Newbie Questions

[hjyon]

Hi Everyone,

I hope everyone is doing well as can be !

I am alright having a hard day. I am down to 10mg of prednisone and think my body is flaring again, *sigh*.

Anyhow, I do have a couple questions for all of you, and hopefully you can provide some insight.

1. Acid Reflux: is this a symptom of WG? I ask because I have Acid Reflux, however, when I am on the prednisone, the AR goes completely away. Which I thought was weird because I thought prednisone was suppose to actually case AR.

2. Gingivitis: I have fabulous teeth, always have. Never had an cavity but in the past few years I will get those HORRIBLE boughts of gingivitis. For no good reason. I take excellent care of my teeth, but then out of nowhere my gums inflame and bleed, and they hurt so badly you would think I have NEVER in my life brushed my teeth or ever been to a dentist. Again could this be related to WG? Though, I do have to say since I have been on MTX I have not had any issues with my gums.

I thought I had another question but can't recall it right now If I think of it later I will post again.

Thanks in advance for your assistance.

-Holly

[annekat]

Hi Everyone,

I hope everyone is doing well as can be !

I am alright having a hard day. I am down to 10mg of prednisone and think my body is flaring again, *sigh*.

Anyhow, I do have a couple questions for all of you, and hopefully you can provide some insight.

1. Acid Reflux: is this a symptom of WG? I ask because I have Acid Reflux, however, when I am on the prednisone, the AR goes completely away. Which I thought was weird because I thought prednisone was suppose to actually case AR.

2. Gingivitis: I have fabulous teeth, always have. Never had an cavity but in the past few years I will get those HORRIBLE boughts of gingivitis. For no good reason. I take excellent care of my teeth, but then out of nowhere my gums inflame and bleed, and they hurt so badly you would think I have NEVER in my life brushed my teeth or ever been to a dentist. Again could this be related to WG? Though, I do have to say since I have been on MTX I have not had any issues with my gums.

I thought I had another question but can't recall it right now If I think of it later I will post again.

Thanks in advance for your assistance.

-Holly

Hi, Holly,

Others will have more knowledge to share, but ..... yes, reducing prednisone at the lower doses may cause what feels like a bit of a flare, the symptoms will increase as the body gets used to the new dosage. This should only be temporary unless it is a real flare and your drugs will then need to be adjusted.

I don't have much advice on the acid reflux except that for me, too, it comes and goes and hasn't seemed to be related to higher dose pred, even though I've heard it can be.

As for the the teeth and gums, I definitely noticed more pain and inflammation in the early stages of Wegs, and some again when tapering pred at lower doses. I also think my gums have receded more dramatically since having Wegs. I have read on here that Wegs does affect the teeth and gums and can also cause sores in the mouth (or maybe the drugs suppress our fighting off the sores).

BTW, the search function on here is pretty good and if you search "teeth", for example, you will find many posts and threads on the subject.

Anne

[hjyon]

Thanks, Anne! I will do a search - that is good to know.

[annekat]

Holly, I just looked back at your first post to the group and it looks like you've only been on prednisone a short time, and not the extended time of months as most of us have been who were diagnosed some time ago. Therefore, what I said about pred tapering wouldn't really apply for you, I don't think. It sounds like you haven't really gotten a dx yet and haven't started on the standard regimen of drugs. For a couple of years before my dx, I had what seemed to be sinus infections and was also prescribed antibiotics and pred, several times, with the usual pred taper only being 10 days to two weeks. The pred really helped to clear things up, though not permanently, but the long term pred issues really didn't apply. Whatever "flaring" symptoms you have would be from the disease itself, if you have it, and not from the short term pred taper. Someone could correct me on this. I hope I'm not wrong in interpreting what you said, since I can't see your original post right now as I write.

Good luck with your searches!

Anne

[maria garcia]

How long have you been on prednisone? My daughter was on 10 mg of prednisone for one month started to taper on the second month and symptoms where back oh she was also on MTX for the same time 15mg. Now they put up her MTX and put back her prednisone to 7 1/2. I guess the MTX has not kicked in yet.

[annekat]

How long have you been on prednisone? My daughter was on 10 mg of prednisone for one month started to taper on the second month and symptoms where back oh she was also on MTX for the same time 15mg. Now they put up her MTX and put back her prednisone to 7 1/2. I guess the MTX has not kicked in yet.

I have been on prednisone since my diagnosis in April of 2011. I started at 60mg/day and now 9 months later have tapered down to 10 mg. It sounds to me, and I think some others on the forum, like starting your daughter off at only 10 mg. is pretty unusual and wouldn't do much to get her into remission. But then I don't remember all of what I've read about her situation and am certainly no expert on any of this. I don't remember whether you have a Wegs specialist for her or were in the process of trying to get one. Nor do I remember when she was diagnosed. But I think the treatment I've been on is pretty common, starting with 60mg., along with the CTX or MTX, and tapering the pred over a period of several months or more. At the lower end of the taper, after all those months on pred, is when tapering becomes very tricky to avoid the return of symptoms. In your daughter's case, it sounds like she may never have had enough pred to begin with, which would also allow the return of any symptoms which started to clear up. That is why before I ever knew I had Wegs, my sinus problems would always come back after a short run of pred and antibiotics; I wasn't getting enough pred for long enough, or the right combination of drugs, to really deal with the disease. I know nothing about MTX dosage so can't comment on that. I hope you get it figured out and she starts to show more improvement that lasts.

Anne