Update
Posted , 9 users are following.
I haven't been posting much lately, too busy keeping my appointment diary up to date! I'm having so many investigations at the moment that there isn't time for much else.
Following my PET scan in May, my rheumy decided that I needed to see a haematologist to check on inflammation on my spine spotted on the PET scan. I'm currently waiting for appointment letter for a further full body scan.
Next is a bronchoscopy to check my lungs, there is still crackling and something there since pneumonia during August. My voice has also got more and more hoarse and tight, in addition to being quite out of breath. That's scheduled for 1 December. They will also check for TB. I had a skin test, but had no reaction, no doubt masked by the pred.
I found out that if you have latent TB, methotrexate can activate it. Of course, I had 6 months of Methotrexate until I could no longer cope with the side effects.
Then I saw my gastroenterologist for my 6 months check up. She had warned me before that she might request a liver biopsy, and she said she now wanted this to go ahead. Although my liver enzymes are mostly good, one enzyme is not and she wants to have this done, as she says that there are too many uncertainties about my health and once you have an autoimmune illness, you could get liver immune disease. My liver is already fatty. Its also a good time to do it, as I've managed to taper the pred down to 15mg, so it won't mask any symptoms as much as it would do on a higher dose. This is scheduled for 5 December.
Also coming up mid December is a scan on a nodule on my lung.
That's it at the moment, I think!
I've managed to taper to 15mg pred, which is the lowest I've been since GCA started 2 years ago. I don't feel particularly better, I'm still very fatigued and rest/sleep a lot. I've still got a horrible round face and am still very overweight, a bit of a vicious circle though, I'm too exhausted to exercise or walk any distance, so am not using up many calories.
I manage to get out for my weekly art group and the odd brief outing to the shops or lunch with friends, but really, life is not very exciting right now.
And...I'm going to the Chertsey Support Group Christmas do on 6 December (the day after my liver biopsy, so may hobble in!) and really looking forward to that.
0 likes, 116 replies
Susanne_M_UK
Posted
Funnily enough, as I'm reading this, there's a programme just starting on BBC1 about the pressures on GPs and the NHS.
linda17563 Susanne_M_UK
Posted
I will keep reducing as I don`t feel I have a choice....the rheumie was a second opinion, and I think he feels I may have something else going on, (my sister has RA,)... or that the pred was making me feel so ill....my husband thought I would be worse than I am....but he`s not me!.....luckily he is never ill....he`s 72, and hasn`t had even a cold since he was 15!.....so you can imagine....he has no idea!......his family are all the same......good genes!!......
Susanne_M_UK
Posted
Some good news, - I saw my haematologist 2 days ago for the results of my spinal biopsy and the lesions on my spine are benign. So just another MRI scan in 6 months time to make sure they haven't got worse and then sign off.
I'm battling the bronchiectasis (lungs) and the combination of this and pred/GCA is leaving me very tired as usual, but at least I've ticked off one thing.
I need to somehow start to get some energy back and stop sleeping during the day (I still manage a full nights sleep on top of a couple of hours sleep in the afternoon).
EileenH Susanne_M_UK
Posted
That's great - and next fingers crossed is that they are not only benign but also stationary!
Hope the chest problems improve with the spring arriving.
Susanne_M_UK EileenH
Posted
Thanks Eileen. They haven't changed in over 6 months, so I'm hopeful.