Posted 10/11/2017 9:17 PM (GMT 0)
Hihi, looking for opinions for my fiancé please! (posting with his permission, of course)
He has had UC for 13 years, and was Dx with PG back in April. A light fall at work back in March seems to have been the catalyst for the PG. The hospital he went to with what we originally thought was an infection on his shin from the fall operated and removed all of what looked to be infected tissue, before confirming that the wound was 'sterile' and deciding it was PG. Also, they found he was extremely anemic (cbc 5.4) and had to do transfusions to get him up to snuff.
It took about 2 months, but the wounds closed in June and his poor two-face tattoo has become no face (its actually kind of funny, just the face of the tattoo was scar tissue). When he was released from the hospital, they started him on 60mg, where he was supposed to taper down to 40mg after 2 weeks, then 20mg. At the 20mg point the PG started to flare up (before the wounds healed, they started to reopen) and they upped the prednisone to 40mg and ended up tapering by 10mg per 2 weeks instead. Seems that worked, right?
His UC flared up again mid August (new job was stressing him out, he tried a new pizza place even though cheese is a big no-no, and wasn't sleeping enough). Couldn't get an appointment with his GI quick enough, so went to his PCP and they gave him a script for 20mg of prednisone for 2 weeks. It wasn't helping though, and by the end of September, he noticed a bump under the scar on his shin, so he kept that GI appointment and they put him on (8mg?) of Uceris. While his UC flare subsided, the PG got worse, though, it was not nearly as painful as it was when it first happened. This GI was particularly difficult to get in touch with, and when he did manage to tell him his PG was getting worse, he was told to wait until that Friday. Two days prior he was back in the hospital, and his cbc count dropped to a 9.8. No transfusions needed, but they gave him an iron intravenously.
This time he was released with 40mg of prednisone, and they wanted him to follow up with his original GI (from when he was first Dx with UC 13 years ago) to figure out a tapering plan, and found him a dermatologist who was an expert on PG. He managed to see the derm first, who said this was the lightest case of PG he has seen, but recommended cyclosporine, with his GI's approval. A couple days later, he sees his GI and says no to the cyclosporine, and insists on 6mp instead, and also monthly iron iv treatments. She also wants him to taper the prednisone down by 5mg weekly this go around.
Now, we're both worried about the side effects of the 6mp (him much more so than I), so he called back his GI asking if she really thought it was necessary, and asked if it would be smart to take it since we were going to a concert in 2 nights. She insisted on taking it still, and to start after the concert. His leg had been healing on the 40mg, be it slowly, and now that he's tapered to 35 on Monday it hasn't healed at all compared to his bandage change the day before. Since we're also going across the country next weekend, he's not up to the idea of experimenting with new medicine -- health first and all, but it was a prepaid trip and he insists on still going, since his only issue is that he can't walk around for more than an hour at a time (like I said, light case of PG).
He started the 6mp today, but we're both wondering why they didn't just do the same treatment as last time? Yes, prednisone long term isn't awesome at all, especially with the high risk of developing osteoporosis in the future, but now that he's doing better sticking to his diet (as much whole foods as possible, completely avoiding triggers like dairy and hard alcohol), managing his stress, and sticking to Apriso (which he hadn't taken since 2013, UGH). Now we're worried about how its going to be dealing with the side effects of the 6mp, and worse, tapering off of that and wondering if the PG will relapse. Wouldn't really be such a problem if these doctors weren't so difficult to get in touch with, and would explain their choices rather than say you just have to do it when asked.
Hoping for opinions for those with PG and/or UC please, and no, it will not be mistaken for medical advice. Thanks in advance!