Fed up

Yesterday I saw my Rheumatologist. As some of you may recall I am experiencing severe joint/muscle pain to the extent that I can hardly get out of my chair without help. Pain in my feet is especially bad and it has progressed everywhere.


My Rheumy believes that because we are all unsure on whether this is caused by Prednisone withdrawal (I was on it for over a year) or Humira he wants me to go on Prednisone just for a MONTH. His reasoning is that we will then know if in fact, it is the Prednisone or not. If I start to feel better, proof that Pred is the problem.


I said I would go along with this..does this sound like a solid plan? I have begun to get muddled with everything that's going on with me so I thought I would run it by you guys.


Also, today, I saw my Gynecologist and its left me feeling bewildered and upset. Some of you may remember my recent post about my Gyno.


We talked about how I have 'lost' my lady parts and would need to have surgery to' open me up' as I have Lichen Sclerosus and I am unable to have S..x (Once you get UC you get other stuff) LS makes everything shrink, retreat and get small.


So, we are talking away and I've got my feet in stirrups when she says she could take a photo to explain what she would have to do (she's a surgeon) I knew I should have told her to use my phone but it was a bit awkward me being on the bed and so I just thought I would watch her carefully. She took three photos, showed each one explaining to me certain facts and then said "do you want me to delete them" I said "YES"!! (odd question) she then proceeded to delete TWO photos. I then said "weren't there three"? She said "No only two"


I think I am going to have to change her as something is definitely 'off' with her. I'm upset that I suspected her of not being quite right and I think my instinct is right.

If the issue is steroid withdrawal then an endocrinologist can measure the levels of your body's natural cortisol. If your cortisol levels are lower than expected or nonexistent, then your adrenal system is still asleep and did not wake up as it should have during your last prednisone taper. In that eventuality, the endocrinologist can help you coax the adrenals back into their normal function.

Simply taking pred will both treat inflammation AND give you synthetic cortisol simultaneously, and either could be the problem (low cortisol or inflammation from another issue). You still don't know which is the actual problem in that case.

I would hesitate to go back on steroids. It actually doesn't make logical sense as they are anti-inflammatory, so I don't see how that could determine if the pred caused it.

As far as your GYN, I wonder if you could speak to a detective. If there are other complaints past or in the future, a compilation of them could open an investigation. Just a thought.

notsosicklygirl said...
I wonder if the doctor would want to keep a picture for clinical purposes. If so, she should have asked. There is no excuse for stealing images of someone and lying.

This is exactly what my husband said. I now only have one LM due to the Lichen Sclerosus. It has reabsorbed into my body, and so it is possible that is what she was doing. To do that without asking is shocking to me. I know I should report her but I just don't have the 'bandwidth' for that at the moment.

clo2014 said...
I am just flabbergasted...flummoxed...and disappointed by your Gyno. This is the same one that took pics without asking last time? (At least this time she asked) I think I would just be finding another doctor. It is just wrong to take 3 and only delete 2.... I also think I might talk to her about it again after I found another doctor. (Or I might just file a complaint) I am sorry you are still dealing with her shenanigans. I had hoped it was a one time misunderstanding...but that 3 vs. 2 has really thrown me.

On the prednisone and joint pain. I too am having horrible issues with my joints. We are not sure if it is the Crohns, Prednison, or Remicade. I have been on and off the prednison and the rheumatologist stated she was still unsure. The prednison helps with the pain every time though.

I hope they discover what the cause is.

Hang in there!
Clo

Yes, its the same lady. I will look for another doctor. I was very upset yesterday, crying in the car park on the way home. I sensed that there was something wrong with her last time which was why I was so very vigilant this time when she took the photos. Sorry, you are going through it too, I know how hard it is with joint pain.