Apparently I'm flaring...

[marylz]

I guess I know less than I thought about Wegs...I thought I couldn't get worse in order to get better once you were in treatment, but, silly me, I didn't put 2 and 2 together and realize there was something wrong.

For the past 6-8 weeks or so I have been having a lot of trouble breathing (so much that I was out of breath simply walking from room to room.) I have also been really achy (mostly in the mornings) and exhausted all day in general. I see most of my doctors once a month at this stage-kidney,lung,rheumy family doc,etc --as well as get at least once per month blood and urine tests. I am also on once per month CTX infusions (4 so far.) When I told them about the breathing, they listened to my lungs and said they sounded clear and the other complaints they said were to be expected until I was in remission. My blood work and creatine #'s were looking good so the docs felt justified in reducing my pred by 10 mg per month.

About 4 weeks ago, I saw the pulmonary doc (well, his partner, anyway) at my husband's insistence, and he said my lungs sounded clear, ordered a chest ct and x-rays and said to come and see regular doctor (who I've only seen once) in 2 weeks at my regularly scheduled appt and to call if my breathing got any worse.

Skip to today, when I saw "the big gun" pulmonary doc that I saw originally in the hospital.(She will only see patients every 3 to 4 months in a clinic with the other "big gun" docs, but she knows my other docs and consults with them about me regularly.) She said she thinks that I'm having a flare due to my pred being reduced too quickly or else the CTX isn't working well enough and maybe we need to switch the heavy-hitting drugs. I have been being reduced on the pred by 10 mg per month. When I left the hospital I was on 40 and as of last week I was reduced to 10mg. She called my rhuemy and neurologist and they agreed to have me up the pred to 40mg again and to monitor how I feel and let them know.

I hate having to go up on the pred again as I have gained 30 lbs since diagnosis and being on the pred, but I hate feeling so icky too and not being able to breathe. I guess I just assumed that if I follow directions and be a "good girl" and take all the drugs I would get better...sigh...

I know I shouldn't complain. A lot of you have things much worse and for much longer than I have. I am truly happy that at least I'm not back in the hospital and that the doctors have a plan of action for me. I am just sick of being sick as I"m sure all of you feel that way too.

I just wanted to give you all an update. I keep up with the forum but haven't been posting cause I feel I didn't have anything to add but please know that you all give me so much hope and are so kind and are so supportive. Thanks for being here for me and each other!

Mary

[Pete]

Hang in there, Mary!! Hope the pred makes you feel better soon. Also, what dosage of ctx are you on? When I was sick at disease onset, I was taking 150 mg/day orally. I got reduced to 100 mg/day into remission before switching to mtx.

Better health soon!!

[drz]

Getting sick and tired of being sick and tired is a pretty common complaints many of us share since few of us on this forum recovered 100%.

Pred is a horrible drug with bad side effects, but it is also a miracle drug that is life saving. Hopefully they can figure out what you need to get back on track to getting better. We understand your feelings of frustration as many of us have often been there. Treatment reduces the severity of flares and makes it easier to get things back under control but it does not ever guarantee you won't have a flare. Most likely though you will get the necessary treatment and get back to feeling better more quickly with the Wegs sort of under control. Till then hang tough and post away. Supportive understanding is what we can offer you.

[annekat]

Thanks for the update, Mary... I know I've had the feeling of difficult breathing at times during my Wegs, sometimes to an alarming and very uncomfortable extent, but my pulmy, who is my WG treating doc, always thinks my lungs sound clear. So it turns out to be stuff dripping from my sinuses and collecting in my bronchial tubes, causing difficult breathing and feeling very much like asthma until something is coughed up. The good news is that after months and months of this, it is improving now, and I get a lot less of that panicky, can't breathe feeling. As for drugs, I was on oral CTX for about a year, which helped me a lot... I'm curious how different it would have been getting it in infusions. Then I was switched to MTX and things were OK until I flared and it turned out I needed to be on a higher dose. The pred was in there, too, of course, and was increased for a bit along with the MTX after the flare. This was successful and now I'm down to 10mg. pred again and am doing a lot less coughing than ever before, to the point where people are noticing it. So anyway, yeah, they could change your "big gun" or they could try giving it to you orally, adjusting the dose, whatever.... and FWIW, if you only started treatment in January of this year, it does seem like you were brought down to 10mg. pred a lot faster than I was, so maybe that could be it, too! Wegs can be so darn complicated and unpredictable. Complaining on here is perfectly OK. It is interesting seeing the variations in everyone's Wegs experience no matter what stage or severity they are going through. I hope it all gets figured out and you feel better in time to enjoy the summer!

[Alysia]

Dear Mary,
In the beginning, which is where you are, it takes time (months, sometimes years) to find the specific "formula" of treatment for each one.
It is good that you have all your docs. it seems that you are in good hands.
maybe you should change to RTX ?
BTW I think RTX alone is not enough (in my case it is + MTX + pred).
I hope you will soon feel better.
sending you big hug :hug2:

[marylz]

Pete, I am on iv CTX once per month. The first dose I think was 1.5(?) and took all my white blood cells so subsequently it has been 1.2(?) not sure of how they dose the iv stuff. Thanks, I am feeling more energetic today, but the breathing is still difficult upon exertion. I am hoping it will get better soon. The docs seem tothink the pred should do it!
Mary

[marylz]

Thanks for the support drz, anne and alysia. I realize that I am only beginning with my journey and it is nice to know you all are here to give encouragement and ideas.
Mary

[Mikek]

Remember that in addition to those who post their thoughts and wishes, their are many more thinking of you and wishing you well.

[marylz]

Thanks Milek. I do know that as I am one of those as well. :smile:

[mishb]

I hope things are now on the improve Mary.

Don't think that you are not as bad as others are - you certainly got dealt a handful, with lungs, kidneys and sinus involvement, therefore, of course you can complain.........and we are here for you. It will get better.