pemphigoid

[Juliec27]

I was diagnosed 4 months ago and have been taking prednisolone and fexofenadine. My muscles are very weak and at one point could not walk. I still cannot get up from chairs without help. Can anyone offer me some advice as I want and need to get back to work I am currently using a zimmer frame. I feel very emotional and depressed having been told by doctor the scarring won’t go. But mainly I need my strength back

[medicinal1]

Hello Juliec27, I noticed your post and had to research what phemphigoid was. I now understand it to be a pretty uncomfortable auto-immune disease. How horrid to be struck down which something like this, especially when you are still a working lady.

I have no direct experience of the condition, but with any illness (or injury) its really important that we try to understand it (to as best a depth as we can).Knowledge is power & it helps us feel a little more in control, after we have felt so side swiped by things.

Have you been given a specialist via your GP to discuss things with (or perhaps your own GP has boosted their own knowledge to help you as much as they can?) Lean into whatever is offered to you especially in the home setting ie. Physio, councelling or occupational therapy - all really useful to get you back to better health.

Often there are more specific support groups & communities for auto-immune illness online (this forum leans more toward cardiovascular illness) so it can often be helpful to chat to people who have been through or are going through a more specifically similar experience.

I saw this one & thought it may be worth popping them a message. smartpatients.com

Good luck & my thoughts are with you 🙂