Oh No - now what!

[Middlesista]

Ok so right now I am hypersensitive to ANYTHING different or new going on in this GPA me and very vigilant in checking things out. A severe case of Newbie- itis perhaps?

Have been reading about rashes which there seems to be multitude of - different configurations, sizes, colors and parts of body affected. I have had a few, tiny pinpoint red dots here and there did show them to RA and we reviewed some images of the typical rash that is usually seen and my spots did not look similar-at least at this point. The reality of this is that some folks post photos or describe spots or rashes that look nothing like these images but as I have learned lots of different presentations of "stuff" so typical GPA rash might not be typical for all. That "typical" GPA rash looks so intense and painful and I feel for those folks that are dealing with that component of GPA

if I have an itch, I quickly check the itch out looking for something amiss. if I have an ache I check for swelling or redness, a cough or runny nose I worry about blood, I am forever checking my nose for any changes in shape, checking for new loss of vision - keeps me busy but I know I have to get over it but since I just decreased prednisone from 40 mg to 35 I tell myself I have to be cautious. In fact the RA wanted me to drop by 10mg of Prednisone but after reading what folks say here and since I don't know for sure if Rituxin is kicking in fully I advised him that I would feel better with 5mg drop weekly rather than 10mg weekly although know that if I think it is too fast I will talk to him again.

Anyway - I happened to notice some tiny red spots on a few of my fingertips and like I mentioned I have had a few of these scattered here and there. My RA had just been talking to me about finger issues that some folks experience so I was finger focused. So I see these tiny red dots on the tips of 4 fingers. "Oh no NOW WHAT" I think to myself as I slather bacitracin on them , I tend to slather bacitracin on almost anything. Turn the lights on brighter, to see clearer, check capillary refill and warmth of fingers and I fret. Thinking I will call my RA if the bacitracin does not fix things promptly and I fret some more and do a search for the millionth time on tiny red dots but now I add on fingertips to my search profile but don't get much for a return...so I fret a bit more. Then I look at my finger tips again and suddenly my eye catches my blood sugar tester and my brain synapses start to fire in the brain - I sigh relief and realize that those dots are from my blood sugar testing......I think. ��

Please tell me I am not alone in my fretting about such stuff.

[MaxD]

You're definitely not alone! It's only natural to be hypervigilant and suspect every little thing to stem from that damned disease. But it's prednisone that wreaks havoc on our sleep, our nerves, our tendons, our weight, our appetite, our blood sugar, ... and all our other god-knows-what-elses. Not to mention, it compromises our immune system significantly - which is why we have to take Bactrim. Once you are off prednisone, you won't have to worry so much about catching infections (Rituxan doesn't compromise our immune system anywhere near as much). I was scared to go to the theatre, to board a plane etc. at first, but since my prednisone went down below 15mg, I've traveled far and wide, not looked back and enjoyed every moment. You will get there too. It takes time, and the best remedy meanwhile is to treat your body to a nice massage!

I say all this in hindsight, but frankly I was terrified when I weaned off prednisone completely. It felt like a giving up a lifeline. So too when my doc said I could see her every 2 months instead of every month! I was sooooo nervous. Now it's every 3 months. Slowly, very slowly, I'm getting to trust my body in small steps.

[Birdie]

Please tell me I am not alone in my fretting about such stuff.

You are not alone in fretting about such stuff.

Maybe change it from fretting/worrying... to informed observation which guides wise decisions.

[Middlesista]

I don't think the Rituxin has totally kicked in yet which is why I am thinking of Prednisone as a "lifeline" at this point although I am anxious to get off the stuff. Last time I titrated down the vision went out again in my left eye so want to be cautious and the reason RA agreed on the 5mg taper

Thanks Max

[Middlesista]

Right Birdie but fretting comes easily to me..... sad to say but "it is what it is"

[debra]

My sista stuck in the middle, hello. Remembered the o, this time! Sista,this is real normal and I would imagine also healthy. It is you're one and only body, after all... In time I'm sure this will improve, as you will also. Sista, I had these three red dots on my forearm. Like a red pen tip. They would come and go, don't know why in threes? Maybe company, who knows. They went away, except for one. I guess his two friends didn't like my arm? I'm sure its just another crazy Wg thing... Sista, I'm glad you're posting a lot.... Awesome, as I get bored easy..... Deb.

[mishb]

I think there was a post on here years ago, maybe Jack said it, I'm not sure.

It was about when you have Wegener's you will know it when you check the colour of your wee, the colour of your poo, your nasal discharge and any other discharge that may come about.
It par of the course. It made me laugh because, yep, this is what is now the normal.

Sorry love, sister in the middle (like me), you are only normal :tongue1::thumbsup:

[jlove]

Middlesista, I too tend to fret and consider myself hyper-vigilant when it comes to my body. I try to separate the emotional aspect of worrying from the action we must perform constantly as auto-immune patients, which is data collection. As an auto-immune patient, I feel it is especially important to be observant because not all of our symptoms are particularly obvious to the untrained eye. I keep a list of items that concern me in my phone and I go over this note every time I meet with my rheumatologist. I see him once every 3 months so I collect observations on myself in the mean time and I report my findings to him at my appointments. Many of the things I mention, he sees no problem with, but there have been a few times when my observations were very important to my treatment plan. The way I see it, as long as I'm observing myself and meeting with him regularly, I should be able to catch any major problems before they become too great.

This is just the way I view things, and I know it can be different for everyone, but separating the "worry" from observation has been extremely important for me in terms of my mental well-being. Overall, though, I think it's better to be a worrier than someone who is indifferent or passive towards their body so, not only are you not alone in this, but I consider us on the right side of things.

In any case, I hope this is just a case of hyper-vigilance!

[Middlesista]

Jlove-thank you. I think I will start to list my "observations" on a file in my phone. I do tend to send my RA messages via the portal and he does get back to me. Just don't want to have to bug him for little things which are not related to GPA but an since e I am new to all "this" and not sure what is concerning and what is it relates to GPA I f d it helpful to read through posts

[Birdie]

Jlove-thank you. I think I will start to list my "observations" on a file in my phone. I do tend to send my RA messages via the portal and he does get back to me. Just don't want to have to bug him for little things which are not related to GPA but an since e I am new to all "this" and not sure what is concerning and what is it relates to GPA I f d it helpful to read through posts

By the way Sissy, vitamin Klondike is the fret reducing vitamin. Combine it with Wegducation and it's a winwin. To Quote Johnny Five: "Need more input Stephanie!"

[debra]

And get em with nuts, to go with the nut... Yes, Birdie that's for you.... Debra.

[Alysia]

Dear sister, Its more like that in the beginning.. later, you get less stressed from all those manifestations.. maybe you just get used to have weired things here and there.. like, ha, thats wg thing, oh well...
And as long as you get your treatment and calm the wg activity, you can relax more... although can never "sleep" without one ear listenning to the sleepy wg dog...

[Middlesista]

By the way Sissy, vitamin Klondike is the fret reducing vitamin. Combine it with Wegducation and it's a winwin. To Quote Johnny Five: "Need more input Stephanie!"

No klondike for this Middlesista - gotta watch blood sugars due to prednisone. Gotta wait for that "beast' to take a long hike off a short pier and GET OUT OF MY BODY AND EVERYONE ELSES BODY THAT IS DEALING WITH IT ! Then I will have my Klondike Bar.

[Birdie]

No klondike for this Middlesista - gotta watch blood sugars due to prednisone.

If you don't wanna take my choice in vitamin then find one that works for you. Booknut is happy taking vitamin twigs and vitamin nuts. Been smiling like crazy since she started taking them.

[debra]

My sista, stuck in the middle, you need to shout this, daily to the weg dog! He doesn't like this! He thrives, on you're weaknesses. So shout sista, daily..... Birdie, good afternoon! Maybe Booknut is smiling for another reason? Debra.

[Middlesista]

Not weak Deb - doing what I gotta do to try and work toward being healthy and crazy high blood sugars are not a good fit.


Birdie - was reading this book called " The Paleo Approach" and dealing with auto immune problems. Interesting read and very intense. Had seen it mentioned on a post somewhere but I don't think that will be my vitamin either. Will have to work a bit more on this vitamin situation although coming to the forum and checking things out is a good restorative tonic - maybe not in the same league as your Klondike vitamin.... Maybe mocha chip ice cream cone with jimmies when the prednisone is not spoiling those blood sugars until then.....,

[debra]

No, sista, not you, our weaknesses. Didn't mean u! I should have avoided posting today! Please know I wasn't referring to you! I'm going to avoid posting for today, and just read! I messed up pretty bad on another thread... Yikes, mean well but..... Deb.

[Birdie]

Not weak Deb - doing what I gotta do to try and work toward being healthy and crazy high blood sugars are not a good fit.


Birdie - was reading this book called " The Paleo Approach" and dealing with auto immune problems. Interesting read and very intense. Had seen it mentioned on a post somewhere but I don't think that will be my vitamin either. Will have to work a bit more on this vitamin situation although coming to the forum and checking things out is a good restorative tonic - maybe not in the same league as your Klondike vitamin.... Maybe mocha chip ice cream cone with jimmies when the prednisone is not spoiling those blood sugars until then.....,

Weeeeeeel, maybe a good fit for you would be vitamin sherbet, or yougurt (have a hard time calling that a vitamin).

[debra]

Ok, so I lied. Im back, sista, my brother has sarcoids, pretty bad back in 2009. His lungs were packed with granulomas, and his docs, VA, wanted him on high dose pred, ect. We talked about diet, he then went and got Peter Amos? The blood type diet. He started this, lost weight in the process, and reversed everything after denying the pred. The VA doctors, wanted him to speak at some conference and be involved in studies, ect. Incidently, he's 0 positive, so centers around high protein, low carb. So similar to paleo. Interesting stuff.... Good evening, Birdie........ Debra.

[Alysia]

No, sista, not you, our weaknesses. Didn't mean u! I should have avoided posting today! Please know I wasn't referring to you! I'm going to avoid posting for today, and just read! I messed up pretty bad on another thread... Yikes, mean well but..... Deb.

Deb, Middle Sister, you are both so strong. btw, weakness is also fine if one feels ok with it. I know that I am weak. but I accept it.
sister, you have a fighting spirit which is obvious more then ever in this thread. I salute you. if any one can beat wg away, its you.
Deb, I love your posts, no matter what, even if there are typos, or others. we all know that your intentions are pure. you always make me smile here. and I hardly smiled here, if ever, since my sweetie passed.
so I send many hugs to both of you. with prayers and love.

[debra]

Alysia, you're sweet... You make me smile as well..... Everyday.... Me. XoXO XoXO

[Middlesista]

Alysia - can not give in to weakness at this point, having to stay strong to get back to work and get back to being me - or as much of me as possible. My grandchildren mean the world to me and I want to be around to watch them grow up - that is my motivation and the source of what strength I have - although I do have my moments where I just want to pull the covers over my head but then I think of them and battle on

Deb - no worries. I appreciate your friendship , your knowledge sharing and your support.

[debra]

My sista in the middle, I hear ya... Were all here to support each other. This sickness sucks, so... Ay least we have each other... Friendship and support mean a lot... I wish the best for you, sista. I'm sure you'll get it... DDeb. Ignore the double d! Oh boy it never ends.... Men, ignore the double D!!!

[Alysia]

Sister, you have us with you, you have God's hand leading you, and dr. Phil is taking care of all weggies from above. And you have your natural strength which is so obvious in your writing.. sending prayers and love ♡♡♡