u/jilliecatt

Okay. I got my results back from all my testing.

I have a lit of signs of cushings (sudden onset of diabetes and high blood pressure a few years back when it had been perfect prior. Always been fat, but around the same time I gained about 80lbs that will not come off no matter what I do. The best that happens is I yo-yo 10-ish lbs every month. Moon face, buffalo hump, excess body hair, anxiety through the roof to the point of mild agorophobia. All my weight is in my torso and my arms and legs look like theyre for a smaller person). I attributed most everything to other diagnosis i have. PCOS for the hair and weight somewhat, the diabetes and the fact I have RA that has worsened so I cant exercise the same to the yo-yo of weight (even with a significant diet change). Anxiety/agorophobia to PTSD (I've always had anxiety, the progression to agorophobia though, once I tried putting things together with my doctors when Cushings came on the table... it set in around a similar time as the diabetes and hypertension). Tremors that i thought were tics from my absence seizures and Tourette's I was diagnosed with when I was 10. (I'm 43 now, never was medicated for it, and i dont know if new tics suddenly come on like that all these years later and my doctor doesn't know). Stuff like that. I had excuses and never thought to put things together, or as diseases as possible symptoms.

My rheumatologist was doing a MRI of my back to rule out AS and see where my back pain was coming from (osteoarthritis vs progression of RA vs AS type of deal) and they caught the top of an adrenal gland in the films. Rheumatologist said she had no idea, it just looked "weird and too big" and she wanted to refer me to an endochronologist. (Whose first appt was 7 months out). In that 7 months wait I was hospitalized for pain and they suspected kidney stones and did a CT. They caught the adrenal gland of course (and no kidney stone. Large fibroid on my uterus causing an intermittent ovarian torsion so I got an OBGYN as my doctor during my hospital stay. Will be having a full hystorectomy in October if the torsion doesnt come back, emergency if it does). The OBGYN noticed my adrenal gland and said there was what looked like an adenoma or tumor and wanted to refer me to an endo, and I told her i was waiting for an appt since it had been caught by my rheumatologist.

Endo appt comes. She points out all the things pointing to Cushings and we do testing. I didnt know I needed to tell her I do NOT have a circadian rhythm at all. I just sleep when I sleep. Sometimes its nights, sometimes all day, sometimes afternoon. Stsy up 48 hours because i cant fall asleep even with nothing on my mind. 3 hours sleep, 18 hours sleep. Im all over the place.

The dexamethasone testing read abnormal, even for patients with no circadian rhythm (after i took the test i was trying to figure out why everything was timed as such and realized she should know my odd sleep). The 24 hour urine was normal though, high side of normal. The saliva tests one was high side of normal, one was abnormal.

She said it didn't point exactly to Cushings, but to sub-clinical Cushings. Gave me options to just monitor it or to get surgery but she suggested surgery, "if it was me, I would have the surgery". I also said i would rather have the survey because I have bum luck with medical issues and if I just monitored, I would come back in a few months with cancer or something wild. She pointed out adenoma don't turn like that under normal circumstances but I said considering I'm immunocompromised things aren't really normal circumstances with me, and i would rather have a surgery that is recommended by my doctor than wait and see if things get better or worse. She agreed but just needed to point out all the angles. (For instance surgery + immunocompromised sucks! And I'll have to take a break from my RA meds, so that's going to flare up. Stuff like that).

Okay into the point of this post... I see the surgeon for my consultation Thursday. Im guessing he's going to help me figure out a good surgery time around my RA infusions schedule and my scheduled hysterectomy. I have questions to ask, and I don't even know what to ask at the same time. Things I know i want to know, is this the full adrenal gland or just the adenoma being removed? What are the differences in the two surgeries other than the obvious removal of an organization vs a tumor? Common surgical questions like laproscopic or open, down time, aftercare, stuff like that. But idk if there are big things im missing to ask either the surgeon or my endo.

What questions should I be asking?

Also to you all, what the heck is the difference in sub-clinical vs full Cushings other than its not a HIGH volume of excess cortisol. To me that just sounds like, we caught it early before it got bad. Does anyone have experience with this specific diagnosis, and can tell me their experiences (especially after surgery)? Will surgery help the hypertension and diabetes and stubborn weight even if its just sub- clinical vs full Cushings?

Also random but... after the surgery do I still have Sub-Clinical Cushings? Like, for medical records do I list that under diagnoses? Maybe I should ask the doctors that.

And what kind of surgeon did you all have? They're sending me to a surgical oncologist and idk if that's because thats who does these surgeries or if its a worry about my RA infusions (biologic immunosuppressants so its similar to chemo in a way I guess?) Or if its some other worry theyre not telling me about the possibility of the adenoma being a cancer tumor instead. The word oncology freaks me out. I will be asking the surgeon of course, just wondering if anyone also had an oncology surgeon.

Is there anything I haven't thought of that i should ask? Im horrible at remembering things at the doctor so im writing a list of questions.

So, I must had my first infusion after the initial losing doses of Remicade. The initial were weeks 0, 2, and 6. Now its every 8 weeks regularly scheduled.

I started hurting a couple weeks ago (week 6) because the meds were wearing our. Got answers here and from my rheumatologist that the line in on, the gap will likely bridge.

I'm good with that. My issue is, all this week I've been in a flare. (Started last weekend). I had my infusion today, YAY!

I am just wondering will the infusing pull me out of the flare? And if so, how long does it take to do that appx. (I know meds are different for everyone, just trying to get a general idea). Or should I call my rheumatologist on Monday (she doesn't work Fridays) and ask for some emergency meds?

My story thus far...

Got an MRI of my chest last year in November I believe (for my rheumatologist) and it caught a small piece of my adrenal gland. Rheumatologist said its not her specialty, but it looks off to her (whatever she was looking for in the MRI was fine, she just thought this small part of the adrenal at the edge of the film looked weird) and she sent a referral to an endochronologist, who couldn't get me on the calandar for 7 months!

In March I had pain, thought it was a kidney stone (ended up being a uterine fibroid that was bumping my ovary around causing an intermittent torsion!) But during the MRI looking for a kidney stone, they also saw my adrenal gland and I was once again told to see an endo, which i told them I had an appt end of June. They shot a clear MRI of the adrenal gland when they noticed it looked off, so i would have that already.

My appt finally comes and the endo has both the MRIs I mentioned. Definitely a tumor. She starts telling me about different things that could be. Asks me my medical history (diabetes type 2, high blood pressure, PCOS, HS, RA, anxiety to the point of agorophobia, heart palpitations, tremors). And she pointed out physical stuff, the belly fat but my legs and arms are not big, moon face, flush on my face, excess body hair, back acne. She asked if i felt a y of it was connected. I said it was weird I had always had good BP and blood sugar, and though i had always had anxiety, about the time the anxiety transitioned into agorophobia suddenly my bp and diabetes came on at the same time and I suddenly couldn't lose or maintain my weight (always been big but I've gained about 80 lbs in the past few years while I've always maintained well). I figured it was hormonal. She said yes, it likely is hormonal. And introduced me to all the issues Cushings causes.

So far I have had the bliod test (base and on dexamethasone) which came back abnormal. But especially because i dont keep a sleep schedule (sometimes I sleep in day, sometimes at night), I need to do a 24 hour urine and a saliva test. I have the stuff to do it, doing it tomorrow.

So thats where I am now.

Questions i have that I'll ask my doctor but I want to ask here as well, if it ends up being cushings, will removing the gland just, reverse the issues it caused? Will i no longer be diabetic? Will my BP go back to normal? Will I get off those meds?

Folks who have been diagnosed and had the surgery, what comes next and what is it like after?

Also, is it weird that I kind of find myself hoping I have this? Like part of me is like, no you dont root for medical conditions, but another part is going, this could explain and help so much, if i understand it all correctly.

Does anyone have experience with Remicade infusions?

Note, they took me off of the methotrexate and the Rinvoq in favor for the infusions because after 4 years of methotrexate and (a split, first alongside Humira then alongside Rinvoq) my liver labs started to look bad.

I have finished my initial load (week 0, 2, and 6) and am coming up on my first regularly scheduled (every 8 week) infusion. I felt pretty awesome up until a couple weeks ago. Around 5.5 - 6 weeks out of my last infusion my pain levels started creeping up again and maybe it's because I went so long realizing what less pain was like (I still had my baseline pain that's like my normal, but none of the usual above baseline for those weeks), maybe it's just more noticeable to me now, but it really is getting to me.

I asked my rheumatologist at our last appt last week and she said it was normal as the medication is on the tail end and leaving my system, but as I go along in my infusions, that should last longer and bridge that gap.

I just want to hear it from people who actually have the experience with RA and the medication, not just the doctor I guess. Does it get to the point that bridge from week 6 to 8 and the next infusion gets gapped?

Also, my next infusion after the upcoming would be beginning of October. But I am scheduled for surgery (hysterectomy so nothing to do with the RA) on October 5. All my doctors have told me I will postpone the October infusion until a couple weeks after the surgery when I have healed from the surgery. So it will be more like 10-12 weeks between. I understand why of course, I need my immune system while recovering from surgery. Just a bit worried about the RA pain worsening even more in the postponement.

Final thought/question. This week, starting about 10 days before my next infusion to be accurate, my legs at the joints and adjoining muscles/tendons, (Inner pelvic joint, hip, knee) have been sooooo crampy. Not painful spamming cramps like a Charley horse (although I have had one of those in my shin too), but the dull achy cramps. No amount of stretching or heating pads or anything has been touching it. Its not dehydration, my water intake is between half a gallon and a gallon a day. It makes it hard to get to sleep because i cant get comfortable. Is the cramping something that happens with the tail end of the infusion cycle? Just trying to figure out if its something I need to bring up to my rheumatologist and the infusion specialist, or if its not related and just my dumb luck.