Is anyone just on prednisone?

[carriej22]

Hi Folks,

It seems as though a lot of you are on quite the drug cocktail. Initially, I received 4 RTX infusions when I was what I would like to call on death row. I do not believe I would be here without these infusions. If they had of tried something else, I would have been gone. I am thankful for that even though RTX was scary to me.

I was then put on prednisone and MTX, however I was taken off the MTX in August due to a lung issue. I have been on just prednisone and septra ever since - I also take some vitamins.

I mean, I guess I should be happy.. And I am - I'm feeling much better but it seems as though some of you who have had it longer even are on quite a bit of medication.

Does the RTX prevent me from needing all these other drugs? I don't want anymore drugs.. This is the best I've felt since I was diagnosed. My pred wean also seems fast.. I am dropping half a pill a week until I get to 5mg I think. I have only been on pred since June, but it's destroying my body... I'm not even kidding. I haven't gained a TON of weight but you should see the "striae"... It's bad. I might post pictures someday if someone wants to see them (but I dont know why they would). My clothes all still fit, but my skin just went super thin and well - it's not pretty. They hurt too. Anyone else have severe abdominal striae from pred and do they fade? I've got them in weird places (shoulderblades, etc) but they are worst on my sides. I don't have that many on my stomach, just a lot of small horizontal ones (weird), but the ones on my side are bad bad bad. I'm a little nervous to what they're going to do when the weight comes off.

I kind of got sidetracked from the original idea.. but it is what it is lol

[annekat]

I'm pretty sure there are people on just pred and maybe Bactrim/Septra. I'm sorry to hear about all the stretchmarks..... I don't think everyone gets those, I haven't..... but I'm glad to hear that you are feeling so much better. Others can address the RTX questions. I'm on MTX and it is OK but makes me fatigued.

[gunnyl]

Carriej22,

I have been on MTX for 6 Months and Prednisone off and on to go with it. My Dr's are more worried about the Prednisone than anything. My Dr. deemed me Prednisone dependent as I tend to get disease activity every time she takes me down or off of it. I am being tested to go on Imuran instead of the MTX. She has a goal of getting the Imuran to eliminate my need for the Prednisone. My Ophthalmologist hates to long term Pred and so far my other doctors concur. Long term Pred causes Glaucoma, Cataracts, Osteoporosis and the list goes on. I am taking Plaquenil now to help with the joint pain but at lower Pred doses I start getting purpura patches all over my legs and other symptoms. I guess that's a really long way of saying that the Prednisone although our friend in the beginning can become our enemy after a couple of years. So the goal should not be to stay on Pred but to get on something else that will control the disease without Pred! GL

[mishb]

Carriej22,

I have been on MTX for 6 Months and Prednisone off and on to go with it. My Dr's are more worried about the Prednisone than anything. My Dr. deemed me Prednisone dependent as I tend to get disease activity every time she takes me down or off of it. I am being tested to go on Imuran instead of the MTX. She has a goal of getting the Imuran to eliminate my need for the Prednisone. My Ophthalmologist hates to long term Pred and so far my other doctors concur. Long term Pred causes Glaucoma, Cataracts, Osteoporosis and the list goes on. I am taking Plaquenil now to help with the joint pain but at lower Pred doses I start getting purpura patches all over my legs and other symptoms. I guess that's a really long way of saying that the Prednisone although our friend in the beginning can become our enemy after a couple of years. So the goal should not be to stay on Pred but to get on something else that will control the disease without Pred! GL

How are you coping on the Plaquenil, Gunny.

I have found it to be terrific especially in reducing the joint pain and I have not had any trouble with it ...........don't know why they didn't use it straight away all those years ago

I am still on 5mg pred and also 20mg MTX plus down to 100mg Plaquenil, but hopefully we will try to start reducing the pred in December, once I get back from overseas.....even though my Rheumy doesn't think I will ever be able to get off it

Carrie, I think there are quite a few people just on pred alone, or as Anne says, pred and bactrim etc........it is possible...... but I surely would like to see the back of the weight gain, and yes, the stretch marks and all the other things associated with pred use.

[gunnyl]

Michelle,

Plaquenil is mitigating the joint pain and I don't have any side effects that I'm aware of. MTX isn't working though and I had to come back up on Pred. Took my TMPT test yesterday, waiting for results to see if I can move to Imuran. My wife's Uncle has Behcets and has been on Pred for 9 years. My Dr's would have a Heart Attack hearing that. I know everything we take has side effects, although I can say that I never gained any weight from the Pred and that baffles my Dr's too. But the long term problems from Pred really scare me to be honest with you. My Ophthalmologist especially dislikes the Pred. I have to see her every 2 months to get my pressure checked and now that I started the Plaquenil I have to get a Regular Field Vision tests on top of that. Every day I realize just how much having this disease sucks :-) And there is no "Wonder Drug" as we all react to the different drugs in a different way. Unfortunately you can count the drugs they have to treat us on one hand!
That's why I love this Forum and all of my fellow Weggies on here! We all share the knowledge we obtain with each other and support each other. I was telling my wife the other day that all of our Dr's probably have one to three Wegeners patients each but on this site we have a large grouping of us so we have to take the advantage of each others knowledge and experiences.

Gunny

[Pete]

I've shared some of the things I've learned on this site with my docs. Didn't get an immediate response from any of them, but I think it's food for their thoughts.

[drz]

I am on 5 mg pred and 175 of azathioprine and my treating doctor thinks it might be best to keep me on this maintenance dosage until the studies underway about tapering and maintenance drugs show some indication about who can be or should tried to taper off and what type of maintenance schedule is safest to avoid a big flare. I will consult with my weg expert next week at Mayo in Rochester on 24th. Anyone else planning on being there that day or day before?

[pberggren1]

I share many things on here and from the facebook groups with my doc. Many ask me to consult with my doc and act as a liaison for them. My doc does not mind at all.

[malin]

I'm on just pred and bactrim + lanzoprazole at the moment and am tapering the pred by 10 mg a month. I am at 30mg now.
I had my RTX infusions in August and will have another round in February I think. The Wegs specialist at Addenbrookes wants me to be on just RTX and bactrim, without any pred at all, by the end of the year if possible. He said studies show that RTX works just as well to keep you in remission wether you take another immunosuppressant drug or not, so might as well not take anything else as it would just add more toxcins and side effects.

[HopeinTN]

I'm betting the marks will go away. If they don't, think of it as a way to show how tough you are by earning your stripes.

[Lightwarrior]

I'm on just pred and bactrim + lanzoprazole at the moment and am tapering the pred by 10 mg a month. I am at 30mg now.
I had my RTX infusions in August and will have another round in February I think. The Wegs specialist at Addenbrookes wants me to be on just RTX and bactrim, without any pred at all, by the end of the year if possible. He said studies show that RTX works just as well to keep you in remission wether you take another immunosuppressant drug or not, so might as well not take anything else as it would just add more toxcins and side effects.

The literature says that RTX created a drug free remission in 63 or 69 out of 99 patients in their study. Since I have NEVER had a drug free remission this would be amazing. I get my 3rd infusion day after tomorrow. The second wiped me out. I am back at work so we'll see how the third one does. YEAH!!! third time is supposed to be the charm right??

[KathyB]

I'm just on prednisone -- 5 mg/day where I've been since March. I've had Rtx infusions, too, with the last one administered in April. I've mentioned before that for now I'm not getting another infusion because of my low IG rates. I thought I would be off prednisone by now, but no luck! I didn't have any weight gain with prednisone either, until the last few months when I gained about 10 lbs. But I'll take all the blame (lack of exercise and slack eating habits!). My next scheduled appointment with my rheumy isn't until late November, so everything is status quo.

KB