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View Full Version : Preds (What is the replacement)



Dumpy
08-03-2011, 12:49 PM
Haven't posted in quiet a while but i try to check in when i can. i got off of the preds last year around this time and off of the immuran shortly after. Did well for awhile then the first of December started with shoulder pain which wasn't to bad then right before Christmas both of my knees started to hurt with alot of soreness. Got a big present for Christmas and had to get back on Preds (60mg) and Immuran (150 mg).
My Doctor started me back off the Preds again the first of June and 3 weeks ago I started with some soreness in my hip which has increased to the point that I almost couldn't walk. Did some blood work Friday and found out that my BFF is back. My Doc has put in a call to the Weg specialist that I went to in 08 to make sure that they both agree because he wants me to get off of the Preds because I have been on them for almost 4 years. What are the options now. This stuff drives you nuts with all of the suprises.:confused1:

Sangye
08-03-2011, 01:04 PM
Dumpy, I'm so sorry to hear this. :sad: Have you ever been on just imuran (no pred)? Maybe that's what they'll do once you get into remission again. I'm happy that your doc contacted your Wegs specialist for his opinion. Hang in there. Hopefully they can get things under control easily and quickly.

Dumpy
08-03-2011, 01:25 PM
Yes for awhile. His plans were to get me completely off of the Preds this time and leave me on the full dose of Immuran. Just never got off of the Preds, I am down to 15mg every other day. What do they use to replace the Preds with?
The Wegs specialist is a she and very good. I'm glad that my Doc made the call to her which lets me know that he has my best interest in mind.

Jack
08-03-2011, 10:42 PM
As far as I'm aware, Pred has no substitute other than steroids in other forms. It would be great if you could get off them because the long term consequences of their side effects are so bad, but if the Wegs can't be controlled without them you don't have an option.

Sangye
08-04-2011, 12:49 AM
If you're only on pred because your adrenals are dependent on it (ie Wegs is controlled 100% by the immunosuppressant), then they can switch you to hydrocortisone. It's closer to the cortisone your body makes.

I don't think that's your situation right now, Dumpy. It sounds like active Wegs which requires both pred and imuran.

elephant
08-04-2011, 09:32 AM
I ditto what Sangye said.

Dumpy
08-04-2011, 11:53 AM
I just hope that Dr. Fessler responds to my Doc before Friday so what ever the changes are they can begin. The joint pain really hasn't been any fun. Sangye I know you are right because the first time it flared there are so many simularities from the first flare and this one but also a lot of difference too. Hopefully all of that makes sense. I'm just glad that all of you guys and gals are here to talk to.

Sangye
08-04-2011, 01:17 PM
I'm so sorry you're in pain. Wegs joint pain is truly awful. :sad:

Jack
08-05-2011, 02:31 AM
For what it is worth, my experience was that Wegs joint pain was there all the time, but gave the impression that if you could just find the right position to lay in it would go away. No such position exists!

Joint pain that goes with Pred (too much or too little in my case) would subside when resting, but then it would be very hard to get moving again.

Sangye
08-05-2011, 02:59 AM
When I had pred-tapering pain it would hit even at rest. It would often affect a number of joints at once or rapidly move around, as if someone were firing at me. It felt more like flu pain to me.

Dumpy
08-05-2011, 11:26 AM
Yea the first flare i had it started in my left shoulder then went to both knees along with the shoulder and I was like you Jack i could stand on my head sometimes and could not get comfortable enough to get any sleep and it didn't get any better until I got back on the 60mg of Preds. This time has been a little different that it started in my right hip then included my right knee. I could sometimes get into 1 position and sleep for maybe 2 hours are so. I went to an Orthopedic Doc and he put me on a Medrol Pack which has given me some relief until they decide how they will handle my BFF this time. I know what you mean Sangye by someone firing at you because as soon as you adapt to 1 joint pain another one hits you from the other side but mine has never felt like the flue.

Sangye
08-05-2011, 12:04 PM
The Wegs pain didn't feel at all like the flu. The pred-tapering pain did. Wegs pain is horrible.

Dumpy
08-05-2011, 12:27 PM
I pushed alot of my Wegs pain in a dark corner because I was taking Oxycodone for my sinus pain and came really close to getting hooked on it and that for me was really scary but yes the Wegs pain was really NOT GOOD. The Oxy I got away from and am thankful.

Sangye
08-06-2011, 01:30 AM
Good for you, Dumpy. Oxycodone is famously addictive. It's hard to believe they can keep it on the market.

Dumpy
08-12-2011, 11:14 AM
Went back to my Doc today and the Weg Specialist in Birmingham has not returned his call as of yet. He is going to call her back Mon. if she hasn't call by then. He tells me that the Wegs is smoldering right now. My blood test came back a little high and my Doc wants to put me on RTX. Hopefully this will work and put my BFF in remision. I have read up on the RTX and it is really kind of scary what the possible side effects are but I also know the side affects of the Wegs. I'm sure there is plenty of good advise out there so please let me hear about it. Just a little unsure right now.

Sangye
08-12-2011, 12:21 PM
Don't worry, Dumpy. Rtx is well-tolerated by most people. Hardly anyone has any side effects from it.

Dumpy
08-13-2011, 11:53 PM
Went to have a MRI on my right hip yesterday to try and find out what is causing the pain in my hip. I forgot that i had a pacemaker and can't have one so now it will be Monday before they can to the CT scan. I realy believe that the joint pain is from the Wegs. It sure feels like the last joint pains that I had on the last flare. I was down to 15mg of preds ever other day when all of this hit and ny doc put the decrease on hold. I started taking 5mg on the alternating day to see if it would help the pain and it has made a good bit of difference. I'm hoping I'm not doing wrong but I had to get some relief while everyone is waiting to talk are on test results.

Sangye
08-14-2011, 11:58 AM
Dumpy, an MRI is no big deal but a CT is a ton of radiation. Unless your doctors have very good reason for doing one, it's best to avoid it.

Dumpy
08-14-2011, 12:40 PM
Sangye I'm not, sure my Doc that I use for the Wegs seems to think that the hip pain is not caused by the Wegs and he has sent me to the Orthopedic Doc. They did a bone density scan and my reg Wegs Doc says there is a touch of Ostopenia. I'm lost when it comes to some of this. I agree about the CT scan and the radiation. What are the alternative ways to be able to look at my hip. Once again I really think that it is the Wegs that has caused the pain in my hip but probably a dozen times in 2 to 3 weeks my hip has popped and that is what scares me that it could be a problem with the hip. I also have had some pain in my knee and my shoulder all on the right side.

Sangye
08-14-2011, 12:49 PM
Since you've been on pred, there is a chance that the hip bone has lost its circulation (aka avascular necrosis). It doesn't happen very often, but it's not rare, either. We thought I had it in both hips a couple years ago, as I had classic symptoms. But MRIs over 6 months showed nothing abnormal and it resolved in about a year.

The fact that you're having popping could be a lot of things-- Wegs inflammation of the joint, a simple misalignment of the socket, arthritis, etc...

An MRI is the best diagnostic test to check for all of the above and other conditions, but a CT is the next best thing. It's probably a good idea to get it done.

elephant
08-14-2011, 12:50 PM
I Thinks its the Wegs causing the hip pain, but also it could be being on long term prednisone. I too had Hip pain and it went away.

Dumpy
08-14-2011, 01:06 PM
I have been on the Preds for a little over 4 years now mostly from 60 to 40mg for a lot of that time. I was off of them for about 2 months when I was in remission but that was all. When the Wegs flared it attacked my shoulder joints first and was a managable pain and then it attacked both of my knees and almost had me to where I couldn't walk then I went back on 60mg in Dec. last year. When I increased the Preds by taking the 5mg on my off days it started to help the pain that very same day.

Dumpy
08-14-2011, 01:23 PM
Thanks for the advise Sangye. I was uncertain about having the CT (because of the radiation) but I knew that I probably didn't have another option but if this proves to be the Preds work I will know the next time.

Dumpy
08-22-2011, 12:02 PM
I went and had my CT scan and then met with my Orthopedic Doc. He started with I have good and bad news. Well the good news was that it wasn't anything wrong with my hip joint and the bad news was that it was my Wegs that was causing the pain (are the getting off of the Preds). Along with my 15mg every other day I started taking 5mg on my off days and it really helped with the pain. The Orthopedic Doc told me to continue with the dose until I get to see my Pulmonologist. I just hope he has talked to my Wegs Specialist by then and they can decide which way we are going to go with the meds.

Sangye
08-23-2011, 02:11 AM
Well it's hard to know which is the good news and which is the bad, isn't it? Dang it, Dumpy I'm so sorry. I hope they've caught this flare quickly enough that you won't have to do high dose pred or the harsher drugs. :sad:

Dumpy
08-23-2011, 11:16 AM
Yea if I had my rathers I would rather not do the high doses of Preds. I spoke with my Doc today and the Wegs Specialist still has not called him back. I don't know what the problem is. He told me that if she hasn't called by the time of my next visit that he will talk to me about the RTX. That is what Dr Fessler had suggested when I saw her 2 years ago.

Dumpy
10-29-2011, 02:35 PM
Went today for my first Rituxan infusion and so far so good with no reactions to the Rituxan. I will be having the 4 infusions and hope and pray that my BFF will go into remission. I'll keep and touch as I progress with the treatment. Maybe at the end of this I can get completely off of the Preds.:drool:

Sangye
10-30-2011, 01:58 PM
I'm glad the rtx went well. :smile1: