Seeking diet rec. for long term prednisone use

[bearfx]

I guess I should start by saying I know prednisone is very different from anabolic steroids, and has the opposite effect. In my case, I was diagnosed with an autoimmune disorder called ITP (Immune Thrombycytopenia Purpura, or Idiopathic Thrombocytopenia Purpura). It is a condition where the bodies immune system tags platelets for destruction... and my immune system works really really well.

Without prednisone, my platelet count will drop below 10,000 within a few days. In order to maintain a level above 50,000, I have to take 100mg/day or prednisone. I have tried other therapies, but they have not been effective at maintaining a safe platelet level. When I next visit my hematologist, I will be asking to try weaning prednisone (again) and trying danazol, which some people have had luck with.

Before this started, I worked out hard, and tried to eat right. Unfortunately, I am starting to feel the effects of taking so much prednisone for so long. I was (naturally) 210 lb, around 12% BF. I lifted hard, and jogged 10-15 miles a week (usually 3 5-mile jogs). Even though I have tried to maintain my workout at previous levels, I have begun failing. I find that I am able to lift less, and I wear out a lot faster. I have lost muscle tone, gained fat, and become lethargic. Needless to say, I don't like it.

So I am trying to alter things. I will alter my workout, alter my diet, alter anything I need to. I never wanted to become the "average joe", and don't intend to start now. So, I am in this forum asking for advice on my diet. What can I change, what can I improve, how can I reverse what is happening to me...

Morning -
- 1 c oatmeal, 4 egg whites, grapefruit/orange/grapes/or similar fruit

MidMorning
- carrots & cottage cheese. (If I am really busy at work, I will make a soy based meal-replacement shake, with something like 20g protein, 20g carbs, 4g fat)

Lunch
- 1/2 c brown rice cooked with mushrooms, 1/2 c of some beans (usually black or lima), spinach (usually frozen), lean meat (usually chicken or fish. lean steak about once a week)

mid-afternoon
- I am usually pretty rushed here, I generally choke down a can of tuna and snack on either some baby carrots, bell peppers, or sweet peppers.

Dinner -
- salad (basic lettuce salad, with palm hearts, artichoke hearts, or something similar added to liven things up. No dressing.
- lots of greens (spinach, green beans, kale, seaweed salad, or similar)
- fish, chicken, or beef (Most often salmon, followed by mahi mahi, tilapia, chicken, then beef)

The exact amount I eat varies depending on how I feel, but I traditionally go for 2500-3000 calories a day, and strive for a 40/40/20 mix. I stay away from refined sugar, white bread, white rice, and anything processed. I drink a couple of glasses of skim milk each day, and ~2 gallons of water (usually mixed with a little lime juice for flavor).

Although I would like to stop the prednisone, I will likely be on it for years. I hate the weight gain, and hate the way I feel on the crap some days, but I hate the idea of bleeding to death even more

Other than the prednisone, the following are the medications and supplements that I take.
- claritin
- Multivitamin
- multi-B vit
- selenium
- flax seed oil
- Vitamin C (around 300mg, not one of the 1500mg horse tabs)
- Calcium

Other than the ITP, I am a fairly healthy individual. My last round of blood tests showed the following
- elevated WBC (also indidual counts were off. This is an effect of the prednisone
- elevated bilirubin ( most likely an effect of ITP. Although most platelets are removed by the spleen, the liver gets involved as well).
- low phosphorous
- low B12
- Everything else is within normal ranges

 

[*Bunny*]

Aww, my heart & well wishes go out to you ... UGH Prednisone ... I gained 50 lbs from it and I couldn't train at the time I was on it. I did some past research on it but I'd have to look through my books at my house to find anything I documented on the subject after discussions with my doc on the matter. But like you, I was more concerned with staying alive then the weight gain.

Your diet structure sounds good to me. As long as you're getting to the gym & training to the best of your ability, this should help minimize some of the physcial sides from this drug.

 

[alex2678]

Prednisone's a nasty drug for anyone. It's been known to dramatically lower potassium levels for some people, so I'd throw a bannana in there if you could, just in case. Make sure you get enough sunlight or take a calcium/Vitamin D supplement as it affects bone density as well. I found one article on some herbals counteracting prednisone's side effects if it helps any:

http://www.planetherbs.com/showcase/docs/counteracting_the_adverse_side_e.htm

Best of luck and keep us posted on how you're doing.

 

[*Bunny*]

Seems like you know the majority of this information already but this site can give you some other basic guideslines to follow.

http://www.gihealth.com/html/education/drugs/prednisone.html

You may want to contact others or read their stories of success in dealing with ITP ...

http://www.itppeople.com/success.htm

 

[bearfx]

I am a member of the platelet disprder support association, and participate in their forums. It is a good organization, and it helps knowing that I am not the only one experiencing this problem. I just wish some of the other therapies worked for me.

I tried the WinRHO SDF, and saw a dramatic increase in platelet counts over a one week period (up to 300,000) , but by the second week I was back to 60,000. At $14,000 per treatment, it just isn't that great a return on the investment. IvIG works for me as well, but costs twice as much, and lasts the same length of time. Dapsone was ineffective, Rituxan is not covered by my insurance because it is not approved for use with ITP. I am very leery of trying the stronger immune suppresants or chemotherapy drugs, so right now I am pinning my hopes on Danazol... we will see

Last night, for the first time I can ever recall, I woke up with both of my feet cramping. Even when it finally stopped, I could'nt wiggle my toes without them wanting to start again. I will definitely add bananas to my diet, and increase the calcium, and add Vit D.

I will look into the herbal formulas as well. I should probably discuss it with my hematologist first, but I am willing to try almost anything.

Thanks for the advice.

 

[*Bunny*]

I am a member of the platelet disprder support association, and participate in their forums. It is a good organization, and it helps knowing that I am not the only one experiencing this problem. I just wish some of the other therapies worked for me.

I tried the WinRHO SDF, and saw a dramatic increase in platelet counts over a one week period (up to 300,000) , but by the second week I was back to 60,000. At $14,000 per treatment, it just isn't that great a return on the investment. IvIG works for me as well, but costs twice as much, and lasts the same length of time. Dapsone was ineffective, Rituxan is not covered by my insurance because it is not approved for use with ITP. I am very leery of trying the stronger immune suppresants or chemotherapy drugs, so right now I am pinning my hopes on Danazol... we will see

Last night, for the first time I can ever recall, I woke up with both of my feet cramping. Even when it finally stopped, I could'nt wiggle my toes without them wanting to start again. I will definitely add bananas to my diet, and increase the calcium, and add Vit D.

I will look into the herbal formulas as well. I should probably discuss it with my hematologist first, but I am willing to try almost anything.

Thanks for the advice.

I've read somethings on having the spleen removed, is that a possiblity? I am not diagnosed ITP but I've taken quite a few things associated with it. I've been on Rituxan as well, and had a great run with it, but also exhausted it's dosing. Also Vinchristine which did cause some nerve damage issues, but have improved over time. Insurance can really BITE ...

I agree on adding the potas, Calcium, D & even a little more C. Best of luck to you.

 

[alex2678]

Bunny's right about Vitamin C too. A couple studies showed that high intakes of vitamin C can decrease side effects associated with corticosteroids. Zinc and Vitamin B-6 are also heavily depleted with the drug too. If you're not getting enough from your diet you might want to add it in supplement form.

 

[bearfx]

Removal of the spleen is a last ditch option. It produces sustained results in 60% of cases. The problem is, it is a permanent solution whether it works or not, and limits future possible treatments. As long as I have my spleen, I can receive IvIg in an emergency.

I added a couple of bananas to my diet today, and have increased my B supplements, C supplement, Calcium, and D. I am also adding Glucosamine and Chondrotin to help combat some of the joint problems that occur with pred, and will take your advice and throw in some Zinc.