Wish i felt better

[keegan55]

I don't know how I am doing anymore. I still have small amount of blood from nose. The ENT has no idea why. He tells me he knows what GPA looks like. I still have the left node in lung which has gotten smaller but not gone. I am so tired all the time and legs are just so achy this week.The Drs think you are on meds so you are ok. I disagree I feel yucky. This disease is so hard to deal with and diagnose. It is a very rotten stupid disease .

[drz]

Bleeding from nose, especially during nasal rinses, can be one of the residual effects of Weg damage even when the labs and other indicators suggest you are basically in drug induced remission. This was a hard concept for me to get my head around too but what they mean I think is the Wegs is mostly under control so you don't need any different or additional treatment. If things are NOT getting worse, then you must be getting better. Most of us probably have some residual effects from damage caused by the Wegs. And these symptoms can wax and wane for various reasons. Infections, illness, and stress tend to cause them to worsen. Lots of nasal rinsing and keeping adequate humidity can help reduce nasal bleeding.

The lucky ones who seem to recover 100% from their Weg symptoms aren't as likely to feel the need to use this forum as the rest of us. Fatigue and mild pain are also very common residual effects from Weg damage, especially if kidneys, lungs, and sinuses were also affected. Most people get substantial improvement from treatment for Wegs but that does not mean a 100% recovery to a state of health pre-Wegs and the recovery period can take several months or longer.

How long since your diagnosis and start of treatment? How long since your doctors said you were in remission? Some of our meds we need to take can also cause aches and pains and fatigue and other symptoms too.

[cjhnsn29]

Keegan, it is a diease that is totally not fun. There are days I am feeling ok, Then there's nights I can't sleep, once in a while you feel ok but not up to par. Once you get on the right doses of meds for WG it's not as bad. I have better days then when I first started out. What really stinks is that I get this under control somewhat and I just had emergency surgery on another body part. Just keep POSSITVE it's hard, but really what choice we have.....

[mrtmeo]

Hi Keegan,
If you are in remission and waiting to heal from the damage, fatigue and weakness can last a long time.
Otherwise, it is the disease or the damage done from the treatments and the body needs time to heal.
Prednisone causes more damage than the other drugs and leaves us feeling too exhausted to do anything.

It takes our adrenals time to come back online after lowering or discontinuing prednisone.
Have you had a 25 hydroxy D test done to see if your D levels are within the optimum range of 60-80 ng/mL?

[keegan55]

I dont think I am in remission yet I cannot take pred due to diabetes so just on MTX. Also dealing with psorasis and arthritis associated with that. The Drs. don't really explain the disease well at all. I thought once on meds I would feel good again but that is mot happening. The worse part is family not getting it at all. I have been on meds for 6 months was hoping to come off of them. But ...again not happening. I guess I just get the whole thing

[mrtmeo]

I dont think I am in remission yet I cannot take pred due to diabetes so just on MTX. Also dealing with psorasis and arthritis associated with that. The Drs. don't really explain the disease well at all. I thought once on meds I would feel good again but that is mot happening. The worse part is family not getting it at all. I have been on meds for 6 months was hoping to come off of them. But ...again not happening. I guess I just get the whole thing

Have u had rituximab?
That is used for RA if that is the arthritis you have.
I have several friends that got their vitamin D levels up and their psoriasis went away.
If their D levels get low, it comes back.

[keegan55]

I have psoriatic arthritis and have been on Enbrel, humira ,remicade and again on enbrel on the last drug got the GPA the MTX can help both conditions. I was doing the light box but I dont want to go to dr office 3x a week too many germs. I did not realize the residual effect of this disease. The biopsy report was interesting they said something about enbrel could have a part in in the developement of GPA. they also think it is so unusual to have 2 autoimmune diseases. I guess I ned to find more reading on GPA I really thought once it was under tresyment i would be great

[NikkiNicole]

I wish I felt better too. I did for awhile, ... I wish I did again.

[vdub]

Don't give up... It took me 4 years to start feeling better and even now I have a bad day or 2 every couple of weeks. If you look at my sig line I have both GPA and pa, too. Of the two, I think the pa is the worst, but its really difficult to tell the pain from one disease to the other.

I'm surprised you can't take pred. If drz doesn't see this thread, then pm him. I think he takes pred and is diabetic.

One of the pain pills that really helped me is gabapendin. I take 100mg of gaba 3xday and 2 50mg tramadol 3xday. If I have a bad day I'll swap the tramadol for hydrocodone.

[keegan55]

When I take pred sugar hits 300 plus .I am also very overweight long years of pred for the arthritis I save the pred for thd shots to the joints...did u take enbrel?

[Jaha]

I'm sorry that you are going thru a bad time right now. Are you seeing a rheumy or specialist for you AI's? There are a lot of people who have more than one AI. It becomes really complicated with multi illnesses and the different treatments for them can really make you feel worse. I would really question no preds and also using MTX with the other ones you mentioned. I am still not in remission after trying MTX, Imuran, CTX, Cellcept, and four rounds of RTX. I am however showing progress with my labs and shrinking some of the nodules in my lungs. I feel crappy most days, but when feel some energy I go and pay for it later. Best wishes to you for getting the proper care and tx's for your AI's. it will get better, remember baby steps!

[Miranda]

It sounds like you need to find a doctor who is very familiar with WG. To be honest you may never feel good ever again. We all have good days and bad days. Good days are of course better than the bad, but just because its a good day doesn't mean you feel better. I cannot even remember the last time I felt normal. I would do anything to feel that way again. Also, we look fine on the outside so no one understands. Thats why this place is awesome. People get us here. Its the disease and the effects of all the medicines too. Sometimes the effects of medicine seem to be worse than the disease. Just remember without treatment though the alternative is much worse than what we feel right now. It could be fatal. Stay positive and keep your mind off it as much as you can. If you are into praying Pray. IF you are not, all of us here who do will do that for you. Keep your head up!

[Jayne 14]

I get sick of people saying " u look so well " when I feel so bloody xxxxxxx ****
This place truly helps in every way
Let us help u through you tough times
Big hugs xx


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[drz]

Don't give up... It took me 4 years to start feeling better and even now I have a bad day or 2 every couple of weeks. If you look at my sig line I have both GPA and pa, too. Of the two, I think the pa is the worst, but its really difficult to tell the pain from one disease to the other.

I'm surprised you can't take pred. If drz doesn't see this thread, then pm him. I think he takes pred and is diabetic.



I still take 5 mg pred and will indefinitely. The pred raised havoc with my blood glucose levels and i had to triple my insulin to get it back down even at lower doses. At the high dosages I ranged from 400 to 40 most days. Now I can get my A1C under 8 again and do OK most days. Diabetes takes a lot more time and effort to manage than Wegs and pred really increases the problems but I think i need it to mange the Wegs too.

[vdub]

...did u take enbrel?
I never have done Enbrel. I would certainly ask about it if the mtx wasn't working so well. I'm on 20mg mtx 1xwk and 5mg pred 1xday. I don't Invision ever being off either pred or mtx.


" u look so well " when I feel so bloody xxxxxxx ****
Isn't that the truth? I think we all hear something similar way to often.

The other thing that annoys me a great deal is having people who don't even have the bloody disease telling me how I feel or giving me their opinion on how it should be treated. I have a relative who insists on pushing her opinion on me and she doesn't have the disease or any medical qualification of any kind. All she does is read the internet and thinks she is then qualified to offer an opinion. It would be less annoying if she at least had wegs.

[renidrag]

Phil Mickelson looks well too. Now if he would do some Public Service Announcements regarding Vasculitis awareness such as PA instead of making money for big drug companies I might cheer him on again. Maybe we could E-mail him with our concerns. Wanted to write this for a long time.
Dale

[vdub]

I would tend to agree with you, Dale. I can't say if enbrel is any better than anything else because I have no personal experience with it. But I can say that mtx is pretty effective and very cheap.