Question for the ladies.

[Elena]

Ah, kind of an embarrassing question here. I was wondering if anyone have noticed any changes "down there" after getting WG? Like more soreness, or in the amount of vaginal discharge..

I'm not sure if this got anything to do with WG or any of our meds at all, but I just wanted to ask you guys, before I consider mentioning it to my WG docs. I've been noticing an increase in soreness for the past months and also an increase in vaginal discharge. However I went to a "normal" (in the sense of no WG-experience) gynaecologist and he could see nothing wrong except a little soreness. So no infections. He proposed it might be the pred doing it.

[Nancy-S]

Myalgias and neuralgias seem to affect almost everything these days. But I'm without dx nor treatment. For me, everything hurts and nothing is unaffected. Wish I could help more. I sure hope it resolves quickly for you.

[Sangye]

It sounds like it's likely due to hormonal changes. Pred and ctx are the main culprits. Are you on either?

[mama2005]

While on pred I had a change in tenderness. I also had yest infections all the time from the antibiotics. I have noticed being off pred for about three or four months it has become better. Good luck

[Elena]

I'm on 7,5 mg of pred, but I haven't changed the dosage since this summer.

[Sangye]

The longer you're on pred the more it disrupts the endocrine system. And when you go off of it, the imbalances don't go away, but they do get a bit better. Hormone changes also change the viscosity of vaginal secretions, making them more or less viscous, depending on the imbalance. More viscous secretions might make it seem that there is more.

[Elena]

Well, that sucks. I had hoped going off pred would solve much of my "problems." Not that I see being without pred in my near future anyways. Seems like my docs are veery conservative about pred. I mean, I've never gone below 7,5 mg in almost 3 years and I've been in remission for at least a year now. Although I've never heard my docs use the word remission.

I am always amazed by how much knowledge you have, Sangye. Thank you for all the good advice and support you give us :)

[freakyschizogirl]

Well, that sucks. I had hoped going off pred would solve much of my "problems." Not that I see being without pred in my near future anyways. Seems like my docs are veery conservative about pred. I mean, I've never gone below 7,5 mg in almost 3 years and I've been in remission for at least a year now. Although I've never heard my docs use the word remission.

I am always amazed by how much knowledge you have, Sangye. Thank you for all the good advice and support you give us :)

Hi Elena - i've been on pred over a year and on 5mg for 8 or 9 months. I am told i am now in remission and tapering down to 4mg at the moment. Everyone is different and it depends on your circumstances i'm sure. I am by no means an expert on this subject but it does puzzle me why they arnt tapering you down slowly. Any thoughts Sangye/ Al?

[drz]

Hi Elena - i've been on pred over a year and on 5mg for 8 or 9 months. I am told i am now in remission and tapering down to 4mg at the moment. Everyone is different and it depends on your circumstances i'm sure. I am by no means an expert on this subject but it does puzzle me why they arnt tapering you down slowly. Any thoughts Sangye/ Al?

Like everything else in treatment there is no consensus on tapering. Some expert think that once you hit a low enough dosage, like 5 mg, it may help avoid flares to stay on this dosage at least while you are on any maintenance meds like Imuran or MTX. This was recommended to me so I have been at 5 mg for about six months. I think another consideration might be how dangerous a bad flare can be for you. For those of us with considerable kidney damage and lung damage a big flare could be fatal so more caution seems wise.

[Sangye]

I'm also concerned that you are being kept on 7.5 mg without tapering. That doesn't seem right. Weggies with major sinus involvement have the hardest time getting off pred, but they should always be given the chance to try. And everyone else usually can get lower or off of pred. The longer you're on pred the more damage it does, and the harder it will be to get off of it. I suggest you have a long talk with your main Wegs doc about this. If s/he is keeping you on that dose out of fear alone, that isn't good enough.

[marta]

This is interesting discussion. I was talking to a Weggie friend in Edmonton and she told me her taper regime and it almost made me choke on my coffee right there at the table. She's been on pred for over a year and when I was talking to her it was her third day from the previous taper and she went from 15mg to 10mg. She said she was feeling horrible, terrible headache and everything else that you would expect with such a crazy drop. Her doc wanted her next taper to be two weeks later going from 10mg to 7.5mg and to 5mg two weeks after that, continuing with that two week at 2.5mg regime until she's off. I so remembered Sangye's story of going down .5mg too fast about a year or so ago and it set off a flare. I remember you saying that Dr. Seo told you that if you would have gotten it within the first few days it would have probably stopped the flare. It's such a tricky business making us Weggies healthy and getting consensus among the pros. My doc is very conservative taperer as well, and despite the fact that I would love to be off the stuff - like RIGHT NOW - I'm very glad that she is as I have no interest whatsoever in going back to flare land. I'm at 6mg and 7mg altering daily for a month, then 6mg for a month then 6mg and 5mg alternate days for a month, then I have an appointment to asses. I went from 7 to 6 in one month and felt the headaches, so this is much more up my alley as far as quality of life goes.

Bla bla bla - I know, I can't stop once I start.

Take care Elena, I hope it gets figured out. I too have had pain, but I think mine is because all of the plumbing is atrophying from the cytox in the early days. You're probably not there - I was primed and ready due to my age when I got whacked by the Wegener's stick.

[freakyschizogirl]

Hey Marta

I'm tapering 5-4mg of Pred alternate days like you and will be down to 4mg for a month next week - i keep getting headaches this week but put it down to stress, but i suppose it could be the withdrawl of the Pred too?

[pberggren1]

I've been on pred for about 4 and a half years straight now. Anywhere from 10 to 60 mg.

I started to taper again from 20mg about 2 weeks ago. I went to 15 for a week then to 9mg. I will stay at 9mg for at least a month then go down to 8 if everything is looking okay. My doc even put it in writing that he does not want me tapering any faster than 1mg per week once I get down to 9mg. He said it is too risky especially since I have been on it for so long. He said the adrenals would not have chance to kick in.

Marta, I think Sangye was refering to adrenal function, not flaring, while tapering the pred like that. That is the issue when tapering pred below 5 mg or 10mg. Dropping from 15 to 10 is usually no big deal but after 10 one should try and go a bit slower like 2.5 every 2 weeks but once hitting 5 then I personally would not want to go any faster than 1mg per month.

[annekat]

I had trouble going from 15 to 10 and had to hover around 12.5 for awhile. I'll now be at 10 for quite awhile, according to my doc, before attempting to taper lower. When the time comes, I hope to go 1mg at a time, based on what I've read here, but I don't know for how long on each tapering.

Anne

[pberggren1]

Ya, some have trouble at 15 as well. Pred: the neccessary evil........lol.

Anne, hopefully you can eventually get off pred. How are you feeling overall?

[delorisdoe]

good to see you still join the ladies only threads phil...

[pberggren1]

good to see you still join the ladies only threads phil...

You know me, I love the ladies.......lol.

[annekat]

Ya, some have trouble at 15 as well. Pred: the neccessary evil........lol.

Anne, hopefully you can eventually get off pred. How are you feeling overall? Thanks for asking, Phil. I was doing really well but just started having trouble breathing and coughing a lot again. It coincides with the start of allergy season here, which I don't know if could be a factor, as I do have significant allergies. At my last doc's appt. in mid Feb., my breathing function was down a bit, even though I felt OK, and the doc ordered an xray along with my blood test. I haven't heard anything so guess the results were OK. But I feel worse the last few days and especially funky today, almost like I have a bug of some sort. Haven't eaten anything yet, maybe that will help. I will see the doc this coming Wed. so if still feeling bad can deal with it then.

Anne

[pberggren1]

At least you see your doc soon. Hopefully you guys can get things figured out.

[Sangye]

Yes, I had adrenal function problems, not a flare. Good memory, Phil! But Marta you still got the main point and the very key point about not going longer than 2-3 days at too low a pred dose. So gold stars for both of you.

That taper your friend is doing is absolutely terrifying, Marta. I can't imagine any rheumy with half a brain thinking that's okay. Even a rheumy who doesn't know Wegs usually gets the pred taper right or at least close since it's used for so many conditions.

[annekat]

At least you see your doc soon. Hopefully you guys can get things figured out. Thanks, Phil. I do feel better now after a meal and a nap. But still have more of a nagging cough than before, so will get it checked out.

Anne

[pberggren1]

Yes, tapering pred 2.5 week all the way to zero would terrify me now. Even my first Wegs doc, an internist, told me not to taper any faster than 1mg per month once down to 5mg.

[Elena]

I am going to ask about tapering again the next time I'm going there (in 2 weeks.) It's like every time I'm there I ask about reducing my pred dose, however each time they want to adjust my immunosuppressant instead, and because of that they are scared to do anything about the pred. I will be a lot more stubborn about this time though. Going to push the subject a little, cause they never seem to address the subject voluntarily. I even had to push them to get a bone density measurement..

[marta]

Yes, I had adrenal function problems, not a flare. Good memory, Phil! But Marta you still got the main point and the very key point about not going longer than 2-3 days at too low a pred dose. So gold stars for both of you.

That taper your friend is doing is absolutely terrifying, Marta. I can't imagine any rheumy with half a brain thinking that's okay. Even a rheumy who doesn't know Wegs usually gets the pred taper right or at least close since it's used for so many conditions.

I know Sangye. When she was telling me what she's doing with the pred, my mouth was hanging open. All I could think about was you last year going through hell because of such a small drop that happened too fast. My dad also had to wean pred last year and almost went into adrenal crisis a couple of times - same thing, his doc gave him an insane pred wean. I ended up rescheduling his wean and the day when he looked like he was going to die, I just told him to pop a couple of extra mg of pred and within an hour he went from the sickest I've ever seen him in my life, to almost normal. He's been calling me Dr. Marta since then, and shockingly now calls me for advice. This is very very funny if you know our relationship.

Thanks for the gold stars. I like those. I came to Canada after the age where gold stars were given out and have always felt a little ripped off for never getting any.

[pberggren1]

I know Sangye. When she was telling me what she's doing with the pred, my mouth was hanging open. All I could think about was you last year going through hell because of such a small drop that happened too fast. My dad also had to wean pred last year and almost went into adrenal crisis a couple of times - same thing, his doc gave him an insane pred wean. I ended up rescheduling his wean and the day when he looked like he was going to die, I just told him to pop a couple of extra mg of pred and within an hour he went from the sickest I've ever seen him in my life, to almost normal. He's been calling me Dr. Marta since then, and shockingly now calls me for advice. This is very very funny if you know our relationship.

Thanks for the gold stars. I like those. I came to Canada after the age where gold stars were given out and have always felt a little ripped off for never getting any.

I'm sure we have many docs on the Forum. Your dad's level of trust and respect for you spiked to a very high level. Good for you for takig control of a situation you knew was not going to get any better.

This reminds me of a similar situation a couple of months ago. A friend of my dads came down with a severe ear ache in his left ear one day. It was a Monday. He came over to the house to talk to me about it. He had already taken about 20 ounces of whisky and several ibuprofen but nothing touched the pain. He let me look at his ear drum and it looked caved in and inflamed. I had 50mg tabs of pred left and some Moxifloxacin as well. I told him to take one of each a day and I would get him in to see my ENT on Wednesday. He was very reluctant, but he did take it. The next day the pain was gone. He went to see my ENT and and he asked who put you on pred and Moxi. He said: Dr. Phil. My ENT told him I probably saved his hearing.

[annekat]

We see so little of our docs that sometimes we have to take things into our own hands. I have extra pred around and won't hesitate to use it if I think it will save me from a crisis.

Anne

[pberggren1]

We see so little of our docs that sometimes we have to take things into our own hands. I have extra pred around and won't hesitate to use it if I think it will save me from a crisis.

Anne

I keep all my left over meds for at least a year.

[freakyschizogirl]

I always trade meds with my mum - she had my left over MTX while she gave me some 1mg Pred yesterday. Its good to share!

[Sangye]

This reminds me of a similar situation a couple of months ago. A friend of my dads came down with a severe ear ache in his left ear one day. It was a Monday. He came over to the house to talk to me about it. He had already taken about 20 ounces of whisky and several ibuprofen but nothing touched the pain. He let me look at his ear drum and it looked caved in and inflamed. I had 50mg tabs of pred left and some Moxifloxacin as well. I told him to take one of each a day and I would get him in to see my ENT on Wednesday. He was very reluctant, but he did take it. The next day the pain was gone. He went to see my ENT and and he asked who put you on pred and Moxi. He said: Dr. Phil. My ENT told him I probably saved his hearing.
OMG Phil do not ever do that again. It's one thing for someone who's very savvy about pred in their own body to take a bit more but never, ever give pred or an antibiotic to someone else. He should have gone to the ER and received proper treatment. Either one of those drugs could have been deadly.

[pberggren1]

The ENT prescribed the same thing 2 days later. He said he had taken both in the past.

[Sangye]

Yes, you got lucky. I've taken some medications in the past that would kill me today.

[pberggren1]

I don't like to see people go deaf if I can help it.

[Lightwarrior]

I don't like to see people go deaf if I can help it.
Phil I agree with Sangye. I know that your heart is in the right place,but the drugs we take are extremely dangerous. You are very lucky that it helped and didn't hurt your friend. Advising and/or taking him to the ED would have been best. Besides the risk of harming someone you could have been in legal trouble as well.

[Sangye]

What LightWarrior said.

[pberggren1]

I understand your concern guys. I have talked with my docs about this, ENT and Wegs doc, and they both said they would have prescribed the same thing. But they would have rather seen him go to the ER. My friend is not a big fan of the ER and has had a really bad experience there. He does not know medicine well at all or anatomy, so he is uncomfortable with alll this because he does not know it. If I run into a situation like this again I will, just like I did with my friend, try and convince them to go to the ER.