It's been a while since I last posted. I've been trying to figure out what in the world is going on with my health!
In May, I will be 2 yrs. post BLA. I'm back at square one! I've gained back all of the weight I had lost. I was feeling like I was cycling like I did with Cushing's. Even my specialist could see my red round face and neck. When I saw the specialist, he didn't think I had regrowth where my adrenals were, but had no other ideas of what was going on. He said I should test. To do that, you have to switch steroids to dexamethasone. Hydrocortisone shows up in your testing, so you can't tell whether the results are from the pills you are taking, or if your body is producing cortisol. When I would switch to the dex, I would feel so much better, and my symptoms would go away. I'd quit cycling. I couldn't figure out why that was. Dex is a much stronger steroid, yet it wasn't giving me the high symptoms the hydro was.
A lot of doctors hate our medical support groups. They think they make us sick! (Weirdos!) Our support groups are our life line! It's through our support groups that we find the help we need. Doctors don't want to go the extra mile. By putting our experiences together, we can figure out problems that are stumping even our docs. One of the gals in my support group posted about problems she was having with the Qualitest hydrocortisone. It still didn't dawn on me for a little bit. Then I started thinking about how my symptoms would go away when I went off of it, and onto the dex. I contacted her and asked if she was having XXX symptoms. She said yes! Ding, ding, ding! The lightbulb went off in my head. I had not considered that the hydrocortisone was the problem.
I was only on 10 mg. of hydro, which is not much at all when you have no adrenals. When I first had surgery in May of 2009, I was on Glades hydrocoritsone. I did great on that. It was my favorite. The problem is, Glades went out of business. They quit making all drugs. I don't remember exactly when the pharmacy switched me, but I think it was Nov./Dec. of 2009. I knew I didn't feel as good on Qualitest, but figured this was my lot in life now, since Glades quit making theirs. The pharmacy had run out of their stock of Glades, and now Qualitest was their choice.
At first, I was able to maintain my weight, but the other Cushing's symptoms started creeping back in, one by one. That's when I went to see my specialist last Sept. to see what he thought was going on. Then I had a crisis at the end of Oct. I still wonder if that didn't have something to do with this drug as well. I'll never be able to prove it, but it's a theory. After my crisis, I started gaining a lot of weight while on this Qualitest hydro. I seemed to be cycling harder and faster. I don't know if it was the accumulation of drugs in my body at that point or what. Then when I would go on the dex, the symptoms would subside.
So, I got the bright idea to call Glades and see if I could get ahold of anyone at their old number. I did, and they told me who they had sold off to. I called that number and they had sold the hydrocortisone portion off to Core Pharma. The formulation is the same! Same inactive ingredients! I even got the NDC# to order the hydro, but Core Pharma is not making it just yet. They said not until this summer. I wish they would have told me that the first time I called! In the meantime, a good friend of mine told me that she orders hers from New Zealand, OTC. The pills are small like Glades was, and she does good on them. Another friend reported the same. So, I ordered them from there, for the time being. I'm on day 3 with the new pills. I'm doing good so far. It will be interesting to see if I start dropping weight again, and doing really well. I think I will.
I started looking at all of the inactive ingredients between different manufacturers of hydrocortisone. There is a big difference. While all of them might work fine for one person, the next person could have trouble with all of them! One of the inactive ingredients in the Qualitest is known to attack hair follicles and make the hair fall out! I was losing huge wads of hair, and couldn't figure out why! I showed a pic to my doc. He said, "What's that?" I said, "My hair!" Even he agreed it was a lot to lose from one washing!
So, here are the symptoms I had on Qualitest hydro. I called and reported it today.
massive hair loss
red facial and neck flushing
itching in general
hive like rash
spiking blood pressure/low blood pressure
red stretch marks
and probably others I'm forgetting.
When I say weight gain, I'm meaning 45 lbs. in 5 months. I did gain some of that while on dex, but it slowed way down while on dex. The real rapid gain was while on the Qualitest.