new here/temporal arteritis/extreme fatigue

[Teekay2]

Hi,new here introducing myself. Brief history: hyperparathyroidism operation 2003-rheumatoid arthritis diagnosis 2007-hospitalised with sepsis 2018- diagnosed with temporal arteritis march 2019. My RA has been quite well controlled the past couple of years on etanercept and leflunomide but since temporal arteritis diagnosis in march these were stopped and am now on prednisolone and tocilizumab. Now I am suffering from extreme fatigue and finding it difficult to stay on my feet for any length of time. My upper body is still strong but from hips down moving slow and awkward. Is this I wonder yet another autoimmune condition coming on polymyalgia rheumatica?

[PMRpro]

Polymyalgia rheumatica is the same disease as GCA, just affecting a differnt part of the body.

We have a dedicated forum for PMR and GCA

healthunlocked.com/pmrgcauk

where you will meet dozens if not hundreds of people with PMR/GCA, many with GCA and a lot of experience to hand on. Do come and join us there.

[DavidJB]

Hi Teekay

I have another form of Vasculitis called Polyarterites Nodosa (PAN) which has and is treated with Prednisone following diagnosis 2 years ago.

I believe it saved my life at the cost of type 2 diabetes, osteoporosis, significantly accelerated cataracts and horrible headaches, where the frequency and duration of which has slowly reduced. The latter may be linked to my dose reduction. My rheumatologist is unhappy with my linking my current headaches with Pred or PAN and has referred me to a neurologist who is having tests done on me, which is where I am now.

The headaches leave me laid out on the sofa mostly asleep. The headaches, I blame on Pred, are different to the PAN ones as those responded to paracetamol, but equally debilitating.

My Pred dose started at 30mg which was glorious for a day, it then went up to 60mg for many months. I believe this was until my infection indicators became normal. I then came down 10mg every 2 weeks until 30mg, then 5mg until 20mg, then 2.5mg. Then a mini flare up which resulted in me going back up to 40mg. Next was similar to before but reductions every 4 week. Down to 15, another flare, back up then down to 20mg, 17.5, and then more slowly alternating daily 17.5 between 15. This worked till 12.5, then a tiny fair, back step to 15 for 2 months. I have reached 10 this week and I’m apprehensive about how it is going to go from here.

Sorry, I seem to have rambled a lot, but I hope there’s something useful about. Beware everyone has their own experience and I am in no way a doctor.

[Christophene47]

Sounds like it. I am in my 3rd year with PMR .and still on Prednisone. Also had hyperparathyroid diagnosis, but figured it out myself with 2 clues. Had bad gland removed 2012 with the minimally invasive nuclear surgery. 15 months for my biochemistry to get sorted out after; surgery itself easy.

How "lucky" we are to be so rare; 2 rare conditions in a lifetime is not fair.

So something in common; extreme fatigue is the worst part of PMR/GCA. Do visit the Austrailian PMR/GCA forum; Keep in touch. I'm in US.

[PMRpro in reply to Christophene47]

What Australian forum?

[Christophene47 in reply to PMRpro]

PMR Austrailia, this sister's forum.

[Christophene47 in reply to PMRpro]

I should say PMRAuk..

[PMRpro in reply to Christophene47]

Have you a link?

[Christophene47 in reply to PMRpro]

Not going to respond; you know.

[PMRpro in reply to Christophene47]

I wondered if that was what you meant but it's a very UK-based forum - set up originally about 7 years ago by the National charity of PMRGCAuk, there was already one from the NE of England group and one on patient.info that was the original where the ladies who got the idea of PMRGCAAuk and then did the work to set up the charities.

[Teekay2]

I saw my consultant today and she thinks the temporal arteritis is in remission and it is the prednisolone causing my weakness etc. Will now be reducing prednisolone at the faster rate and see how it goes. I must say that she and all nhs staff have been excellent with my care.