Could it be possible????

[Stephanie78]

I am a chronic thinker... And lately I have been thinking A LOT. One of the things that I have been pondering over has been Johns first treatment of Prednisone.
As most of you know, when John went to the ENT he was ONLY having sinus issues. He had been having them for several months and although it WAS NOT getting worse, it was getting annoying. When dx he was still only having sinus issues (Stuffiness) and that was IT. The ENT sent him to a pulmonary dr and a rheumy just to make sure other issues were not underlaying. All test came back as ONLY SINUSES. The rheumy put John on a LOW dose of prednisone for 3 weeks. It was NOT until his 3 weeks ran out that he became gravely sick! He had, had the sinus issues for several months but NOT UNTIL he was treated with Prednisone did he begin having the major issues.
I can't help but wonder IF the prednisone alone made it worse?!? If he would have treated him with the appropiate treatment WITH the prednison, maybe he would be ok today.
Kind of like Cancer PTs. I've seen some that was great, found out by a routine visit that they had cancer and with the start of treatment they seem sicker.....
Maybe I just want someone to blame...But still do you think it was possible that the prednisone caused things to get worse (or when he was off of it)?!?

Anyway, John goes to the cardiologist on Wednesday. Hopefully we will get good news.
The BAD news of the week is...His insurance runs out next week with his expiring Short Term Disability. We are going to Social Services on Wed morning to see if he will qualify for Medicaid (Any of you able to get that?!?)
The GOOD news of the week is....remember his feet? they had turned black...Well one of his toes (the worse one) started bleeding a week ago...It is now a light purple NOT black! The 2 next to it started bleeding Saturday (A purple color like old blood) so MAYBE they will turn back to the light purple from black..Which means hopefully the circulation is back to them! YAY!!!!!!!

[Stephanie78]

Oh My Gracious! I forgot!!! He is eating!!!!!! Saturday my Aunt made us lunch (we went a hour out to visit her) and he had chicken and pastry, okra, field peas, butter beans, cornbread and peaches! Then yesterday he ate Salmon, Asparagus, Salad, 2 rolls for lunch and for dinner he had 1.5 packages of ramen noodles (He loves them) 2 cresent rolls and 2 oatmeal raisen cookies!! That was more calories in one weekend then he had eatten in any given week since June!

[NicShaf]

Stephanie,
I hope things start getting better for John. I hope Social Services can find something for you guys. Good news that he started getting circulation back in his feet. Yay for improvement:)

For the Preds and if it made him worse or not, I can't really say. But I do know from my own experience, Wegs can sometimes hit fast seemingly out of nowhere. I had only sinus issues for 4-6 months, and was told I had a cold, allergies, and any other benign ailment you can think of. I had a chest x-ray the day before Thanksgiving that showed a little cloudiness, and by the first week of December I was hospitalized for 3 cavities in my lung.

Continuing to send good, healing thoughts your way.

[NicShaf]

Oh My Gracious! I forgot!!! He is eating!!!!!! Saturday my Aunt made us lunch (we went a hour out to visit her) and he had chicken and pastry, okra, field peas, butter beans, cornbread and peaches! Then yesterday he ate Salmon, Asparagus, Salad, 2 rolls for lunch and for dinner he had 1.5 packages of ramen noodles (He loves them) 2 cresent rolls and 2 oatmeal raisen cookies!! That was more calories in one weekend then he had eatten in any given week since June!

Great news!!!!! And that all sounds delicious, now I'm hungry...darn Pred! :)

[Psyborg]

It's not scientific, but I had the same initial trajectory. Coughed for months and the doctor finally decided to try treating that with a Pred Dose pack. When that ran out I crashed hard and was a disaster very quickly. Interesting, hadn't really considered that possibility before.

[Sangye]

I think I can explain what happened. John was already sick, which means his adrenals were already very depleted. The low dose of pred boosted his adrenals for the 3 weeks, but when they were suddenly withdrawn his adrenals suffered a shock and that hit was enough to weaken him, causing the Wegs to run amok.

This is not the same thing as being dependent on pred for adrenal function. That occurs if you've been on at least 20 mg for at least 3 weeks.

Also, this reflects how holistic doctors view adrenal function. You will probably be laughed at if you share it with your MD.

We see something similar with pregnant women who begin pregnancy with depleted adrenals. The mother's adrenal glands will actually draw on the fetus's. Women in this situation will say they feel much better when pregnant. When the baby is born, the mother's adrenal supply is abruptly removed and she crashes. This is the cause of post-partum depression. It's chemical. The baby is born with depleted adrenals and is more likely to be sick and the mom is more exhausted than normal. In my practice I made sure all women who were hoping to get pregnant spent several months strengthening their adrenals first. In traditional cultures, mothers and fathers were given special diets to strengthen them before attempting to become pregnant.

[Chris G]

I'm so happy to hear that he's EATING!! That's awesome.

Regarding your pred question.......here's my experience. Before diagnosis, I was having mild symptoms for about 4 months. This was not my first flare, so I knew it was coming on again. But it progressed very slowly this time - (unlike 2007-08, when I became sick very quickly and then it subsided on its own before I could be diagnosed). Anyhow, while my symptoms started getting worse, and I was trying to get a referral to the specialists, I was working with my primary doc (thank god for her - she was the only doc who believed me!). She admittedly did not know how to handle the disease, but we knew I needed meds, and my appt with the specialists was over a month away. We had already done a couple of short pred tapers, starting at 40mg, which helped a lot - but when the dose got too low symptoms would return. For about the last 5 weeks before my appt with the specialists, she had me take 15mg pred, just to get me through.

The "crap" hit the fan the night before my appointment with the specialists. My ear erupted, and all other symptoms suddenly worsened as well - it was like a damn burst. So, MY opinion is this........it was gonna hit the fan that night, whether I was on pred or not. I think that the 15 mg I was on, prevented it from being worse than it would have been. It seems like sometimes, wg hits quickly, and sometimes it just simmers with mild symptoms, until it suddenly hits full force. You'll never know for sure, but I think it might just have been John's time to have the crap hit the fan.

[drz]

My experience was similar to above. Smoldering symptoms gradually getting worse and then acceleration into serious quick crash with no warning and no prednisone or any other meds to precipitate it. It took lots of aggressive treatment including large dosages of steroids to eventually bring it under control but with lots of ups and downs during this lengthy process.

[Chris G]

Well said drz - you summed it up in 100 words or less! Sometimes I do talk too much. LOL

[marta]

That's so good to hear Stephanie, I saw your post on Facebook about the food - awesome!!!

I have a theory of my own on the preds. I was prescribed low dose pred before diagnosis and something inside me told me not to take it. In hindsight I'm very glad that I didn't take them because - and this is my theory, based on my experience, so take with a grain of salt (or a salt substitute if you're on prednisone :wink1:) - the pred works on the symptoms but not the disease, so without the immune suppressants, it fools you into thinking things are under control, while the disease is getting stronger and causing more damage under the pred mask. Then once you stop the pred, you can actually see how far the disease has gotten away on you while being masked. It's like taking pain killers when you have an injury, they (medical types) suggest you don't take them and go out and do stuff because you can cause way more damage because the symptoms of the injury are masked and you're not treating the problem.

In my Wegs experience things were progressing along slowly (slowly being from January to April with mild symptoms that were ramping up but bearably so) and then I had tubes put in my ears at the end of April and was admitted in hospital feeling like I was going to die the first week of May. So my correlation is the ear tubes, however any scientist will tell you that correlation does not neccesitate causation, so it's tricky business.

I am very glad to hear that John is feeling more like himself. It will get better, but it's a bit like the bunny hop dance - you do have overall forward momentum, however there are quite a few steps back. Just focus on the forward, and it makes things easier.

[Sangye]

It's true that treating only with pred would merely suppress symptoms while the underlying disease is still cranking up. There would be no way to tell if the Wegs is heading for a full-blown fire or if it's gonna settle for milder activity. Some people can tame the onset or a flare with low-dose pred and some people cannot. It's a complete gamble.