More questions

[carrottop50]

I have an appointment to see a pulmonologist next week... so hoping for some answers ...not sure if he knows about Wegener's... I would love to find someone locally that knows something about Wegener's. Ok for my questions: First I have had some red spots on my arms looks like a blood vessel broke under the skin... so was wondering if that is something related to Wegener's. 2nd question is I have bleeding under my big toe on my right foot... it isn't ingrown toe nail...but more of a streak of blood going down the nail... no pain... does anyone have this with wegener's or am I just going crazy because all of this stuff keeps popping up. Thanks for your help.

[drz]

Various skin problems can occur with GPA but I have found it is very difficult to find much agreement by doctors on what is caused by GPA and what is happening from other unknown factors. The skin issues do tend to get better with proper treatment for GPA but they can happen from other health problems and thus may need additional treatment too.

[Rose]

[QUOTE=carrottop50;9130 First I have had some red spots on my arms looks like a blood vessel broke under the skin... so was wondering if that is something related to Wegener's. 2nd question is I have bleeding under my big toe on my right foot... it isn't ingrown toe nail...but more of a streak of blood going down the nail... no pain... [/QUOTE]

Hi

Yes I have occasional spots that appear which looks like blood vessels have broken. Funnily enough they only appear in my lower arms. I usually only have one but I have had up to 3 at a time and they usually improve disappear within a week to 10 days. I have experienced them since diagnosis and treatment (March 2008) I did mention them once to the doc in those early days and she says it is probably the pred. Then I was on high doses, today I am on 2.5mgs daily. So who knows?! As I say, it is only occasional maybe 3 to4 times a year. I think the bleeding under your toe could be related.

I understand what you mean by thinking you are going crazy. Who first said it is the "disease that keeps on giving"? When I get these weird and wonderful things going on as long as I feel OK ( no obvious signs of something serious going on like temp, nausea, severe bleeding etc ) I will wait and watch. If it gets worse after a few days I will contact the doc and also if it doesn't improve after a week or so . Dont know for sure obviously if it is the same thing but if it is something to be concerned about I doubt if it will disappear and will probably get worse.

Rose

[Debbie C]

I also get those spots and yes it is wg related.The dr. said it was from the pred,that it makes your skin so thin. But unless you get a bunch of them like ourpula (sp) I wouldn't worry about it,they will go away.
It is VERY important that your pulmy knows about wg especially if you have lung relted issues,if he doesn't know of it see if he can refer you to someone who does. Good luck

[annekat]

I get the same red spots on my forearms and I've heard that is a common location for them, though some may get them on their lower legs or other places. I guess the thinning of the skin from pred could make them more pronounced and noticeable, but I seem to get them more when I'm tapering pred, so I consider them a sign of disease activity. Recently, I had a medium sized, dark bruise from some physical activity I did, and as it was starting to heal, some of these red dots appeared around its perimeter. I think of them as blood blisters, partly due to thin skin but also possibly due to the tendency of the blood vessels to form granulomas. So I really don't know. I just know that they are easy to tell apart from other red dots such as small scratches, pimples, or other small injuries from something external. For me, they usually disappear in about a week, maybe 10 days, and there can be several small ones or one bigger one. In any case I wouldn't worry about them unless they happen a lot and don't disappear soon.

[carrottop50]

Thanks for your help!!! I have another question... If you are having a flare do you happen to know it is about time for you next MTX dose... It seems about 2 days before my next Mtx dose I seem to get more short of breath and have these strange little things happen... like this evening I just got up from a seated position and seem to have this terrible fatigued feeling happen... I have been short of breath for half of yesterday and most of today. Next dose of Mtx is due Wednesday. When I was so sick about 10 years ago I also had glaucoma and after I did get better the glaucoma went away. Does Wegs cause glaucoma? I have seen others list glaucoma on here.

[drz]

Thanks for your help!!! I have another question... If you are having a flare do you happen to know it is about time for you next MTX dose... It seems about 2 days before my next Mtx dose I seem to get more short of breath and have these strange little things happen... like this evening I just got up from a seated position and seem to have this terrible fatigued feeling happen... I have been short of breath for half of yesterday and most of today. Next dose of Mtx is due Wednesday. When I was so sick about 10 years ago I also had glaucoma and after I did get better the glaucoma went away. Does Wegs cause glaucoma? I have seen others list glaucoma on here.

Pred can make it worse.

http://emedicine.medscape.com/article/1205298-overview

[annekat]

I, too, have noticed feeling a little worse a day or two before my MTX dose is due. However, I can't be sure that is the cause, as I spend the weekend dealing with the public, which can be stressful, and then take my MTX on Tuesday. So it could be the weekend stress that is causing fatigue and other issues on Monday. So you might look at what you do every week and when; otherwise, maybe it IS the MTX in your system running low. I haven't heard or read about this happening, but it has crossed my mind.

[carrottop50]

Went to pulmonologist today... well we will see how this goes... go in for pulmonary function tests in about 10 days. I can see this will take some time. He said that I will have that done and not see him for the results for 3 months. He says he thinks it maybe asthma or congestive heart failure... I have been this road before in fact that is what the doctor thought I had when he put me in the hospital 10 years ago and I didn't have neither of those. I see I am going down memory lane and it is getting old. He also said that it might be the Mtx that is giving me a problem... and that he might need to take me off of it which doesn't sound like a good option for me. When I got so sick before I wasn't on Mtx then..... He did say to keep track of the things that are going on and let him know about them and watch my temperature closely. I think right now everything that is going on with me is so mild compared to most of you on here that they will never get it figured out until I am really sick again.