Temporal arthritis ?

[steph1]

Iv been on steroids since July had temporal biopsys 25th Aug they phoned today to biopsy negative but they thought they would be after being on steroids for month befor op . I've got a lot of other symptoms aswell I. E on waking my lower back , hips and legs from knees down give me a lot of pain my neck and shoulers ach still got headache , my hand every now and will give me pain and lock in a position and I just have try and free it , got bleed and inflammation with blury eye , I had to put sterroids in that eye 4 times a day for 3 weeks they stopped yesterday but it dosnt seam any better to me . I carnt walk or do much without being in a lot of pain with hips lower back and legs from knees Down . Any one any I dear wot I can do to get someone to listen to be Steph sorry people I've gone loads about this

[Hidden]

Hi Steph

Night owl too I see... Can't sleep again!

4 weeks ago I visited GP and diagnosed with suspected TA (GCA) and commenced on 60 mg steroids - this was on the Mon, eyes tested on the Weds, biopsy on the Thurs - like you negative result, but they think it's because the artery was actaually damaged and now off to see the maxillofacial consultant this Friday, CT head scan on Mon and back to Rheumy consultant on 21st.

The ache, the pain and nothing resolves it - you really do have to get the pain under control. My GP is working well with my Rheumy (have RA and have had for years), but pain control at the mo is difficult. It really is trail and error for each of us as individuals, and is always dependent on other health issues and medication that you might already be on. I take anti inflams on a daily basis and have done for a very long time. For the pain of the TA (GCA) that I currently have I have been on cocodomal (no good), codydromol (no good) and now on on dyehrdrocodeniene 90mg x 2 daily plus paracetamol 4 hourly, this is just about covering it, but GP suggested morphine last Fri - I declined, need to be able to still drive.

It is also about listening to your body - if in pain, try to get this sorted, try different cobinations till you get what os right for you - really try to see the same GP and get a good line of communication going. Rest - listen to what your joints and muscles are saying. I am the worst for doing this and have been working throughout, but now have decided to just take it a little easy for a few days.

Sadly there are just NO easy answers, it feels like running a battle daily - so tiring. I use good cushions/pillows to get in the best position for TRYING to sleep, and keep my feet up when sitting which reduces the pressure and strain on the joints. Ice/warm packs can help to (wrap a hot water bottle in a towel to get the right temp), even sometimes just wrapping a soft blaknet around the painful area helps - be kind to yourself. Also do tell those close to you how you feel - they can't really understand, no one can unless they are going through it, but a problem shared etc...

Take care

Hazel x

[steph1]

Rhankyou hazel

[Celtic PMRGCAuk volunteer]

Steph

It could just be that your initial starting dose of 40mgs was just not sufficiently high enough to get control your inflammation at the beginning, all the symptoms of which do sound like both PMR and GCA. Yes after 4 weeks on high dose steroids the biopsies could easily produce a negative result but the little piece of artery removed isn't always the piece with the large cells. Having suffered from both PMR and GCA (TA) myself, if it was me I would be hot-footing it to A&E, especially with the blurry vision you mention. You definitely need a second opinion.