Prednisone

[amy.r.kahl]

Hello fellow WG patients
I was wondering how you all cope with prednisone?? I was initially put on 80mg and it caused me to have serve symptoms such as personality changes and caused me to be manic as well as weight gain, moon face, and feeling like in a fog, and rood rage. I'm no longer on it but now that I'm having a flare up the new specialist I am seeing who is recommended on the vasculitis foundation Dr Springer is wanting to put me on it again. I'm very scared to take this mediation again. I'm wondering if anyone takes something that works like prednisone but doesn't have all those side effects and if not how do you cope with the side effects and has anyone else experienced these side effects?! Thanks any input is appreciated [emoji3] and best wishes


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[cjhnsn29]

Amy.r...I have been on Prednisone for a long time and started out on 80 also. I had the same problem with weight gain and the moon face. I was lowered down to 5 mg now because they put me on methrotrextate. It is suppose to take the place of the Prednisone. They raised me up and down depending on the blood work. The methrotrextate allowed me to tamper my others done. Unfortunately that is the side effects and my Dr said there is nothing you can do about it....

[Pete]

Hi Amy,

Prednisone is the drug we all love to hate. It does make us feel better and allows us to attempt "normal life". At higher doses (generally anything over 10 mg/day), the side effects are more pronounced.

My highest dose has been 60 mg/day. Over the past 18 months, I had tapered down to 2 mg/day, but a few disease symptoms came back. So, I'm back to 5 mg/day while I get all the ducks in a row for another round of rituximab.

Some things that have helped me to cope with pred's side effects:
1. Eating healthier. I eat almost no processed food. I generally avoid sweets. I drink more water. I eat more fresh fruits and vegetables. I generally eat gluten free bread. I substitute sweet potatoes for white potatoes. I don't eat cured meats (ham and bacon). I eat more oily fish (tuna and salmon at least once a week).
2. I exercise regularly. Most weeks, I walk 2-3 miles 4-5 times a week. In winter, I go to the Y and do light resistance weight training twice a week. In summer, I do my own landscaping and yard maintenance. I try to walk 9 holes of golf weekly.
3. I avoid stressful situations. I'm retired, so this is pretty easy for me. If you're working and/or raising little people, stress comes with the territory. Learning to control your reaction to stressors will help.
4. Take some time to be good to yourself - meditation, a nap, a walk in the park, a cup of tea, doing something that makes you feel better about yourself.

When I was first on high dose pred, I regained the 25 pounds I lost at disease onset plus about 20 more. For me, most of the weight gain was belly fat. My face was slightly fuller, but I didn't get the buffalo hump. Doing most of the above (the eating habits were tougher to break until my wife and I both got onto the same plan), I've gotten back down to my pre-wegs weight. I still have a few extra pounds around my middle, but most of my clothes fit ok again. I feel really good. I'm happy. I'm pretty much leading my pre-wegs lifestyle.

Hope this is useful info for you. Good luck!

[Alysia]

Hi. Pred is not enough. Are you getting anything more ?

[annekat]

Amy.r...I have been on Prednisone for a long time and started out on 80 also. I had the same problem with weight gain and the moon face. I was lowered down to 5 mg now because they put me on methrotrextate. It is suppose to take the place of the Prednisone. They raised me up and down depending on the blood work. The methrotrextate allowed me to tamper my others done. Unfortunately that is the side effects and my Dr said there is nothing you can do about it.... 80mg IS a lot to be on, and many of us were started at 50 or 60mg. We do have the side effects, but some have them more intensely than others. Most notice them becoming less pronounced when we've tapered down to 20-30mg or less, though they can still happen, and some are troubled by them even at low doses. I don't think it is true that methotrexate takes the place of prednisone. They are usually prescribed together. I think it is true that MTX may be considered "steroid sparing", that is, a larger dose of MTX may mean you need less prednisone. But pred, primarily an anti-inflammatory, is usually with us throughout our treatment and beyond, along with whatever immunosuppressants, such as MTX, we are taking. Some are able to get off the pred and just take the MTX, or get off the MTX and just take a low dose of pred. This would be pretty much at the stage of medicated remission, not while the disease is still active. As for a pred substitute, I've heard of people using hydrocortisone, another steroid, instead. I don't remember the benefits or why this was decided, but might be able to find out. This would be a good Google search, plus I think I have a contact for some of that info.

[Alias]

I was started at 60 mg, and yes indeed the side effects are very unpleasant. I had insomnia, weight gain, moon face, mood swings... the whole nine yards. As far as I know there is not really a good alternative and we just have to grin and bear it until symptoms are under control and we can start to taper off.

For me things improved markedly (regarding side effects) once I got below 20 mg. I started pred in Feb 2014 and am now down to 2.5 mg. I have an appt next month and have my fingers crossed that I can go off it completely then. However, I understand and expect that there will be times when I have to go back to it.

[MaxD]

I started with 75mg for a month, tapered down slowly and got off prednisone after 9 months. While on high dosage I lost 15lbs - at first I thought that was because of my low-carb diet (recommended by a doctor, limited to 100gms carbs daily), but in retrospect it was the disease that caused the weight loss. I did suffer insomnia, but that was to be expected. Fortunately, no rage to speak of. But what I did suffer from for a long time was prednisone withdrawal - significant joint and tendon pains and fatigue. It hit me hard when I tapered down to 7.5mg but my doctors encouraged me to get through the pain and discomfort and keep tapering (and I thank them for that). For several months I didn't exercise at all (bad idea). Now, after 7 months off the drug, my energy level has increased and I exercise regularly (though my legs get fatigued when I'm standing or walking for a long time).

As for alternatives, there really isn't one. Presumably you are on other immuno-suppressives to deal with the disease and on how well those work will determine how quickly you can taper down on the prednisone. The only things I can recommend are restricting carbs (to control blood sugar and weight gain) to around 100gm daily, checking for bone loss, vitamin D and B-complex suppplements and calcium if needed, and mild to moderate exercise throughout.

Good luck, and hope you feel better soon.

[annekat]

Here is a search result I found, full of Sangye's threads discussing her switch from prednisone to hydrocortisone, and the reasons for it. This was in 2011, and I don't know if she is still on it or how things are going in general, but last I heard, she was doing pretty well.
http://www.wegeners-granulomatosis.com/forum/search.php?searchid=743867

What I got from this is that hydrocortisone's side effects may be similar but a bit easier to tolerate than those of pred. BUT what I also got was that it is used primarily for people at the LOW end of pred dosage who are having trouble tapering off it and getting their adrenals to resume their normal function, and NOT for people who are still relying on pred to control their disease. They still may be using an immunosuppressant such as RTX or MTX for maintenance, I think. But a doc has determined that reducing pred is not really stimulating disease activity, but more that ANY pred use, even a very low dose, is preventing the adrenals from working and thus causing withdrawal effects when lowered further or stopped. Apparently hydrocortisone has less of a tendency to do that. (I hope that is a somewhat accurate paraphrase of what she said.) ANOTHER reason to use it at that stage is because it allows testing of adrenal function while taking it, which pred apparently doesn't, so her docs could see if the adrenals were actually coming back on board, without stopping the med.

I hope this will be helpful to someone, if not to those currently on high dose pred. It is an interesting chronology, as always clearly and informatively written by our friend Sangye.

[doodles2008]

Love and serious hate relationship is the best way to explain prednisone hell!! I become the round mound of rebound on it, so avoid the mirror at all cost! It does help and I started at 60 MG this time around and weaning down to 30 MG presently and having Rituxin Infusion weekly and then an four additional months once a month! I am C Anca Positive for Wegeners/GPA...limited in that it does nut appear to show up in my lungs or kidneys but it is in the upper air Tracht, eyes, sinuses, and ears! Currently the treatment seems to be working please read my profile for additional history on my case!!! Any suggestions on anything related will be helpful so glad to know you all are out there and that we are not alone!! Most people I think know nothing about this disease and think we're making it up, they are much kinder than that, but most symptoms are unseen and hard to explain just feel like crap most of the time!!


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[Debbie C]

Hi. Pred is not enough. Are you getting anything more ?

I always hear that pred is not enough but that is all I have been on for almost 4 years now and some people are drug free. And thank god I have been good.
I was given ctx and 100 mg of pred a day at first for 6 months and I thought I was going crazy. Those things you mentioned are ALL side effects of pred and once you get on a lower dose things will improve.

I used to to see a Dr. Jerry Springer that worked at CC. If its the same one ..I didn't like him at all. He wanted me to take Imuran without testing to see if I can and he didn't want me seeing other drs. for this. He was also changing all kinds of my meds. At the same time I was also seeing dr Huffman at CC. ( Dr. Springer just came to my town twice a week so it made it easy ) but when I told him I wanted him to consult with Dr. Huffman before making changes he got mad and refused to treat me. Turned out good for me ! Good luck

[Alysia]

I always hear that pred is not enough but that is all I have been on for almost 4 years now and some people are drug free. And thank god I have been good.
I was given ctx and 100 mg of pred a day at first for 6 months and I thought I was going crazy. Those things you mentioned are ALL side effects of pred and once you get on a lower dose things will improve.

I used to to see a Dr. Jerry Springer that worked at CC. If its the same one ..I didn't like him at all. He wanted me to take Imuran without testing to see if I can and he didn't want me seeing other drs. for this. He was also changing all kinds of my meds. At the same time I was also seeing dr Huffman at CC. ( Dr. Springer just came to my town twice a week so it made it easy ) but when I told him I wanted him to consult with Dr. Huffman before making changes he got mad and refused to treat me. Turned out good for me ! Good luck

I am glad that you can make it only on pred and that eventually you got to have the better doc.

[annekat]

I always hear that pred is not enough but that is all I have been on for almost 4 years now and some people are drug free. And thank god I have been good.
I was given ctx and 100 mg of pred a day at first for 6 months and I thought I was going crazy. Those things you mentioned are ALL side effects of pred and once you get on a lower dose things will improve.

I think when they say pred is not enough, they mean at the earlier stages where the disease is definitely active and not controlled. 100mg. of pred a day for a year? No wonder you felt crazy! That's twice the amount I had for only about 3 weeks (or maybe I had 60mg. to start, not sure.) I do seem to remember you having some trouble with the CTX... did they keep you on that for awhile, and did it help you at all? It would seem unusual for someone to get better mainly on pred alone, and still not be having flares, etc., after 4 years. But I supposed there are always exceptions! I know you still see people at the CC and that you are in good hands, I just thought you were probably getting RTX infusions in addition to the pred. I'm glad you are doing so well at a low dose of pred!

[Debbie C]

No Anne,when I was first dxed I was seeing a reumy down here,who didn't believe I had wg even after the biopsy. He was a young dr and cute who thought he was all that and a bag of chips !!! But he put me on ctx,pred Fosamax and folic acid for 6 months and then stopped EVERYTHING. Shortly after that my numbers were rising so I went to other reumys. I had 1 rtx infusion which didn't go well and tried all the other meds which I could not tolerate so that left me just on pred. But it makes me wonder if I have gone so long being well ( knock on wood ) that if all those drugs are absolutely necessary. I would have been taking drugs for 4 years that I didn't need ????????????? I realize that for some with worse issues that these drugs are life savers but they may not be needed by all.

[Debbie C]

By the way Anne..love your pic !!

[annekat]

Deb, I remember you having some lung issues, and it seems the 6 months of CTX must have helped with that. Though that cute young rheumy does sound pretty inexperienced. Well, anyway, you are just another case in point that everyone is different, I guess, and I hope it continues to go well with just the pred. At least we know you have good docs in case anything takes a turn for the worse. Knock on wood, it won't!