I haven't posted for a while....

[Mmrr]

Hello everyone,

I haven't posted for a while, but have been reading the daily updates coming into my email account.

I'm not too good at the moment, lots going on that I won't bore you with, a quick summary:

After paying for MRIs which showed florid synovitis, bone erosions and more I was switched to Adalimumab...I've only had 2 injections, but so far no response...rather I've had to increase my daily oral prednisolone to be able to get out of bed.

I've now had 5 (confirmed by xray) and probably 7 spontaneous rib fractures over the past 3 months. I have been reviewed by the Prof. who still believes that I am on the correct treatment of Zoledronic Acid infusions.

Yesterday I was seen by my neurosurgeon who was a delight and spent a lot of time with me. My recent sacral / lumbar MRI (NHS) show further spinal occlusion, hence my increasing altered sensations, now in both legs, and my decreasing mobility. Fortunately the sciatic pain has not increased 🤞. Surgery is possible, but very high risk, and would do nothing to help my lumbar pain. I have more than a 50 % chance of being left worse off. We opted to leave further surgery for now. I'll be reviewed in one year.

I have also been diagnosed as pre diabetic, but managing diet / weight successfully for now.

My Adult Disability Payment (formerly PIP, changed only in Scotland) and blue badge are up for review and I have a small , but elusive water leak in my house.

Apart from the above, all is well 😂.

Seriously, mentally I'm surviving, had a long chat with my GP too and know that he is there, if I need help.

I hope you are all as well as you can be.

[medway-lady]

I’m so sorry to read of your trials and tribulations. Sometimes things just seem to go on and on. I truly hope that you’re able to move forward and are still positive despite these issues. All best wishes and sending a hug and hope xxxx

[dippyd09]

I’m so sorry to hear about all the problems you are having. The fractured ribs alone sound horrible. Easy to say but try to stay positive and I hope you can get some relief. Sending hugs. X

[Deeb1764]

just sending a hug I was thinking about you this morning so thanks for update even if not great 🥰

[Spanelmad]

No wonder your posting now!! Wow that's a lot to.deal.with!!! Sending you hugs and if I was you id hit the chocolate.😋

[J1707-]

I was hoping you were at least stable.. wish I could say something to make things better but I can’t. Do know I often think of you and always live in hope that you are pain free . X

[Fruitandnutcase]

Gosh, that’s not a lot of fun is it! At least the sciatica has not got worse - that has to be a win. Nerve pain like that is just awful. As for not opperat8ng that’s probably a wise decision. Years ago at the start of my spinal problems the consultant I saw said he could operate but that he had a 100% success rate and he didn’t want to spoil it by operating on my back - although I had terrible sciatica and on.y knew I was washing my right leg because I could see myself doing it I didn’t have back ache and he felt if he operated I would end up with it. I was quite happy to agree with it. I had a couple of steroid epidurals that fixed things for a very long time.

So good to hear from you, good luck with your blue badge renewal etc and as for the water leak - well, that’s all you need isn’t it! 💐

[Mmrr in reply to Fruitandnutcase]

Thankyou.I've had 2 microdiscectomies, a hip replacement, a basal cell Carcinoma removed with a failed skin graft on my nose, and 7 rib fractures in the past 2 and a bit years. I'm avoiding the surgeon's knife again , unless I have no choice. Fortunately my neurosurgeon is of the same opinion 😍

[Neonkittie17]

Hope the Adalimumab starts to work soon and I know some anti TNFs can work very quickly for some (Enbrel did for me) I think it may take a bit longer to work for you so keep faith with it and hope you can work through everything else. 🙏🩷

[Stills]

sending you bundles of good wishes for better times x