(Finally) Some Great News

[Sangye]

Two years ago I started seeing an endocrinologist at JHU to find out if I could ever get off pred. I'd been stuck at 2.5 mg for several years and couldn't taper without my adrenals shutting down. (I didn't need it to control the Wegs.) She switched me to hydrocortisone for 3 reasons: it functions a bit more naturally than pred, you can do adrenal function lab tests while on it, and if the dose is low enough it allows the adrenals to start functioning.

I definitely felt better on HC right away. Pred--even at a very low dose--makes me very weak. I'm just really sensitive to it. Even at 2.5 mg I still had a moon face and couldn't lose any weight at all. My first adrenal function tests were awful. The endo was optimistic and said it can take a year for the adrenals to come back on. We re-tested every 6 months and they just wouldn't play. Finally last fall I started taking an adrenal supplement that doesn't contain cortisol, but heals the glands. (I'm not going to say which. You MUST do this under a holistic doctor's care. Someone who really knows adrenal stuff) Slowly my adrenals started waking up. And finally, as of this month they're awake! I've begun tapering the HC and should be completely off in 10 weeks. I sensed they were back on, as I'd begun to lose weight without really trying. I've lost 13 lbs since May!!

A bit of my history:
I first started pred with pulse steroids (ie, 1,000 mg IV solumedrol = 1,500 mg oral pred for 3 days) and went on to the usual high-dose regime after that. 60 mg, 40, etc... for several months. When I tapered off, I never felt okay again. No one would listen to me. Once when I was hospitalized for pneumonia a doctor did an AM Cortisol test (adrenal function) and I had zero. Zero adrenal function and I was walking around without being on steroids. No one would re-test me. I was off pred for 2.5 years like that. Even Dr Seo didn't believe that my adrenals were off but I knew they were. "Thanks" to a severe flare in 2009 I had to go back on pred and hadn't been able to get off again. Dr Seo was sure I'd never get off. I saw an endocrinologist who blew me off. Couple more years went by and I decided to see another. And there you have it. I haven't had functioning adrenals for SEVEN YEARS and they came back on.

I included all these details in case someone else out there can benefit.
Key points:
- You can't switch to HC while you still need steroids to control the Wegs

- If you've been stuck on low dose pred for awhile and you don't need it to control the Wegs, see an endocrinologist who specializes in adrenal issues

- Don't let anyone (even a world-famous Wegs doc :wink1: ) tell you it's impossible until you've given it a good try.

- No one knows your body better than you.

- The body has an amazing ability to heal itself when given what it needs.

- No matter how long you've had Wegs and how much it's messed you up, you will be able to find something Woot-worthy. :w00t:

[Pete]

Good for you, Sangye!! Hope the improvement continues.

[HopeinTN]

It's so good to hear from you and such great news!

[marta]

Sangye, you're a rockstar in Bhuddist attire. I love your spirit and the fight that you've given this nasty little hitch-hiker.

I'm so happy to read this. I'm not on here much these days, but occasionally check out today's posts and poof, there you were. This is awesome, and I'd like to talk to you more about this so that we can maybe incorporate this option into the Autoimmune Disease Center that I'm working on. I want there to be options from every angle to hit this thing and this is definitely something amazing that needs to be a part of a healing process that not just Weggies go through but most Autoimmunies.

I'm so thrilled to hear this great news and am sending you big cyber hugs from the other side of the continent.

[annekat]

Sangye, I'm thrilled to see you on here with this great news and your great explanation of the sequence of events! And a big congrats on the weight loss, too; that should make you feel better in itself. Woohoo! :w00t::w00t::w00t: !! And I'm also glad that Marta happened to look in on us just after you posted. Together, with movers and shakers like you two and some help from the rest, we can beat this thing!

[pberggren1]

I am so happy for you Sangye. This is such excellent news and totally made my day. I take it your energy level is also increasing? I suppose you wont notice a major change in your energy until you have been off the HC for a while.

I should also be off pred in about 4 or 5 weeks after being on it for almost 6 years.

[Dirty Don]

Just glad you're feeling better!! Yea! Don't know if it will help some people, but I've been massaging my adrenals...easy to find: 1 inch either way of belly button, then 1 inch up approximately...you can feel them a bit when you've hit them...then massage for short periods of time. Did it work? I think so...no real probs with weaning pred at this point.

[mishb]

That is super fantastic new Sangye.

It has taken so long and certainly hasn't been worth all the pain and struggles you have gone through ........but WOW, look at you now. :hug3:

Let's get this wegs dog to sleep for good. Onwards and Upwards girl :thumbsup:

[Sangye]

Thanks everyone! I'm really excited about this. There's a long chain reaction of good stuff that happens if I can lose a decent amount of weight. I could get off a few drugs and the increased intracranial pressure should resolve. And the still-never-diagnosed-but-we-know-it's-there sleep apnea should also resolve itself.

Phil, I'm thrilled that you're almost off pred. I didn't think that'd be possible for you-- thought you needed it to control the Wegs. Hot diggety, man. I don't really have any increase in energy yet but we'll see.

[Psyborg]

Good news Sangye, I hope your situation continues the improvement :)

[Debbie C]

Sangye,It's so good to hear from you,it's been awhile and what great news !!! I'm so happy for you that "you" finally confinced someone what the problem was and everything is going good.What a difference this will make in your life.Will you still be taking any maintence drugs ? Don't stay away so long:thumbsup:

[rebekah]

I'm so incredibly happy to hear this, Sangye! What great news! Like everyone has said, I hope you continue to improve and feel better... and get that energy back soon. :)

[Sangye]

The Wegs situation is the same for me-- as soon as the rtx barely wears off it becomes very active again. We've been experimenting with different treatment schedules since last year. The annual month-long rtx treatments were flattening me for 9 weeks, and I was in bad shape for months while the rtx gradually wore off. Since March we've been doing a single rtx infusion every 4 months and it's working well.

Dr Seo said recent research has shown that a single infusion every 6 months is very effective at keeping most people in remission. Six months is a bit too long for me to go, but 4 months seems to be just right.

[pberggren1]

Phil, I'm thrilled that you're almost off pred. I didn't think that'd be possible for you-- thought you needed it to control the Wegs. Hot diggety, man. I don't really have any increase in energy yet but we'll see.

Actually I have never really needed the pred to keep the Wegs at bey. I flared in late 2007 and again in 2009. Then in 2009 and 2010 I had major sinus and lung infections that warranted an increase in pred as well. Each time I thought I might get off, something else came up so I needed to up the pred. Then I flared in 2011 and had more lung infections in 2011 and 2012 then I flared in 2013. And for most people pred is not used to keep the Wegs at bey anyway. There is no sound evidence that pred keeps Wegs at bey alone. If I have a flare again I will not go on the pred, I will just have 500mg solumedrol along with the rtx infusions. And speaking of rtx, I am also getting it 1g infusion every 4 months.

[Sangye]

I should have been more specific. I didn't mean low dose pred would keep Wegs in remission, but for many people it is necessary to keep their symptoms under control and make life livable. Dr Seo told me people with a lot of sinus involvement have the most trouble being lower than 10 mg pred. As we know, even if you're in remission you can still have significant symptoms that require pred. Fortunately that wasn't the case with me.

[Alysia]

Hi Sangye.
congratulations. great news. :thumbup:
thank you for sharing this important info with us.
in fact, all this "adrenals issue" is new for me.
none of my docs ever mentioned anything about it. (I think Im the only weggie they ever saw) :sad:
does it mean that as long as Im on pred, it is better to check the functionning of the adrenals ?

[Sangye]

Hi Alysia, as long as you're on pred you can't check adrenal function. Pred stays in the body too long and interferes with the testing. Hydrocortisone is dosed differently (one dose in the morning, one in the afternoon). To do the test while on HC you don't take the afternoon dose or the testing day's morning dose, and then you do the lab test early in the morning.

Have your doctors told you what to do if you have an accident, surgery, severe stress, etc while on pred? It's very important

[annekat]

I should have been more specific. I didn't mean low dose pred would keep Wegs in remission, but for many people it is necessary to keep their symptoms under control and make life livable. Dr Seo told me people with a lot of sinus involvement have the most trouble being lower than 10 mg pred. As we know, even if you're in remission you can still have significant symptoms that require pred. Fortunately that wasn't the case with me. As drz keeps telling me, those of us with a lot of sinus involvement have had significant structural damage to the sinuses and the whole area. So we will keep having lots of excess mucus and other issues even as we head toward remission, because the damage is mostly permanent and we will always have the symptoms. I'm not sure where inflammation comes into the picture if we are in remission. I feel close to remission, but am still at 10mg pred and 15mg/wk MTX and my doc hasn't talked about lowering either. So, that would be a medicated remission, of course. I expect to have the nasal/sinus/ear symptoms, and the bronchial symptoms from the sinus drainage, the rest of my life and wouldn't be surprised if I stay on pred indefinitely. But it is all speculation at this point.

[annekat]

Have your doctors told you what to do if you have an accident, surgery, severe stress, etc while on pred? It's very important
They haven't told ME, I don't think..... I did have some oral surgery and the surgeon was pretty savvy about Wegs and knew I was on pred.... I don't remember what we did about it.

[Sangye]

This applies to anyone on pred and every doctor normally thoroughly informs a patient when s/he is put on pred doses 20 mg or higher for at least 3 weeks. (That's the dose and length of time necessary to shut down the adrenals) But PLEASE VERIFY this with your own doctor, as I cannot give medical advice.

If you have an accident, trauma, surgery, severe stress event, etc. it can put you into an adrenal crisis, which means your usual pred dose is not enough to keep you alive. This is fatal within 24 hours if not addressed. Normally you need to take double your daily pred dose as soon as possible, but if you're already at higher doses (eg 60 mg or higher) you might need less. If you are unsure, you MUST call your doctor immediately (page them) OR go to the ER immediately.

This is also true for one year after you go off pred. You should always carry enough pred with you and your emergency card in your wallet and/or Medical alert necklace should indicate this.

All of my docs have told me this (even the lousy ones). It's standard of care.

[Alysia]

Have your doctors told you what to do if you have an accident, surgery, severe stress, etc while on pred? It's very important

Hi Sangye.
thank you so much for the reply. no, they didnt tell me anything about it.
I read what you just wrote. it is scary :w00t:
so it is negligence that none of them ever mentioned it to me.
and it is no less then 5-6 good docs. (not to mention the bad ones).
thanks again

[annekat]

Thanks, Sangye. I don't believe I ever heard this from my doc. And I don't remember whether the oral surgeon had me take extra pred. He may have. Oral surgery is not as big a deal as some things, and he was a very good surgeon, and it was very easy on me, but I did have 4 teeth extracted at once. They absolutely needed to come out.

[Sangye]

Hi Sangye.
thank you so much for the reply. no, they didnt tell me anything about it.
I read what you just wrote. it is scary :w00t:
so it is negligence that none of them ever mentioned it to me.
and it is no less then 5-6 good docs. (not to mention the bad ones).
thanks again

If you're on the doses I indicated, then yes, it is definitely negligent of them not to have informed you of this. Please do have a discussion with your main docs about it, and ask for their directions.

[pberggren1]

Thanks for posting about the adrenal crisis during trauma and extreme stress.

I am of course one of those Weggies that has needed low doses of pred over the years for infections, etc.