I need info about long-term symptoms and treatment of GCA and vasculitis

[AdoptMeow]

Three questions about GCA if you have experienced these situations: 1.)New guidelines state that ultrasound is more accurate than biopsy -- was your diagnosis confirmed by ultrasound? 2.) what has been your experience if prescribed methotrexate when tapered off prednisone? And 3.) Do you have limb claudication from vasculitis, how was that determined, and what has helped to lessen the pain and increase mobility?

Two years with PMR and GCA. Started at 40 mg. In January prescribed 4 mg for 3 months. It doesn't help and I have to take another 5 mg just to be able to walk and go to work, but still a lot of pain everywhere. It's worse across pelvis and upper legs. I react badly to most meds, herbals, sulfa and salts. Rheumatologists want me off prednisone but the pain, stiffness, and fatigue are totally ruining my life.

[SnazzyD]

Hello, sounds pretty miserable. You will get much info I’m sure but I’m going to get the ball rolling by wondering why, if you have a resurgence of PMR, you’ve been prescribed a piffling dose (4mg) that is tiny and unlikely to do anything much good or bad. I’m not surprised you have to take another 5mg.

For diagnosis of GCA, ultrasound is as accurate as biopsy but the advantage is that you can assess more than one tiny bit of the artery and it isn’t invasive.

Limb claudication from vasculitis is only helped by an appropriate dose of Pred, much higher than 4mg. Have you ever had a PET scan for large vessel vasculitis?

[AdoptMeow in reply to SnazzyD]

Three rheumatologists ive seen pay no attention to the GCA symptoms. I do get My eyes checked every 4 months. My SED rate and CRP have been normal so at January visit Dr said I am well and shouldn't need pred. But I do have continuing positive specialized tests for lupus and Sjogrens which he ignored. Also am high risk for blood clots. I have not been checked for vascular issues. Biopsy was scheduled in summer of 2018 but cancelled because of how much prednisone I was taking.

I'm very worried about methotrexate and asking questions to figure out what to do next so I don't lose my job and my house! I could live in a small apt on social security but I have many rescued animals.

[SnazzyD in reply to AdoptMeow]

Sorry, I’m confused. So are they wanting you to go on Methotraxte, having said you are well because of normal ESR/CRP? What GCA symptoms do you have? When you say you’ve seen three different rheumatologists, do you mean three separate opinions or just three different doctors acting for the same specialist on the day?

[AdoptMeow in reply to SnazzyD]

Three separate rheumatologists each twice plus specialist at Duke University Hospital who confirmed PMR a year ago.

GCA symptoms are nagging headache and sore scalp, face and upper teeth constantly for 2 years unaffected by any pain med.. Sometimes stiff neck or soreness in ear canals. Difficulty getting out of chair or up steps. Need cane to walk much of the time and cannot stand still for more than a few minutes then entire legs hurt bad.

Dr #3 thinks I'm just a pill-seeker and said he hasn't seen much success with methotrexate but still said it's better than pred. Dr #4 said I have undifferentiated rheumatoid arthritis and wants to prescribe methotrexate. I do not have the joint damage or nodules.

[SnazzyD]

Which country are you in?

[AdoptMeow in reply to SnazzyD]

Virginia US

[PMRpro Ambassador]

Is there a good reason for wanting you to be off pred? That doesn't mean "you've been on it for more than 2 years so you must stop". You need what you need for however long you need it - and after 2 years to be on 10mg is perfectly normal and reasonable. If you are the patient! Especially if you are one whose GCA also includes PMR as a symptom. PMR has a median need for management with pred of just under 6 years - you are still in early days.

Whether u/s is better than biopsy is fairly immaterial after this time and 2 years management with pred.

Claudication in the legs is diagnosed on the basis of not being able walk more than a short distance without pain in the calves which resolves when you stop walking and returns when you start again. Once that presents, you should have assessments of BP in arms and ankles, how far you can walk before the pain stops you, and u/s of the arteries in your legs to find where the blockages are. Possibly even other tests like angiograms to show the blockages/narrowing.

[AdoptMeow in reply to PMRpro]

I didn't observe any bad side effects when I was on higher doses. One month at 40, 2 months at 30, then 20, then quickly weaned off. Two months later had to start again with 10. Weaned down to 3 over 2019. Then pain and immobility has worsened gradually to the point that 10 doesn't help much. Dr #3 said to stop taking it because of the effect on the adrenal glands.

[PMRpro Ambassador in reply to AdoptMeow]

I wouldn't be seeing #3 again - it's OK to be disabled and in pain as long you don't take pred for your adrenal glands? It would have been helpful though if you had met one of them who actually knew how to manage PMR.

[AdoptMeow in reply to PMRpro]

Have an appt with #4 mid-May who wants to start methotrexate. So still hoping to hear from people who have tried it for GCA.

[PMRpro Ambassador in reply to AdoptMeow]

The new guidelines (I think) but certainly Prof Dasgupta has said it works best in GCA when started in the first month. It isn't going to replace pred - it may, if you are lucky, help you reduce the pred dose. But pred is the medication that combats the inflammation and you still need the dose you need - you can't force the reduction just because you are on mtx. If they are really concerned about you being on pred it is tocilizumab/Actemra they should be looking at.