Meds or not

[Marieg2009]

Last March I started having I am tired spells and my blood pressure was going for a very low to high to low hello how are you Dave and passed out just gone back to get my results that I had done a month ago because it was getting worse and I’ve just found out that I have Addington syndrome to do with my pituitary gland I was told by the doctor because I have an autoimmune disease That I stood a higher chance of getting this very rare Syndrome my old specialist put me on steroids and I have been on them now for over 20 years and I reckon that this is the course why is it you doctors keep plastering us with more and more and more medication is knowing full well but these are getting worse and not the actual symptoms of the disease was it’s not fair and to make matters worse I still have to pay for all my own medications I just wish somebody would get their finger out and find a cure for this because I’m at my wits end I’m so down and miserable thisIs the last straw I don’t know how much longer I can be strong to fight it

[Paul_Howard Partner LUPUS UK]

Hi Marieg2009 .

I'm sorry to hear that you have developed addison's disease. According to the NHS website, autoimmune disorders are the most common cause. I have heard of cases where long-term treatment with steroids (particularly high doses) can also trigger this by inhibiting the adrenal gland's function.

Unfortunately steroids do have a lot of potential side effects. Doctors have a difficult job of carefully trying to weigh up the potential side effects against the risk of insufficient treatment and more disease activity. It can be a difficult balancing act.

Has your consultant explained what this might me for your treatment moving forward?

As for your prescriptions - If you're receiving treatment for Addison's disease, you're entitled to a medical exemption certificate. This means you don't have to pay for any prescriptions you need. You can get more information about this at nhs.uk/using-the-nhs/help-w...

[Marieg2009 in reply to Paul_Howard]

Well that’s one good thing then . Lol free meds. No I don’t know what the Treatment will be yet I’m due to see a specialist soon all I know it’s 1.9 which apparently is very low I’ve been saying since March last year that I haven’t been feeling well and just keep being kept fobbed off sign well you’ve got lupus what do you expect you’ve got lupus I knew it was something different why can’t doctors just listen to the patience most of us know when something different or wrong is going on we manage your body is better than what any specialist can ever do I’m tiredI’m just fed up I’ve got so many complications because of this I have PBC I have lupus I have chagrins I have Reynards I’ve got arthritis what smoke and my poor body take

[Hidden]

Marieg, I’m so sorry you are feeling this way, and I totally understand, as do, I think, most, if not all in here. And I think that most of us, if not all of us, have hit a wall too. Please don’t give up. I know there was a time I had to keep repeating to myself ‘this too shall pass’ over and over again. I had to focus on all the positive reasons to keep moving forward and fight through this. Family mostly.

Life is worth living, and I promise that if you keep fighting, you will find your answers. The medical field does what it can. It’s trained to use medication to treat. That is their knowledge and expertise. There are also alternative/holistic approaches. Have you spoken to your doctor about going that route? It sounds to me like this is what you might be looking for.

Some people in here have had positive results with meds. We all need to make our own choice and do what we feel is best for us.

I decided to go a different route. I saw what meds did to my mom and am terrified of being dependent on anything. I may be paranoid. Idk. But a lot of people in here are happy with their treatment plan.

You need to educate yourself the best you can, ponder and pray for inspiration, and talk to your doctors. If what they are saying doesn’t feel right to you, or if they won’t listen, find a new doctor.

All my best to you🙏. Don’t ever give up! You can do this, and we are hear you listen when you want to scream it out! You are stronger and braver than you think!