duloxetine and didn't find any contraindications. All the more reason to be checked thoroughly for GCA.

[MaryA_ in reply to SheffieldJane]

Yes Grammjoy, see a qualified very soon!

[MaryA_ in reply to MaryA_]

Doctor that is!

[PMRpro Ambassador]

It is very unlikely that PMR develops into RA - it is a vasculitis, a different sort of illness. But it isn't unusual for late onset RA to be confused with PMR at the outset and the wrong diagnosis made.

I have to say - I'm at a loss why they dish out duloxetine for these sorts of pain syndromes. It isn't for muscle pain, it is for neuropathic pain, so won't do anything in PMR, and is quite difficult to stop taking, it must be tapered, just like pred.

But your description of ear and jaw pain plus headaches would suggest GCA until proven otherwise.

[bonnielm1]

The jaw, headache, sometimes pain below the ear, temples is what I experienced with GCA. It took a month to figure out what I have. It has been 2 1/2 years now. Prednisone from 60 to 1 mg. and then I had problems. I moved and had a couple of flares. I now have a new rheumatologist who wants to get me off the prednisone. I was on methotrexate with prednisone. I would reduce the prednisone each week. That did not work. Now I am on prednisone with leflunomide. Also he wanted me to take cymbalta but it made me sick. I don't know if this is working or not. Now my shoulders really ache. The sed rate and C-reactive protein are high. I had my eyes checked very thoroughly (optic nerve and pressure were good). He said if the leflunomide does not work I may have to try injections of methotrexate.

[HeronNS in reply to bonnielm1]

Bonnielm, what dose of pred are you on now? The experts will be able to comment on the other meds you're on or have been offered, but it seems like you need more pred and it's a pity your current specialist is more afraid of pred, which works, than of the so-called steroid sparers which so far have given you nothing but grief.

[bonnielm1 in reply to HeronNS]

I have come down to 2.5 and I am suppose to come off completely next week and only be on leflunomide 20 mg

[PMRpro Ambassador in reply to bonnielm1]

There is absolutely no evidence that leflunomide or methotrexate work for GCA. Pred is the mainstay - and even when you try something else you must use pred, it isn't ethical not to as it places the patient at unacceptable risk. I think you need to find another rheumy who has more idea about managing GCA. Cymbalta doesn't work in PMR/GCA - it is for nerve pain.

If he's so desperate to get you off pred after only 2 1/2 years (GCA lasts more like 4 or 5 years) then why isn't he touting Actemra?

[bonnielm1 in reply to PMRpro]

He said Actemra is not covered under my drug plan. The only way it would be covered is if you try everything else.

[PMRpro Ambassador in reply to bonnielm1]

Hmm - I'd suspect that is the case for RA. But GCA isn't RA - and it is newly approved for GCA as the only option besides pred. However - I don't know enough about your insurance to say any more.

[Grammajoy in reply to PMRpro]

I wasn't clear about meds. My primary doctor prescribed cymbalta for back pain (spinal stenosis) and depression. Today I'm in a catch 22 situation. My primary is no longer available; rheumatologist said to see opthomologist who is on leave of absence for rest of year. Am waiting for rheumatologist to give me an idea what to do next. My feeling is that she doesn't want to deal with it. I live in a very small town in North Ga. Mountains and medical care is minimal. Closest care is 60 miles away which is not a problem but getting an appointment within 2 months is impossible. Thank goodness for this site to vent to sympathetic others. I try not to talk about ills to friends here.