Off Prednisole for 3 weeks and had to go back on it!!! How did you find going off it?

[Carol]

After being so well and always going forward with my health the specialist said go off 2.5 mg Prednisolone. Well gradually I got aches and pains in various spots of my body and tiredness. Felt like a clock winding down. I decided i would put up with a few more weeks until I was able to see him again. BUT then the pins and needles started in one arm so I put myself onto 10mgs for a start. It was scarey as when I first got sick one hand went numb within about 20 mins and that's when they rushed me into start chemo. I didn't want to go down that track again. I knew the last 2.5 would be hard to go off and was prepared to put up with all the aches. It's winter here in Australia, I wonder if I'd be better trying to go off Pred when the weather is warm and balmy in summer. I'm still on Imuran and Bactrim. Can you tell me about your going off Pred, what happened. regards Carol in Australia

[pberggren1]

I'm sorry to hear that you had to go back on Pred and ctx. Everyone is different when it comes to tapering but one should always take it slow.

[Sangye]

Carol, read this thread I started. You'll see exactly what happened to you and how to fix it.
http://www.wegeners-granulomatosis.com/forum/general-wg-chat/864-lessons-learned.html

[Carol]

Hi Sangye, thanks for your reply. I couldn't find that heading on your blog but then I'm quite computer illiterate. Could you perhaps copy it onto this site then others as well as me can read the info about getting off Pred. Carol

[Jack]

Carol, just click on the words "Lessons Learned" in Sangye's post above and it will take you to the Thread with all the Pred tapering info.

[elephant]

Carol do you have sinus involvement?

[Carol]

Hi elephant, yes I had terrible sinuses to begin with, bleeding, caking, build up in the back of my throat etc BUT they are so good now except for a little bleeding.In fact they are the best they have been for years and years. I can't believe that the ENT specialist had me booked for another clean up - surely he must have reasied that it was more than just bad sinuses. How do they get to be specialists - surely he could have said I think there's something more going on here. Carol

[elephant]

Glad your sinuses are much better. I am in remission, but still have a little stuffiness and blow my nose everyday. I do get a little blood but not much. I know it is frustrating to increase the prednisone again, and again but you will get there.

[pberggren1]

I'm so glad to hear that your sinuses are doing better Carol. You only had the sinus surgery done once right? Is that the procedure where they go directly into your maxillaries called the Caldwell Luke Procedure? When you had it done were you already diagnosed with Wegs? I have had bad luck with ENTs up until now I have seen 8 so far and the eighth one is awesome, far above the rest. His website is: www.drmiaent.com (http://www.drmiaent.com)

[zylodey]

Thanks for the ENT information. I was diagnosed with WG about a year ago and the ENT specialist saw me for about 3 minutes in the hospital and said I needed to use saline and confimed I had WG and I have never seen or had a follow up appointment with him. I have the saddle nose deformity and am having trouble finding a surgeon in sask who will do the rhinoplasty. My specialists say I can't have it for another year, but they were at least trying to get me on a waiting list. I have a lot of crusting - no bleeding, so I will see if I can get my doc to recommend me to this ENT. I too am from Swift.

[JanW]

Wow...is Swift Current a big town? I'd never heard of it and now we have two members from there!

I have the saddle nose as well zylodey. You really need to see someone who has done many of these before you have them do the surgery to fix it. It's not as simply as a rhinoplasty for someone who doesn't have WG.

[pberggren1]

Jan, I am just as surprised as you are. The population of Swift Current is around 16,000 I think. Not very big. And the whole province of Saskatchewan is around 1 million. The area of Saskatchewan is slightly smaller than Texas.

[Doug]

There is a pattern of arrogance and indifference amoung ENT doctors I find discouraging.

For a long time, I just thought it coincidence that, of six different ENT doctors I'd seen over the years, five were classic know-it-alls who either did little to help me or made things worse, and only one met my needs- barely.

I am very anti-ENT doctor at this point, and probably read something like you report, zylodey, and turn it into a rant when, if I were thoughtful and fair about it, I'd conclude you, many of the others on the forum, and I just happened to winnow out all the @$$^)#!% in the profession when it came time for our need.

Virtually all of the ones I saw claimed to see dozens of WG patients all the time, but I saw no sensitivity to my specific needs, for example, the need to include consultations with my weggie specialists in their plan for my treatment! I ended up deaf in my right ear. Maybe I was beyond the help of an ENT doctor and any God known or presumed known to humanity, but I've had far worse things than an ear infection that turned out much happier, thanks to the treatment and guidance of real doctors (oops! ~ change "real doctors" to "doctors).

Somebody, before I rant any more, please say something positive about your ENT doctor experiences! Please!

[Sangye]

ROTFL-- My Wegs ENT at JHU is not like that at all! Very kind, understanding, takes lots of time with me.

[Doug]

Thanks, Sangye. That makes one ENT doctor in hundreds of thousands we can rely on for competent weggie-centered care if we happen to live in the Baltimore area, plus 1/2 doctor in the Denver area. That brings the total worthwhile ENT doctors up to, erm, 1-1/2! Things are looking more positive by the second!

[pberggren1]

Hey!!!! What about my new ENT?

[elephant]

I am calling my WG specialist today and asking her if she can consult with a ENT who has experience with WG patients. I am tired of having sinus problems.....infections/inflammation, I need this to be addressed. I feel tired and my eye lids are swollen and when I rinse my nose some blood comes out.

[Jack]

elephant - are you sure your Wegs is under control? I had terrible nose and sinus problems when I had active disease, but very little since diagnosis and treatment other than the odd infection. Even these went away once I started to take Bactrim daily.

[Doug]

Oh, yeah! I forgot Phil found a good ENT doctor. That brings the total to 2.5:hundreds of thousands. If we keep it up, we might even be able to express that as a percentage!

[Jack]

Well, I've had one that very nearly killed me, one who did not listen and was an arrogant b...... and another that seemed to know what he was talking about. However, I never put his services to the test because he thought that the risk v. benefit balance of a proposed operation was not in my favour.

Add it to the stats Doug. ;)

[Doug]

I'd say the numbers are essentially the same 2.5:hundreds of thousands!

I note that since most have presented themselves as God's Representatives on Earth, if not JC Himself, my expectations of them may, just may be too high.

[pberggren1]

Now Doug! They are just humans like you and I.

Jack, I noticed that when I started taking the Bactrim again at 2 tabs twice a day back on July 13 that my sinuses and nose problems greatly improved.

[elephant]

I am wondering the same thing Jack. Mabey I just need to be on Bactrim daily and forget the cellcept??

[Jack]

I take Bactrim (Co-Trimoxazole) in addition to Cellcept (Myfortic). Plus Pred and a load of other stuff of course.

[elephant]

Jack do you take bactrim daily?

[pberggren1]

What's the load of other stuff, Jack?

[Jack]

Yes, every day - have done for many years, but I take a break from it when I need to switch antibiotic for any reason. Currently I am taking Amoxicillin for a couple of weeks due to a possible lung infection.

[elephant]

Do you take one DS bactrim daily or two?

[Jack]

What's the load of other stuff, Jack?
Tramadol
Prednisolone
Co-Trimoxazole
Atenolol
Calcium + Vit D
Lansoprazole
Loperamide
Symbicort Inhaler
Tiotopium Inhaler
Ferrous Sulphate
Warfarin
Myfortic

[pberggren1]

That looks like a good mix to me Jack!

[elephant]

I'm taking just about the same mix with some other drugs. I'm suprised I am not yellow yet!

[DEE]

I'm taking just about the same mix with some other drugs. I'm suprised I am not yellow yet!

me to !! i say i will either rattle or glow soon DEEx

[brocky99]

Me too they have just took ferrous sulphate off me which is 3 tabs less a day but they now give me iron thru the dialysis machine, I dont know why but u can taste it and it tastes disgusting. Just been to dialysis and they had to stop after an hour because the vein blew so they stopped it. My arm is now throbbing 6 times they had to needle because of the bruising and swelling and now I will have another bruise to add to it and my arm is really swollen. Just waiting for them to phone with blood results because if they r bad I have to go back in the morning.
Not looking forward to that not sure where they are going to go tomorrow not much space left.

[Jack]

Sorry to hear you are having problems. I hope they soon get it sorted and you can settle to some sort of acceptable routine.
Speak to them about the iron, there may be an alternative such as reverting back to oral.

[DEE]

oh brocky so sorry you have had a bad day hopefully tomorrow will be better , id lend you one of mine but in the same boat nurses run the opposite way when they see me coming i just wont part with anything thinking of you hope all goes ok take care DEEx

[elephant]

Brocky sorry about your sore arms. Take care of yourself and rest well tonight.

[Sangye]

Brocky, hang in there. I'm sorry to hear you're going through so much pain and trouble with your veins.

[drz]

Oh, yeah! I forgot Phil found a good ENT doctor. That brings the total to 2.5:hundreds of thousands. If we keep it up, we might even be able to express that as a percentage!

I saw two good ones at U of M Medical Center that seemed knowledgeable about WG and how it affected hearing and my throat. I also saw a couple of others at local clinics before my diagnosis who didn't have a clue what my symptoms meant so i guess that is a wash, right?