Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Further Shug update

Hi to everyone that knows me, and all the people who don't too!

Well Shug had his twice yearly visit with his prof. today, and it couldn't come soon enough.

Shugs been off all meds for about the past 4 months and life hasn't exactly been rosy for him. Imagine being on Enbrel and having a good result..to being on nothing! His neck no longer moves other than being able to look down about another inch. He can't look up and can't turn it from side to side, driving is becoming difficult, as are most other daily tasks.

His liver levels still fluctuate but the prof. is not concerned about them. The levels were worrying us as it's been 4 months with no meds and no real big drop. Shug asked about further liver tests but was told there was no need, it was nothing to worry about.

He asked when he could resume some form of meds and was told not yet. I had pre warned Shug that the prof. would probably say this but not to accept it...lol...I told Shug to ask about a patch as the 2nd tier of pain meds don't work. So the prof. started Shug on a buprenorphine transdermal patch. His first one has gone on tonight so we'll see how that goes. He can take some ibuprofen if need be.

Shugs confusion hasn't really improved much and the doctor is pretty certain its a side effect of Enbrel, no one knows if it's permanent or not so he has to have a CT scan of the brain shortly. All being "normal" with the scan they will then start Shug on Adalimunab (Humira) and see how he goes on that.

I'll let you know the results of the brain scan when we have it.

Hi,
Tell Shug that I send him my biggest Get Well Soon. I am waiting for my results from my brain and cervical scans, and the waiting part is not easy. I am going through problems with meds as well, but they aren't athritis meds. I hope his scans turn out good, so he can try taking something better. Yes please keep us updated and let us know how well the patch is helping too.

Take care,
and best wishes to Shug.
James.

Just want to send some support your way. Hope all goes well with the scan and Shug is able to start meds again. Take care, Wanda

The big question is how is Mrs Shug going? We can all sympathise with Mr shug the AS sufferer, but I would hate to think that Mrs Shug the spare back bone is not forgotten in this as the Mrs Shugs of the world are the most important part for me in our fight to get through each day is the support from our partners, you all know that they also tend to share the pain and when we go into a flare, the easiest person to snap at. With out the support of my partner I would have topped myself years ago. You guys are the heros as you do not need to stay, but you do. Thanks
Look after yourself as well.
Phil

Thanks for you replies guys, I will keep you updated as to how we go with this latest blip!

I'm managing ok,it's hard at times and of course I'm so very worried about the brain scan - lets just hope they get him in quick so we can get the results. I've never seen Shug so low for a long time, in fact the day he got his pain patch he said to me "Jax I don't know how much longer I can take this" of course alarm bells started ringing in my head and now I'm worried about his mental state. Being taken off all meds he's no longer on his anti depressant either He says he's had some relief with the patch but it's only taking the edge off the pain, it is only the lowest dose so we'll give it another few days and see - he may need a higher dose.

Thankyou so much for your concern everyone, it means alot.

Jackie, thanks so much for the update. I hate to hear when someone has had good results with one of the biologics, only to have to go off because of adverse effect. I know it's part of the risk, but I hate when it actually happens. By all means, please let us know the outcome of the CT scan.

Please give Shug a gentle hug from me and get one back for yourself.

Many hugs,

hiya,

poor old shrug......liver some get elevated liver tests as a result of the disease..

not the drugs.....

i hope all the tests go well,

lot's of well wishing

David

Nice to hear from you again.

Fingers crossed the brain scan comes back ok. Hope the Humira works for him.

Daz

Hi Jackie

Good to hear from you, but sorry the news isn't better
It must be very worrying for you both......please keep us updated. Hope things will improve soon.

How are YOU keeping?

Hugs,
Sue