Endocrinology Update-- Mixed News

[Sangye]

I saw my endocrinologist for a follow-up visit this week. We had re-tested my adrenal function and it was not so great. My adrenals are functioning, but nowhere good enough to try to taper the hydrocortisone yet. The plan is to wait another 6 months and retest. If the adrenals are working better we'll try to taper again. She said it can take a long time to wake the adrenals up again and is not surprised by my numbers.

Still, 6 months. I feel pretty discouraged. It's not like I feel good or even decent on this dose of HC, or on steroids at any dose. And there's this long chain reaction that the steroids maintain. While I'm on them I can't lose weight. If I can't lose weight the increased intracranial pressure persists, which is a problem by itself but also keeps me on a diuretic. If I can't lose weight the lower extremity swelling is much worse, which keeps me on a second diuretic. And if I can't lose weight I have sleep apnea (though it's still undiagnosed), which makes me exhausted, increases the risk of other conditions and ironically, prevents weight loss. Being exhausted means I can't exercise or function much..... You see how it goes. "Another 6 months" feels like a prison sentence. :sad:

And there's another stupid twist: I just finished rtx, which starts wearing off in about 7 months. So just when we'll (hopefully) be tapering the HC, the Wegs will be waking up, making it impossible to tell if symptoms are due to the HC-taper or Wegs activity. This is upsetting, to say the least. I'm gonna have to just ignore my hopes and fears and stay in the present moment, even though right now I really just want to cry.

[Brooke]

Hi Sangye - I haven't posted in a while but still read some posts here and there.
I am sorry you are feeling so lousy, please stay strong and have hope that things will improve as I'm sure they will! I know it seems like a long and bumpy road but just look at where you have been at in the past. Big hugs to you!!!:hug2:

[Sangye]

Thanks Brooke. I just don't feel very optimistic right now. Things haven't improved in a long time. My last rtx infusion was on June 26, making it 6 years since being dx'ed and being able to work. It really got me down.

[Brooke]

I understand, it is hard to stay positive and be optimistic when you are feeling so crumby. My thoughts are with you and I hope you start feeling better very soon! We are all here for you to express your thoughts, anger, worries and whatever else is on your mind.
Not trying to shine the light on me, but I have some good news of myself, I am pregnant! Just found out on July 5th.

[Sangye]

Wow! I'm so happy for you, Brooke! I know how long you two have wanted a second child. Due date?

[Brooke]

Thank you Sangye. Due date is March 18th. Instead of trying fertility medications, we decided to do Intrauterine Insemination, did that on June 25th.

[pberggren1]

If I was there Sangye I would give you a big hug and not let go.

Congratulations Brooke!

[Jaha]

Sangye,

I really am sorry that you don't have good news. This all stinks, it is like being on a rollercoaster ride that never stops. Up and down,up and then back down again. It's enough to exhaust one the emotional parts of wegs and the constant changing of tx plans. I know you have had a very hard 6yrs and I am only on 2yrs of this **** and am already so tired and completely drained at times. You are an inspiration to me, to go on fighting this ugly battle.Please stay strong and know how much you have helped others along your journey. Pet and love on your dogs, that always makes me feel a little better. Hang in there!
Jana

PS Congrats to you Brooke!

[Sangye]

Thanks so much, Jana. :smile1:

[Al]

Oh, Sangye. Such a bummer. So much of this crap is a raw deal that it would be nice, once in a while, to get some good news. I presume you tell your dogs all that is going through your mind. (We care, too, of course, but they get to see you more often!) Please keep telling us your feelings....

Al

[Al]

Thank you Sangye. Due date is March 18th. Instead of trying fertility medications, we decided to do Intrauterine Insemination, did that on June 25th.But this is really great, Brooke. There is huge love in new life.

Al

[Debbie C]

Sangye, I too am sorry to hear about all the crap you are going thru,but u have to think positive. Who's to say after the next seven months the wegs dog will wake up. Maybe this round of RTX will calm him down for awhile and you can start reducing your steroids. I will say a special pray for u in church tomorrow that all this will work out sooner than u expect. In the meantime like Al said keep talking to your dogs,they know what going on

[annekat]

Oh, Sangye, I'm so sorry about your latest news and that you are feeling so down about it. But I'm glad you shared it, including every bit of discouragement you are feeling, as that is an important part of getting through it. As usual, I learned some things from your post and found some things to look up (e.g. intracranial pressure). Even when you are feeling down you manage to present information that can help the rest of us to understand Wegs. I hope your state of mind improves after some rest and enjoying your dogs and other simple pleasures of life.

And Brooke, big congrats to you!

[elephant]

Sange, I know this has been a long fight to put the WEGGiIE asleep! Sorry you have to wait six month. Thinking about you! I know you will come around, your a strong person.

[Psyborg]

Sangye, sorry to hear this news. I hope that things will improve for you soon. Hopefully the Hydrocordisone will do the trick.

[RCOSSIO]

Arrghhh geeze louizee Sangye...feels like you are walking up the stairs to the top floor, but really never getting there.

[HopeinTN]

I'll send good vibes your way. I hope things start looking up real fast!

[vdub]

How much hydrocortisone do they have you on? Mine has been at 15/5 for about the past 2 years. I specify cortef. I don't know if cortef is a generic or brandname, but it's been good to me, so I stick with it. Best of luck! This disease kind of gets tiring doesn't it?

I was in the ER 4 times during the course of 3 days over the 4th. Drug-induced psychosis I guess. It was (is) one of the worst experineces I have ever been thru. I am just barely maintaining now, but they did up my drugs this morning.

I'm now on 17 different drugs. I'm really tired of this.

[Sangye]

Thanks everyone. I really appreciate your words of encouragement and support.

Debra-- this was my 5th round of rtx. The Wegs dog very consistently sets his alarm clock for 7 months post-rtx.

vdub-- I'm on 12.5/5. I don't feel that good at 12.5 but I'm gonna see how I do on that dose now that the Wegs dog is going back to sleep (hopefully). Every time I've tried to taper to 10/5 I crash within a couple of days. Cortef is the brand name. Mine is generic HC. I'm so sorry to hear you went through drug-induced psychosis-- holy smokes, that must have been terrifying.

[vdub]

I'm so sorry to hear you went through drug-induced psychosis-- holy smokes, that must have been terrifying.
For lack of a better name, that's what I'm calling it. The docs haven't really put a name or cause to it. I was on oxycotin for about 5 days for pain and the stuff just sent me through the roof. One of the most horrific things I've ever gone through.

I hope to find out more about it as time goes on. My wife thinks it was caused by a combination of things to include the stress of having the 3 dieseases and so many drugs to just keep track of. It could have been drug interactions, too.

I'm on anti-anxiety stuff now and it does help. I asked the doc today if this was a new norm and he said it might be. So I'm a little bummed.

[KathyB]

Lots of info in this thread -- Sangye, so sorry you are going through so much. You have definitely been a strong supporter in our forum, and I know we all wish you the best in the coming months. Hang tough! Brooke -- congratulations on your special news! Fantastic! Best wishes for a healthy & enjoyable pregnancy! Vdub -- what a struggle you are experiencing! I'm sure the drugs can be overwhelming. I know how important my husband is during all this & hope your wife provides you the same love and support.

I can't tell you how important it is to me to share/listen/interact with you all. Being open to suggestions & new info, and creating a positive environment is what I enjoy most about this forum. Real people experiencing real things. Thanks you all!

KB:cool:

[Debbie C]

vdub, my gosh it just never seems to end for you. I feel so bad for you that you are having to go thru all this and take all that medicine. You are definately much stronger willed than I could ever be. I truly hope things start looking up for you and they can get u off some of those meds. Take care and keep strong

[vdub]

For lack of a better name, that's what I'm calling it. The docs haven't really put a name or cause to it. I was on oxycotin for about 5 days for pain and the stuff just sent me through the roof. One of the most horrific things I've ever gone through.
A bit of an update.... I might have mentioned this somewhere else on the forum, but not sure. About 5 days after all this stuff started (on the 4th of July), I went in for my normal endo blood tests. My thyroid was off the charts high. So, there ya go -- that was the cause of the mental issues. Either a high or low thyroid really causes weird stuff to happen with the thinking process.

My endo called me immediately after rx'ing the report and took me off all my thyroid medicine until it could come back down to normal (about 5 days). And there's absolutely nothing you can do until it washing out of your system. I'm testing my T4 every 4 days now. When it gets back down to where it is supposed to be, I'll start taking light doses of levo until I'm back to normal. It's been quite an experience.

One thing good about these little issues, tho, is that each time something happens I'm learning more and more about the drugs. For instance, I had no idea that my thyroid medicine had such a long half-life. That's good to know in the event I miss a dose or two for some reason.

I'm also learning that it doesn't take much of an imbalance in my drugs to really send me over the edge.

[Sangye]

Whoa, vdub-- that could have been really dangerous. I'm glad they caught it in time.

[vdub]

Whoa, vdub-- that could have been really dangerous. I'm glad they caught it in time.
I am blessed to have such a good team of docs.

[Lightwarrior]

Thanks Brooke. I just don't feel very optimistic right now. Things haven't improved in a long time. My last rtx infusion was on June 26, making it 6 years since being dx'ed and being able to work. It really got me down.

I just want to cry right along with you and then give you a big warm hug. I am so sorry Sangye, I wish I could wave a magic wand and make it all go away, and you wake up because one of your patients is knocking on your office door and all of this has been one crazy dream.

[Lightwarrior]

I am blessed to have such a good team of docs.

We are also blessed that you have a good team of docs. The forum is so much richer with you here.

[Debbie C]

vdub..I'm glad they caught the problem and u are on the right track now.I hope u keep getting better.

[JanW]

Sangye, I'm sorry to hear your news. You have really had a rough ride of it. I know that saying to "hang in there" is just empty words, but really, just try to stay in the moment as I know you always do.

Brooke, that's wonderful news. I know you have been wanting a second child. I have two (both before WG) and it is truly a blessing.

[greenjanet]

dont cry if you cry so will i, i have the problem re weight im just under 100 kilos, please try to not worry.. all of this is out of our hands, just have to go with the flow sending my love cheer up janet x

[Lightwarrior]

dont cry if you cry so will i, i have the problem re weight im just under 100 kilos, please try to not worry.. all of this is out of our hands, just have to go with the flow sending my love cheer up janet x

Janet, Here is to a virtual cry....... :crying:there now we all have it out of our systems, our tears have washed our souls and we can move forward together knowing that we are not alone. :hug3: Group Hug

[greenjanet]

thanks used all my tissues xx

[KathyB]

Sangye -- what has Dr. Seo said about the number of rounds of Rtx? I've had two and my rheumy doesn't know if he's going to have me do another in September because of possible worries of the drug. As I've mentioned before, I may request a referral to UNC.

Hope things are improving for you!

KB

[Sangye]

After my first round of rtx we took a wait and see approach, hoping it might put me into a lasting remission. About 7 months after it the Wegs began to wake up. Since my labs still looked okay we chalked it up to other things (well, Dr Seo did. I pretty much knew it was Wegs). When it became obvious that the Wegs dog had awakened we did another round. Wegs activity for me means hemorrhaging lungs-- a severe flare. We repeated the rtx hoping a second round would do it. Same thing.

It's highly variable between people. Some get one rtx round and they're in remission. Others need it every few years and some of us need it on a regular basis. No way to know unless you try.

There are no other options for me, so Dr Seo has me tough it out to make the rtx last a year.

[KathyB]

Sangye -- and you go to Johns Hopkins, right? I lived in Fredericksburg, VA, but went to MCV (Richmond) on emergency after my local hospital sent me home while recovering from acute kidney failure and I started spitting up blood. I now know it was WG. A young man in our community also goes to JH for WG. Of course, now we've permanently relocated to the OBX which makes JH even further! Still have lots of faith in MCV and it may be I won't have another RTX round in September. My rheumy is a UNC grad and went to school with Dr. Falk. I may end up at UNC for further study and decisions. Realizing we are all different, it still helps formulate ideas and questions when we learn about each other. Thx for sharing!

KB:smile1::smile1::smile1: